"It is better for me to die than to be disgraced”: Perceptions of Worse than death health states in Ghana

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Perceptions about health states considered worse than death also vary based on socio-cultural norms as well as health system capacity. We explore health states considered to be worse than death by Ghanaian respondents as well as reasons for opting for death in those health states. Methods We interviewed 28 participants from three regions in Ghana to explore this concept. The data were analysed inductively and thematically. Results We identified two main health states domains, physical impairments and mental impairments, that were considered as worse than death. The main reasons for preferring death to these particular health states were being a burden and loss of status. Decisions regarding health states worse than death holds considerable importance, particularly in a context where culture and societal norms play a role in shaping how health related quality of life is assessed. Conclusion Findings from the study may provide evidence on healthcare resource allocation and aid policymakers and clinicians in making informed decisions on which treatments to prioritize, and how to maximize the overall health and well-being of individuals. worse than dead health states EQ5D5L health related quality of life value of life perceptions about death Figures Figure 1 Plain English Summary This study was conducted to understand how some Ghanaians perceive death and the relationship between health-related quality of life and death using the EQ5D5L instrument’s ‘worse than dead’ concept. The study answered the question ‘what health conditions are perceived by Ghanaians to be worse than dead’ and ‘the factors that influence their choice to opt for death, than to live with a particular health condition. We found that Ghanaians interviewed would rather die than live with health conditions where they were physically impaired, impacting on their ability to function adequately in the society, particularly, selfcare, mobility and employment. The main reasons given for preferring death than to live with those health conditions were loss of social status, loss of personhood and becoming a physical and financial burden on family members and loved ones. Introduction Across different cultures worldwide there are varying understandings of and experiences with the concept of death ( 1 , 2 ). In many African cultures, considerable importance is placed on the manner of death, with categorizing deaths as either "good" or "bad", depending on the manner of death, alongside the accompanying burial rites and rituals ( 3 – 6 ). The concept of anticipating or preferring death over particular health conditions has been described across cultures worldwide ( 7 , 8 ). Studies have demonstrated that individuals who perceive to be approaching the end of their lives often opt for death over living with serious health conditions that impact their health related quality of life (HRQoL) in the absence of treatment ( 7 – 10 ). Multiple studies have explored the assessment of the HRQoL and health states among specific patient groups to shed light on diverse patient perspectives concerning the "worse than dead" (WTD) concept using the EQ-5D-5L instrument ( 11 – 14 ). EQ-5D-5L instrument, consisting of five dimensions (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) each with five levels of severity (no problem, slight problem, moderate problem, severe problem, and extreme/unable) are used to generate utilities for estimating quality-adjusted life years (QALYs), a health outcome for use in economic evaluations. These utilities are derived in a valuation study where methods such as standard gamble, time trade-off and discrete choice experiment are used. Using TTO valuation technique, participants are presented randomly selected number of health states derived from approximately 3,125 possible health states from the EQ-5D-5L instrument to choose between spending time (10 years for conventional TTO) in a state of "full health" or in a specific EQ-5D-5L health state ( 11 ). The time spent in each health state is varied in an iterative process until the respondent comes to a point where they are indifferent between two health states. Alternatively, a respondent can choose to die immediately than to live for 10 years in the health state they think is WTD. WTD health states refer to conditions that respondents from both the general population and specific disease groups, as part of HRQoL valuation surveys, consider to be more undesirable than death itself. Essentially, respondents in these studies express a preference for death over living in these hypothetical health conditions that are presented during the survey iteration process ( 15 ). It should be noted that the stated preference of individuals in a study may not necessarily be their preference (revealed) when faced with that condition in real life, and these varies across different cultures. For example, people living with chronic diseases have been reported to adapt and cope with their symptoms overtime with or without engaging in activities perceived to promote coping such as spirituality (Megari 2013). That said, whereas some studies have reported a collinearity between stated and revealed preferences in healthcare ( 16 – 18 )others have not ( 19 , 20 ). Our study sought to explore the contextual ‘value of life’ in Ghana through investigating respondents’ rationale for valuing health states as WTD, using standardised method in health economics. In this instance, a sample of participants from the Ghana valuation study (used TTO valuation technique) ( 21 ), who identified any health state as WTD were interviewed qualitatively about the rationale behind their responses. There were also asked about health conditions they considered WTD and was willing to die than live in it. Findings from this study will provide valuable insights into the existing quantitative literature on the factors influencing their choices, and consequently the ‘value of life’ in the Ghanaian culture. It will also provide health decision makers with evidence-based information in allocating health resources to disease conditions and for planning patient centred health programs and interventions for end-of-life programs and palliative care. Materials and methods Participants and setting This study is a part of a larger research project that aimed to establish the first EQ-5D-5L value set for the Ghanaian population (hereafter referred to as the Ghana valuation studies) ( 21 ). Study participants were recruited from the three ecological zones of Ghana: Savannah, Forest and Coastal. One region each was randomly selected from each ecological zone: Northern, Ashanti and Greater Accra respectively. The majority of residents in these regions are into agricultural activities, service and sales work; commerce, manufacturing, industries, service-related activities and agriculture; and fishing, commercial activities, livestock farming, and agriculture, respectively ( 22 ). We interviewed 28 individuals in total with more males than females (males n = 17, females n = 11) being interviewed. All study participants were formally educated. The average age of participants was 36 years. Many participants were married and gainfully employed (Table 1 ). Table 1 Socio-demographic characteristics of study participants N (%) Age at time of interview (years) 20–39 20 (71) ≥ 40 8 ( 29 ) Mean age 36 Gender Female 11 ( 39 ) Male 17 (61) Marital status Single 11 ( 39 ) Married 15 (54) Divorced 2 ( 7 ) Educational level Primary 3 ( 11 ) Junior high school 3 ( 11 ) Senior high school 8 ( 29 ) Diploma 2 ( 7 ) Tertiary 12 ( 43 ) Occupation Unemployed 1 ( 3 ) Formal employment 12 ( 43 ) Self-employed 15 (54) Ecological zone of residence Savannah 9 ( 32 ) Forest 11 ( 39 ) Coastal 8 ( 29 ) Ethnicity Akan 10 ( 36 ) Dagomba 10 ( 36 ) Grushi 1 ( 3 ) Ewe 1 ( 3 ) Ga/Adangbwe 6 ( 22 ) Religion Christian 16 (57) Islam 10 ( 36 ) Others 2 ( 7 ) Number of dependents 0–4 21 (75) ≥ 5 7 ( 25 ) Mean age of dependent 3.54 Data collection The interviews were conducted between August and October 2022 by the first and second authors. Ethical approval was obtained for the study: CHS-Et/M.10 - P4.4/2021–2022 and ETH22-7271. Study participants were purposively sampled based on their responses for the Ghana valuation studies. Participants were considered eligible for recruitment into the current study if in the Ghana valuation studies survey, they had indicated a WTD for a particular health state. A brief summary of the study was communicated to potential participants as well as their rights as participants in the study. All participants were given the option to schedule the interviews for a later time however all agreed to partake in the interview at the time consent was sought. Verbal consent was sought and recorded. Participants were asked about the rationale behind the health states they considered as WTD in the valuation studies. They were then asked about health conditions they considered as WTD, hence willing to die than live in it; and their reasoning behind willing to die than live with that particular health condition. The interviews were conducted in English and Twi (an Akan language widely spoken in Ghana ( 23 )), according to the preference of the participant, using an open-ended interview guide (Table 2 ). On an average, the interviews lasted between 30–35 minutes. Recruitment for participants ceased when new interviews did not reveal any new information. We considered the point of information redundancy as data saturation ( 24 , 25 ). Table 2 Example of Questions from Interview guide Interview guide domain Example open ended questions asked under domain Background • Please tell me about yourself • Please description your quality of life with regards to domains of the EQ5D5L (Mobility [your ability to walk and move about whenever you want to]; Self-care [e.g. bathing yourself); Usual activities [ e.g. shopping, going to church); ( 4 ) Pain and discomfort ( 5 ) Anxiety and depression Health states considered to be worse than death • Please tell me about the conditions/health states you considered to be worse than death (Prompt: Read out