Missed opportunities to promote flourishing in cancer care: a brief examination of multiple myeloma | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Missed opportunities to promote flourishing in cancer care: a brief examination of multiple myeloma Natalie Tuckey, Hannah R Wardill, Xavier Symons, Melissa Cantley, and 5 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8737263/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 6 You are reading this latest preprint version Abstract Recent theoretical and empirical advancements in well-being science can have meaningful implications for medical care when considering existential issues faced by people with incurable or life-limiting cancer diagnoses. We propose the possibility that certain elements of flourishing, such as meaning and purpose, deep personal relationships, and virtue, can be uniquely realised if targeted appropriately when life is ending. Using exploratory data from a study focussed on identifying the unmet psychological needs of patients living with the blood cancer multiple myeloma, we thematically analysed interviews with patients and clinicians to explore the possibility of flourishing at the end of life. Smouldering myeloma and multiple myeloma patients (n = 25) reported personal growth following their diagnosis through acceptance, meaning-making, and connection, yet reported the loneliness of dying with cancer with a desire to have a discussion about death in addition to their clinician focusing on maintaining treatment. On the contrary, clinicians (n = 10) were hesitant to discuss death, balancing hope in treatments with preparation for dying. We argue that the hesitation to discuss death thwarts the opportunity to flourish, and that existing solutions such as dignity therapy, meaning-centred psychotherapy, early palliative care, and multidisciplinary support can close this gap without diminishing hope in treatments. Introduction Well-being science has long been criticised for its predominant focus on the ‘worried well’ 1 However, progress in the field has identified key psychological predictors of physical illness, identifying psychological interventions that are effective in clinical care and can assist in recovery from mental and physical illness 2 , 3 . A recent theoretical framework developed by Symons et al. 4 posits that flourishing - encompassing emotional, psychological, and social well-being - remains achievable even towards the end of life. This perspective challenges traditional views of terminal illness, suggesting that patients can experience and build meaning, purpose, and connection despite their prognosis 5 . This framework emphasizes holistic well-being, integrating concepts such as personal growth, relationships, and spiritual fulfillment. Symons et al. 6 argue that prevailing medical models, which prioritise physical health and symptom management, often neglect the broader dimensions of human experience critical to a good life. Similarly, Donaldson 7 offers a framework for a “good death” in patients with haematologic malignancies which integrates the notion of eudaimonia, and which emphasises living well and dying well. The argument provides ethical guidance for balancing life-extending treatments with the promotion of a peaceful death 7 . These advancements offer the theoretical opportunity to intentionally support patients to flourish with life-limiting or end of life cancer diagnoses. In partnership with lived experience experts, our team has launched the myWELL Study working to modify, through co-design, an existing psychological intervention to support the unmet psychological needs of people with multiple myeloma. Multiple myeloma is a type of blood cancer that currently has no cure. Myeloma is associated with high rates of clinically significant anxiety and depression 8 , associated with the uncertainty related to treatment outcomes, inevitability of relapse, and ultimately facing one’s own mortality. Therefore, it is a unique setting to explore the concept of flourishing at end-of-life, as the condition is manageable yet remains a life-limiting diagnosis, with enormous variation in survival rates and often a requirement to adhere to lifelong therapy 9 . In the current study, we consider exploratory data from co-design phases of the myWELL study with patients and clinicians, which identified a range of themes related to the potential for flourishing while living with multiple myeloma. We discuss professional, systemic, and cultural barriers to the possibility of flourishing and offer a range of existing solutions to mitigate these barriers. Methods Ethical approval for this study was obtained from The Adelaide University Human Research Ethics Committee (H-2024-205) in accordance with the principles outlined in the Declaration of Helsinki. Eligible participants were adults (aged 18 years or older) with a self-reported diagnosis of multiple myeloma or smouldering myeloma, who were fluent in English, and residing in Australia. Participants were invited to take part in the myWELL study, a 5-week mental health and well-being intervention, through a newsletter and targeted email from peak national body, Myeloma Australia. Participants completed an online expression of interest and provided