End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes

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Unresolved pain can occur in people with a terminal illness such as dementia. However, pain management in people with advanced dementia is often suboptimal and inadequate, with fewer palliative care interventions than offered to cancer patients. Although they are largely responsible for the care of these people, few studies have addressed the experiences of registered nurses in this respect. Therefore, the aim of this study was to describe the experiences of nurses in caring for people with advanced dementia and pain at the end of life. Methods The study had a descriptive explorative design. Individual qualitative, semi-structured interviews were carried out with thirteen nurses from twelve nursing homes in Sweden. The results were analysed using thematic content analysis. Results The nurses described communicative, relational and organisational challenges. One major issue involved difficulties in communicating with the person with advanced dementia, resulting in uncertain pain assessment. Other difficulties involved the differentiation of pain from anxiety, the balance of benefits and risks with morphine administration, and the creation of good relationships with healthcare personnel and the persons’ relatives. Relatives can greatly affect the assessment and management of pain, both because of their ability to interpret pain behaviour and by questioning the care given. Good pain management was facilitated by good communication and relationships with healthcare staff and relatives, extensive professional nursing experience, and already knowing the person with advanced dementia. Conclusions This study highlights the need for nursing homes to employ specialist nurses who have been trained in the appropriate knowledge and skills to deal with the challenges of end-of-life care for people with advanced dementia and pain. Additionally, there should be resources and strategies available for providing information to family members and for involving them in the decision-making process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administer morphine or not. Nursing Dementia pain end-of-life caring nursing home nurses education Background Dementia is a progressive, untreatable condition that includes cognitive impairment, neuropsychiatric symptoms and loss of independent function. Associated with it are complex needs with high levels of dependency and morbidity, especially in advanced dementia. There are about 50 million people with dementia worldwide and the number is expected to triple by 2050 [1]. In Sweden today, approximately 140 000 people are living with dementia [2]. The incidence rises exponentially for those aged between 65 and 90, doubling approximately every five years [3]. Sweden has one of Europe’s fastest-growing populations of elderly citizens, where one in five is 65 or older, therefore an increased dementia-based public health burden can be expected. People with dementia tend to want to stay at home, but as their condition progresses and they experience the need for full-time care, many moves into nursing homes. The majority of nursing homes in Sweden have beds both for people with physical diseases and for those with dementia, and more than half of the nursing homes have specialised dementia units [4]. Currently, almost half of the Swedish people with advanced dementia are being cared for in a nursing home [4]. The county councils are responsible for providing residents with medical care and the local municipalities for care of elderly in the home or at special accommodations, such as nursing homes [5]. Physicians are not usually employed by the nursing home but visit for a period each week and due to the shortage of physicians, geriatricians from geriatric clinics often provide medical and geriatric care at nursing homes [6]. Therefore, registered nurses [termed nurses from here on] have to assume responsibility for the care of these persons, who often have complex health problems [7]. Nurses also play an active and important part in assessing and relieving pain and suffering [8]. At nursing homes, primary care physicians are in charge of residents’ care. Palliative care for people at the end of life is in Sweden divided into general and specialised palliative care [9]. General palliative care is provided to patients whose needs may be met by staff with basic caring knowledge. Such care is conducted in municipal care and caring homes in collaboration with primary care. Specialised palliative care is provided to patients with complex symptoms or special needs, conducted by a multi-professional team with specialised knowledge and expertise in palliative care. This care is offered within a specialised palliative care unit or in advanced home care. Persons with advanced dementia at the end of life are given general palliative care at regular nursing homes. People with advanced dementia at the end have complex needs and, as they gradually become more and more dependent, the need for nursing care increases [10]. Like the rest of the elderly population, people with dementia struggle with physical challenges such as rheumatoid arthritis, which causes considerable pain. When the person is nearing the end of their life also recurrent infections and/or pressure ulcers can sometimes be painful. Additionally, they have a higher burden of co-morbid physical disease and a greater symptom burden than people without dementia, while also struggling to verbalise [11, 12]. For example, pain, shortness of breath and agitation are common symptoms or consequences of comorbidity that increase in people with dementia shortly before death [13]. If the person has other life-limiting conditions that can cause pain, such as cancer, their condition is likely to worsen more predictably [14-16]. Studies have shown that persons with dementia living in nursing homes risk receiving suboptimal pain relief [13, 17]. Nurses can assess pain through a variety of pain assessment tools [18], but the quality and utility of these tools have been questioned [19-21]. Further, opioids are usually the first choice for analgesia at the end of life [22], but there is evidence that those with advanced dementia respond poorly to opioid treatment and experience more harmful side effects than people without dementia [22, 23]. Since persons with dementia at the end of life find it difficult, or are unable, to self-report pain, many of the available pain assessment tools cannot be used [24]. Therefore, suitable pain assessment tools for this population have been developed, such as Abbey Pain Scale and Doloplus 2. Nurses in nursing homes play a crucial role in pain management for residents with dementia at the end of life, but few studies have elicited their perspectives in this context. Therefore, the aim of this study was to describe the experiences of nurses caring for residents with advanced dementia and pain at the end of life. Methods A descriptive explorative study design was used. Data were collected from qualitative semi-structured interviews. This data collection method allows participants to provide more information, such as feelings and attitudes, and their understanding of the subject. [25]. Settings and participants All participants were recruited from nursing home s units specialised in dementia care in Stockholm, Sweden. Inclusion criteria were at least one-year of practice as a registered nurse in a nursing home and experience of end-of-life care for residents with advanced dementia and pain. Sixteen of the forty-six administrative managers at the randomly chosen nursing homes permitted the study. These managers, on behalf of the researchers, distributed a letter of invitation and information about the study to nurses who met the inclusion criteria. The high workload, on-going reorganisation of the wards, and requirement for extensive experience of end-of-life care for residents with advanced dementia and pain made recruitment of a sufficient number of participants challenging. In the end, the sample consisted of thirteen nurses from twelve nursing homes: ten women and three men (Table 1]. The participants had an average of ten years’ experience in dementia nursing care, ranging from one to fifteen years. Eleven nurses had a bachelor’s degree in nursing, while two had graduated earlier when training comprised a two-year programme. None had specialist training in palliative, geriatric or dementia nursing. Ethical considerations Ethical approval for site participation was not obtained, as this is not required in Sweden for non-interventional research which poses no identified risks for study participants and does not require the processing of sensitive data [26]. Nevertheless, the study followed accepted ethical standards, as outlined in the Declaration of Helsinki [27]. As part of the consent process, participants were informed that participation was voluntary and that consent could be withdrawn at any time without explanation. Participants were also assured, in both written and oral form, that data would be handled confidentially and that the results would be reported in such a way that identification of the informants was not possible. The collected data were handled in line with the EU General Data Protection Directive. All identifiers were removed from the transcripts before they were distributed to the research group and the data were stored securely in a password-protected computer. Signed consent forms were collected before inclusion. Table 1. Characteristics of the participant nurses (n = 13) Gender Female 10 Male 3 Age (years) Range 66 66 10 Education Bachelor’s degree (3-year) 11 Nursing programme (2-year) 2 Specialist nursing degree in palliative, geriatric or dementia nursing 0 Years working as a nurse Range 2 to 37 Mean/median 21/20 Years working in dementia ward at a nursing home Range 1 to 15 Mean/median 10/10 Data collection Individual participants were interviewed according to an interview guide (Table 2). The guide was developed from a review of the literature and the questions were guided by the study aim. The questionnaire consisted of semi-structured, open-ended questions, with follow-up questions for further clarification. Before the interview, the interviewer informed the participants that the questions would be focused on the last weeks and days before the persons’ death. A pilot interview to test intelligibility and suitability led to minor adjustments. After oral and written consent, individual interviews by the first author were scheduled between February and April 2018. The digitally recorded interviews took place during work hours at the nursing homes. They lasted between ten and thirty-two minutes, with an average of twenty-one minutes. No prior relationship existed between the nurses and researchers. Table 2. Interview guide - Can you tell me how you assess pain in end-of-life care for residents with advanced dementia? - Can you tell me how you administer pain relief to residents with advanced dementia at the end of life? - Can you tell me a positive experience of pain management in a person with advanced dementia at the end of life? - Do you sometimes find it a challenge to assess pain in residents with advanced dementia at the end of life? - Can you tell me about your experiences of providing pharmacological pain relief in residents with advanced dementia at the end of life? - What do you think the prerequisites are for giving good pain relief at the end of life? - Is there anything else you would like to tell me about pain assessment and pain relief in residents with advanced dementia at the end of life? Data analysis The data were analysed using thematic content analysis [28]. To obtain an overall view of the data, one of the researchers (EL) read the verbatim transcriptions repeatedly. Short notes (codes) in the margins were used to summarise the content. Next, distinct categories were formed by searching for similarities and differences among the notes. Then the number of categories was reduced by merging similar ones and discarding those not relevant to the study. Lastly, the data collected for each category was colour-coded and copied into the relevant page. Patterns between the categorised pages led to the formulation of themes. Table 3. Example of the analysis process. Meaning units Codes Category Theme When they cannot express if they are in pain nor grade their pain. Then it is about me and my ability of assessing their expressions, to look at face expressions and body language, movements, pallor or cold sweat and physical signs...you need to understand if it is about pain or if it is about anxiety or if it is an combination. Interpretation of pain Signs of pain Lack of verbal communication To distinguish pain from anxiety Uncertainties when assessing pain Communication challenges: assessing and relieving pain Results The results described the nurses’ experiences of end-of-life care for residents with advanced dementia and pain, using three themes: communication challenges, relational challenges, and organisational challenges. Communication challenges: assessing and relieving pain a) Uncertainties when assessing pain Many nurses found it challenging to assess pain. A common cause of uncertainty was when the cognitive impairment of dementia affected the person’s ability to verbally express if they experienced pain, which becomes a barrier to assess if pain medication has achieved an optimal level of pain relief. As one nurse said: “It is difficult, because most of them you cannot ask and get a clear answer from” (Nurse 11). The nurses thought that asking the residents with advanced dementia about their pain was the first step in pain assessment. When verbal communication was impossible, the nurses then focused on the interpretation of pain expressions: verbal expressions such as groaning and screams, and nonverbal expressions such as anxious behaviour and body language including facial expression. Several nurses found distinguishing pain from anxiety challenging: “It is really hard to assess pain and it is not easy to interpret whether it is about pain or anxiety” (Nurse 6). The similarity of expressions of pain and anxiety made the nurses feel uncertain. Another communicational challenge that caused uncertainty was if the nurses lacked an earlier relationship with the residents with advanced dementia. That made pain assessment more difficult; for example, it is then impossible to compare current behaviour with past behaviour. As expressed by one nurse: It felt tough because I didn´t know her from before...I couldn´t know if she had behaved like this before and that made it difficult. It helps so much if you have been taking care of the person for a while. (Nurse 10) As lack of verbal communication was the primary reason for difficulties with pain assessment, several nurses emphasized the importance of communication skills and suggested that professional experience developed their abilities: It demands skill to be able to assess whether a person with dementia is in pain ...you need to be really good at communication to sort this out...and this is something you have to learn through practice. (Nurse 5) Most of the nurses used the Abbey Pain Scale assessment tool. However, some of the nurses did not use any assessment tools at all, believing that the available tools were inadequate, or that there were no guidelines at all. Instead, these nurses assessed pain by intuition. b) Uncertainties when administering pain relief Similarly, these nurses used an intuitive approach to decide the morphine dosage. This situation made it hard to achieve the correct balance between optimal pain control and optimal safety. Safety is an issue because the most commonly used pharmacological treatment is subcutaneous morphine by injection. The nurses found it difficult to achieve the right dosage balance, avoiding doses that were too small for adequate pain relief and those that were so generous that respiratory depression resulted. As one nurse said: Then one is a bit careful as morphine is a problem, i.e. it affects the respiratory centre … One does not want to sedate someone, despite having reached the end of life – you try to give just the required pain relief... (Nurse 6) Thus, the nurses tried to find the dose that made the person peaceful and pain-free and felt satisfaction when they succeeded. As one nurse described it: “It’s really difficult to find a balance, to find the exact dose ... it is very positive seeing a person relaxing and not expressing pain” (Nurse 7). Despite worries about respiratory depression, several nurses believed it was better to administer morphine generously and preferable to give a bit too much rather than too little: “Well, yes, my point of view is that it is important to give something, and rather a bit too much than too little” (Nurse 11). The difficulty of distinguishing pain from expressions of anxiety made several nurses adopt the strategy of combining morphine injections with midazolam injections for anxiety. As one nurse expressed it: I noticed I had to relieve both pain and anxiety and he was so tense before, and after injections of morphine and midazolam he got so relaxed; they go hand in hand, pain and anxiety...it is not unusual that we combine medications for pain and anxiety. (Nurse 8) Relational challenges: the influence of relatives Mostly, relatives were perceived as a positive factor when caring for the dying person with advanced dementia, but they could sometimes negatively influence the administration of analgesics. Several nurses viewed relatives as significant resources in pain assessment, as relatives were often familiar with the earlier behaviour of the residents with advanced dementia and could interpret their behaviour for the nurses. One nurse said that a grandchild had been “really alert when she sat beside her grandmother’s bed; she immediately signalled to us when she saw signs of pain” (Nurse 1). The presence of relatives beside these residents with advanced dementia is important in itself, and they were usually called in by the nurses when they were approaching death. Family members sometimes asked for an ongoing relationship with the healthcare staff, so they could actively influence and help with the care. At other times relatives could pose a challenge; this could happen, for example, when the person was administered analgesics. The relatives could be uncertain about or even afraid of morphine, and “the atmosphere in the room can change immediately when morphine injections are about to be administered” (Nurse 10). If relatives believe that their next-of-kin is not adequately relieved of pain, nurses often comply with their wishes