health states respondent chose as worse than death) • Tell me what it is about the health conditions that makes it worse than death. Factors influencing health states (conditions) considered as worse than death • What influenced your decision to choose death over these conditions (Prompt: What reasons? e.g. who did you consider when making the decision? What did you consider) Impact of health states (conditions) considered as worse than death on Quality of life • How do you think the conditions/health states you described as worse than death would affect your quality of life • In what ways would it affect your quality of life To foster subjectivity and reflexibility, authors acknowledged in the written proposal, all assumptions and limitations of the study ( 26 ), for example, the possible priming effect of health states chosen in the Ghana valuation study as WTD on participants perceptions enumerated in the interview. Data analysis All interviews were transcribed verbatim. The interviews conducted in Twi were translated and transcribed in English. AAA first analysed the data inductively and thematically following the processes recommended by Braun & Clarke (2019) ( 24 ). In the first step all transcripts were read multiple times to familiarise with the data. Next, systematic data coding begun after each transcript had been read multiple times by making notes in the transcripts in Microsoft word. In the next stage which involved generating initial themes, all notes were copied and pasted in an excel file and sorted out to group similar codes. Through this process initial themes were generated. For example, in the initial coding process, all codes that described the health conditions they were willing to die than live with it were grouped together. Next, these descriptions were analysed to determine the most prevalent and recurring health conditions. The most prevalent health conditions were considered as themes for further exploration. RA and AAE reviewed and validated these groupings and descriptions through multiple on-line discussions with AAA. In the next stage the themes identified were refined, defined and named by AAA, RA and AAE. The final stage of the thematic analysis process is the report presented below. Results The results presented focuses on participants perceptions of health conditions considered as WTD, hence willing to die than live with it, and their reasons for their choice. An overview of themes and subthemes is presented in Fig. 1 . Two main themes emerged from the study: ( 1 ) Perceptions of WTD health conditions; willing to die and ( 2 ) Reasons for opting for death. Perceptions of WTD health conditions contain responses about the health conditions in which respondents would prefer death to life. The theme ‘reasons for opting for death’ contains responses of with the rationale for preferring death to life in the health conditions mentioned previously. Perceptions of WTD health conditions considered; willing to die In this theme, study participants described health conditions with physical and mental impairments as WTD and willing to die than live with it respectively. Under these themes two sub-themes were identified ( 1 ) Physical Impairments and ( 2 ) Mental impairments. Physical impairments All participants opted for death to a condition where they experienced a form of physical immobility or entailed pain for the long term. “it’s better you cut things short than going through that pain and at the end of the day you will still die. If you just go in for the death its better than staying for the 10 years long and you will still be going through all those pains. So, it’s better you just cut things short”. (Male,42 years, Northern region) Other participants perceived situations where they had some form of physical disability/impairment for the long term as a situation that would greatly reduce their quality of health. The most common physical impairment was visual impairment and impairments with mobility. Even when pain was removed from physical impairments, particularly with regards to mobility, participants still chose not to live their life in those states. Interviewer So, if let’s say we remove the pain...but you still can’t walk… Respondent If I can’t walk there is nooo importance for me to be in existence. No. Interviewer Oh, but you know now there are machines that-even the wheelchair there is the one that you can press and then it will send you around? Respondent Yeah, but your situation is sad when you are in the wheelchair…in the sense that like it’s not every time someone will come to sit by you… it will be all you. So, if you are climbing these small stairs and you are in a wheelchair how can you do it? How can you go?... I don’t want to be in a wheelchair. If it comes, I go [die]. That’s all. Mental impairments A few participants believed living with mental health condition that caused distress for the long term was equivalent to living with a physical impairment and therefore preferred not to live with the condition for the long term. A 29-year-old male from the Greater Accra region explains “Depression? I can’t [live with it]. Regardless of what lies at the top. It’s like living in a very beautiful house but… for the depression, it’s suicidal, honestly” For many of these participants however, physical impairments were perceived to be much more difficult to manage or live with than a mental impairment. Most participants relayed that they would rather live with a mental impairment than a physical impairment. Reasons for opting for death Study participants chose not choosing to live with physical impairments (including pain) and mental impairments for two main reasons: avoidance of being a burden and loss of status. Burden For most participants, the thought of becoming a burden for their families was one of the factors that influenced their decision to opt for death. Participants described this burden in two forms ( 1 ) Time spent caregiving and ( 2 ) Financial burden. Time spent in caregiving A major concern of participants was the time that would be spent by family members caring for them. Participants opted for death in particular health states for families and those around them to spend their time doing something productive rather than caring for them. “To be sick and lying down for long period of time, unable to work and do nothing? And that my family would have to stop their work and cater for me all the time? I think at some point, I will become a nuisance…I would prefer dying than to live and be a burden to others” (Female,26years, Greater Accra region). Financial burden Participants were also concerned with being a financial burden on their families. Many participants believed the health conditions would render them finically unproductive. Therefore, rather than live with these health conditions for the long term which would involve financial investments without their contribution, they would prefer their family invest those monies in themselves. This was well articulated. “if I can’t do my regular activities I need not to live. The little money that I live behind the family should enjoy it. But if I continue to live for ten years there is not any cure. They will waste all the money on me and at the end I will go and leave them” (Male,42years, Northern region) Loss of status Loss of status was most prevalent reason for opting to die among participants in the Ashanti region. Many of the individuals interviewed there were concerned about the impact of debilitating illness on their social status as well as their status of personhood. The differences between these two are elaborated on below: Loss of social status Some participants described the potential effect of some health conditions on their standing in their community and family. For all participants in the Ashanti region and many in the other regions, allocating the task of self-care and particularly toileting was a situation that was perceived as unimaginable and at times unbearable for participants. “There is the saying that “it is better for me to die than to be disgraced”. We have something like that. You haven’t heard it. You are young…yes. “Disgrace does not suit the Akan’s child” means that, excuse me to say even if you want to go to toilet, you can’t do it, you have to call someone to come to your aid. Something that you could do before, someone has to come to [now] bath you. So, in the Akan culture those things are seen as not good things. So, we say “disgrace doesn’t suit the Akan’s child”. It is better to die than to live (Participant 13, Male, 50 years, Ashanti region) “Between disgrace and death, choose death. Meaning that, with all these problems, if I will be disgraced…Excuse me to say, it can happen that while lying down I can defecate on myself. I cannot walk? Who is going to help me to dress myself. I am being disgraced. If I die, there will be no problems after death. I am gone” (Male,49 years, Ashanti region). Participants in other regions echoed similar sentiments with some offering narratives of similar experiences. However, their responses were not as severe as participants in the Ashanti region. Loss of personhood Some health conditions appeared to negate the status of personhood, and this was the perception that was most prevalent among individuals in the Ashanti region. This was because of the conception and expectations of personhood prevalent in the culture. Once an individual was unable to fulfil these responsibilities and duties of personhood, they were considered not human in a sense. Participants describe the concept of a ‘living-dead’ where an individual although alive in the physical sense, is considered dead in the metaphysical sense since they do not do the activities that persons who are fully living-both physically and metaphysically do. “In my opinion if not because poisoning yourself or something like that is against the law, I would have said that death is better. Because if I am going through all this problem then I am like a living dead. So, if death comes during that period, it would be better for me…. The living dead means that… you are alive but dead. Someone who is dead cannot do anything. You are alive but you are unable to do any of those things” (Male, 49 years, Ashanti region) These