written informed consent to take part in the study. Purposeful sampling was used to recruit health professionals across Australia. The semi-structured interviews were based on the Supportive Care Framework 10 , and not specific to death and dying. Interviews were conducted by author N.T. between November 2024 to March 2025, ranged from 19–54 minutes, analysed using a qualitative thematic analysis framework 11 . The analysis was led by N.T., supported by 4 members of the research team. Themes and subthemes were defined and refined iteratively through multiple consensus discussions within the team. Results and Discussion Twenty-five patients participated in the semi-structured interviews (multiple myeloma n = 21, smouldering myeloma n = 4). Participants’ demographic and clinical characteristics are summarised in Table 1 . A total of 10 health professionals were interviewed (haematologist n = 3), myeloma nurses (n = 3), GP (n = 1), psychologist (n = 1), physiotherapist (n = 1), social worker (n = 1) who had experience across both private and public health settings. Table 1 Patient characteristics Characteristics Multiple myeloma (n = 21) Smouldering myeloma (n = 4) Gender Male 10 2 Female 11 2 Age, mean (SD) 61.4 (10.5) 54.5 (4.7) Location of residence: Metropolitan 14 3 Rural/Regional 8 1 Time since Diagnosis Less than 2 years 5 2 Between 2 and 4 years 11 2 5 years or longer 5 0 Three themes were identified from the qualitative interviews: (i) Growth despite a life-limiting diagnosis, (ii) The lonely burden of dying, and (iii) Clinician reluctance to talk about death. Each theme is discussed in turn, exploring clinical, systemic, and cultural barriers to flourishing and opportunities for intervention. Extended description of themes will illustrative quotes are summarised in Table 2 . Table 2 Qualitative themes and illustrative quotes from interviews with people living with myeloma, smouldering myeloma and health professionals. Theme Sub-theme Illustrative quote Growth despite a life-limiting diagnosis The theme explores growth in the final stages of life, focusing on acceptance of the inevitable, personal reflection, spiritual exploration, and the revaluation of what is meaningful. Acceptance of the inevitable “Everyone's going to die. And since I've been diagnosed in 5 years, I've lost people who haven't had cancer, you know what I mean, and I'm dead quicker than me. So you can't dwell. Walk out and get hit by a bus. You can't dwell on life. It's an infinite, you know. It's finite, but you can't tell when it's going to end. So it's a get out life is for living is the saying”. (male, 61-65yrs) Personal growth and reflection “So, yeah, so that's kind of, in a way, it's, you know, the sort of the parable of life is that you know, we are on this journey, and it's different at different stages. And you learn from it. You know you, if you listen”. (male, 76-80yrs) Spirituality and dying “I mean obviously some people might respond that they pray to God every night, or something like that. And I'm not sure what I believe in that respect, but I do believe very much so that there is somewhere else to go. Because of things that have happened when my mother died, and I feel like, well, if I'm going to go, I'm going to mum. You know what I mean, and I talk to her every day, anyway.” (female, 66-70yrs) Valuing what is important “I just keep doing what I normally did in the past, and I've been building a train set for my grandson which is keeping away from screens and things, and we're always in the shed doing things together. That keeps me occupied. It keeps me grounded..” (male, 71-75yrs) The lonely burden of dying The theme explores the personal challenges of facing death, including managing practical end-of-life matters, navigating the discomfort of others who avoid the topic. Practically preparing for death “I'm a bit paralysed around the space of sorting will out because I feel like I'm going to have to have a will number one and will number two, you know, so even in that space, I'm not. I'm not prepared at all at the moment.” (female, 56-60yrs) Friends don't want to talk about death “I've spoken to friends so much about it. I've found that most people are very scared to talk death, very scared to talk terminal illness. And ghosting was probably the worst thing I had during the whole lot of being diagnosed, and even to this day. People just don't want to face death, and I think, that's the main crux of it.” (male, 61-65yrs) Placating others for their benefit “So you find that you're actually placating other people. If that makes sense, trying to make them feel better. And rather than just say, look, you know, it is what it is. It's cancer. It's a word. I'm not afraid of it. But thank you”. (female, 65-70yrs) Clinician reluctance to talk about death Clinicians raise the discomfort of talking about death and the challenges for patients and families. Clinician discomfort and avoidance “You don't want to, I see that happen, the clinician doesn't want to necessarily rehash that every time, because that patient's at a critical point where they have to have hope. Otherwise, why would you wanting be wanting to sign up for a clinical trial. Why would you be coming in each week? And some people will want to