for more pain medication: Relatives often want the person to receive a lot of analgesics; of course, they don’t want them to suffer, and sometimes you listen to them, and sometimes you give an injection maybe more for the sake of calming down the relatives a little, to satisfy them, to make them feel at ease. (Nurse 9) In some cases, relatives reportedly insisted on sending the person to the hospital because they thought that they were not adequately relieved of their pain. In other cases, relatives at the bedside asked the nurse to give as little morphine as possible, either because they were afraid that the drug could provoke the person’s death, or because they feared that the person could become addicted. Relatives’ attitudes toward morphine were often mentioned as the most complicated issue related to pain medication. This often caused stress or, as one nurse put it: “It’s a pressure, to be surrounded by questioning relatives” (Nurse 5). The nurses thought that the whole process of administering morphine could be strongly facilitated if they communicated closely with the relatives, exchanged information with them, and gave them good reasons for administering morphine. Organisational challenges a) Time constraints Several challenges at an organisational level were mentioned by nurses as barriers to the provision of good quality, person-centred palliative care for those with advanced dementia. Several nurses emphasised the importance of being readily available in order to relieve the pain effectively. This can be crucial, as having nurses present “can relieve pain that comes from anxiety and loneliness” (Nurse 6). If residents with advanced dementia are left alone, they can feel lonely, which can create or increase physical and psychosocial pain. As one nurse expressed it: Many things are important when it comes to pain, not least the psychological part. If a person feels exposed and feels like no one is there and no one cares about them, then I think they will feel more pain. (Nurse 9) Many nurses reported that understaffing, limited time and heavy workloads made it difficult to provide adequate care and attend properly to residents with advanced dementia. The nurses wanted healthcare personnel to stay with the dying person when relatives were not present. However, sometimes the workplace did not permit additional healthcare personnel because of economic barriers, causing the person with dementia to die alone and in pain. This made the nurses feel powerless and helpless: “It is miserable to know that a dying person is alone and has nobody present ... because staff presence is insufficient” (Nurse 6). Their heavy workloads often prevented nurses from staying with the person who was dying: We nurses are so few that we don´t have the time to sit and hold someone´s hand and try to comfort them ... most of the time we are sitting down documenting [the work]. I hardly find time to be among the residents. (Nurse 7) Time constraints were commonly described as a significant barrier to the nurses being readily available to persons with advanced dementia. This was commonly lamented: “If I could wish for something, it would be more staff and more resources” (Nurse 13). b) Lack of knowledge and competence Another organisational challenge often mentioned by nurses was the apparent lack of professional competence and ability to apply a palliative care approach according to the philosophy of palliative care. All healthcare personnel were seen as necessary by nurses but sometimes when healthcare personnel lacked sufficient competence (such as sensitive awareness or an appropriate personal attitude) to handle the complex palliative care demands, it could become challenging. As one nurse said: I have seen that persons with dementia can be more or less calm according to which staff are working… If there are anxious staff working, so to speak, if they talk loud, if they are stressed or something, then the person with dementia can also become worried and experience more pain… Meeting people with dementia is an art that is so important – to calm them and treat them with respect. (Nurse 9) The nursing homes in this study were staffed by physicians who did not spend the majority of their practice caring for persons with dementia. The physicians often stated that there was no maximum morphine dose, but that it was important to start with a small dose and then titrate it until the person was comfortable. Many nurses in this study were responsible for determining the amount and frequency of morphine administration, even though no nurses had specialist training: …Most often doctors prescribe no upper limit for the total administered dose, which means that I as a nurse have the greatest responsibility here when it comes to pain relief at the end of life. (Nurse 13) Some nurses felt that this was a challenge and that the responsibility for morphine became greater during palliative care, with increased demands on the nurse's knowledge and competence. Lastly, the nurses mentioned that they often co-operated with healthcare personnel and that they found this very important as those personnel often cared more directly for the person with dementia and therefore were better able to perceive their pain. On the other hand, healthcare personnel often lacked essential knowledge or experience relating to pain management: “Lack of knowledge is one reason for it not working so well with healthcare personnel ... knowledge improves everything and provides the prerequisites.” (Nurse 12) Some nurses experienced difficulties with stand-in or temporary healthcare personnel as they did not know the person with advanced dementia and were unaware of their baseline behaviour. This increased the risk of missing signs of pain and not reporting them to the nurses, as one nurse described: “When I entered the room, I noticed the person was really in pain, and I questioned the healthcare personnel: why haven't you said something to me?” (Nurse 9) Discussion This study found that nurses caring for residents with advanced dementia and pain at the end of life are facing communication, relational and organisational challenges. Communication challenges Although unresolved pain can occur in residents with advanced dementia at the end of life, pain relief is a priority in palliative care; however, nurses reported that, as persons with advanced dementia often lose their ability to communicate, pain management becomes very complex. Pain is a subjective sensation and not being able to communicate with persons with advanced dementia makes nurses uncertain of whether there is pain and, if so, whether it is being adequately managed. This corresponds to findings in the literature that pain assessment is challenging in people with dementia, because of their inability to understand and answer questions [29]. Even when nurses suppose that a person with dementia has pain, they find it difficult to assess the intensity and the kind of pain [30]. In this study, the nurses used either the Abbey Pain Scale assessment tool or no assessment tool at all. Many found the Abbey Pain Scale inadequate. These findings echo those of other studies where nurses in nursing homes have often found existing pain assessment tools inadequate [29, 31, 32]. This scepticism seems warranted. Lichtner and colleagues [18] assessed the reliability, validity and clinical utility of 28 pain assessment tools for people with dementia, including the Abbey Pain Scale, but could not recommend any particular pain assessment tool because of non-conclusive evidence. However, it is alarming that some nurses assess pain by intuition, without using assessment scales. The assessment and documentation of pain are needed in order to improve management of pain and should therefore be built into nursing homes care systems. Using an assessment scale instrument to evaluate pain routinely makes it more likely that the staff will notice pain and swiftly act accordingly. The National Board of Health & Welfare in Sweden also recommend use of scales such as Abbey Pain Scale and Doloplus 2 in this population, as pain is more likely to be recognised when routinely using an assessment scale, and because these scales are developed to assist assessment of pain in non-verbal individuals with end-stage dementia. They require minimal time to complete and are easy to understand. In addition, educational interventions for all nursing home staff, to improve knowledge and attitudes, could be a key and a significant step forward to increase the end of life care for frail older people in care homes but also for the possibility to evaluate interventions. End-of-life care for residents with complex pain status and advanced dementia is a clinical and ethical challenge and the body of knowledge about pain management for this patient group is limited [13]. The administration of morphine injections becomes problematic for nurses when they are uncertain about the resident’s pain status. The most challenging aspect is finding the right balance between providing adequate pain relief and avoiding respiratory depression. Many nurses said that they would rather administer morphine with generosity than risk giving too little. This attitude is in line with a study of Brorson and colleagues [30], where nurses expressed a will to overtreat rather than undertreat pain, despite being mindful of the risk that they could cause a hastening of death. Residents with dementia in pain at nursing homes are often undertreated and require increasing dosages of opioids during the last week before death [13]. Therefore, opioid treatment (if possible, in oral form, otherwise transdermal patches or intravenous) should be initiated early at a low dose and titrated slowly along with registering adverse events [33]. Without doubt, pain is a personal experience influenced by many different factors, a combination of physical, emotional, social, and spiritual components, which has led to the concept of “total pain” [34]. A related issue involves the difficult clinical distinction between pain and anxiety. In line with previous findings [30, 35, 36], we found several nurses who experienced difficulty in distinguishing pain from anxiety. Likewise, Gilmore-Bykovskyi et al. [29] found that nurses feel uncertain about whether behavioural changes indicate pain or are related to other causes. Because the nurses were unable to define the exact cause of the behavioural change, administration of analgesia was delayed. Because of their difficulty in identifying pain, several nurses in our study combined midazolam injections for anxiety with morphine injections, in the belief that midazolam also relieves pain. This drug combination used at the end of life has also been reported by Wilson and colleagues [37]. In another study, nurses stated that morphine alleviates both pain and anxiety [30]. Pain and anxiety appear to be associated and we believe further research should be carried out to better understand nurses´ decisions to use pain medication or psychotropic medication when treating pain [31]. Non-pharmacological interventions have received increasing attention in the palliative care literature in recent years; however, few nurses in this study mentioned such interventions. Because pain treatment remains inadequate for many residents with advanced dementia at the end of life, non-pharmacological interventions (such as music, aromatherapy, soft tissue massage) should be tried together with medication. We hypothesise that high workloads, lack of time among nurses or lack of knowledge are the reason for not prioritising non-pharmacological interventions, and as a consequence, not mentioning this topic in the interviews. Efforts to inform and educate may increase the use of these interventions. Relational challenges The nurses in our study often mentioned relational challenges. To know and understand residents with advanced dementia, nurses must build good relationships with their relatives and be able to spend some time with the residents with advanced dementia [30, 36]. Lamaheva and colleagues [38] noted the importance of preparing early for a progressive decline in health and the inevitable end-of-life phase. Advance care planning can alleviate the burden of decision-making for both relatives and nurses who attempt to make the best decision for a resident with advanced dementia. Recurrently, the nurses in our study described relatives as a positive influence. Nevertheless, sometimes, mainly when nurses administered opioids at the end of life, the relatives´ opinions could be highly challenging. Then, nurses have to focus not only on the resident with advanced dementia but also on the well-being of the relatives. They often do so through conversations and by trying to be open to the relatives’ views and wishes [31]. We can see a need for some on-site educational support for relatives, as that could facilitate a better co-understanding of the situation for relatives and nurses. Because relatives should be included in palliative care programmes, as this is essential for understanding and learning about residents with advanced dementia, further research about cooperation between relatives and nurses should be promoted. Pain treatment will be most effective if all components of pain are explored. When a person with advanced dementia cannot communicate verbally and are not able to exercise autonomy, relatives often need to act as proxies and advocates on their behalf. In our study, the nurses identified the relatives’ need for emotional support when trying to provide good care. If the relatives hold misconceptions, for example a belief that there is a risk of opioid addiction at the end of life, or a fear that the loved ones are going to die of opioids, it constitutes a barrier to good pain treatment. Persons with pain and advanced dementia at the end of life are therefore particularly vulnerable and very dependent on their caregivers. Nurses must therefore focus on reducing the distress and burdens for the person facing death, respecting the person’s dignity, and giving person-centred pain assessment and management, so that the correct dose can be found. Being free from pain is after all considered essential for good end-of-life care [39]. However, it is also within the nursing assignments to carefully explain, educate and have a discussion with the relatives about the symptoms and treatments accentuated at the end of life. For example, relatives need to be informed that an increase in morphine dosage at the end of life is generally related to the progression of disease, not to dependence developing. Likewise, when a person with advanced dementia has forced breathing, this can be a sign of pain. After opioids, respiration may slow down, for example from 24 breaths a minute to a stress-free 10 to 12 per minute, which is not a condition of life-threatening respiratory depression [40]. In cases were relatives ask for more generosity with opioids, nurses must act in line with the principle of non-maleficence and use opioids properly to not harm the person in pain. A clear understanding of morphine treatment and its side effects is likely to promote confidence when administering morphine [37]. Organisational challenges The nurses also mentioned organisational challenges, especially in relation to good pain management. Because of economic barriers, insufficient nurse staffing has meant that an adequate nurse presence has not been achieved [41-43]. Slettebo and colleagues [44] found that although nurses wish to do more for people living with dementia and their relatives, insufficient nursing staff levels result in nurses prioritising physical needs such as pharmacological pain relief rather than psychosocial needs. This study indicates that insufficient staffing results in lonely residents with advanced dementia and could result in these people dying alone and in pain. This produced a feeling of powerlessness among the nurses. Previous studies have shown that people with dementia in a nursing home can suffer from the absence of relatives and caregivers at the end of life and can then, therefore, die in pain alone. This situation is ethically burdensome for nurses [45, 46] and should be taken seriously by care management and policymakers who set the frameworks for care. Many residences with advanced dementia at nursing homes have complex needs and even though many dies in institutional care at nursing homes, they have not traditionally provided evidence-based palliative care, instead usually offering experience-based care [47]. Palliative care should be provided for people with life-threatening disease independent of diagnosis with a focus on early identification and assessment [21]. In recognising the importance of providing both high-quality general and specialised palliative care, the Swedish National Board of Health & Welfare has established evidence-based guidelines for palliative care in line with the WHO guidelines for palliative care [9]. These were later evaluated [48]. This evaluation found that municipalities responsible for the care of the elderly in some respects do not follow the National knowledge support for good palliative care. In order to empower nurses and nursing staff in Swedish nursing homes, regarding better end-of-life pain, authors suggest implementation of an end-of-life-care framework with support from external palliative care specialists. This is showed to improve the quality of end-of-life care for nursing home residents in UK [49]. Nevertheless, one challenge regarding support from external experts is to recognize when persons with dementia has started [50] and many health professionals reportedly tend to overestimate the remaining lifetime [51]. Specialist training in palliative care can also address the need for skills in ethical deliberation. Effective pain management in residents with advanced dementia at the end of life is often conceived as an ethical obligation and the strategies proposed are motivated by ethical reasoning. To give morphine with the intention of relieving distressing symptoms, even though there is a risk of thereby shortening the patient's life, is often supported by “the doctrine of double effect”. This ethical principle says that “it is always wrong to do a bad act for the sake of good consequences, but it is sometimes permissible to do a good act knowing it might have some bad consequences” [52]. The application of this doctrine implies that doing something morally good (giving morphine to relieve pain) might potentially have a bad effect (shortening life), but that it is ethically permissible if the bad effect is not intended. In this way, healthcare professionals can use the principle to justifiably administer appropriate doses of morphine to