sentiments also echoed across other regions although, to a lower extent compared to individuals from the Ashanti region. “You are living a life where you cannot do anything on your own. It is something like [being] lifeless. Someone who doesn’t exist is even better than you. Yeah. So therefore, I choose not to live…you cannot do anything that human beings are able to do. So therefore, I choose to die than to live” (Female, 22years, Northern Zone). Responses from some participants suggested that these ‘living-dead’ do not deserve the same privileges that others in the society enjoy. Participant’s description of individuals in certain health states state alludes to a dehumanising process which confirm the perception of a loss of personhood. “if you are living and the pain is still increasing without any medical attention, just nothing is relieving the pain and still increasing, you’re just wasting people’s time. You’re just wasting human life. In other sense, you are going to waste resources” (Male,23years, Ashanti region). Discussion We explored the concept of individual’s willingness to die in a particular condition they perceived as WTD following responses of health states considered as WTD in the Ghana valuation studies using the EQ-5D-5L instrument. We found that physical impairments were the most frequently cited conditions individuals were willing to die than live. To a much lesser extent, some individuals believed mental health conditions like depression was a health condition that could make them opt to die than live. The main reasons for preferring to die rather than live in those health conditions were being a burden and loss of status. Health conditions with physical impairments like pain and disabilities have been found in other studies as those respondents considered WTD, hence willing to die ( 7 , 10 ). Individuals in the Ghanaian context described physical impairments to mobility as the end of autonomy with many focusing on its implications for self-care. Concerns about the ability to maintain self-care has been identified as important factors in the consideration of WTD health states ( 9 , 10 ). Further, concerns about depending on others for assistance in the consideration of WTD health conditions, as well as becoming a burden has also been documented in other cultural contexts ( 27 , 28 ). We however identified concerns about not meeting obligations as one of the main factors influencing health conditions considered WTD, hence opting to die, in the Ghanaian context. Even in the absence of pain the thought of disability was still considered as a condition that would substantially impair an individual’s ability to contribute meaningfully to their society. In many cultures in Africa, the ability to contribute to the society in which one is born into is an important aspect and indicator of personhood ( 29 – 31 ). In the Akan (Ashanti region) culture, it is believed that personhood is not a status conferred on a human simply because of birth, but rather is achieved through the fulfilment of moral duties and obligations ( 30 , 32 , 33 ). The thought of being unable to fulfil this responsibility leading to the removal of the status of personhood is consistent with the Akan philosophy of personhood being conferred thus the possibility of its removal once obligations are not met ( 34 ). While the strong use of words like ‘garbage’ to describe individuals in such state may come off as ablest and derogatory, it is important to consider the context in which such conceptions of the state of disability arises and why such conditions are tied to experiences like shame. There are insufficient resources and infrastructure to support individuals with disabilities in Ghana to live a dignified and respected life ( 35 , 36 ). Many individuals with disabilities resort to ‘dehumanising’ acts like begging on the street in order to survive ( 37 ). This reinforces the stereotype of disability as a condition where one cannot be useful or productive in their society in a respectable manner and one that relegates individuals to a shameful position. Unlike Mbiti’s (1990) ( 29 ) use of ‘living dead’ to signify individuals who recently passed on, individuals from the Akan culture in our study describes ‘living dead’ as a state where individuals are physically present but lose their important metaphysical essence which is vital to their personhood. This becomes a state where an individual is no longer human and should not enjoy the privileges that come with personhood. While our evidence does not demonstrate this, there stands the possibility that these perceptions may influence how individuals in such health states may be treated if they are considered as not part of the living or unable to meaningfully contribute to their society. This raises debates about the structures that are available to protect individuals who may find themselves in such vulnerable health states. Might health professional conclude that an individual in such a state is no longer useful to discontinue treatment? In Ghana, as other countries in Africa, many individuals are sent home by medical professionals when conditions become dire ( 38 , 39 ). While this may satisfy cultural beliefs of letting an individual die in peace ( 40 , 41 ), it stands the risk of prematurely discharging patients who may benefit from additional treatment or end of life care. On the other hand, might a health professional continue treatment to prolong the life of an individual who in a sense does not exist? As Rubin et al (2016) ( 7 ) contend, death may not be an outcome which patients in certain conditions wish to prevent. The ethics of care in such a complex and at times contradictory context needs to be examined and expounded on ( 40 ). It is important to consider culturally sensitive individually patient centred treatments for patients who may not wish to prolong or continue treatment without just relegating them to their homes as is normal practice, where families without training on end-of-life care assume the burden of care. Palliative care in Africa, Ghana included, is severely underdeveloped ( 42 ). Currently in Ghana, palliative care is provided in only three public health institutions ( 43 ). Pain management in sub-Sahara Africa is also at its infancy and there are many barriers and challenges to improving pain management. The right infrastructure is not in place and there are misconceptions about the use of pain medication by patients and clinicians that prevent their uptake ( 38 ). There needs to be investments in infrastructure that can provide options for individuals to choose from. End of life care is a personal decision despite prevailing social norms and cultural beliefs. Lockhart et al (2001) found that perceptions of WTD health states are not always stable ( 44 ). Therefore, in the presence of, and access to the needed healthcare, it may be possible that conditions that were perceived to be unliveable become liveable. Decisions regarding health states WTD holds considerable importance, particularly in a context where culture and societal norms play a role in shaping how HRQoL is perceived and subsequently healthcare assessed. This helps ensure that healthcare resources are directed towards interventions that provide the greatest overall benefit to the individual, family and population. In essence, the findings from the study provide evidence on patient centred healthcare resource allocation, most especially with regards to end-of-life care, pain management and physical disability. Further, this evidence will aid policymakers and clinicians in making informed decisions about where to allocate funds, which treatments to prioritize, and how to maximize the overall health and well-being of the population they serve. Limitations This study was part of a larger study aiming to establish the EQ-5D-5L value set for the Ghanaian population. Therefore, participants who chose WTD health states in the quantitative survey were sampled for this study. This may have primed participants to talk about health conditions they considered to be WTD (and consequently willing to die) in relation to the health states they had chosen within the survey as WTD. Although participants were encouraged to talk about other health conditions outside those that they had chosen in the survey, it is highly possible that the priming effect was much stronger. Therefore, the findings from the study should be interpreted within this context. Conclusion This is the first study that explores the concept of health conditions considered to be WTD in an in-depth interview. Ghanaians’ interviewed places value on one’s ability to move and function independently in the society. Physical disability were the most frequently cited conditions individuals perceived to be WTD, hence opting to die than to live. The main reasons for preferring to die rather than live with these health conditions were being a burden and loss of social status. Our study provides a leverage on which future studies exploring HRQoL in Ghana, particularly WTD health states and conditions, can be developed. Further research is needed to explore the full depth of health conditions considered as WTD in Ghana and across Africa, with no regards to prespecified health states Abbreviations WTD worse than dead Declarations Ethical approval and Consent to participate: All study procedures were approved by the University of Ghana, College of Health Sciences, Ethical and Protocol Review Committee (protocol identification number: CHS-Et/M.10 - P4.4/2021-2022) and the University of Technology Sydney Human Research Ethics Committee (ethics approval ID: ETH22-7271). Informed consent was obtained from all participants included in the study. Consent to publication : The authors affirm that all individual participants provided informed consent for the publication of results. No identifying information is included in this manuscript Availability of data and materials: Datasets generated and/or analysed during the current study are not publicly available due to its nature (transcribed interview data) but are available from the corresponding author on reasonable request. Competing interests: The authors have no relevant financial or non-financial interests to declare. Funding: This study was supported by the EuroQol Research Foundation (Project ID: 234-VS) and the International Decision Support Initiative (iDSi). Authors contribution : Conceptualization: Rebecca Addo, Justice Nonvignon, Patricia Akweongo; Methodology: Rebecca Addo, Adjeiwa Akosua Affram, Adwoa Amoakoa Essel; Formal analysis and investigation: Adjeiwa Akosua Affram, Adwoa Amoakoa Essel and Rebecca Addo; Writing – original draft preparation: Adjeiwa Akosua Affram, Adwoa Amoakoa Essel and Rebecca Addo; Writing – review and editing: Rebecca Addo, Justice Nonvignon, Patricia Akweongo; Funding acquisition: Rebecca Addo, Justice Nonvignon; Supervision: Patricia Akweongo, Rebecca Addo. Acknowledgements: The authors would like to thank all study participants for their participation. Special thanks to the Health Technology Assessment Unit of Ministry of Health Ghana for their support throughout the study. References Asuquo OO. A rationalization of an African concept of life, death and the hereafter. Am J Social Manage Sci. 2011;2(1):171–5. Berk L, Adams V. In: Berk L, editor. Dying and Death in Oncology. 