fight until the very, very end.” Myeloma Nurse Concerns about impact on patients and families “It's often difficult to predict how the end of their life is going to progress, and I don't think it's particularly help. I don't think it's particularly helpful, you know. I have discussions when they're approaching that about, you know. Where would they want to pass away? And you know what things are important to them. But I think talking about the actual process isn't particularly. I think it's distressing” (Haematologist) Prognosis difficulites can affect reputation “Discussion is difficult, because people behave very differently and people progress very differently. You know some people have terrible bony disease that causes so much pain. Most people end up just getting a severe infection and just dying of the infection. So yeah, I don't. Yeah, I don't know. I don't. Yeah, wait. I wait till the end to kind of have those conversations.” (Haematologist) Growth despite a life-limiting diagnosis Participants described experiences of psychological growth in domains of flourishing despite the challenges of living with an incurable disease, through acceptance, considering life values and revaluation of priorities. Acknowledging the inevitability of death, some emphasised that life is unpredictable, underscoring the importance of living fully in the present. For others, the illness prompted self-reflection on their life journey, opportunities for learning, and a deepened appreciation of meaningful activities and relationships. Spirituality also emerged as a pathway for comfort, with some participants drawing strength from faith or continuing bonds with deceased loved ones. These findings underscore Symon’s proposal that dimensions of flourishing can occur even when life is ending. As argued 12 , healthcare systems often fail to recognise or nurture capacity for personal growth due to a focus on physical symptoms, overlooking the unique potential for meaning-making and spiritual fulfilment that are critical components of flourishing. Available interventions such as dignity therapy or meaning-centred psychotherapy can be useful to support psychological growth, by helping patients document their life stories and legacy, enhancing purpose 13 , 14 . Importantly, these solutions can be offered as a complement to treatment options. The lonely burden of dying Despite the experiences of growth that participants recalled, they often described death as a rarely acknowledged reality, characterised by both avoidance and a desire for conversation. For many, their diagnosis with multiple myeloma or smouldering myeloma was the first time they were confronted by their own mortality. Several reported actively suppressing thoughts of death, reflecting the discomfort of engaging with their own finitude. Yet, alongside avoidance, participants expressed a clear desire for death to be normalised as a part of life, emphasising the value of open dialogue to reduce fear and stigma. Participants highlighted the personal weight of preparing for death, encompassing both practical and interpersonal challenges. While some struggled with practical matters such as financial preparations, others found the silence or withdrawal of friends to be particularly painful, with avoidance reinforcing feelings of isolation. A recurring theme was the need to protect others from discomfort, with participants often minimising their own fears to placate family or friends. This dynamic underscores how the burden of dying is not only about managing one’s own mortality, but also navigating the emotional needs of others, often leaving patients unsupported in their own processing of death. This theme underscores a significant emotional barrier to flourishing and sets up the need for holistic, family-centred care. The perception of ‘being a burden’ reflects both cultural avoidance of death and death anxiety 15 , along with inadequate support for patients and families to navigate end-of-life dynamics, eroding aspects of flourishing such as dignity and connection. Multidisciplinary teams, including psychologists and social workers, can provide family-centred support and advance care planning, reducing isolation 16 . Clinician reluctance to talk about death Clinicians reported experiencing personal discomfort when discussing death and dying, leading to avoidance or minimisation of these conversations, likely compounding the experience of death as being the ‘elephant in the room’. Clinicians were concerned about causing further distress, as prognosis may feel repetitive or an emotionally burdensome topic to revisit, coupled with perceptions (or stated preferences) that patients may not want to talk about dying. Some perceived these conversations as unhelpful or harmful, potentially increasing distress or diminishing hope for their patients. The reluctance to discuss death, often for genuine and appropriate reasons (such as diminishing hope or discouraging viable treatment options), may limit opportunities for processing existential concerns and thwart flourishing. In an effort to protect families or shield patients from perceived emotional burden, information may be withheld, delaying open and honest dialogue about death 17 . While resources exist to support