a patient at the end of life, even though this could shorten the patient's life. Used in this way, ethics training can provide conceptual tools that justify what intuitively feels right and help to distinguish justified from unjustified cases of high dosage administration. To carry out individual expert assessments, we thus urgently need experienced, specialist nurses in nursing homes. The role of advanced nurse practitioner has been developed for a long time in the UK, US and Australia. These advanced nurse practitioners (also called advanced practice nurses or nurse consultants in the UK, clinical nurse specialists in the US, and clinical nurse consultants in Australia) are nurses with both theoretical and evidence-based knowledge who are expected to have expert skills in both complex decision-making and clinical judgement [53]. A position as an advanced nurse practitioner usually involves consultancy work as well as education and research work. While advanced clinical nursing is a common, well developed feature in many countries, Sweden has not facilitated the emergence of this profession. Based on the findings of this study, we suggest the implementation of advanced nurse practitioners for end-of-life dementia care. This would have the effect of improving patient outcomes, promoting continuity of care, supporting nursing and care teams, and stimulating research in the field [54]. Strengths and limitations The high workloads and lack of time among nurses affected our study, as we had hoped to interview several nurses from each nursing home. This was not, however, possible; only two informants were from the same nursing home, while the other eleven nurses all came from different workplaces. Several limitations of this study should be taken into consideration. The aim from the beginning was to recruit a widely varied sample with respect to the nurses' age, gender and work experience. However, because of poor recruitment and time pressure, all the nurses who volunteered and who met the inclusion criteria were included. A strategic sample would probably have provided a more varied and heterogeneous sample with participants who may have added data with wider variety (regarding age, gender and education level). The participants were from nursing homes in one city, which could indicate that the results should not be extended to other countries and contexts. Nonetheless, we achieved saturation and good representation regarding age, gender and extent of work experience in Swedish nursing homes. However, it is noteworthy that none of the nurses had specialised in dementia, palliative or geriatric nursing. Furthermore, there might be some risk of bias in that the head managers organised the recruitment of participants. It is possible that they opted for the most suitable participants, thereby masking potential problems. Despite the limitations, we believe that this study contributes essential knowledge about the complexity of caring for residents with advanced dementia and pain at the end of life. There are still many gaps in our specific area, such as whether there are differences between nurses with long and short nursing experience and how pain management is affected in nursing homes that organise work differently. There is thus a need for further quantitative research, including further assessment of best practice for the end-of-life care of residents with advanced dementia and pain. Conclusions This study shows that nurses face several demanding challenges when caring for persons with advanced dementia and pain at the end of life. One of the main issues were the difficulty in communicating with these persons, resulting in uncertain pain assessment. This results in difficulties in separating pain from anxiety and in balancing the benefits and risks of morphine administration. Relatives can significantly influence the assessment and management of pain, both as interpreters of pain behaviour and by questioning the care given. Factors facilitating good palliative care and pain management included having good relationships with the other healthcare personnel, having extensive relevant professional experience, and having enough time to care for the resident with advanced dementia and their relatives. The many challenges can affect the care of this growing and vulnerable group negatively and, therefore, it is crucial to promote more research in this area. We found that specifically trained specialist nurses are sorely needed at nursing homes in order to meet these challenges with the appropriate skills and knowledge. Additionally, there should be resources and strategies available for informing and involving family members in the care as they are often unfamiliar with the considerations involved in decisions (such as whether to administer morphine or not). Relevance to clinical practice This study suggests that there is a need for trained nurses specialising in palliative care or dementia care at nursing homes in order to meet the challenges described with appropriate skills and knowledge. There is also a need for resources and strategies for informing relatives about end-of-life care and sometimes involving them in decision-making. Abbreviations Nurses = registered nurses Declarations Ethical approval No ethical approval is required for non-interventional studies without risks or any processing of sensitive personal data taking place [SFS 2003:460]. The head of each nursing home gave authorisation for approaching the nurses. The study followed the Declaration of Helsinki (World Medical Association [WMA], 2013]. The participants were informed about the study and about the handling of personal data and were informed that personal information would be kept confidential. Written informed consent was obtained. Consent for publication Consent for publication was received from the nurses. Availability of data and material Additional data files in Swedish are available upon request to the corresponding author. Competing interests The authors declare that they have no competing interests. Funding The authors received no financial support for the research and authorship. Authors’ contributions EL and TG conceived and designed the research. EL collected the data; EL and TG analysed and interpreted the data. Both contributed equally to the writing and revising of the manuscript and both approved the final manuscript. Acknowledgements The authors acknowledge and thank all the research participants and nursing homes who supported and facilitated this research. References WHO [World Health Organization]. Geneva; 2019. Retrieved from: http://www.who.int/news-room/fact-sheets/detail/dementia . Accessed 9 Jun 2019. Socialstyrelsen [National Board]. 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Retrieved from: https://www.riksdagen.se/sv/dokument-lagar/dokument/svensk-forfattningssamling/lag-2003460-om-etikprovning-av-forskning-som_sfs-2003-460 . Accessed 12 Feb 2019 . WMA [World Medical Association]. Declaration of Helsinki - Ethical principles for medical research involving human subjects. Retrieved from: https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects . Accessed 31 Oct 2019. Burnard P, Gill P, Stewart K, Treasure E, Chadwick B. Analysing and presenting qualitative data. Br Dent J. 2008; 204(8):429-32. Gilmore-Bykovskyi AL, Bowers BJ. Understanding nurses' decisions to treat pain in nursing home residents with dementia. Res Gerontol Nurs. 2013; 6(2):127-38. Brorson H, Plymoth H, Ormon K, Bolmsjo I. Pain relief at the end of life: nurses' experiences regarding end-of-life pain relief in patients with dementia. Pain Manag Nurs. 2014; 15(1):315-23. Monroe TB, Parish A, Mion LC. Decision Factors Nurses Use to Assess Pain in Nursing Home Residents With Dementia. Arch Psychiatr Nurs. 2015; 29(5):316-20. Elovsson M, Boström B. Nurses experience of pain management of older people in municipal health. Vard Nord Utveckl Forsk. 2011; (31):10-5. Smith H, Bruckenthal P. Implications of opioid analgesia for medically complicated patients. Drug Aging. 2010; 27(5): 417-433. Mehta A, Chan L. Understanding of the concept of" total pain": a prerequisite for pain control. J Hosp Palliat Nurs. 2008; 10(1): 26-32. Klapwijk MS, Caljouw MA, van Soest-Poortvliet MC, van der Steen JT, Achterberg WP. Symptoms and treatment when death is expected in dementia patients in long-term care facilities. BMC Geriatr. 2014; 14:99. Veal F, Williams M, Bereznicki L, Cummings E, Thompson A, Peterson G, et al. Barriers to Optimal Pain Management in Aged Care Facilities: An Australian Qualitative Study. Pain Manag Nurs. 2018; 19(2):177-85. Wilson E, Morbey H, Brown J, Payne S, Seale C, Seymour J. Administering anticipatory medications in end-of-life care: a qualitative study of nursing practice in the community and in nursing homes. Palliat Med. 2015; 29(1):60-70. Lamahewa K, Mathew R, Iliffe S, Wilcock J, Manthorpe J, Sampson EL, et al. A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia. Health Expect. 2018; 21(1):118-27. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. 2000; 284(19):2476-82. Fine, R. L. (2007). Ethical and practical issues with opioids in life-limiting illness. Proc(Bayl Uni Med Cent). 2007; 20(1):5-12. Josefsson, K. Registered nurses’ health in community elderly care in Sweden. Int Nurs Rev. 2012; 59:409-415. Blomberg H , Welander J. "A narrative study of newly graduated registered Swedish nurses’ establishment in the profession and the portrayal of a healthcare organisation". J Health Organ and Manag . 2019; 3(4): 413-425. Ericson-Lidman E, Norberg A, Persson B, Strandberg G. Healthcare personnel´s experiences of situations in municipal care that generates troubled conscience. Scand J Caring Sc. 2013; 27:215-223. Slettebo A, Kirkevold M, Andersen B, Pedersen R, Halvorsen K, Nordhaug M, et al. Clinical prioritizations and contextual constraints in nursing homes-a qualitative study. Scand J Caring Sci. 2010; 24(3):533-40. Cagle JG, Unroe KT, Bunting M, Bernard BL, Miller SC. Caring for Dying Patients in the Nursing Home: Voices From Frontline Nursing Home Staff. J Pain Symptom Manage. 2017; 53(2):198-207. Bollig G, Schmidt G, Rosland JH, Heller A. Ethical challenges in nursing homes--staff's opinions and experiences with systematic ethics meetings with participation of residents' relatives. Scand J Caring Sci. 2015; 29(4):810-23. Beck, I, Jakobsson, U, Edberg, A-K. Applying a palliative care approach in residential care: effects on nurse assistants’ experiences of care provision and caring climate. Scand J Caring Sci. 2014; 28: 830–84. Socialstyrelsen [National Board]. Nationella riktlinjer – Palliativ vård I livets slutskede- Sammanfattning med förbättringsområden. [National guidelines - Palliative care in end of life - Summary of areas for improvement. Stockholm; 2016. Retrieved from: https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/nationella-riktlinjer/2016-12-3.pdf . Accessed 18 Mars 2020. Hockley J, Kinley J. A practice development initiative supporting care home staff deliver high quality end-of-life care. Int J Palliat Nurs. 2016; 22(10): 474-481. Mitchell SL, Miller SC, Teno JM, Davis RB, Shaffer ML. The advanced dementia prognostic tool (ADEPT): A risk score to estimate survival in nursing home residents with advanced dementia. J Pain Symptom Manage. 2010; 40(5):639–51. Vandervoort A, van den Block L, van der Steen JT, Volicer L, Vander Stichele R, Houttekier D, et al. Nursing home residents dying with dementia in Flanders, Belgium: A nationwide postmortem study on clinical characteristics and quality of dying. J Am Med Dir Assoc. 2013; 14(7):485–92. Johnstone M. Bioethics: A nursing perspective. Chatswood: Elsevier; 2008. Jokiniemi K, Pietilä AM, Kylmä J, Haatainen K. Advanced nursing roles: a systematic review. Nurs Health Sci. 2012; 14(3):421-31. Boyd J, Barron D, Maule L. Employing an advanced nurse practitioner in a care home. Nurs Times. 2019; 115(6): 45-7. Cite Share Download PDF Status: Published Journal Publication published 20 Mar, 2021 Read the published version in BMC Nursing → Version 4 posted Editor assigned by journal 13 Oct, 2020 Submission checks completed at journal 12 Oct, 2020 Editor invited by journal 12 Oct, 2020 You are reading this latest preprint version Show more versions Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6744","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research article","associatedPublications":[],"authors":[{"id":3576215,"identity":"2f79a38e-8e11-4d6b-8d99-af63bd037f76","order_by":0,"name":"Emma Lundin","email":"","orcid":"","institution":"Nacka Senior Centre Talliden","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Emma","middleName":"","lastName":"Lundin","suffix":""},{"id":3576216,"identity":"41cd72b6-5240-4766-aa40-a2f600630dbd","order_by":1,"name":"Tove Godskesen","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA9klEQVRIiWNgGAWjYBADxgYeMG3DwCBBQCkPmpY00rUcJqzFnr3H8AHDLxvZ+T2HD3/4uOO8vPnsBjZpHoY6OZy28JwxNmDsSzPecLYtTXLmmduGc+4cAGk5bIxTi0RamgRjz+HEDfw8Zsy8bbcTJCQSQFoOJDbg1pL+A6Rlfj//589/287BtNTV49aSfIyB4cfhxIazPQzSjG0HYFqYE3A67MzhwxKJDUC/nDlmJtnblmw4Q+Zgs+Ucg8OGuGxhb29s/PDhDyjEkh9/+NlmJy8h3XzwxpuKOnlctoBBYhsKlxFovgFeDUDwh5CCUTAKRsEoGNEAAPwFUud7ljRcAAAAAElFTkSuQmCC","orcid":"https://orcid.org/0000-0001-6011-6740","institution":"Centre for Research Ethics \u0026 Bioethics","correspondingAuthor":true,"submittingAuthor":false,"prefix":"","firstName":"Tove","middleName":"","lastName":"Godskesen","suffix":""}],"badges":[],"createdAt":"2019-10-10 12:22:24","currentVersionCode":4,"declarations":"","doi":"10.21203/rs.2.16091/v4","doiUrl":"https://doi.org/10.21203/rs.2.16091/v4","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12912-021-00566-7","type":"published","date":"2021-03-20T15:00:31+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":13604493,"identity":"c9263363-063a-4563-b781-5707b8d14192","added_by":"auto","created_at":"2021-09-17 06:00:05","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":335549,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6744/v4/955c2f4f-b677-49fb-a218-1434399d4740.pdf"}],"financialInterests":"","formattedTitle":"End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes","fulltext":[{"header":"Background","content":"\n\u003cp\u003eDementia is a progressive, untreatable condition that includes cognitive impairment, neuropsychiatric symptoms and loss of independent function. Associated with it are complex needs with high levels of dependency and morbidity, especially in advanced dementia. There are about 50 million people with dementia worldwide and the number is expected to triple by 2050 [1]. In Sweden today, approximately 140 000 people are living with dementia [2]. The incidence rises exponentially for those aged between 65 and 90, doubling approximately every five years [3]. Sweden has one of Europe\u0026rsquo;s fastest-growing populations of elderly citizens, where one in five is 65 or older, therefore an increased dementia-based public health burden can be expected. People with dementia tend to want to stay at home, but as their condition progresses and they experience the need for full-time care, many moves into nursing homes. The majority of nursing homes in Sweden have beds both for people with physical diseases and for those with dementia, and more than half of the nursing homes have specialised dementia units [4]. Currently, almost half of the Swedish people with advanced dementia are being cared for in a nursing home [4]. The county councils are responsible for providing residents with medical care and the local municipalities for care of elderly in the home or at special accommodations, such as nursing homes [5]. Physicians are not usually employed by the nursing home but visit for a period each week and due to the shortage of physicians, geriatricians from geriatric clinics often provide medical and geriatric care at nursing homes [6]. Therefore, registered nurses [termed nurses from here on] have to assume responsibility for the care of these persons, who often have complex health problems [7]. Nurses also play an active and important part in assessing and relieving pain and suffering [8]. At nursing homes, primary care physicians are in charge of residents\u0026rsquo; care.\u003c/p\u003e\n\u003cp\u003ePalliative care for people at the end of life is in Sweden divided into general and specialised palliative care [9]. General palliative care is provided to patients whose needs may be met by staff with basic caring knowledge. Such care is conducted in municipal care and caring homes in collaboration with primary care. Specialised palliative care is provided to patients with complex symptoms or special needs, conducted by a multi-professional team with specialised knowledge and expertise in palliative care. This care is offered within a specialised palliative care unit or in advanced home care. Persons with advanced dementia at the end of life are given general palliative care at regular nursing homes.\u003c/p\u003e\n\u003cp\u003ePeople with advanced dementia at the end have complex needs and, as they gradually become more and more dependent, the need for nursing care increases [10]. Like the rest of the elderly population, people with dementia struggle with physical challenges such as rheumatoid arthritis, which causes considerable pain. When the person is nearing the end of their life also recurrent infections and/or pressure ulcers can sometimes be painful. Additionally, they have a higher burden of co-morbid physical disease and a greater symptom burden than people without dementia, while also struggling to verbalise [11, 12]. For example, pain, shortness of breath and agitation are common symptoms or consequences of comorbidity that increase in people with dementia shortly before death [13].\u0026nbsp; If the person has other life-limiting conditions that can cause pain, such as cancer, their condition is likely to worsen more predictably [14-16].\u003c/p\u003e\n\u003cp\u003eStudies have shown that persons with dementia living in nursing homes risk receiving suboptimal pain relief [13, 17]. Nurses can assess pain through a variety of pain assessment tools [18], but the quality and utility of these tools have been questioned [19-21]. Further, opioids are usually the first choice for analgesia at the end of life [22], but there is evidence that those with advanced dementia respond poorly to opioid treatment and experience more harmful side effects than people without dementia [22, 23]. Since persons with dementia at the end of life find it difficult, or are unable, to self-report pain, many of the available pain assessment tools cannot be used [24]. Therefore, suitable pain assessment tools for this population have been developed, such as Abbey Pain Scale and Doloplus 2.