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Qualitative Res sport Exerc health. 2019;11(4):589–97. Saunders B, Sim J, Kingstone T, Baker S, Waterfield J, Bartlam B, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018;52(4):1893–907. DiCicco-Bloom B, Crabtree BF. The qualitative research interview. Med Educ. 2006;40(4):314–21. Kittay EF, Jennings B, Wasunna AA. Dependency, difference and the global ethic of longterm care. J political Philos. 2005;13(4). Kim HS, Sherman DK, Taylor SE. Culture and social support. Am Psychol. 2008;63(6):518. Mbiti JS. African religions & philosophy. Heinemann; 1990. Gyekye K. Tradition and modernity: Philosophical reflections on the African experience. Oxford University Press; 1997. Gyekye K. African ethics. 2010. Gyekye K. Person and community in African thought. Person and community: Ghanaian philosophical studies. 1992;1:101 – 22. Wiredu K. Person and community: Ghanaian philosophical studies. Volume I. Crvp; 1992. Owusu-Gyamfi C. Onipa:: The Human Being and the Being of Human Among the Akan people of West Africa. Towards an African Theological Anthropology. Trinity Postgrad Rev J. 2019;18(1):74–94. Ganle JK, Otupiri E, Obeng B, Edusie AK, Ankomah A, Adanu R. Challenges women with disability face in accessing and using maternal healthcare services in Ghana: a qualitative study. PLoS ONE. 2016;11(6):e0158361. Acheampong AK, Marfo M, Aziato L. Experiencing motherhood as a blind mother in the Greater Accra Region of Ghana; a qualitative study. BMC Pregnancy Childbirth. 2022;22(1):900. Reynolds S. Disability culture in West Africa: qualitative research indicating barriers and progress in the greater Accra region of Ghana. Occup Therapy Int. 2010;17(4):198–207. Onyeka TC. Palliative care in Enugu, Nigeria: Challenges to a new practice. Indian J Palliat Care. 2011;17(2):131. Onyeka T, Velijanashvili M, Abdissa S, Manase F, Kordzaia D. Twenty-first century palliative care: a tale of four nations. Eur J Cancer Care. 2013;22(5):597–604. Ekore RI, Lanre-Abass B. African cultural concept of death and the idea of advance care directives. Indian J Palliat Care. 2016;22(4):369. Lei L, Gan Q, Gu C, Tan J, Luo Y. Life-and-death attitude and its formation process and end-of-life care expectations among the elderly under traditional chinese culture: a qualitative study. J Transcult Nurs. 2022;33(1):57–64. Afolabi OA, Abboah-Offei M, Namisango E, Chukwusa E, Oluyase AO, Luyirika EB, et al. Do the clinical management guidelines for COVID-19 in African countries reflect the African quality palliative care standards? A review of current guidelines. J Pain Symptom Manag. 2021;61(5):e17–23. Ofosu-Poku R, Owusu-Ansah M, Antwi J. Referral of patients with nonmalignant chronic diseases to specialist palliative care: a study in a teaching hospital in Ghana. Int J Chronic Dis. 2020;2020(1):8432956. Lockhart K, Joseph PHD, Danks H, Coppola KM, Smucker WD. Lisa. THE STABILITY OF OLDER ADULTS'JUDGMENTS OF FATES BETTER AND WORSE THAN DEATH. Death Stud. 2001;25(4):299–317. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version 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-6806655","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":471044713,"identity":"ca80a87d-6613-4771-a227-c8f3e9f7768b","order_by":0,"name":"Adwoa Amoakoa Essel","email":"","orcid":"","institution":"University of Ghana","correspondingAuthor":false,"prefix":"","firstName":"Adwoa","middleName":"Amoakoa","lastName":"Essel","suffix":""},{"id":471044714,"identity":"8e815c21-cb5d-4f6b-82db-1cdad04f27fa","order_by":1,"name":"Adjeiwa Akosua Affram","email":"","orcid":"","institution":"University of Ghana","correspondingAuthor":false,"prefix":"","firstName":"Adjeiwa","middleName":"Akosua","lastName":"Affram","suffix":""},{"id":471044715,"identity":"19414dd4-09a9-4ee8-9d7f-5bba41e3a2b2","order_by":2,"name":"Rebecca Addo","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA/klEQVRIiWNgGAWjYBAC+wYeCIONIcGA4QOEbYBXi8EBqBZ+oBbGGRDVRGqRbEgwYOYhSsvx3oMPftTYARnJGx/btv2xZ2Bv3ibBUHMYt196ziUb9hxLZjA486zYOLfNILGB51iZBMMx3FrsJHLMpBkbmBkMbgAZQC0JDEARCQY23FqM5d+Y/2ZsqGewB2mxbDOwZ5B/A9TyD7cWwxk8ZsyMDYchtjC2GTA2SPCYSTC24dZicCYvWbLn2HEekF8Me84ZJ7bxpBVbJPal49Zy/OzBDz9qquVAIfbgR5mcPT/74Y03PnyzxqkFBnjgLDYQkUBQwygYBaNgFIwCfAAACP5REcv7boYAAAAASUVORK5CYII=","orcid":"","institution":"University of Technology Sydney","correspondingAuthor":true,"prefix":"","firstName":"Rebecca","middleName":"","lastName":"Addo","suffix":""},{"id":471044716,"identity":"60b8980a-16ea-42a0-a4bf-78365d240530","order_by":3,"name":"Justice Nonvignon","email":"","orcid":"","institution":"University of Ghana","correspondingAuthor":false,"prefix":"","firstName":"Justice","middleName":"","lastName":"Nonvignon","suffix":""},{"id":471044717,"identity":"f49ce268-5888-4908-982a-59e7a4a90c32","order_by":4,"name":"Patricia Akweongo","email":"","orcid":"","institution":"University of Ghana","correspondingAuthor":false,"prefix":"","firstName":"Patricia","middleName":"","lastName":"Akweongo","suffix":""}],"badges":[],"createdAt":"2025-06-03 03:53:20","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6806655/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6806655/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":84781467,"identity":"69b9c668-7227-4ae0-8b16-bba560265ac8","added_by":"auto","created_at":"2025-06-17 09:36:48","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":226129,"visible":true,"origin":"","legend":"\u003cp\u003eOverview of themes and subthemes emerging from the interviews\u003c/p\u003e\n\u003cp\u003eAbbreviations: WTD = worse than dead\u003c/p\u003e","description":"","filename":"Picture1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-6806655/v1/cdc0f06a232c8d84443ef4f2.jpg"},{"id":89709961,"identity":"d76b4df3-bdf5-448e-9df1-31f541871c83","added_by":"auto","created_at":"2025-08-23 03:01:35","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":942783,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6806655/v1/39b0b7ca-dbf9-4922-b29e-778daf3c1f2f.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003e\"It is better for me to die than to be disgraced”: Perceptions of Worse than death health states in Ghana\u003c/p\u003e","fulltext":[{"header":"Plain English Summary","content":"\u003cp\u003eThis study was conducted to understand how some Ghanaians perceive death and the relationship between health-related quality of life and death using the EQ5D5L instrument\u0026rsquo;s \u0026lsquo;worse than dead\u0026rsquo; concept. The study answered the question \u0026lsquo;what health conditions are perceived by Ghanaians to be worse than dead\u0026rsquo; and \u0026lsquo;the factors that influence their choice to opt for death, than to live with a particular health condition. We found that Ghanaians interviewed would rather die than live with health conditions where they were physically impaired, impacting on their ability to function adequately in the society, particularly, selfcare, mobility and employment. The main reasons given for preferring death than to live with those health conditions were loss of social status, loss of personhood and becoming a physical and financial burden on family members and loved ones.\u003c/p\u003e"},{"header":"Introduction","content":"\u003cp\u003eAcross different cultures worldwide there are varying understandings of and experiences with the concept of death (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). In many African cultures, considerable importance is placed on the manner of death, with categorizing deaths as either \"good\" or \"bad\", depending on the manner of death, alongside the accompanying burial rites and rituals (\u003cspan additionalcitationids=\"CR4 CR5\" citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe concept of anticipating or preferring death over particular health conditions has been described across cultures worldwide (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Studies have demonstrated that individuals who perceive to be approaching the end of their lives often opt for death over living with serious health conditions that impact their health related quality of life (HRQoL) in the absence of treatment (\u003cspan additionalcitationids=\"CR8 CR9\" citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Multiple studies have explored the assessment of the HRQoL and health states among specific patient groups to shed light on diverse patient perspectives concerning the \"worse than dead\" (WTD) concept using the EQ-5D-5L instrument (\u003cspan additionalcitationids=\"CR12 CR13\" citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eEQ-5D-5L instrument, consisting of five dimensions (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression) each with five levels of severity (no problem, slight problem, moderate problem, severe problem, and extreme/unable) are used to generate utilities for estimating quality-adjusted life years (QALYs), a health outcome for use in economic evaluations. These utilities are derived in a valuation study where methods such as standard gamble, time trade-off and discrete choice experiment are used. Using TTO valuation technique, participants are