patients to flourish within the context of life-limiting illness, clinicians may hesitate to introduce them, either from lack of time during clinical reviews, reluctance due to uncertain prognoses, or from concerns the perceived expectation that specialists should focus on prolonging life 18 . Options such as palliative care can enable moments of flourishing for patients with life-limiting illness, whether through meaningful connection, spiritual growth, or the freedom to express one’s identity and wishes fully 4 . However, palliative care is often seen as a last resort, and points to a friction between appropriate timing of referral to options such as palliative care, and diminishing hope for patients and their families. This reluctance is driven by misconceptions equating palliative care with hospice care, as clinicians often associate it with terminal care 19 . Communication challenges, including fear of undermining patient morale and prognostic uncertainty in multiple myeloma, as expressed by interview participants, compound these barriers, alongside systemic issues like limited access to palliative care specialists and lack of standardised referral criteria 20 . This is especially compounded in multiple myeloma where a person may live with their ultimately terminal disease for years, and hence “end of life” may seem distant 20 . Conclusion This study highlights the potential to promote flourishing in patients with multiple myeloma, despite their life-limiting diagnosis. Key findings underscore individual capacity for psychological growth, the need to remove barriers around conversations about death, and the emotional burden of dying in the context of cultural death anxiety. To foster flourishing, healthcare systems could consider the integration of evidence-based interventions like dignity therapy and meaning-centred psychotherapy to support meaning-making and spiritual fulfillment. Breaking the silence around death may involve early referral to palliative care and clinician training in existential communication to reduce stigma and align care with patient goals. Building meaningful, respectful relationships between haematological and palliative care services may ensure that people with multiple myeloma are able to access timely, responsive and appropriate supportive and palliative care when it is likely to provide the most benefit for their ability to live as well as possible in the context of life-limiting illness. Further, multidisciplinary teams, including palliative care specialists, psychologists, and social workers, can alleviate the perceived burden of dying by addressing practical and interpersonal challenges through family-centred support and advance care planning. Declarations Funding: Funding for this research has been provided from the Australian Government's Medical Research Future Fund (MRFF). Author Contribution N.T. wrote the main manuscript, prepared tables and conducted the primary analysis.H.W., M.C., K.A., and M.I provided supervision and contributed to the design of the study.All authors reviewed and approved the final manuscript. Acknowledgement We extend our sincere appreciate to all the consumers who took part in this study, whose insights were instrumental to this research. References Alex Linley P, Joseph S, Harrington S, Wood AM. Positive psychology: Past, present, and (possible) future. The Journal of Positive Psychology. 2006;1:3–16. Trudel-Fitzgerald C, Millstein RA, von Hippel C, et al. Psychological well-being as part of the public health debate? Insight into dimensions, interventions, and policy. BMC Public Health. 2019;19:1712. van Agteren J, Iasiello M, Lo L, et al. A systematic review and meta-analysis of psychological interventions to improve mental wellbeing. Nat Hum Behav. 2021;5:631–652. Symons X, Rhee J, Tanous A, Balboni T, VanderWeele TJ. Flourishing at the end of life. Theor Med Bioeth. 2024;45:401–425. Kim M. Finding Meaning in Life Threatening Illness. Hanguk Hosupisu Wanhwa Uiryo Hakhoe Chi. 2020;23:39–43. Symons X, Rhee J, Tanous A, Balboni T, VanderWeele TJ. Flourishing at the end of life. Theoretical Medicine and Bioethics. 2024;45:401–425. Donaldson T. Human flourishing, the goals of medicine and integration of palliative care considerations into intensive care decision-making. Journal of Medical Ethics. 2024;50:539. Odejide OO, Cronin AM, Gray TF, et al. Anxiety and depression among patients newly diagnosed with lymphoma and myeloma. Blood Advances. 2025;9:1618–1629. Schinke M, Ihorst G, Duyster J, Wäsch R, Schumacher M, Engelhardt M. Risk of disease recurrence and survival in patients with multiple myeloma: A German Study Group analysis using a conditional survival approach with long-term follow-up of 815 patients. Cancer. 2020;126:3504–3515. Fitch M. Supportive care framework. Canadian Oncology Nursing Journal / Revue canadienne de soins infirmiers en oncologie. 