\u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eNurses in nursing homes play a crucial role in pain management for residents with dementia at the end of life, but few studies have elicited their perspectives in this context. Therefore, the aim of this study was to describe the experiences of nurses caring for residents with advanced dementia and pain at the end of life.\u003c/p\u003e"},{"header":"Methods","content":"\n\u003cp\u003eA descriptive explorative study design was used. Data were collected from qualitative semi-structured interviews. This data collection method allows participants to provide more information, such as feelings and attitudes, and their understanding of the subject. [25].\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eSettings and participants\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAll participants were recruited from nursing home\u003cspan style=\"text-decoration: line-through;\"\u003es\u003c/span\u003e units specialised in dementia care in Stockholm, Sweden. Inclusion criteria were at least one-year of practice as a registered nurse in a nursing home and experience of end-of-life care for residents with advanced dementia and pain.\u003c/p\u003e\n\u003cp\u003eSixteen of the forty-six administrative managers at the randomly chosen nursing homes permitted the study. These managers, on behalf of the researchers, distributed a letter of invitation and information about the study to nurses who met the inclusion criteria. The high workload, on-going reorganisation of the wards, and requirement for extensive experience of end-of-life care for residents with advanced dementia and pain made recruitment of a sufficient number of participants challenging. In the end, the sample consisted of thirteen nurses from twelve nursing homes: ten women and three men (Table 1]. The participants had an average of ten years\u0026rsquo; experience in dementia nursing care, ranging from one to fifteen years. Eleven nurses had a bachelor\u0026rsquo;s degree in nursing, while two had graduated earlier when training comprised a two-year programme. None had specialist training in palliative, geriatric or dementia nursing.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eEthical considerations\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eEthical approval for site participation was not obtained, as this is not required in Sweden for non-interventional research which poses no identified risks for study participants and does not require the processing of sensitive data [26]. Nevertheless, the study followed accepted ethical standards, as outlined in the Declaration of Helsinki [27]. As part of the consent process, participants were informed that participation was voluntary and that consent could be withdrawn at any time without explanation. Participants were also assured, in both written and oral form, that data would be handled confidentially and that the results would be reported in such a way that identification of the informants was not possible. The collected data were handled in line with the EU General Data Protection Directive. All identifiers were removed from the transcripts before they were distributed to the research group and the data were stored securely in a password-protected computer. Signed consent forms were collected before inclusion.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 1. \u003c/strong\u003eCharacteristics of the participant nurses (n = 13)\u003c/p\u003e\n\u003ctable border=\"1\" width=\"400\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd width=\"400\"\u003e\n\u003cp\u003e\u003cstrong\u003eGender\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFemale\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; \u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;10\u003c/p\u003e\n\u003cp\u003eMale\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; 3\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAge (years)\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eRange\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; \u0026lt;27 to \u0026gt;66\u003c/p\u003e\n\u003cp\u003e\u0026lt;29-39\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; \u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;2\u003c/p\u003e\n\u003cp\u003e40-49\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; \u0026nbsp;\u0026nbsp;1\u003c/p\u003e\n\u003cp\u003e50 to \u0026gt;66\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; 10\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEducation\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eBachelor\u0026rsquo;s degree (3-year)\u0026nbsp; \u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;11\u0026nbsp;\u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eNursing programme (2-year)\u0026nbsp; \u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;2\u003c/p\u003e\n\u003cp\u003eSpecialist nursing degree in palliative, geriatric \u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eor dementia nursing\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; 0\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eYears working as a nurse\u003c/strong\u003e\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eRange\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; 2 to 37\u003c/p\u003e\n\u003cp\u003eMean/median\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; 21/20\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eYears working in dementia ward at\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; a nursing home\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; \u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eRange\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; 1 to 15\u003c/p\u003e\n\u003cp\u003eMean/median\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; \u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;10/10\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eData collection\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eIndividual participants were interviewed according to an interview guide (Table 2). The guide was developed from a review of the literature and the questions were guided by the study aim. The questionnaire consisted of semi-structured, open-ended questions, with follow-up questions for further clarification. Before the interview, the interviewer informed the participants that the questions would be focused on the last weeks and days before the persons\u0026rsquo; death. A pilot interview to test intelligibility and suitability led to minor adjustments. After oral and written consent, individual interviews by the first author were scheduled between February and April 2018. The digitally recorded interviews took place during work hours at the nursing homes. They lasted between ten and thirty-two minutes, with an average of twenty-one minutes. No prior relationship existed between the nurses and researchers.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable\u0026nbsp;2. \u003c/strong\u003eInterview guide\u0026nbsp;\u003c/p\u003e\n\u003ctable border=\"1\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd width=\"596\"\u003e\n\u003cp\u003e-\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Can\u0026nbsp;you\u0026nbsp;tell\u0026nbsp;me\u0026nbsp;how\u0026nbsp;you\u0026nbsp;assess pain\u0026nbsp;in end-of-life care for residents with advanced dementia?\u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e-\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Can\u0026nbsp;you\u0026nbsp;tell\u0026nbsp;me\u0026nbsp;how\u0026nbsp;you administer pain relief to residents with advanced dementia at the end of life?\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e-\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Can\u0026nbsp;you\u0026nbsp;tell\u0026nbsp;me a positive\u0026nbsp;experience\u0026nbsp;of\u0026nbsp;pain management\u0026nbsp;in a person with advanced dementia at the end of life?\u0026nbsp; \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e-\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Do you sometimes find it a challenge to assess pain in residents with advanced dementia at the end of life?\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e-\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Can\u0026nbsp;you\u0026nbsp;tell\u0026nbsp;me\u0026nbsp;about\u0026nbsp;your\u0026nbsp;experiences\u0026nbsp;of\u0026nbsp;providing pharmacological\u0026nbsp;pain relief in residents with advanced dementia at the end of life?\u003c/p\u003e\n\u003cp\u003e-\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; What do you think the prerequisites\u0026nbsp;are for giving good\u0026nbsp;pain relief at the end of life?\u003c/p\u003e\n\u003cp\u003e-\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp;\u0026nbsp; Is there anything else\u0026nbsp;you would\u0026nbsp;like to\u0026nbsp;tell\u0026nbsp;me\u0026nbsp;about\u0026nbsp;pain\u0026nbsp;assessment\u0026nbsp;and pain relief in residents with advanced dementia at the end of life?\u0026nbsp; \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eData analysis\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe data were analysed using thematic content analysis [28]. To obtain an overall view of the data, one of the researchers (EL) read the verbatim transcriptions repeatedly.\u0026nbsp; Short notes (codes) in the margins were used to summarise the content. Next, distinct categories were formed by searching for similarities and differences among the notes. Then the number of categories was reduced by merging similar ones and discarding those not relevant to the study. Lastly, the data collected for each category was colour-coded and copied into the relevant page. Patterns between the categorised pages led to the formulation of themes.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 3. \u003c/strong\u003eExample of the analysis process.\u003c/p\u003e\n\u003ctable border=\"1\" width=\"0\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd width=\"171\"\u003e\n\u003cp\u003e\u003cstrong\u003eMeaning units\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd width=\"156\"\u003e\n\u003cp\u003e\u003cstrong\u003eCodes\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd width=\"123\"\u003e\n\u003cp\u003e\u003cstrong\u003eCategory\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd width=\"117\"\u003e\n\u003cp\u003e\u003cstrong\u003eTheme\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd width=\"171\"\u003e\n\u003cp\u003eWhen they cannot express if they are in pain nor grade their\u0026nbsp;pain. Then\u0026nbsp;it is about me and my ability of assessing their\u0026nbsp;expressions, to\u0026nbsp;look at face expressions and body language, movements, pallor or cold sweat and physical signs...you need to\u0026nbsp;understand if it is about pain or if it is about anxiety or if it is an combination.\u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd width=\"156\"\u003e\n\u003cp\u003eInterpretation of pain\u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSigns of pain\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eLack of verbal communication\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTo distinguish pain from anxiety\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd width=\"123\"\u003e\n\u003cp\u003eUncertainties when assessing pain\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd width=\"117\"\u003e\n\u003cp\u003eCommunication challenges: assessing and relieving pain\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003c/table\u003e"},{"header":"Results","content":"\u003cp\u003eThe results described the nurses\u0026rsquo; experiences of end-of-life care for residents with advanced dementia and pain, using three themes: communication challenges, relational challenges, and organisational challenges.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCommunication challenges: assessing and relieving pain\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ea) Uncertainties when assessing pain\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eMany nurses found it challenging to assess pain. A common cause of uncertainty was when the cognitive impairment of dementia affected the person\u0026rsquo;s ability to verbally express if they experienced pain, which becomes a barrier to assess if pain medication has achieved an optimal level of pain relief. As one nurse said: \u0026ldquo;It is difficult, because most of them you cannot ask and get a clear answer from\u0026rdquo; (Nurse 11). The nurses thought that asking the residents with advanced dementia about their pain was the first step in pain assessment. When verbal communication was impossible, the nurses then focused on the interpretation of pain expressions: verbal expressions such as groaning and screams, and nonverbal expressions such as anxious behaviour and body language including facial expression. Several nurses found distinguishing pain from anxiety challenging: \u0026ldquo;It is really hard to assess pain and it is not easy to interpret whether it is about pain or anxiety\u0026rdquo; (Nurse 6). The similarity of expressions of pain and anxiety made the nurses feel uncertain.\u003c/p\u003e\n\u003cp\u003eAnother communicational challenge that caused uncertainty was if the nurses lacked an earlier relationship with the residents with advanced dementia. That made pain assessment more difficult; for example, it is then impossible to compare current behaviour with past behaviour. As expressed by one nurse:\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIt felt tough because I didn\u0026acute;t know her from before...I couldn\u0026acute;t know if she had behaved like this before and that made it difficult. It helps so much if you have been taking care of the person for a while. (Nurse 10)\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAs lack of verbal communication was the primary reason for difficulties with pain assessment, several nurses emphasized the importance of communication skills and suggested that professional experience developed their abilities:\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIt demands skill to be able to assess whether a person with dementia is in pain ...you need to be really good at communication to sort this out...and this is something you have to learn through practice. (Nurse 5)\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMost of the nurses used the Abbey Pain Scale assessment tool. However, some of the nurses did not use any assessment tools at all, believing that the available tools were inadequate, or that there were no guidelines at all. Instead, these nurses assessed pain by intuition.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eb)\u003c/em\u003e \u003cem\u003eUncertainties when administering pain relief \u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eSimilarly, these nurses used an intuitive approach to decide the morphine dosage. This situation made it hard to achieve the correct balance between optimal pain control and optimal safety.\u003c/p\u003e\n\u003cp\u003eSafety is an issue because the most commonly used pharmacological treatment is subcutaneous morphine by injection. The nurses found it difficult to achieve the right dosage balance, avoiding doses that were too small for adequate pain relief and those that were so generous that respiratory depression resulted. As one nurse said:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThen one is a bit careful as morphine is a problem, i.e. it affects the respiratory centre \u0026hellip; One does not want to sedate someone, despite having reached the end of life \u0026ndash; you try to give just the required pain relief... (Nurse 6)\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThus, the nurses tried to find the dose that made the person peaceful and pain-free and felt satisfaction when they succeeded. As one nurse described it: \u0026ldquo;It\u0026rsquo;s really difficult to find a balance, to find the exact dose ... it is very positive seeing a person relaxing and not expressing pain\u0026rdquo; (Nurse 7). Despite worries about respiratory depression, several nurses believed it was better to administer morphine generously and preferable to give a bit too much rather than too little: \u0026ldquo;Well, yes, my point of view is that it is important to give something, and rather a bit too much than too little\u0026rdquo; (Nurse 11).\u003c/p\u003e\n\u003cp\u003eThe difficulty of distinguishing pain from expressions of anxiety made several nurses adopt the strategy of combining morphine injections with midazolam injections for anxiety. As one nurse expressed it:\u003c/p\u003e\n\u003cp\u003eI noticed I had to relieve both pain and anxiety and he was so tense before, and after injections of morphine and midazolam he got so relaxed; they go hand in hand, pain and anxiety...it is not unusual that we combine medications for pain and anxiety. (Nurse 8)\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eRelational challenges: the influence of relatives\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMostly, relatives were perceived as a positive factor when caring for the dying person with advanced dementia, but they could sometimes negatively influence the administration of analgesics. Several nurses viewed relatives as significant resources in pain assessment, as relatives were often familiar with the earlier behaviour of the residents with advanced dementia and could interpret their behaviour for the nurses. One nurse said that a grandchild had been \u0026ldquo;really alert when she sat beside her grandmother\u0026rsquo;s bed; she immediately signalled to us when she saw signs of pain\u0026rdquo; (Nurse 1). The presence of relatives beside these residents with advanced dementia is important in itself, and they were usually called in by the nurses when they were approaching death.