presented randomly selected number of health states derived from approximately 3,125 possible health states from the EQ-5D-5L instrument to choose between spending time (10 years for conventional TTO) in a state of \"full health\" or in a specific EQ-5D-5L health state (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). The time spent in each health state is varied in an iterative process until the respondent comes to a point where they are indifferent between two health states. Alternatively, a respondent can choose to die immediately than to live for 10 years in the health state they think is WTD. WTD health states refer to conditions that respondents from both the general population and specific disease groups, as part of HRQoL valuation surveys, consider to be more undesirable than death itself. Essentially, respondents in these studies express a preference for death over living in these hypothetical health conditions that are presented during the survey iteration process (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). It should be noted that the stated preference of individuals in a study may not necessarily be their preference (revealed) when faced with that condition in real life, and these varies across different cultures. For example, people living with chronic diseases have been reported to adapt and cope with their symptoms overtime with or without engaging in activities perceived to promote coping such as spirituality (Megari 2013). That said, whereas some studies have reported a collinearity between stated and revealed preferences in healthcare (\u003cspan additionalcitationids=\"CR17\" citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e)others have not (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eOur study sought to explore the contextual \u0026lsquo;value of life\u0026rsquo; in Ghana through investigating respondents\u0026rsquo; rationale for valuing health states as WTD, using standardised method in health economics. In this instance, a sample of participants from the Ghana valuation study (used TTO valuation technique) (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e), who identified any health state as WTD were interviewed qualitatively about the rationale behind their responses. There were also asked about health conditions they considered WTD and was willing to die than live in it. Findings from this study will provide valuable insights into the existing quantitative literature on the factors influencing their choices, and consequently the \u0026lsquo;value of life\u0026rsquo; in the Ghanaian culture. It will also provide health decision makers with evidence-based information in allocating health resources to disease conditions and for planning patient centred health programs and interventions for end-of-life programs and palliative care.\u003c/p\u003e"},{"header":"Materials and methods","content":"\u003cp\u003eParticipants and setting\u003c/p\u003e \u003cp\u003eThis study is a part of a larger research project that aimed to establish the first EQ-5D-5L value set for the Ghanaian population (hereafter referred to as the Ghana valuation studies) (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Study participants were recruited from the three ecological zones of Ghana: Savannah, Forest and Coastal. One region each was randomly selected from each ecological zone: Northern, Ashanti and Greater Accra respectively. The majority of residents in these regions are into agricultural activities, service and sales work; commerce, manufacturing, industries, service-related activities and agriculture; and fishing, commercial activities, livestock farming, and agriculture, respectively (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e). We interviewed 28 individuals in total with more males than females (males n\u0026thinsp;=\u0026thinsp;17, females n\u0026thinsp;=\u0026thinsp;11) being interviewed. All study participants were formally educated. The average age of participants was 36 years. Many participants were married and gainfully employed (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSocio-demographic characteristics of study participants\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN (%)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eAge at time of interview (years)\u003c/em\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e20\u0026ndash;39\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e20 (71)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026ge;\u0026thinsp;40\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMean age\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e36\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eGender\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11 (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e17 (61)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eMarital status\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11 (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15 (54)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDivorced\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEducational level\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePrimary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eJunior high school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSenior high school\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDiploma\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTertiary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eOccupation\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eUnemployed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFormal employment\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSelf-employed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15 (54)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEcological zone of residence\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSavannah\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9 (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eForest\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11 (\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCoastal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8 (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEthnicity\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAkan\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDagomba\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGrushi\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEwe\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGa/Adangbwe\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e6 (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eReligion\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eChristian\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16 (57)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIslam\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOthers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eNumber of dependents\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e0\u0026ndash;4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e21 (75)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026ge;\u0026thinsp;5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e7 (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMean age of dependent\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3.54\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eData collection\u003c/p\u003e \u003cp\u003eThe interviews were conducted between August and October 2022 by the first and second authors. Ethical approval was obtained for the study: CHS-Et/M.10 - P4.4/2021\u0026ndash;2022 and ETH22-7271. Study participants were purposively sampled based on their responses for the Ghana valuation studies. Participants were considered eligible for recruitment into the current study if in the Ghana valuation studies survey, they had indicated a WTD for a particular health state. A brief summary of the study was communicated to potential participants as well as their rights as participants in the study. All participants were given the option to schedule the interviews for a later time however all agreed to partake in the interview at the time consent was sought. Verbal consent was sought and recorded. Participants were asked about the rationale behind the health states they considered as WTD in the valuation studies. They were then asked about health conditions they considered as WTD, hence willing to die than live in it; and their reasoning behind willing to die than live with that particular health condition. The interviews were conducted in English and Twi (an Akan language widely spoken in Ghana (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e)), according to the preference of the participant, using an open-ended interview guide (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). On an average, the interviews lasted between 30\u0026ndash;35 minutes. Recruitment for participants ceased when new interviews did not reveal any new information. We considered the point of information redundancy as data saturation (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eExample of Questions from Interview guide\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInterview guide domain\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eExample open ended questions asked under domain\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBackground\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026bull; Please tell me about yourself\u003c/p\u003e \u003cp\u003e\u0026bull; Please description your quality of life with regards to domains of the EQ5D5L (Mobility [your ability to walk and move about whenever you want to]; Self-care [e.g. bathing yourself); Usual activities [ e.g. shopping, going to church); (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) Pain and discomfort (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) Anxiety and depression\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHealth states considered to be worse than death\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026bull; Please tell me about the conditions/health states you considered to be worse than death (Prompt: Read out health states respondent chose as worse than death)\u003c/p\u003e \u003cp\u003e\u0026bull; Tell me what it is about the health conditions that makes it worse than death.