2015;18:9. Braun V, Clarke V. Thematic Analysis: A Practical Guide : Sage; 2022. Chalopin T, Vallet N, Benboubker L, Ochmann M, Gyan E, Chaumier F. Retrospective review of end-of-life care in the last month of life in older patients with multiple myeloma: what collaboration between haematologists and palliative care teams? BMJ Supportive & Palliative Care. 2024;14:e380. Fitchett G, Emanuel L, Handzo G, Boyken L, Wilkie DJ. Care of the human spirit and the role of dignity therapy: a systematic review of dignity therapy research. BMC Palliative Care. 2015;14:8. Rosenfeld B, Saracino R, Tobias K, et al. Adapting Meaning-Centered Psychotherapy for the palliative care setting: Results of a pilot study. Palliat Med. 2017;31:140–146. Bennett A, Sharpe L, Boyse JB. A meta-analysis of death anxiety in people living with or beyond cancer: the important role of culture. Journal of Cancer Survivorship . 2025. Kishino M, Ellis-Smith C, Afolabi O, Koffman J. Family involvement in advance care planning for people living with advanced cancer: A systematic mixed-methods review. Palliative Medicine. 2022;36:462–477. Nagelschmidt K, Leppin N, Seifart C, Rief W, von Blanckenburg P. Systematic mixed-method review of barriers to end-of-life communication in the family context. BMJ Supportive & Palliative Care. 2021;11:253. Rodríguez-Prat A, Monforte-Royo C. Human Flourishing Until the End: The Core Values of Palliative Care. In: Las Heras M, Grau Grau M, Rofcanin Y, eds. Human Flourishing: A Multidisciplinary Perspective on Neuroscience, Health, Organizations and Arts . Cham: Springer International Publishing; 2023:133–147. Hawley P. Barriers to Access to Palliative Care. Palliat Care. 2017;10:1178224216688887. Kaasa S, Loge JH, Aapro M, et al. Integration of oncology and palliative care: a Lancet Oncology Commission. Lancet Oncol. 2018;19:e588-e653. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Reviews received at journal 19 May, 2026 Reviewers agreed at journal 08 May, 2026 Reviewers invited by journal 03 Mar, 2026 Editor assigned by journal 03 Mar, 2026 Submission checks completed at journal 04 Feb, 2026 First submitted to journal 29 Jan, 2026 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-8737263","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":600199725,"identity":"94cf9147-1ab7-452b-86fa-fee57af685ac","order_by":0,"name":"Natalie Tuckey","email":"data:image/png;base64,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","orcid":"","institution":"University of Adelaide","correspondingAuthor":true,"prefix":"","firstName":"Natalie","middleName":"","lastName":"Tuckey","suffix":""},{"id":600199728,"identity":"c990f05e-a205-4269-9cf5-94695e891a10","order_by":1,"name":"Hannah R Wardill","email":"","orcid":"","institution":"University of Adelaide","correspondingAuthor":false,"prefix":"","firstName":"Hannah","middleName":"R","lastName":"Wardill","suffix":""},{"id":600199734,"identity":"587810b9-0b55-4373-886d-f55a892f002e","order_by":2,"name":"Xavier Symons","email":"","orcid":"","institution":"Harvard University","correspondingAuthor":false,"prefix":"","firstName":"Xavier","middleName":"","lastName":"Symons","suffix":""},{"id":600199736,"identity":"e4f6c8ea-633a-4ec6-8e18-2790be695d60","order_by":3,"name":"Melissa Cantley","email":"","orcid":"","institution":"Precision Cancer Medicine Theme, SAHMRI","correspondingAuthor":false,"prefix":"","firstName":"Melissa","middleName":"","lastName":"Cantley","suffix":""},{"id":600199738,"identity":"a00ed4cc-02c7-4ccd-a08e-1c1bde939227","order_by":4,"name":"Kathina Ali","email":"","orcid":"","institution":"University of the Sunshine Coast","correspondingAuthor":false,"prefix":"","firstName":"Kathina","middleName":"","lastName":"Ali","suffix":""},{"id":600199755,"identity":"eec88d7e-8803-4188-8bc4-3775c9476aa4","order_by":5,"name":"Hayley Beer","email":"","orcid":"","institution":"Myeloma Australia","correspondingAuthor":false,"prefix":"","firstName":"Hayley","middleName":"","lastName":"Beer","suffix":""},{"id":600199758,"identity":"a2c4eb32-06f3-4536-b141-ed738566169c","order_by":6,"name":"Gregory B Crawford","email":"","orcid":"","institution":"Northern Adelaide Local Health Network","correspondingAuthor":false,"prefix":"","firstName":"Gregory","middleName":"B","lastName":"Crawford","suffix":""},{"id":600199759,"identity":"835ac407-b6a9-4077-8f85-4cddd523312c","order_by":7,"name":"Angelina Yong","email":"","orcid":"","institution":"Central Adelaide Local Heath Network, SA Health","correspondingAuthor":false,"prefix":"","firstName":"Angelina","middleName":"","lastName":"Yong","suffix":""},{"id":600199764,"identity":"5a53a2c6-ad14-47b2-8a74-a6e4db792812","order_by":8,"name":"Matthew Iasiello","email":"","orcid":"","institution":"University of Adelaide","correspondingAuthor":false,"prefix":"","firstName":"Matthew","middleName":"","lastName":"Iasiello","suffix":""}],"badges":[],"createdAt":"2026-01-30 05:10:04","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-8737263/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8737263/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":104403816,"identity":"f5f94a9d-59ec-475c-b7ea-c1e81fd9e626","added_by":"auto","created_at":"2026-03-11 12:19:08","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":513999,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8737263/v1/d284c408-95c1-4dab-8d54-016452e3716b.