\u003c/p\u003e\n\u003cp\u003eFamily members sometimes asked for an ongoing relationship with the healthcare staff, so they could actively influence and help with the care. At other times relatives could pose a challenge; this could happen, for example, when the person was administered analgesics. The relatives could be uncertain about or even afraid of morphine, and \u0026ldquo;the atmosphere in the room can change immediately when morphine injections are about to be administered\u0026rdquo; (Nurse 10). If relatives believe that their next-of-kin is not adequately relieved of pain, nurses often comply with their wishes for more pain medication:\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eRelatives often want the person to receive a lot of analgesics; of course, they don\u0026rsquo;t want them to suffer, and sometimes you listen to them, and sometimes you give an injection maybe more for the sake of calming down the relatives a little, to satisfy them, to make them feel at ease. (Nurse 9)\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eIn some cases, relatives reportedly insisted on sending the person to the hospital because they thought that they were not adequately relieved of their pain. In other cases, relatives at the bedside asked the nurse to give as little morphine as possible, either because they were afraid that the drug could provoke the person\u0026rsquo;s death, or because they feared that the person could become addicted. Relatives\u0026rsquo; attitudes toward morphine were often mentioned as the most complicated issue related to pain medication. This often caused stress or, as one nurse put it: \u0026ldquo;It\u0026rsquo;s a pressure, to be surrounded by questioning relatives\u0026rdquo; (Nurse 5). The nurses thought that the whole process of administering morphine could be strongly facilitated if they communicated closely with the relatives, exchanged information with them, and gave them good reasons for administering morphine.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eOrganisational challenges \u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003ea) Time constraints\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eSeveral challenges at an organisational level were mentioned by nurses as barriers to the provision of good quality, person-centred palliative care for those with advanced dementia. Several nurses emphasised the importance of being readily available in order to relieve the pain effectively. This can be crucial, as having nurses present \u0026ldquo;can relieve pain that comes from anxiety and loneliness\u0026rdquo; (Nurse 6). \u0026nbsp;If residents with advanced dementia are left alone, they can feel lonely, which can create or increase physical and psychosocial pain. As one nurse expressed it:\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMany things are important when it comes to pain, not least the psychological part. If a person feels exposed and feels like no one is there and no one cares about them, then I think they will feel more pain. (Nurse 9)\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eMany nurses reported that understaffing, limited time and heavy workloads made it difficult to provide adequate care and attend properly to residents with advanced dementia. The nurses wanted healthcare personnel to stay with the dying person when relatives were not present. However, sometimes the workplace did not permit additional healthcare personnel because of economic barriers, causing the person with dementia to die alone and in pain. This made the nurses feel powerless and helpless: \u0026ldquo;It is miserable to know that a dying person is alone and has nobody present ... because staff presence is insufficient\u0026rdquo; (Nurse 6). Their heavy workloads often prevented nurses from staying with the person who was dying:\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWe nurses are so few that we don\u0026acute;t have the time to sit and hold someone\u0026acute;s hand and try to comfort them ... most of the time we are sitting down documenting [the work]. I hardly find time to be among the residents. (Nurse 7)\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTime constraints were commonly described as a significant barrier to the nurses being readily available to persons with advanced dementia. This was commonly lamented: \u0026ldquo;If I could wish for something, it would be more staff and more resources\u0026rdquo; (Nurse 13).\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026nbsp;\u003c/em\u003e\u003cem\u003eb) Lack of knowledge and competence\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAnother organisational challenge often mentioned by nurses was the apparent lack of professional competence and ability to apply a palliative care approach according to the philosophy of palliative care. All healthcare personnel were seen as necessary by nurses but sometimes when healthcare personnel lacked sufficient competence (such as sensitive awareness or an appropriate personal attitude) to handle the complex palliative care demands, it could become challenging. As one nurse said:\u003c/p\u003e\n\u003cp\u003eI have seen that persons with dementia can be more or less calm according to which staff are working\u0026hellip; If there are anxious staff working, so to speak, if they talk loud, if they are stressed or something, then the person with dementia can also become worried and experience more pain\u0026hellip; Meeting people with dementia is an art that is so important \u0026ndash; to calm them and treat them with respect. (Nurse 9)\u003c/p\u003e\n\u003cp\u003eThe nursing homes in this study were staffed by physicians who did not spend the majority of their practice caring for persons with dementia. The physicians often stated that there was no maximum morphine dose, but that it was important to start with a small dose and then titrate it until the person was comfortable. Many nurses in this study were responsible for determining the amount and frequency of morphine administration, even though no nurses had specialist training:\u003c/p\u003e\n\u003cp\u003e\u0026hellip;Most often doctors prescribe no upper limit for the total administered dose, which means that I as a nurse have the greatest responsibility here when it comes to pain relief at the end of life. (Nurse 13)\u003c/p\u003e\n\u003cp\u003eSome nurses felt that this was a challenge and that the responsibility for morphine became greater during palliative care, with increased demands on the nurse's knowledge and competence.\u003c/p\u003e\n\u003cp\u003eLastly, the nurses mentioned that they often co-operated with healthcare personnel and that they found this very important as those personnel often cared more directly for the person with dementia and therefore were better able to perceive their pain. On the other hand, healthcare personnel often lacked essential knowledge or experience relating to pain management:\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u0026ldquo;Lack of knowledge is one reason for it not working so well with healthcare personnel ... knowledge improves everything and provides the prerequisites.\u0026rdquo; (Nurse 12)\u003c/p\u003e\n\u003cp\u003eSome nurses experienced difficulties with stand-in or temporary healthcare personnel as they did not know the person with advanced dementia and were unaware of their baseline behaviour. This increased the risk of missing signs of pain and not reporting them to the nurses, as one nurse described:\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u0026ldquo;When I entered the room, I noticed the person was really in pain, and I questioned the healthcare personnel: why haven't you said something to me?\u0026rdquo; (Nurse 9)\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study found that nurses caring for residents with advanced dementia and pain at the end of life are facing communication, relational and organisational challenges.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eCommunication challenges\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAlthough unresolved pain can occur in residents with advanced dementia at the end of life, pain relief is a priority in palliative care; however, nurses reported that, as persons with advanced dementia often lose their ability to communicate, pain management becomes very complex. Pain is a subjective sensation and not being able to communicate with persons with advanced dementia makes nurses uncertain of whether there is pain and, if so, whether it is being adequately managed. This corresponds to findings in the literature that pain assessment is challenging in people with dementia, because of their inability to understand and answer questions [29]. Even when nurses suppose that a person with dementia has pain, they find it difficult to assess the intensity and the kind of pain [30].\u003c/p\u003e\n\u003cp\u003eIn this study, the nurses used either the Abbey Pain Scale assessment tool or no assessment tool at all. Many found the Abbey Pain Scale inadequate. These findings echo those of other studies where nurses in nursing homes have often found existing pain assessment tools inadequate [29, 31, 32]. This scepticism seems warranted. Lichtner and colleagues [18] assessed the reliability, validity and clinical utility of 28 pain assessment tools for people with dementia, including the Abbey Pain Scale, but could not recommend any particular pain assessment tool because of non-conclusive evidence. However, it is alarming that some nurses assess pain by intuition, without using assessment scales. The assessment and documentation of pain are needed in order to improve management of pain and should therefore be built into nursing homes care systems. Using an assessment scale instrument to evaluate pain routinely makes it more likely that the staff will notice pain and swiftly act accordingly. The National Board of Health \u0026amp; Welfare in Sweden also recommend use of scales such as Abbey Pain Scale and Doloplus 2 in this population, as pain is more likely to be recognised when routinely using an assessment scale, and because these scales are developed to assist assessment of pain in non-verbal individuals with end-stage dementia. They require minimal time to complete and are easy to understand. In addition, educational interventions for all nursing home staff, to improve knowledge and attitudes, could be a key and a significant step forward to increase the end of life care for frail older people in care homes but also for the possibility to evaluate interventions.\u003c/p\u003e\n\u003cp\u003eEnd-of-life care for residents with complex pain status and advanced dementia is a clinical and ethical challenge and the body of knowledge about pain management for this patient group is limited [13]. The administration of morphine injections becomes problematic for nurses when they are uncertain about the resident\u0026rsquo;s pain status. The most challenging aspect is finding the right balance between providing adequate pain relief and avoiding respiratory depression. Many nurses said that they would rather administer morphine with generosity than risk giving too little. This attitude is in line with a study of Brorson and colleagues [30], where nurses expressed a will to overtreat rather than undertreat pain, despite being mindful of the risk that they could cause a hastening of death. Residents with dementia in pain at nursing homes are often undertreated and require increasing dosages of opioids during the last week before death [13]. Therefore, opioid treatment (if possible, in oral form, otherwise transdermal patches or intravenous) should be initiated early at a low dose and titrated slowly along with registering adverse events [33]. Without doubt, pain is a personal experience influenced by many different factors, a combination of physical, emotional, social, and spiritual components, which has led to the concept of \u0026ldquo;total pain\u0026rdquo; [34].\u003c/p\u003e\n\u003cp\u003eA related issue involves the difficult clinical distinction between pain and anxiety. In line with previous findings [30, 35, 36], we found several nurses who experienced difficulty in distinguishing pain from anxiety. Likewise, Gilmore-Bykovskyi et al. [29] found that nurses feel uncertain about whether behavioural changes indicate pain or are related to other causes. Because the nurses were unable to define the exact cause of the behavioural change, administration of analgesia was delayed. Because of their difficulty in identifying pain, several nurses in our study combined midazolam injections for anxiety with morphine injections, in the belief that midazolam also relieves pain. This drug combination used at the end of life has also been reported by Wilson and colleagues [37]. In another study, nurses stated that morphine alleviates both pain and anxiety [30]. Pain and anxiety appear to be associated and we believe further research should be carried out to better understand nurses\u0026acute; decisions to use pain medication or psychotropic medication when treating pain [31].\u003c/p\u003e\n\u003cp\u003eNon-pharmacological interventions have received increasing attention in the palliative care literature in recent years; however, few nurses in this study mentioned such interventions. Because pain treatment remains inadequate for many residents with advanced dementia at the end of life, non-pharmacological interventions (such as music, aromatherapy, soft tissue massage) should be tried together with medication. We hypothesise that high workloads, lack of time among nurses or lack of knowledge are the reason for not prioritising non-pharmacological interventions, and as a consequence, not mentioning this topic in the interviews. Efforts to inform and educate may increase the use of these interventions.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eRelational challenges\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe nurses in our study often mentioned relational challenges. To know and understand residents with advanced dementia, nurses must build good relationships with their relatives and be able to spend some time with the residents with advanced dementia [30, 36]. Lamaheva and colleagues [38] noted the importance of preparing early for a progressive decline in health and the inevitable end-of-life phase. Advance care planning can alleviate the burden of decision-making for both relatives and nurses who attempt to make the best decision for a resident with advanced dementia. Recurrently, the nurses in our study described relatives as a positive influence. Nevertheless, sometimes, mainly when nurses administered opioids at the end of life, the relatives\u0026acute; opinions could be highly challenging. Then, nurses have to focus not only on the resident with advanced dementia but also on the well-being of the relatives. They often do so through conversations and by trying to be open to the relatives\u0026rsquo; views and wishes [31]. We can see a need for some on-site educational support for relatives, as that could facilitate a better co-understanding of the situation for relatives and nurses. Because relatives should be included in palliative care programmes, as this is essential for understanding and learning about residents with advanced dementia, further research about cooperation between relatives and nurses should be promoted.\u003c/p\u003e\n\u003cp\u003ePain treatment will be most effective if all components of pain are explored. When a person with advanced dementia cannot communicate verbally and are not able to exercise autonomy, relatives often need to act as proxies and advocates on their behalf. In our study, the nurses identified the relatives\u0026rsquo; need for emotional support when trying to provide good care. If the relatives hold misconceptions, for example a belief that there is a risk of opioid addiction at the end of life, or a fear that the loved ones are going to die of opioids, it constitutes a barrier to good pain treatment. Persons with pain and advanced dementia at the end of life are therefore particularly vulnerable and very dependent on their caregivers. Nurses must therefore focus on reducing the distress and burdens for the person facing death, respecting the person\u0026rsquo;s dignity, and giving person-centred pain assessment and management, so that the correct dose can be found. Being free from pain is after all considered essential for good end-of-life care [39]. However, it is also within the nursing assignments to carefully explain, educate and have a discussion with the relatives about the symptoms and treatments accentuated at the end of life. For example, relatives need to be informed that an increase in morphine dosage at the end of life is generally related to the progression of disease, not to dependence developing. Likewise, when a person with advanced dementia has forced breathing, this can be a sign of pain. After opioids, respiration may slow down, for example from 24 breaths a minute to a stress-free 10 to 12 per minute, which is not a condition of life-threatening respiratory depression [40]. In cases were relatives ask for more generosity with opioids, nurses must act in line with the principle of non-maleficence and use opioids properly to not harm the person in pain. A clear understanding of morphine treatment and its side effects is likely to promote confidence when administering morphine [37].\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eOrganisational challenges\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe nurses also mentioned organisational challenges, especially in relation to good pain management. Because of economic barriers, insufficient nurse staffing has meant that an adequate nurse presence has not been achieved [41-43]. Slettebo and colleagues [44] found that although nurses wish to do more for people living with dementia and their relatives, insufficient nursing staff levels result in nurses prioritising physical needs such as pharmacological pain relief rather than psychosocial needs. This study indicates that insufficient staffing results in lonely residents with advanced dementia and could result in these people dying alone and in pain. This produced a feeling of powerlessness among the nurses. Previous studies have shown that people with dementia in a nursing home can suffer from the absence of relatives and caregivers at the end of life and can then, therefore, die in pain alone. This situation is ethically burdensome for nurses [45, 46] and should be taken seriously by care management and policymakers who set the frameworks for care.\u003c/p\u003e\n\u003cp\u003eMany residences with advanced dementia at nursing homes have complex needs and even though many dies in institutional care at nursing homes, they have not traditionally provided evidence-based palliative care, instead usually offering experience-based care [47]. Palliative care should be provided for people with life-threatening disease independent of diagnosis with a focus on early identification and assessment [21]. In recognising the importance of providing both high-quality general and specialised palliative care, the Swedish National Board of Health \u0026amp; Welfare has established evidence-based guidelines for palliative care in line with the WHO guidelines for palliative care [9]. These were later evaluated [48]. This evaluation found that municipalities responsible for the care of the elderly in some respects do not follow the National knowledge support for good palliative care. In order to empower nurses and nursing staff in Swedish nursing homes, regarding better end-of-life pain, authors suggest implementation of an end-of-life-care framework with support from external palliative care specialists. This is showed to improve the quality of end-of-life care for nursing home residents in UK [49]. Nevertheless, one challenge regarding support from external experts is to recognize when persons with dementia has started [50] and many health professionals reportedly tend to overestimate the remaining lifetime [51].