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactors influencing health states (conditions) considered as worse than death\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026bull; What influenced your decision to choose death over these conditions (Prompt: What reasons? e.g. who did you consider when making the decision? What did you consider)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eImpact of health states (conditions) considered as worse than death on Quality of life\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026bull; How do you think the conditions/health states you described as worse than death would affect your quality of life\u003c/p\u003e \u003cp\u003e\u0026bull; In what ways would it affect your quality of life\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eTo foster subjectivity and reflexibility, authors acknowledged in the written proposal, all assumptions and limitations of the study (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e), for example, the possible priming effect of health states chosen in the Ghana valuation study as WTD on participants perceptions enumerated in the interview.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eAll interviews were transcribed verbatim. The interviews conducted in Twi were translated and transcribed in English. AAA first analysed the data inductively and thematically following the processes recommended by Braun \u0026amp; Clarke (2019) (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). In the first step all transcripts were read multiple times to familiarise with the data. Next, systematic data coding begun after each transcript had been read multiple times by making notes in the transcripts in Microsoft word. In the next stage which involved generating initial themes, all notes were copied and pasted in an excel file and sorted out to group similar codes. Through this process initial themes were generated. For example, in the initial coding process, all codes that described the health conditions they were willing to die than live with it were grouped together. Next, these descriptions were analysed to determine the most prevalent and recurring health conditions. The most prevalent health conditions were considered as themes for further exploration. RA and AAE reviewed and validated these groupings and descriptions through multiple on-line discussions with AAA. In the next stage the themes identified were refined, defined and named by AAA, RA and AAE. The final stage of the thematic analysis process is the report presented below.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eThe results presented focuses on participants perceptions of health conditions considered as WTD, hence willing to die than live with it, and their reasons for their choice. An overview of themes and subthemes is presented in Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eTwo main themes emerged from the study: (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Perceptions of WTD health conditions; willing to die and (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) Reasons for opting for death. Perceptions of WTD health conditions contain responses about the health conditions in which respondents would prefer death to life. The theme \u0026lsquo;reasons for opting for death\u0026rsquo; contains responses of with the rationale for preferring death to life in the health conditions mentioned previously.\u003c/p\u003e \u003cp\u003ePerceptions of WTD health conditions considered; willing to die\u003c/p\u003e \u003cp\u003eIn this theme, study participants described health conditions with physical and mental impairments as WTD and willing to die than live with it respectively. Under these themes two sub-themes were identified (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Physical Impairments and (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) Mental impairments.\u003c/p\u003e \u003cp\u003ePhysical impairments\u003c/p\u003e \u003cp\u003eAll participants opted for death to a condition where they experienced a form of physical immobility or entailed pain for the long term.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;it\u0026rsquo;s better you cut things short than going through that pain and at the end of the day you will still die. If you just go in for the death its better than staying for the 10 years long and you will still be going through all those pains. So, it\u0026rsquo;s better you just cut things short\u0026rdquo;. (Male,42 years, Northern region)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eOther participants perceived situations where they had some form of physical disability/impairment for the long term as a situation that would greatly reduce their quality of health. The most common physical impairment was visual impairment and impairments with mobility. Even when pain was removed from physical impairments, particularly with regards to mobility, participants still chose not to live their life in those states.\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eInterviewer\u003c/strong\u003e \u003cp\u003e \u003cem\u003eSo, if let\u0026rsquo;s say we remove the pain...but you still can\u0026rsquo;t walk\u0026hellip;\u003c/em\u003e \u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eRespondent\u003c/strong\u003e \u003cp\u003e \u003cem\u003eIf I can\u0026rsquo;t walk there is nooo importance for me to be in existence. No.\u003c/em\u003e \u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eInterviewer\u003c/strong\u003e \u003cp\u003e \u003cem\u003eOh, but you know now there are machines that-even the wheelchair there is the one that you can press and then it will send you around?\u003c/em\u003e \u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eRespondent\u003c/strong\u003e \u003cp\u003e \u003cem\u003eYeah, but your situation is sad when you are in the wheelchair\u0026hellip;in the sense that like it\u0026rsquo;s not every time someone will come to sit by you\u0026hellip; it will be all you. So, if you are climbing these small stairs and you are in a wheelchair how can you do it? How can you go?... I don\u0026rsquo;t want to be in a wheelchair. If it comes, I go [die]. That\u0026rsquo;s all.\u003c/em\u003e \u003c/p\u003e \u003c/p\u003e \u003cp\u003eMental impairments\u003c/p\u003e \u003cp\u003eA few participants believed living with mental health condition that caused distress for the long term was equivalent to living with a physical impairment and therefore preferred not to live with the condition for the long term. A 29-year-old male from the Greater Accra region explains \u003cem\u003e\u0026ldquo;Depression? I can\u0026rsquo;t [live with it]. Regardless of what lies at the top. It\u0026rsquo;s like living in a very beautiful house but\u0026hellip; for the depression, it\u0026rsquo;s suicidal, honestly\u0026rdquo;\u003c/em\u003e\u003c/p\u003e \u003cp\u003eFor many of these participants however, physical impairments were perceived to be much more difficult to manage or live with than a mental impairment. Most participants relayed that they would rather live with a mental impairment than a physical impairment.\u003c/p\u003e \u003cp\u003eReasons for opting for death\u003c/p\u003e \u003cp\u003eStudy participants chose not choosing to live with physical impairments (including pain) and mental impairments for two main reasons: avoidance of being a burden and loss of status.\u003c/p\u003e \u003cp\u003eBurden\u003c/p\u003e \u003cp\u003eFor most participants, the thought of becoming a burden for their families was one of the factors that influenced their decision to opt for death. Participants described this burden in two forms (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) Time spent caregiving and (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) Financial burden.\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eTime spent in caregiving\u003c/strong\u003e \u003cp\u003eA major concern of participants was the time that would be spent by family members caring for them. Participants opted for death in particular health states for families and those around them to spend their time doing something productive rather than caring for them. \u003cem\u003e\u0026ldquo;To be sick and lying down for long period of time, unable to work and do nothing? And that my family would have to stop their work and cater for me all the time? I think at some point, I will become a nuisance\u0026hellip;I would prefer dying than to live and be a burden to others\u0026rdquo; (Female,26years, Greater Accra region).\u003c/em\u003e\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eFinancial burden\u003c/strong\u003e \u003cp\u003eParticipants were also concerned with being a financial burden on their families. Many participants believed the health conditions would render them finically unproductive. Therefore, rather than live with these health conditions for the long term which would involve financial investments without their contribution, they would prefer their family invest those monies in themselves. This was well articulated.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;if I can\u0026rsquo;t do my regular activities I need not to live. The little money that I live behind the family should enjoy it. But if I continue to live for ten years there is not any cure. They will waste all the money on me and at the end I will go and leave them\u0026rdquo; (Male,42years, Northern region)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eLoss of status\u003c/p\u003e \u003cp\u003eLoss of status was most prevalent reason for opting to die among participants in the Ashanti region. Many of the individuals interviewed there were concerned about the impact of debilitating illness on their social status as well as their status of personhood. The differences between these two are elaborated on below:\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eLoss of social status\u003c/strong\u003e \u003cp\u003eSome participants described the potential effect of some health conditions on their standing in their community and family. For all participants in the Ashanti region and many in the other regions, allocating the task of self-care and particularly toileting was a situation that was perceived as unimaginable and at times unbearable for participants.