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Missed opportunities to promote flourishing in cancer care: a brief examination of multiple myeloma","fulltext":[{"header":"Introduction","content":"\u003cp\u003eWell-being science has long been criticised for its predominant focus on the \u0026lsquo;worried well\u0026rsquo; \u003csup\u003e1\u003c/sup\u003e However, progress in the field has identified key psychological predictors of physical illness, identifying psychological interventions that are effective in clinical care and can assist in recovery from mental and physical illness \u003csup\u003e\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u003c/sup\u003e. A recent theoretical framework developed by Symons et al. \u003csup\u003e4\u003c/sup\u003e posits that flourishing - encompassing emotional, psychological, and social well-being - remains achievable \u003cem\u003eeven\u003c/em\u003e towards the end of life. This perspective challenges traditional views of terminal illness, suggesting that patients can experience and \u003cem\u003ebuild\u003c/em\u003e meaning, purpose, and connection despite their prognosis \u003csup\u003e\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e\u003c/sup\u003e. This framework emphasizes holistic well-being, integrating concepts such as personal growth, relationships, and spiritual fulfillment. Symons et al. \u003csup\u003e6\u003c/sup\u003e argue that prevailing medical models, which prioritise physical health and symptom management, often neglect the broader dimensions of human experience critical to a good life. Similarly, Donaldson \u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e offers a framework for a \u0026ldquo;good death\u0026rdquo; in patients with haematologic malignancies which integrates the notion of eudaimonia, and which emphasises living well and dying well. The argument provides ethical guidance for balancing life-extending treatments with the promotion of a peaceful death \u003csup\u003e\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u003c/sup\u003e. These advancements offer the theoretical opportunity to \u003cem\u003eintentionally\u003c/em\u003e support patients to flourish with life-limiting or end of life cancer diagnoses.\u003c/p\u003e \u003cp\u003eIn partnership with lived experience experts, our team has launched the \u003cem\u003emyWELL\u003c/em\u003e Study working to modify, through co-design, an existing psychological intervention to support the unmet psychological needs of people with multiple myeloma. Multiple myeloma is a type of blood cancer that currently has no cure. Myeloma is associated with high rates of clinically significant anxiety and depression \u003csup\u003e\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u003c/sup\u003e, associated with the uncertainty related to treatment outcomes, inevitability of relapse, and ultimately facing one\u0026rsquo;s own mortality. Therefore, it is a unique setting to explore the concept of flourishing at end-of-life, as the condition is manageable yet remains a life-limiting diagnosis, with enormous variation in survival rates and often a requirement to adhere to lifelong therapy \u003csup\u003e\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eIn the current study, we consider exploratory data from co-design phases of the \u003cem\u003emyWELL\u003c/em\u003e study with patients and clinicians, which identified a range of themes related to the potential for flourishing while living with multiple myeloma. We discuss professional, systemic, and cultural barriers to the possibility of flourishing and offer a range of existing solutions to mitigate these barriers.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eEthical approval for this study was obtained from The Adelaide University Human Research Ethics Committee (H-2024-205) in accordance with the principles outlined in the Declaration of Helsinki. Eligible participants were adults (aged 18 years or older) with a self-reported diagnosis of multiple myeloma or smouldering myeloma, who were fluent in English, and residing in Australia.\u003c/p\u003e\u003cp\u003eParticipants were invited to take part in the \u003cem\u003emyWELL\u003c/em\u003e study, a 5-week mental health and well-being intervention, through a newsletter and targeted email from peak national body, Myeloma Australia. Participants completed an online expression of interest and provided written informed consent to take part in the study. Purposeful sampling was used to recruit health professionals across Australia. The semi-structured interviews were based on the Supportive Care Framework \u003csup\u003e\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u003c/sup\u003e, and not specific to death and dying. Interviews were conducted by author N.T. between November 2024 to March 2025, ranged from 19\u0026ndash;54 minutes, analysed using a qualitative thematic analysis framework \u003csup\u003e\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u003c/sup\u003e. The analysis was led by N.T., supported by 4 members of the research team. Themes and subthemes were defined and refined iteratively through multiple consensus discussions within the team.