\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eSpecialist training in palliative care can also address the need for skills in ethical deliberation. Effective pain management in residents with advanced dementia at the end of life is often conceived as an ethical obligation and the strategies proposed are motivated by ethical reasoning. To give morphine with the intention of relieving distressing symptoms, even though there is a risk of thereby shortening the patient's life, is often supported by \u0026ldquo;the doctrine of double effect\u0026rdquo;. This ethical principle says that \u0026ldquo;it is always wrong to do a bad act for the sake of good consequences, but it is sometimes permissible to do a good act knowing it might have some bad consequences\u0026rdquo; [52]. The application of this doctrine implies that doing something morally good (giving morphine to relieve pain) might potentially have a bad effect (shortening life), but that it is ethically permissible if the bad effect is not intended. In this way, healthcare professionals can use the principle to justifiably administer appropriate doses of morphine to a patient at the end of life, even though this could shorten the patient's life. Used in this way, ethics training can provide conceptual tools that justify what intuitively feels right and help to distinguish justified from unjustified cases of high dosage administration.\u003c/p\u003e\n\u003cp\u003eTo carry out individual expert assessments, we thus urgently need experienced, specialist nurses in nursing homes. The role of advanced nurse practitioner has been developed for a long time in the UK, US and Australia. These advanced nurse practitioners (also called advanced practice nurses or nurse consultants in the UK, clinical nurse specialists in the US, and clinical nurse consultants in Australia) are nurses with both theoretical and evidence-based knowledge who are expected to have expert skills in both complex decision-making and clinical judgement [53]. A position as an advanced nurse practitioner usually involves consultancy work as well as education and research work. While advanced clinical nursing is a common, well developed feature in many countries, Sweden has not facilitated the emergence of this profession. Based on the findings of this study, we suggest the implementation of advanced nurse practitioners for end-of-life dementia care. This would have the effect of improving patient outcomes, promoting continuity of care, supporting nursing and care teams, and stimulating research in the field [54].\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStrengths and limitations\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe high workloads and lack of time among nurses affected our study, as we had hoped to interview several nurses from each nursing home. This was not, however, possible; only two informants were from the same nursing home, while the other eleven nurses all came from different workplaces.\u003c/p\u003e\n\u003cp\u003eSeveral limitations of this study should be taken into consideration. The aim from the beginning was to recruit a widely varied sample with respect to the nurses' age, gender and work experience. However, because of poor recruitment and time pressure, all the nurses who volunteered and who met the inclusion criteria were included. A strategic sample would probably have provided a more varied and heterogeneous sample with participants who may have added data with wider variety (regarding age, gender and education level).\u003c/p\u003e\n\u003cp\u003eThe participants were from nursing homes in one city, which could indicate that the results should not be extended to other countries and contexts. Nonetheless, we achieved saturation and good representation regarding age, gender and extent of work experience in Swedish nursing homes. However, it is noteworthy that none of the nurses had specialised in dementia, palliative or geriatric nursing.\u003c/p\u003e\n\u003cp\u003eFurthermore, there might be some risk of bias in that the head managers organised the recruitment of participants. It is possible that they opted for the most suitable participants, thereby masking potential problems.\u003c/p\u003e\n\u003cp\u003eDespite the limitations, we believe that this study contributes essential knowledge about the complexity of caring for residents with advanced dementia and pain at the end of life. There are still many gaps in our specific area, such as whether there are differences between nurses with long and short nursing experience and how pain management is affected in nursing homes that organise work differently. There is thus a need for further quantitative research, including further assessment of best practice for the end-of-life care of residents with advanced dementia and pain.\u003c/p\u003e"},{"header":"Conclusions ","content":"\u003cp\u003eThis study shows that nurses face several demanding challenges when caring for persons with advanced dementia and pain at the end of life. One of the main issues were the difficulty in communicating with these persons, resulting in uncertain pain assessment. This results in difficulties in separating pain from anxiety and in balancing the benefits and risks of morphine administration. Relatives can significantly influence the assessment and management of pain, both as interpreters of pain behaviour and by questioning the care given. Factors facilitating good palliative care and pain management included having good relationships with the other healthcare personnel, having extensive relevant professional experience, and having enough time to care for the resident with advanced dementia and their relatives.\u003c/p\u003e\n\u003cp\u003eThe many challenges can affect the care of this growing and vulnerable group negatively and, therefore, it is crucial to promote more research in this area. We found that specifically trained specialist nurses are sorely needed at nursing homes in order to meet these challenges with the appropriate skills and knowledge. Additionally, there should be resources and strategies available for informing and involving family members in the care as they are often unfamiliar with the considerations involved in decisions (such as whether to administer morphine or not).\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eRelevance to clinical practice \u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis study suggests that there is a need for trained nurses specialising in palliative care or dementia care at nursing homes in order to meet the challenges described with appropriate skills and knowledge. There is also a need for resources and strategies for informing relatives about end-of-life care and sometimes involving them in decision-making.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eNurses = registered nurses\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthical approval \u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNo ethical approval is required for non-interventional studies without risks or any processing of sensitive personal data taking place [SFS 2003:460]. The head of each nursing home gave authorisation for approaching the nurses. The study followed the Declaration of Helsinki (World Medical Association [WMA], 2013]. The participants were informed about the study and about the handling of personal data and were informed that personal information would be kept confidential. Written informed consent was obtained.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eConsent for publication was received from the nurses.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and material\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAdditional data files in Swedish are available upon request to the corresponding author.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors received no financial support for the research and authorship.\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026rsquo; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEL and TG conceived and designed the research. EL collected the data; EL and TG analysed and interpreted the data. Both contributed equally to the writing and revising of the manuscript and both approved the final manuscript.\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors acknowledge and thank all the research participants and nursing homes who supported and facilitated this research.\u003c/p\u003e"},{"header":"References","content":"\n\u003col\u003e\n\u003cli\u003eWHO [World Health Organization]. Geneva; 2019. Retrieved from: \u003ca href=\"http://www.who.int/news-room/fact-sheets/detail/dementia\"\u003ehttp://www.who.int/news-room/fact-sheets/detail/dementia\u003c/a\u003e. Accessed 9 Jun 2019.\u003c/li\u003e\n\u003cli\u003eSocialstyrelsen [National Board]. Nationella riktlinjer-Utv\u0026auml;rdering 2018 - V\u0026aring;rd och omsorg vid demenssjukdom - Indikatorer och underlag f\u0026ouml;r bed\u0026ouml;mning. 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J Pain Symptom Manage. 2004; 27(1):5-13.\u003c/li\u003e\n\u003cli\u003eHendriks S, Smalbrugge M, Hertogh C, Van der Steen J. Dying with dementia: symptoms, treatment, and quality of life in the last week of life. J Pain Manage. 2014; 47(4): 710-20.\u003c/li\u003e\n\u003cli\u003eBayer A. Death with dementia--the need for better care. Age Ageing. 2006; 35(2):101-2.\u003c/li\u003e\n\u003cli\u003eDavies N, Maio L, van Riet Paap J, Mariani E, Jaspers B, Sommerbakk R, et al. Quality palliative care for cancer and dementia in five European countries: some common challenges. Aging Ment Health. 2014; 18(4):400-10.\u003c/li\u003e\n\u003cli\u003eMartinsson L, Lundstrom S, Sundelof J. Quality of end-of-life care in patients with dementia compared to patients with cancer: A population-based register study. PLoS One. 2018; 13(7): e0201051.\u003c/li\u003e\n\u003cli\u003eLiu JYW, Leung DYP. Pain Treatments for Nursing Home Residents with Advanced Dementia and Substantial Impaired Communication: A Cross-Sectional Analysis at Baseline of a Cluster Randomized Controlled Trial. Pain Med. 2017; 18(9):1649-57.\u003c/li\u003e\n\u003cli\u003eLichtner V, Dowding D, Esterhuizen P, Closs SJ, Long AF, Corbett A, et al. Pain assessment for people with dementia: a systematic review of systematic reviews of pain assessment tools. BMC Geriatr. 2014; 14:138.\u003c/li\u003e\n\u003cli\u003eCohen-Mansfield J. Even with regular use of an observational scale to assess pain among nursing home residents with dementia, pain-relieving interventions are not frequently used. Evidence Based Nursing. 2014; 17(1):24-5.\u003c/li\u003e\n\u003cli\u003evan der Steen JT, Sampson EL, Van den Block L, Lord K, Vankova H, Pautex S, et al. Tools to Assess Pain or Lack of Comfort in Dementia: A Content Analysis. J Pain Symptom Manage. 2015; 50(5):659-75 e3.\u003c/li\u003e\n\u003cli\u003eWHO [World Health Organization]. Palliative care. Geneva; 2018. Retrieved from: \u003ca href=\"https://www.who.int/news-room/fact-sheets/detail/palliative-care\"\u003ehttps://www.who.int/news-room/fact-sheets/detail/palliative-care\u003c/a\u003e. Accessed 9 Nov 2018.\u003c/li\u003e\n\u003cli\u003eErdal A, Flo E, Aarsland D, Selbaek G, Ballard C, Slettebo DD, et al. Tolerability of buprenorphine transdermal system in nursing home patients with advanced dementia: a randomized, placebo-controlled trial (DEP.PAIN.DEM). Clin Interv Aging. 2018; 13:935-46.\u003c/li\u003e\n\u003cli\u003eAman Y, Pitcher T, Ballard C, Malcangio M. Impaired chronic pain-like behaviour and altered opioidergic system in the TASTPM mouse model of Alzheimer's disease. Eur J Pain. 2019; 23(1):91-106.\u003c/li\u003e\n\u003cli\u003eEgan M, Cornally N. Identifying barriers to pain management in long-term care. Nurs Older People. 2013; 25(7):25-31.\u003c/li\u003e\n\u003cli\u003eKvale S, Brinkmann S. InterViews: learning the craft of qualitative research interviewing. Third edition. ed. Los Angeles: Sage Publications; 2015.\u003c/li\u003e\n\u003cli\u003eSwedish ethical review act (SFS:2003:460). Retrieved from: \u003ca href=\"https://www.riksdagen.se/sv/dokument-lagar/dokument/svensk-forfattningssamling/lag-2003460-om-etikprovning-av-forskning-som_sfs-2003-460\"\u003ehttps://www.riksdagen.se/sv/dokument-lagar/dokument/svensk-forfattningssamling/lag-2003460-om-etikprovning-av-forskning-som_sfs-2003-460\u003c/a\u003e\u003cu\u003e. Accessed 12 Feb 2019\u003c/u\u003e.\u003c/li\u003e\n\u003cli\u003eWMA [World Medical Association]. Declaration of Helsinki - Ethical principles for medical research involving human subjects. Retrieved from: \u003ca href=\"https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects\"\u003ehttps://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects\u003c/a\u003e. Accessed 31 Oct 2019.\u003c/li\u003e\n\u003cli\u003eBurnard P, Gill P, Stewart K, Treasure E, Chadwick B. Analysing and presenting qualitative data. Br Dent J. 2008; 204(8):429-32.\u003c/li\u003e\n\u003cli\u003eGilmore-Bykovskyi AL, Bowers BJ. Understanding nurses' decisions to treat pain in nursing home residents with dementia. Res Gerontol Nurs. 2013; 6(2):127-38.\u003c/li\u003e\n\u003cli\u003eBrorson H, Plymoth H, Ormon K, Bolmsjo I. Pain relief at the end of life: nurses' experiences regarding end-of-life pain relief in patients with dementia. Pain Manag Nurs. 2014; 15(1):315-23.\u003c/li\u003e\n\u003cli\u003eMonroe TB, Parish A, Mion LC. Decision Factors Nurses Use to Assess Pain in Nursing Home Residents With Dementia. Arch Psychiatr Nurs. 2015; 29(5):316-20.\u003c/li\u003e\n\u003cli\u003eElovsson M, Bostr\u0026ouml;m B. Nurses experience of pain management of older people in municipal health. Vard Nord Utveckl Forsk. 2011; (31):10-5.\u003c/li\u003e\n\u003cli\u003eSmith H, Bruckenthal P. Implications of opioid analgesia for medically complicated patients. Drug Aging. 2010; 27(5): 417-433.\u003c/li\u003e\n\u003cli\u003eMehta A, Chan L. Understanding of the concept of\" total pain\": a prerequisite for pain control. J Hosp Palliat Nurs. 2008; 10(1): 26-32.\u003c/li\u003e\n\u003cli\u003eKlapwijk MS, Caljouw MA, van Soest-Poortvliet MC, van der Steen JT, Achterberg WP. Symptoms and treatment when death is expected in dementia patients in long-term care facilities. BMC Geriatr. 2014; 14:99.\u003c/li\u003e\n\u003cli\u003eVeal F, Williams M, Bereznicki L, Cummings E, Thompson A, Peterson G, et al. Barriers to Optimal Pain Management in Aged Care Facilities: An Australian Qualitative Study. Pain Manag Nurs. 2018; 19(2):177-85.\u003c/li\u003e\n\u003cli\u003eWilson E, Morbey H, Brown J, Payne S, Seale C, Seymour J. Administering anticipatory medications in end-of-life care: a qualitative study of nursing practice in the community and in nursing homes. Palliat Med. 2015; 29(1):60-70.\u003c/li\u003e\n\u003cli\u003eLamahewa K, Mathew R, Iliffe S, Wilcock J, Manthorpe J, Sampson EL, et al. A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia. Health Expect. 2018; 21(1):118-27.\u003c/li\u003e\n\u003cli\u003eSteinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. 2000; 284(19):2476-82.\u003c/li\u003e\n\u003cli\u003eFine, R. L. (2007). Ethical and practical issues with opioids in life-limiting illness. Proc(Bayl Uni Med Cent). 2007; 20(1):5-12.\u003c/li\u003e\n\u003cli\u003eJosefsson, K. Registered nurses\u0026rsquo; health in community elderly care in Sweden. Int Nurs Rev. 2012; 59:409-415.\u003c/li\u003e\n\u003cli\u003e\u003cu\u003eBlomberg H\u003c/u\u003e,\u003cu\u003e Welander J.\u003c/u\u003e \"A narrative study of newly graduated registered Swedish nurses\u0026rsquo; establishment in the profession and the portrayal of a healthcare organisation\".\u003cu\u003e J Health Organ and Manag\u003c/u\u003e. 2019; 3(4): 413-425.\u003c/li\u003e\n\u003cli\u003eEricson-Lidman E, Norberg A, Persson B, Strandberg G. Healthcare personnel\u0026acute;s experiences of situations in municipal care that generates troubled conscience. Scand J Caring Sc. 2013; 27:215-223.\u003c/li\u003e\n\u003cli\u003eSlettebo A, Kirkevold M, Andersen B, Pedersen R, Halvorsen K, Nordhaug M, et al. Clinical prioritizations and contextual constraints in nursing homes-a qualitative study. Scand J Caring Sci. 2010; 24(3):533-40.\u003c/li\u003e\n\u003cli\u003eCagle JG, Unroe KT, Bunting M, Bernard BL, Miller SC. Caring for Dying Patients in the Nursing Home: Voices From Frontline Nursing Home Staff. J Pain Symptom Manage. 2017; 53(2):198-207.\u003c/li\u003e\n\u003cli\u003eBollig G, Schmidt G, Rosland JH, Heller A. Ethical challenges in nursing homes--staff's opinions and experiences with systematic ethics meetings with participation of residents' relatives. Scand J Caring Sci. 2015; 29(4):810-23.\u003c/li\u003e\n\u003cli\u003eBeck, I, Jakobsson, U, Edberg, A-K. Applying a palliative care approach in residential care: effects on nurse assistants\u0026rsquo; experiences of care provision and caring climate. Scand J Caring Sci. 2014; 28: 830\u0026ndash;84.\u003c/li\u003e\n\u003cli\u003eSocialstyrelsen [National Board]. Nationella riktlinjer \u0026ndash; Palliativ v\u0026aring;rd I livets slutskede- Sammanfattning med f\u0026ouml;rb\u0026auml;ttringsomr\u0026aring;den. [National guidelines - Palliative care in end of life - Summary of areas for improvement. Stockholm; 2016. Retrieved from: \u003ca href=\"https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/nationella-riktlinjer/2016-12-3.pdf\"\u003ehttps://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/nationella-riktlinjer/2016-12-3.pdf\u003c/a\u003e. Accessed 18 Mars 2020.\u003c/li\u003e\n\u003cli\u003eHockley J, Kinley J. A practice development initiative supporting care home staff deliver high quality end-of-life care. Int J Palliat Nurs. 2016; 22(10): 474-481.\u003c/li\u003e\n\u003cli\u003eMitchell SL, Miller SC, Teno JM, Davis RB, Shaffer ML. The advanced dementia prognostic tool (ADEPT): A risk score to estimate survival in nursing home residents with advanced dementia. J Pain Symptom Manage. 2010; 40(5):639\u0026ndash;51.\u003c/li\u003e\n\u003cli\u003eVandervoort A, van den Block L, van der Steen JT, Volicer L, Vander Stichele R, Houttekier D, et al. Nursing home residents dying with dementia in Flanders, Belgium: A nationwide postmortem study on clinical characteristics and quality of dying. J Am Med Dir Assoc. 2013; 14(7):485\u0026ndash;92.