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;There is the saying that \u0026ldquo;it is better for me to die than to be disgraced\u0026rdquo;. We have something like that. You haven\u0026rsquo;t heard it. You are young\u0026hellip;yes. \u0026ldquo;Disgrace does not suit the Akan\u0026rsquo;s child\u0026rdquo; means that, excuse me to say even if you want to go to toilet, you can\u0026rsquo;t do it, you have to call someone to come to your aid. Something that you could do before, someone has to come to [now] bath you. So, in the Akan culture those things are seen as not good things. So, we say \u0026ldquo;disgrace doesn\u0026rsquo;t suit the Akan\u0026rsquo;s child\u0026rdquo;. It is better to die than to live (Participant 13, Male, 50 years, Ashanti region)\u003c/em\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Between disgrace and death, choose death. Meaning that, with all these problems, if I will be disgraced\u0026hellip;Excuse me to say, it can happen that while lying down I can defecate on myself. I cannot walk? Who is going to help me to dress myself. I am being disgraced. If I die, there will be no problems after death. I am gone\u0026rdquo; (Male,49 years, Ashanti region).\u003c/em\u003e \u003c/p\u003e \u003cp\u003eParticipants in other regions echoed similar sentiments with some offering narratives of similar experiences. However, their responses were not as severe as participants in the Ashanti region.\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eLoss of personhood\u003c/strong\u003e \u003cp\u003eSome health conditions appeared to negate the status of personhood, and this was the perception that was most prevalent among individuals in the Ashanti region. This was because of the conception and expectations of personhood prevalent in the culture. Once an individual was unable to fulfil these responsibilities and duties of personhood, they were considered not human in a sense. Participants describe the concept of a \u0026lsquo;living-dead\u0026rsquo; where an individual although alive in the physical sense, is considered dead in the metaphysical sense since they do not do the activities that persons who are fully living-both physically and metaphysically do.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;In my opinion if not because poisoning yourself or something like that is against the law, I would have said that death is better. Because if I am going through all this problem then I am like a living dead. So, if death comes during that period, it would be better for me\u0026hellip;. The living dead means that\u0026hellip; you are alive but dead. Someone who is dead cannot do anything. You are alive but you are unable to do any of those things\u0026rdquo; (Male, 49 years, Ashanti region)\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThese sentiments also echoed across other regions although, to a lower extent compared to individuals from the Ashanti region.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;You are living a life where you cannot do anything on your own. It is something like [being] lifeless. Someone who doesn\u0026rsquo;t exist is even better than you. Yeah. So therefore, I choose not to live\u0026hellip;you cannot do anything that human beings are able to do. So therefore, I choose to die than to live\u0026rdquo; (Female, 22years, Northern Zone).\u003c/em\u003e \u003c/p\u003e \u003cp\u003eResponses from some participants suggested that these \u0026lsquo;living-dead\u0026rsquo; do not deserve the same privileges that others in the society enjoy. Participant\u0026rsquo;s description of individuals in certain health states state alludes to a dehumanising process which confirm the perception of a loss of personhood.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;if you are living and the pain is still increasing without any medical attention, just nothing is relieving the pain and still increasing, you\u0026rsquo;re just wasting people\u0026rsquo;s time. You\u0026rsquo;re just wasting human life. In other sense, you are going to waste resources\u0026rdquo; (Male,23years, Ashanti region).\u003c/em\u003e \u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eWe explored the concept of individual\u0026rsquo;s willingness to die in a particular condition they perceived as WTD following responses of health states considered as WTD in the Ghana valuation studies using the EQ-5D-5L instrument. We found that physical impairments were the most frequently cited conditions individuals were willing to die than live. To a much lesser extent, some individuals believed mental health conditions like depression was a health condition that could make them opt to die than live. The main reasons for preferring to die rather than live in those health conditions were being a burden and loss of status.\u003c/p\u003e \u003cp\u003eHealth conditions with physical impairments like pain and disabilities have been found in other studies as those respondents considered WTD, hence willing to die (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Individuals in the Ghanaian context described physical impairments to mobility as the end of autonomy with many focusing on its implications for self-care. Concerns about the ability to maintain self-care has been identified as important factors in the consideration of WTD health states (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Further, concerns about depending on others for assistance in the consideration of WTD health conditions, as well as becoming a burden has also been documented in other cultural contexts (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). We however identified concerns about not meeting obligations as one of the main factors influencing health conditions considered WTD, hence opting to die, in the Ghanaian context.\u003c/p\u003e \u003cp\u003eEven in the absence of pain the thought of disability was still considered as a condition that would substantially impair an individual\u0026rsquo;s ability to contribute meaningfully to their society. In many cultures in Africa, the ability to contribute to the society in which one is born into is an important aspect and indicator of personhood (\u003cspan additionalcitationids=\"CR30\" citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). In the Akan (Ashanti region) culture, it is believed that personhood is not a status conferred on a human simply because of birth, but rather is achieved through the fulfilment of moral duties and obligations (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e). The thought of being unable to fulfil this responsibility leading to the removal of the status of personhood is consistent with the Akan philosophy of personhood being conferred thus the possibility of its removal once obligations are not met (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eWhile the strong use of words like \u0026lsquo;garbage\u0026rsquo; to describe individuals in such state may come off as ablest and derogatory, it is important to consider the context in which such conceptions of the state of disability arises and why such conditions are tied to experiences like shame. There are insufficient resources and infrastructure to support individuals with disabilities in Ghana to live a dignified and respected life (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e, \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e). Many individuals with disabilities resort to \u0026lsquo;dehumanising\u0026rsquo; acts like begging on the street in order to survive (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e). This reinforces the stereotype of disability as a condition where one cannot be useful or productive in their society in a respectable manner and one that relegates individuals to a shameful position.\u003c/p\u003e \u003cp\u003eUnlike Mbiti\u0026rsquo;s (1990) (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e) use of \u0026lsquo;living dead\u0026rsquo; to signify individuals who recently passed on, individuals from the Akan culture in our study describes \u0026lsquo;living dead\u0026rsquo; as a state where individuals are physically present but lose their important metaphysical essence which is vital to their personhood. This becomes a state where an individual is no longer human and should not enjoy the privileges that come with personhood. While our evidence does not demonstrate this, there stands the possibility that these perceptions may influence how individuals in such health states may be treated if they are considered as not part of the living or unable to meaningfully contribute to their society.\u003c/p\u003e \u003cp\u003eThis raises debates about the structures that are available to protect individuals who may find themselves in such vulnerable health states. Might health professional conclude that an individual in such a state is no longer useful to discontinue treatment? In Ghana, as other countries in Africa, many individuals are sent home by medical professionals when conditions become dire (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e, \u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e). While this may satisfy cultural beliefs of letting an individual die in peace (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e, \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e), it stands the risk of prematurely discharging patients who may benefit from additional treatment or end of life care. On the other hand, might a health professional continue treatment to prolong the life of an individual who in a sense does not exist? As Rubin et al (2016) (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) contend, death may not be an outcome which patients in certain conditions wish to prevent.