\u003c/li\u003e\n\u003cli\u003eJohnstone M. Bioethics: A nursing perspective. Chatswood: Elsevier; 2008.\u003c/li\u003e\n\u003cli\u003eJokiniemi K, Pietil\u0026auml; AM, Kylm\u0026auml; J, Haatainen K. Advanced nursing roles: a systematic review. Nurs Health Sci. 2012; 14(3):421-31.\u003c/li\u003e\n\u003cli\u003eBoyd J, Barron D, Maule L. Employing an advanced nurse practitioner in a care home. Nurs Times. 2019; 115(6): 45-7.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-nursing","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"nurs","sideBox":"Learn more about [BMC Nursing](http://bmcnurs.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/nurs/default.aspx","title":"BMC Nursing","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Dementia, pain, end-of-life, caring, nursing home, nurses, education","lastPublishedDoi":"10.21203/rs.2.16091/v4","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.2.16091/v4","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground \u003c/strong\u003eOf the Swedish people with advanced dementia, the majority die in nursing homes. Unresolved pain can occur in people with a terminal illness such as dementia. However, pain management in people with advanced dementia is often suboptimal and inadequate, with fewer palliative care interventions than offered to cancer patients. Although they are largely responsible for the care of these people, few studies have addressed the experiences of registered nurses in this respect. Therefore, the aim of this study was to describe the experiences of nurses in caring for people with advanced dementia and pain at the end of life.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eMethods \u003c/strong\u003eThe study had a descriptive explorative design. Individual qualitative, semi-structured interviews were carried out with thirteen nurses from twelve nursing homes in Sweden.\u0026nbsp;The results were analysed using thematic content analysis.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eResults \u003c/strong\u003eThe nurses described communicative, relational and organisational challenges. One major issue involved difficulties in communicating with the person with advanced dementia, resulting in uncertain pain assessment. Other difficulties involved the differentiation of pain from anxiety, the balance of benefits and risks with morphine administration, and the creation of good relationships with healthcare personnel and the persons’ relatives. Relatives can greatly affect the assessment and management of pain, both because of their ability to interpret pain behaviour and by questioning the care given. Good pain management was facilitated by good communication and relationships with healthcare staff and relatives, extensive professional nursing experience, and already knowing the person with advanced dementia.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eConclusions \u003c/strong\u003eThis study highlights the need for nursing homes to employ specialist nurses who have been trained in the appropriate knowledge and skills to deal with the challenges of end-of-life care for people with advanced dementia and pain. Additionally, there should be resources and strategies available for providing information to family members and for involving them in the decision-making process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administer morphine or not.\u0026nbsp;\u003c/p\u003e","manuscriptTitle":"End-of-life care for people with advanced dementia and pain: A qualitative study in Swedish nursing homes","msid":"","msnumber":"","nonDraftVersions":[{"code":4,"date":"2020-10-21 01:08:58","doi":"10.21203/rs.2.16091/v4","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorAssigned","content":"","date":"2020-10-13T12:00:00+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2020-10-12T12:00:00+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2020-10-12T12:00:00+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-nursing","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"nurs","sideBox":"Learn more about [BMC Nursing](http://bmcnurs.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/nurs/default.aspx","title":"BMC Nursing","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}},{"code":3,"date":"2020-03-30 16:28:52","doi":"10.21203/rs.2.16091/v3","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Major revision","date":"2020-09-21T12:00:00+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2020-09-06T12:00:00+00:00","index":2,"fulltext":"Recommendation: Accept after minor essential revisions\nForm responses:\n---\n\nComments to Author:\n---\nComments\n1. Thank you for the opportunity to read this interesting paper, highlighting a vulnerable patient group at risk of receiving optimal palliative care.\n2. Page 8, line 80. Revise the sentence. Is there a word missing? \"In Sweden, one in five is 65 or older and is one of Europe's fastest-growing populations of elderly citizens, and therefore an increased dementia-based public health burden can be expected\"\n3. Page 8, line 85. It might be helpful for the reader to explain the different types of nursing homes in Sweden, the ones for eldery people with need of somatic care and for people with advanced dementia.\n4. Page 9, line 96-100. Sounds like a contradiction due to the fact that earlier in the text it is stated that people with advanced dementia have complex needs (which they have) but receive general palliative care. However, later in the text it is stated: \"Specialised palliative care is provided to patients with complex symptoms or special needs…\" Perhaps this could be something to bring up in the discussion. Are people with advanced dementia in need of specialised palliative care to a greater extent? Perhaps also discuss whether this should be organised through home-visits by specialists due to the fact that people with advanced dementia are fragile and at risk of confusion if moved to a different setting, such as a health care unit.\n5. Page 9, line 116. \"Since persons with dementia at the end of life find it difficult, or are unable, to self-report pain, many of the available pain assessment tools cannot be used\". However, there are pain assessment tools where self-report of pain is not included, for instance; Abbey pain scale, Doloplus 2. These should be mentioned here.\n6. Page 10, line 130. \"Sixteen of the forty-six administrative managers at the randomly chosen nursing homes permitted the study\". This low number makes me wonder why the majority of the administrative managers chose not to permit the study. Is this something you investigated further?\n7. Page 10, line 127. Please specify if the nurses were working in nursing homes specialised in dementia care or nursing homes for eldery people in general (according to my experience people with dementia sometimes live in nursing homes for eldery people in general since they moved there before they developed dementia) . It is of importance because knowledge about assessing pain in people with dementia may be higher in special dementia care units due to the fact that these units may be more knowledgeable about cognitive diseases and how these affect the ability to verbalise pain. It also increases the possibilities to assess the transferability of the study.\n8. Page 10, line 139-140. Were any of the nurses specialised in geriatric nursing?\n9. Page 11, line 159. Even though you clarified for the nurses that end-of-life care meant the last weeks and days of a person's life, it may be difficult to identify when the last weeks or days actually occur. For example, there might be a difference if the person is almost unconscious laying in bed or walking around with a risk to fall. Your reflections about this should be brought up in the discussion.\n10. Page 12, line 169. You should give an example of the text analysis; how you came up with your final themes - content of original text \u003e codes \u003e categories \u003e themes. Would be transparent and give the reader a better picture of the process.\n11. Page 13, line 183-184. It's worrysome that the nurses stated there \"…was a lack of non-verbal communication\" caused by dementia. This implies a lack of knowledge and also a quite disrespectful way of seeing these patients. The disease often affects the ability to communicate verbally but not non-verbally. This is a misunderstanding! Rather it is the people around them having difficulties interpreting their behaviour. For instance, agitation can be a sign of pain, constipation, hunger or disturbing factors in the environment (just to mention some). This sentence should be revised or further discuss the nurses' potential lack of knowledge about dementia diseases if they really believe that people with dementia don't communicate non-verbally.\n12. Page 13, line 202. Please specify verbal communication instead of communication since people with dementia DO communicate even though people around them don't understand…\n13. Page 14, line 210-212. \"Most of the nurses used the Abbey Pain Scale assessment tool. However, some of the nurses did not use any assessment tools at all, believing that the available tools were inadequate, or that there were no guidelines at all. Instead, these nurses assessed pain by intuition\". According to National Board of Health in Sweden, pain estimation should be made in the end of life. Abbey Pain Scale is a valid pain assessment tool that can be used for patients with advanced dementia and other patients who cannot verbally express their pain. In Sweden the palliative register provide knowledge about palliative care, they support use of Abbey Pain Scale for people who cannot verbalise their pain. I find it alarming that nurses rather assess pain by intuition than using an assessment tool! The use of an assessement tool provides a structure and the possibility to evaluate interventions. This should be brought up in the discussion.\n14. Page 18, line 303. Please change the abbreviation PWAD to person with advanced dementia.\n15. Page 19, line 340. Please change the abbreviation PWAD to person with advanced dementia.\n16. Page 21, line 379. According to what is stated in the study, the nurses mostly focused on the physical pain and morphine administration to alleviate it. Still they mentioned a lack of time to meet the patients' needs. However, other aspects of pain relief such as emotional, social, and spiritual needs probably are more time-consuming to meet than physical pain with pharmalogical interventions. Holding hand and comfort are mentioned as non-pharmalogical nursing interventions to address the other possible needs, but it would be interesting to discuss further why these components almost weren't brought up by the nurses.\n17. Page 22, line 405-409. Were break point conversations mentioned during the interviews? Could be a way of informing relatives. Perhaps something to mention in the discussion.\n18. Page 23, line 431-467. This paragraph has already been mentioned, page 22, line 394-430.\n19. Page 25, line 481. Very true. Interesting idea with external palliative care specialists. A problem might be the difficulties in knowing when a person with dementia is reaching end of life.\n* Publons Reviewer Recognition. Springer Nature can send verification of this review directly to Publons (a subsidiary of Clarivate Analytics). If you would like to take advantage of this service, please click on the “Yes” option below. Your name, email address, title of the reviewed manuscript, name of the journal, and date of your review submission (the “Review Data”) will then be transmitted to Publons upon publication of the manuscript. If you have already registered at Publons, they will notify you of the receipt of this review and update your profile as per your settings and their policy. If you are not registered with Publons, you will receive an email from them asking you to register in order for them to be able to recognize your review on your new profile page. Publons may use the Review Data to generate derivative metadata for the benefit of Publons and you as a reviewer, carefully considering the sensitivity of such information. For example, Publons may verify your record as a reviewer by updating your profile published on its webservice if you have registered for such service or help editors to identify candidate reviewers. Please find the details of processing in Publons’ privacy policy https://publons.com/about/terms: **Yes**\n* Declaration of competing interests: **I declare that I have no competing interests.**\n* Reviewer Publication Consent. I agree for my report to be made available under an Open Access Creative Commons CC-BY License (http://creativecommons.org/licenses/by/4.0) if this manuscript is accepted for publication. Any comments that I do not wish to be included in the published report have been included as confidential comments to the editor, which will not be published.: **I agree to the terms of the CC-BY 4.0 license; please publish my name with my report.**\n* Is the study design appropriate to answer the research question (including the use of appropriate controls), and are the conclusions supported by the evidence presented?: **Yes**\n* Are the methods sufficiently described to allow the study to be repeated?: **No**\n* Is the use of statistics and treatment of uncertainties appropriate?: **Yes**\n* Is the presentation of the work clear?: **No**\n* Are the images in this manuscript (including electrophoretic gels and blots) free from apparent manipulation?: **Yes**\n"},{"type":"reviewerAgreed","content":"","date":"2020-08-16T12:00:00+00:00","index":2,"fulltext":""},{"type":"editorInvitedReview","content":"","date":"2020-04-04T12:00:00+00:00","index":1,"fulltext":"Recommendation: Reject\nForm responses:\n---\n\nComments to Author:\n---\nDespite the extra work that has been done with this paper, I still feel that it is sending out the wrong message about the assessment and management of pain in frail older people with advanced dementia in care homes.\n\nYes, the authors have responded to the anagram PWD and replaced it with words. But it has been done in such a way as not to improve the text. There has been no trouble taken to finesse the phrase with other words in the text. This is likely to be a language difficulty but it would have been good if the authors could have asked someone to help.\n\nDespite dividing the Discussion into sections, for me some of the arguments are inaccurate.\nAn example of this is: pg.17 (lines 16-23) highlighted in yellow. It sounds as though the authors consider 'dying' to be painful - and as one gets closer to death so the pain gets worse. As Professor Worcester rightly says in his book The Care of the Aged, the Dying and the Dead, 'dying itself is not painful '….. it is dying of a painful disease that causes pain. Thus, pain in frail older people in care homes needs to be assessed and managed months before death - for example: rheumatoid arthritis, stroke pain, osteoarthritis etc. I know this study was on end of life care/pain - but if pain is controlled by transdermal patches with people with advanced dementia when they have it, then often these transdermal patches rarely need to be increased. Nothing of this is mentioned in the study - and I do feel that the article runs the danger of publishing inaccurate practices.\nPg.18 \u0026 19 I find this newly inserted paragraph factually misinterpreted when discussing frail older people with advanced dementia. Dementia itself as it progresses does not cause pain - as previously stated pain needs to be palliated months before coming to the dying period. Yes, with a cancerous tumour as it progresses and perhaps pinches on nerves or progresses to the liver or the bones - this will cause pain. However, in advanced dementia this is not the case. There rarely needs to be an increase in morphine as the person with advanced dementia faces the last days of life - in fact this is likely to be contra-indicated in frail older people with 'old' kidneys especially if the person who is dying is no longer eating adn drinking. \nSadly, the authors have not realised that this paragraph that I am talking about here has also been added to Pg.20.\n\nI want to thank the authors for the re-working of this article but for me I am afraid I have to reject it.\n* Are the methods appropriate and well described?: **Yes**\n* Does the work include the necessary controls?: **Unable to assess**\n* Are the conclusions drawn adequately supported by the data shown?: **No**\n* Are you able to assess any statistics in the manuscript or would you recommend an additional statistical review?: **Not relevant to this manuscript**\n* Quality of written English: **Needs some language corrections before being published**\n* Declaration of competing interests: **I declaire that I have no competing interests**\n* I agree to the open peer review policy of the journal. I understand that my name will be included on my report to the authors and, if the manuscript is accepted for publication, my named report including any attachments I upload will be posted on the website along with the authors' responses. I agree for my report to be made available under an Open Access Creative Commons CC-BY license (http://creativecommons.org/licenses/by/4.0/). I understand that any comments which I do not wish to be included in my named report can be included as confidential comments to the editors, which will not be published.: **\nI agree to the open peer review policy of the journal**\n"},{"type":"reviewerAgreed","content":"","date":"2020-03-26T12:00:00+00:00","index":1,"fulltext":""},{"type":"editorAssigned","content":"","date":"2020-03-24T12:00:00+00:00","index":"","fulltext":""},{"type":"reviewersInvited","content":"","date":"2020-03-24T12:00:00+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2020-03-23T12:00:00+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2020-03-23T12:00:00+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-nursing","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"nurs","sideBox":"Learn more about [BMC Nursing](http://bmcnurs.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/nurs/default.aspx","title":"BMC Nursing","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}},{"code":2,"date":"2020-01-21 20:49:53","doi":"10.21203/rs.2.16091/v2","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Major revision","date":"2020-03-02T12:00:00+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2020-02-18T12:00:00+00:00","index":2,"fulltext":"Recommendation: Reject\nForm responses:\n---\n\nComments to Author:\n---\nI am afraid I still have fundamental problems with this paper.