\u003c/p\u003e \u003cp\u003eThe ethics of care in such a complex and at times contradictory context needs to be examined and expounded on (\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e). It is important to consider culturally sensitive individually patient centred treatments for patients who may not wish to prolong or continue treatment without just relegating them to their homes as is normal practice, where families without training on end-of-life care assume the burden of care. Palliative care in Africa, Ghana included, is severely underdeveloped (\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e). Currently in Ghana, palliative care is provided in only three public health institutions (\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e). Pain management in sub-Sahara Africa is also at its infancy and there are many barriers and challenges to improving pain management. The right infrastructure is not in place and there are misconceptions about the use of pain medication by patients and clinicians that prevent their uptake (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThere needs to be investments in infrastructure that can provide options for individuals to choose from. End of life care is a personal decision despite prevailing social norms and cultural beliefs. Lockhart et al (2001) found that perceptions of WTD health states are not always stable (\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e). Therefore, in the presence of, and access to the needed healthcare, it may be possible that conditions that were perceived to be unliveable become liveable.\u003c/p\u003e \u003cp\u003eDecisions regarding health states WTD holds considerable importance, particularly in a context where culture and societal norms play a role in shaping how HRQoL is perceived and subsequently healthcare assessed. This helps ensure that healthcare resources are directed towards interventions that provide the greatest overall benefit to the individual, family and population. In essence, the findings from the study provide evidence on patient centred healthcare resource allocation, most especially with regards to end-of-life care, pain management and physical disability. Further, this evidence will aid policymakers and clinicians in making informed decisions about where to allocate funds, which treatments to prioritize, and how to maximize the overall health and well-being of the population they serve.\u003c/p\u003e"},{"header":"Limitations","content":"\u003cp\u003eThis study was part of a larger study aiming to establish the EQ-5D-5L value set for the Ghanaian population. Therefore, participants who chose WTD health states in the quantitative survey were sampled for this study. This may have primed participants to talk about health conditions they considered to be WTD (and consequently willing to die) in relation to the health states they had chosen within the survey as WTD. Although participants were encouraged to talk about other health conditions outside those that they had chosen in the survey, it is highly possible that the priming effect was much stronger. Therefore, the findings from the study should be interpreted within this context.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis is the first study that explores the concept of health conditions considered to be WTD in an in-depth interview. Ghanaians\u0026rsquo; interviewed places value on one\u0026rsquo;s ability to move and function independently in the society. Physical disability were the most frequently cited conditions individuals perceived to be WTD, hence opting to die than to live. The main reasons for preferring to die rather than live with these health conditions were being a burden and loss of social status. Our study provides a leverage on which future studies exploring HRQoL in Ghana, particularly WTD health states and conditions, can be developed. Further research is needed to explore the full depth of health conditions considered as WTD in Ghana and across Africa, with no regards to prespecified health states\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003eWTD\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eworse than dead\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthical approval and Consent to participate:\u003c/strong\u003e All study procedures were approved by the University of Ghana, College of Health Sciences, Ethical and Protocol Review Committee (protocol identification number: CHS-Et/M.10 - P4.4/2021-2022) and the University of Technology Sydney Human Research Ethics Committee (ethics approval ID: ETH22-7271). Informed consent was obtained from all participants included in the study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to publication\u003c/strong\u003e: The authors affirm that all individual participants provided informed consent for the publication of results. No identifying information is included in this manuscript\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials:\u0026nbsp;\u003c/strong\u003eDatasets generated and/or analysed during the current study are not publicly available due to its nature (transcribed interview data) but are available from the corresponding author on reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests:\u0026nbsp;\u003c/strong\u003eThe authors have no relevant financial or non-financial interests to declare.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding:\u0026nbsp;\u003c/strong\u003eThis study was supported by the EuroQol Research Foundation (Project ID: 234-VS) and the International Decision Support Initiative (iDSi).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors contribution :\u0026nbsp;\u003c/strong\u003eConceptualization: Rebecca Addo, Justice Nonvignon, Patricia Akweongo; Methodology: Rebecca Addo, Adjeiwa Akosua Affram, Adwoa Amoakoa Essel; Formal analysis and investigation: \u0026nbsp;Adjeiwa Akosua Affram, Adwoa Amoakoa Essel and Rebecca Addo; Writing – original draft preparation: Adjeiwa Akosua Affram, Adwoa Amoakoa Essel and Rebecca Addo; \u0026nbsp; Writing – review and editing: Rebecca Addo, Justice Nonvignon, Patricia Akweongo; Funding acquisition: Rebecca Addo, Justice Nonvignon; Supervision: Patricia Akweongo, Rebecca Addo.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements:\u0026nbsp;\u003c/strong\u003eThe authors would like to thank all study participants for their participation. Special thanks to the Health Technology Assessment Unit of Ministry of Health Ghana for their support throughout the study.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAsuquo OO. A rationalization of an African concept of life, death and the hereafter. Am J Social Manage Sci. 2011;2(1):171\u0026ndash;5.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBerk L, Adams V. In: Berk L, editor. Dying and Death in Oncology. Switzerland: Springer International Publishing; 2017. p. 185.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDe Witte M. Money and death: Funeral business in Asante. Ghana Afr. 2003;73(4):531\u0026ndash;59.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSeale C, Van der Geest S. Good and bad death: introduction. Social science \u0026amp; medicine. 2004.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBoateng A, Anngela-Cole L. 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Do the clinical management guidelines for COVID-19 in African countries reflect the African quality palliative care standards? A review of current guidelines. J Pain Symptom Manag. 2021;61(5):e17\u0026ndash;23.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eOfosu-Poku R, Owusu-Ansah M, Antwi J. Referral of patients with nonmalignant chronic diseases to specialist palliative care: a study in a teaching hospital in Ghana. Int J Chronic Dis. 2020;2020(1):8432956.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLockhart K, Joseph PHD, Danks H, Coppola KM, Smucker WD. Lisa. THE STABILITY OF OLDER ADULTS'JUDGMENTS OF FATES BETTER AND WORSE THAN DEATH. Death Stud. 2001;25(4):299\u0026ndash;317.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"worse than dead, health states, EQ5D5L, health related quality of life, value of life, perceptions about death","lastPublishedDoi":"10.21203/rs.3.rs-6806655/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6806655/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cb\u003eBackground\u003c/b\u003e\u003c/p\u003e \u003cp\u003eMany cultures across the world have varying conceptions about death and dying. Perceptions about health states considered worse than death also vary based on socio-cultural norms as well as health system capacity. We explore health states considered to be worse than death by Ghanaian respondents as well as reasons for opting for death in those health states.\u003c/p\u003e\u003cp\u003e\u003cb\u003eMethods\u003c/b\u003e\u003c/p\u003e \u003cp\u003eWe interviewed 28 participants from three regions in Ghana to explore this concept. The data were analysed inductively and thematically.\u003c/p\u003e\u003cp\u003e\u003cb\u003eResults\u003c/b\u003e\u003c/p\u003e \u003cp\u003eWe identified two main health states domains, physical impairments and mental impairments, that were considered as worse than death. The main reasons for preferring death to these particular health states were being a burden and loss of status. Decisions regarding health states worse than death holds considerable importance, particularly in a context where culture and societal norms play a role in shaping how health related quality of life is assessed.\u003c/p\u003e\u003cp\u003e\u003cb\u003eConclusion\u003c/b\u003e\u003c/p\u003e \u003cp\u003eFindings from the study may provide evidence on healthcare resource allocation and aid policymakers and clinicians in making informed decisions on which treatments to prioritize, and how to maximize the overall health and well-being of individuals.\u003c/p\u003e","manuscriptTitle":"\"It is better for me to die than to be disgraced”: Perceptions of Worse than death health states in Ghana","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-06-17 09:28:43","doi":"10.21203/rs.3.rs-6806655/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"715fd340-deac-41d6-aaea-8c60319f1e23","owner":[],"postedDate":"June 17th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-08-23T02:53:20+00:00","versionOfRecord":[],"versionCreatedAt":"2025-06-17 09:28:43","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6806655","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6806655","identity":"rs-6806655","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}