\nI do not like the abbreviation - PWAD - people with advanced dementia. I feel this is disrespectful. There are other phrases that can be used alongside writing it out in full i.e. for those\nwho cannot communicate their pain'\n\nI am not convinced that the following paragraph is good enough and I feel there is an undercurrent of such thinking throughout the paper without it being critically appraised in the Discussion:\n\"…..The most challenging aspect is finding the right balance between providing adequate pain relief and avoiding respiratory depression. Many nurses said that they would rather administer morphine with generosity than risk giving too little. This attitude is in line with that in the study of Brorson and colleagues [27], where nurses expressed a will to overtreat rather than undertreat pain, despite being mindful of the risk that they could cause a hastening of death\".\nResearch shows that respiratory depression isn't an issue in the administration of morphine for pain if pain is present - the problem comes when too much opioids are used and they are not titrated against the pain. Interestingly, even when morphine is given for extreme breathlessness in severe COPD without pain the patient is not rendered unconscious. In the case of 'pain' as reported in this paper, pain acts as an antidote to respiratory depression. I believe if a nurse knows how to assess and manage pain it won't mean that it is either over or under….. over time with careful person-centred pain assessment and management the correct dose can be found….. it is more about having the knowledge of how to titrate morphine against the observable effects of pain in frail older people with and without dementia. It is also about knowing the interaction between analgesic and other medications like anti-psychotics. Unfortunately, none of this has been discussed in this paper. It might be out of the remit of the authors knowledge but then it would have been better to have been written with someone with expertise in palliative care/care homes.\n\nThe Swedish context could have been discussed in more detail - it sounds from the authors that there are doctors within the Swedish nursing homes. What about the importance of regular multi-disciplinary team discussions (if possible with palliative care expert) in relation to empowering care home nurses/staff with knowledge about assessment of pain and its treatment.\n\nOne of the further points in the Discussion/conclusion concerns me: it is alarming to hear a nurse say that …\"she gives morphine to a person with dementia in order to calm down the relative\" without any critical appraisal of highlighting it as wrong practice.\n\nI am really sorry but there needs to be much more critical appraisal for such an important subject for this paper to be published.\n\n\n\nUnfortunately, I still have problems with the depth of this paper. I am not sure that the authors have adequately argued the various discussion points. They just seem to say 'we need advanced nurse practitioners'….. We don't have many ANPs in our nursing homes in the UK - but the nursing home team (nurses and care assistants) + help with GP or visiting PC nurse) together will sit down…. (see Kinley \u0026 Hockley 2017 regarding monthly m/disciplinary rounds)…..it's about good PC training. Perhaps that sill means that you need ANPs but I don't feel this paper argues you that enough.\n* Are the methods appropriate and well described?: **Yes**\n* Does the work include the necessary controls?: **Unable to assess**\n* Are the conclusions drawn adequately supported by the data shown?: **No**\n* Are you able to assess any statistics in the manuscript or would you recommend an additional statistical review?: **Not relevant to this manuscript**\n* Quality of written English: **Acceptable**\n* Declaration of competing interests: **I declare that I have no competing interests' below**\n* I agree to the open peer review policy of the journal. I understand that my name will be included on my report to the authors and, if the manuscript is accepted for publication, my named report including any attachments I upload will be posted on the website along with the authors' responses. I agree for my report to be made available under an Open Access Creative Commons CC-BY license (http://creativecommons.org/licenses/by/4.0/). I understand that any comments which I do not wish to be included in my named report can be included as confidential comments to the editors, which will not be published.: ** I agree to the open peer review policy of the journal**\n"},{"type":"reviewerAgreed","content":"","date":"2020-02-01T12:00:00+00:00","index":2,"fulltext":""},{"type":"editorInvitedReview","content":"","date":"2020-01-29T12:00:00+00:00","index":1,"fulltext":"Recommendation: Accept after minor essential revisions\nForm responses:\n---\n\nComments to Author:\n---\nThe requested amendments to the original manuscript have been made satisfactorily.\n\nON PAGE 11, LINE 232, Please remove 'THE' between 'WHEN' and 'THEY'.* Are the methods appropriate and well described?: **Yes**\n* Does the work include the necessary controls?: **Unable to assess**\n* Are the conclusions drawn adequately supported by the data shown?: **Yes**\n* Are you able to assess any statistics in the manuscript or would you recommend an additional statistical review?: **Not relevant to this manuscript**\n* Quality of written English: **Acceptable**\n* Declaration of competing interests: **I declare that I have no competing interests**\n* I agree to the open peer review policy of the journal. I understand that my name will be included on my report to the authors and, if the manuscript is accepted for publication, my named report including any attachments I upload will be posted on the website along with the authors' responses. I agree for my report to be made available under an Open Access Creative Commons CC-BY license (http://creativecommons.org/licenses/by/4.0/). I understand that any comments which I do not wish to be included in my named report can be included as confidential comments to the editors, which will not be published.: ** I agree to the open peer review policy of the journal**\n"},{"type":"reviewerAgreed","content":"","date":"2020-01-25T12:00:00+00:00","index":1,"fulltext":""},{"type":"reviewersInvited","content":"","date":"2020-01-23T12:00:00+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2020-01-17T12:00:00+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2020-01-16T12:00:00+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2020-01-16T12:00:00+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-nursing","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"nurs","sideBox":"Learn more about [BMC Nursing](http://bmcnurs.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/nurs/default.aspx","title":"BMC Nursing","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}},{"code":1,"date":"2019-10-15 17:24:56","doi":"10.21203/rs.2.16091/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Major revision","date":"2019-12-06T12:00:00+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2019-11-16T12:00:00+00:00","index":2,"fulltext":"Recommendation: Major revisions required\nForm responses:\n---\n* Are the methods appropriate and well described?: **No**\n* Does the work include the necessary controls?: **Unable to assess**\n* Are the conclusions drawn adequately supported by the data shown?: **Yes**\n* Are you able to assess any statistics in the manuscript or would you recommend an additional statistical review?: **Not relevant to this manuscript**\n* Quality of written English: **Acceptable**\n* Declaration of competing interests: **I declare that I have no competing interests**\n\nComments to Author:\n---\nPain in frail older people in care homes is a very important subject as we know from research that between 42-80% of care home residents have pain that is not well controlled. The authors have undertaken 13 semi-structured interviews of nurses from 12 different Swedish nursing homes in one city.\n\nMethods:\nIt was somewhat confusing to understand what was the definition regarding end of life care - were the nurses asked about general pain of residents in the nursing home who were frail/palliative care or specific to the last days/weeks to live i.e. end of life care? Some definition would have been helpful.\nI would like to have seen the questionnaire used.\nFor me I wondered why only 13 interviews were undertaken and it wasn't until the 'limitations of the study' that you talk about the difficulty of getting care home staff to take part in research. Some reference to this in the Methods would have been helpful.\nThe authors detail that their analysis was undertaken using inductive qualitative content analysis. From my understanding content analysis is different from thematic analysis. For me content analysis uses a descriptive approach in both coding data AND its interpretation of quantitative counts of the codes. Is this what was done? I feel what is described is more thematic analysis which is purely a qualitative detail of the nuances from the data.\n\nResults:\nGenerally there was no content analysis other than rather broad use of 'many' 'some cases'. It feels to me that it was thematic analysis that was used.\n\nI liked the three main themes that came from the data. The use of data in the first section on 'communicational' challenges is good. However, the second theme 'relational' challenges feels rather thin in comparison. The 'organisational' challenges results appeared to be about staffing and not having enough staff to being able to sit with the dying. Interestingly, an important text in the literature on dying in old age highlights it to be very different from dying from a painful disease such as cancer (Worcester 'The Care of the Aged, the Dying and the Dead - 1940). Dying itself is not painful but it is dying from a painful disease which of course is distressing. If older people's pain has been properly controlled while they are relatively mobile in care homes with the use of analgesics such as transdermal patches then this continues into the dying phase etc. Sitting holding someone's hand won't relieve physical pain - or perhaps this was all about psycho-social pain??? Loneliness is present in care homes but again this is about older people still able to engage (whether cognitively impaired or not). Yes, we need to sit with the dying - but this is not about pain. Also, under the sub-section 'lack of competence' it felt that some of the text was more of a 'discussion' than 'results'.\nI think there could have been more use of the quantitative data especially re age (most of your nurses were over 50 years old)… was there any difference between the data of what was said by the more experienced nurses compared to the younger nurses? Was there any nursing home that had better teamwork/leadership (organisational/relational data) - did this improve pain????\n\nDiscussion: I felt throughout this paper there was an under-current that nurses have to be present on the floor to assess pain at end of life - with no other options discussed in light of the lack of nurses taking a career in care homes - and clearly the difficulty the Swedish care homes have with staffing (this is universal for care homes in the western world). The rather sweeping statement 'To carry out individual expert assessment, we thus presently need experienced and specialist-trained nurses in nursing homes' - needs discussion in light of alternative systems as a result of the reduction of nurses generally. I was interested that most of the nurses interviewed were over 50 years of age and so personally I could see that that is what they might say as that is what they have been used to.\nIn my experience in care homes in the UK, many senior carers are able to at least alert a healthcare professional about a residents pain because they know their residents so well. Does this happen in Sweden?? What about teamwork within the nursing home? The literature about the role of the advanced nurse practitioner in/across care homes with/without on-site nurses would have been useful to add.\nThere could have been more discussion about the importance of building a relationship with care homes prior to research in order to capitalise on their involvement. Many care homes are research naive.\n\nIt is important that the authors know that the phrase is NOT 'advanced care planning, but either 'advance care planning' or anticipatory care planning'.\n\nIn my opinion, this article is rather 'thin' on the relational and organisational results + these themes are not fully are limited. More discussion regarding alternative systems would have been interesting.\n\nAs it is at present, sadly I feel that this article is not publishable with BMJ Nursing"},{"type":"editorInvitedReview","content":"","date":"2019-11-05T12:00:00+00:00","index":1,"fulltext":"Recommendation: Major revisions required\nForm responses:\n---\n* Are the methods appropriate and well described?: **Yes**\n* Does the work include the necessary controls?: **Yes**\n* Are the conclusions drawn adequately supported by the data shown?: **Yes**\n* Are you able to assess any statistics in the manuscript or would you recommend an additional statistical review?: **Not relevant to this manuscript**\n* Quality of written English: **Needs some language corrections before being published**\n* Declaration of competing interests: **I declare that I have no competing interests.**\n\nComments to Author:\n---\nThe study provides very useful information to guide improved care of people with dementia in the supported care environment.\n\nThere are some areas, however, which need to be attended to, such as re-phrasing statements, word changes and clarification of key statements and study methods, as follows:\n\nThroughout the entire paper, please replace the term 'patient with dementia' with 'person living with dementia' OR 'person with dementia'. A person with dementia living in a nursing home is not a 'patient'.\n\nABSTRACT\nBackground - As the statement about pain and end of life is not accurate, its best to replace the statement 'Pain is a common symptom in patients at end of life...' with the following 'UNRESOLVED PAIN CAN OCCUR IN PEOPLE WITH A TERMINAL ILLNESS SUCH AS DEMENTIA'. you must not make declarative statements without reference to very robust (irrefutable) evidence.\n\nARTICLE\nBackground - Page 2, lines 73-74.\nReplace the following '...dementia involves losing your mental functioning and going through personality changes..' with '...INCLUDES COGNITIVE IMPAIRMENT, NEUROPSYCHIATRIC SYMPTOMS AND LOSS OF INDEPNEDENT FUNCTION'. It is important not to make declarative statements which are not supported by irrefutable evidence, e.g. many people with dementia do NOT have personality changes, but they all have changes in cognitive function and ability to independently attend to activities of living.\n\nPage 4, lines 8-10.\nReplace all of the following sentence commencing 'as dementia connects....' with 'SINCE PEOPLE LIVING WITH DEMENTIA HAVE DIFFICULTIES IN, OR ARE UNABLE TO, SELF-REPORT PAIN, MANY OF THE PAIN ASSESSMENT TOOLS AVILABLE ARE NOT HELPFUL'.\n\nPage 5. Lines 117-118.\nEthical site approvals. It would be better to replace the sentence with 'ETHICAL APPROVAL FOR SITE PARTICIPATION WAS NOT OBTAINED, AS THIS IS NOT REQUIRED IN SWEDEN FOR NON-INTERVNETIONAL RESEARCH WHICH POSES NO IDENTIFED RISKS FOR STUDY PARTICIPANTS, OR DOES NOT REQUIRE PROCESSING OF SESNSITIVE DATA'.\n\nPage 6, Lines 125-126.\nReplace the following ' ...the education was just 2-year...' with 'FROM A 2-YEAR TRAINING PROGRAM'.\n\nPage 6, Line 133.\nReplace '...was made to suit the study aim..' with '..Questions were guided by the study aim.'\n\nPage 7.\nProvide details on how the study site and participant identities were protected (made confidential) when transcribing and analysing the data, and when entering and storing the data. Were unique identifier codes allocated to all data and how were the names of the sites and participants kept secure when storing these data?? Were any identifiers erased from the audio-recordings and the transcripts??\n\n\nPage 12, line 29.\nReplace ..'dye' with 'die'.\n\nPage 12, line 262\nReplace ..'them in step instead..' with '..NURSES TO STAY WITH THE PETRSON WHO IS DYING..'\n\nPage 12, line 283\nReplace '...difficulties with deputies who were unknown for the patient..' with '..with (name of staff role) who have no knowledge of the person and were unaware of the person's baseline behaviour..'\n\nPage 13, line 291.\nReplace 'communicational' with 'communication'.\n\nPage 13, line 292\nReplace '..pain is the most common symptom..' with '.. unresolved pain commonly occurs in people with dementia at end of life'. NOTE- PAIN IS NOT A SYMPTOM OF DEMENTIA, SO THIS CLAIM IS INACCURATE.\n\nPage 13, line 292\nReplace '.. a top priority to relieve in palliative care...' with '..PAIN RELIEF IS A PRIORITY IN PALLIATIVE CARE..'\n\nPage 16, line 356\nReplace '..relative's comfort..' with '..RELATIVE'S WELL-BEING..'\n\nr\n\n"},{"type":"reviewersInvited","content":"","date":"2019-11-04T12:00:00+00:00","index":"","fulltext":""},{"type":"reviewerAgreed","content":"","date":"2019-11-04T12:00:00+00:00","index":1,"fulltext":""},{"type":"reviewerAgreed","content":"","date":"2019-11-04T12:00:00+00:00","index":2,"fulltext":""},{"type":"checksComplete","content":"","date":"2019-10-09T12:00:00+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2019-08-27T12:00:00+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2019-08-26T12:00:00+00:00","index":"","fulltext":""},{"type":"submitted","content":"","date":"2019-08-23T12:00:00+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-nursing","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"nurs","sideBox":"Learn more about [BMC Nursing](http://bmcnurs.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/nurs/default.aspx","title":"BMC Nursing","twitterHandle":"@BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"7724eb2a-f593-45b2-bb81-34b322f30f03","owner":[],"postedDate":"October 21st, 2020","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[{"id":76457,"name":"Nursing"}],"tags":[],"updatedAt":"2021-03-27T15:00:52+00:00","versionOfRecord":{"articleIdentity":"rs-6744","link":"https://doi.org/10.1186/s12912-021-00566-7","journal":{"identity":"bmc-nursing","isVorOnly":false,"title":"BMC Nursing"},"publishedOn":"2021-03-20 15:00:31","publishedOnDateReadable":"March 20th, 2021"},"versionCreatedAt":"2020-10-21 01:08:58","video":"","vorDoi":"10.1186/s12912-021-00566-7","vorDoiUrl":"https://doi.org/10.1186/s12912-021-00566-7","workflowStages":[]},"version":"v4","identity":"rs-6744","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"identity":"rs-6744","version":["v4"]},"buildId":"ApUGefWb6u5IBVtyqm6d5","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}