\u003c/p\u003e"},{"header":"Results and Discussion","content":"\u003cp\u003eTwenty-five patients participated in the semi-structured interviews (multiple myeloma n\u0026thinsp;=\u0026thinsp;21, smouldering myeloma n\u0026thinsp;=\u0026thinsp;4). Participants\u0026rsquo; demographic and clinical characteristics are summarised in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. A total of 10 health professionals were interviewed (haematologist n\u0026thinsp;=\u0026thinsp;3), myeloma nurses (n\u0026thinsp;=\u0026thinsp;3), GP (n\u0026thinsp;=\u0026thinsp;1), psychologist (n\u0026thinsp;=\u0026thinsp;1), physiotherapist (n\u0026thinsp;=\u0026thinsp;1), social worker (n\u0026thinsp;=\u0026thinsp;1) who had experience across both private and public health settings.\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\u003ePatient characteristics\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\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 \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCharacteristics\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMultiple myeloma\u003c/p\u003e \u003cp\u003e(n\u0026thinsp;=\u0026thinsp;21)\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eSmouldering myeloma\u003c/p\u003e \u003cp\u003e(n\u0026thinsp;=\u0026thinsp;4)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\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\u003e10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \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\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge, mean (SD)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e61.4 (10.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e54.5 (4.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLocation of residence:\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMetropolitan\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRural/Regional\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTime since Diagnosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLess than 2 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBetween 2 and 4 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5 years or longer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0\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\u003eThree themes were identified from the qualitative interviews: (i) Growth despite a life-limiting diagnosis, (ii) The lonely burden of dying, and (iii) Clinician reluctance to talk about death. Each theme is discussed in turn, exploring clinical, systemic, and cultural barriers to flourishing and opportunities for intervention. Extended description of themes will illustrative quotes are summarised in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\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\u003eQualitative themes and illustrative quotes from interviews with people living with myeloma, smouldering myeloma and health professionals.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\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 \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTheme\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSub-theme\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIllustrative quote\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"3\" rowspan=\"4\"\u003e \u003cp\u003e\u003cb\u003eGrowth despite a life-limiting diagnosis\u003c/b\u003e The theme explores growth in the final stages of life, focusing on acceptance of the inevitable, personal reflection, spiritual exploration, and the revaluation of what is meaningful.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAcceptance of the inevitable\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;Everyone's going to die. And since I've been diagnosed in 5 years, I've lost people who haven't had cancer, you know what I mean, and I'm dead quicker than me. So you can't dwell. Walk out and get hit by a bus. You can't dwell on life. It's an infinite, you know. It's finite, but you can't tell when it's going to end. So it's a get out life is for living is the saying\u0026rdquo;. (male, 61-65yrs)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePersonal growth and reflection\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;So, yeah, so that's kind of, in a way, it's, you know, the sort of the parable of life is that you know, we are on this journey, and it's different at different stages. And you learn from it. You know you, if you listen\u0026rdquo;. (male, 76-80yrs)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSpirituality and dying\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;I mean obviously some people might respond that they pray to God every night, or something like that. And I'm not sure what I believe in that respect, but I do believe very much so that there is somewhere else to go. Because of things that have happened when my mother died, and I feel like, well, if I'm going to go, I'm going to mum. You know what I mean, and I talk to her every day, anyway.\u0026rdquo; (female, 66-70yrs)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eValuing what is important\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;I just keep doing what I normally did in the past, and I've been building a train set for my grandson which is keeping away from screens and things, and we're always in the shed doing things together. That keeps me occupied. It keeps me grounded..\u0026rdquo; (male, 71-75yrs)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003e\u003cb\u003eThe lonely burden of dying\u003c/b\u003e\u003c/p\u003e \u003cp\u003eThe theme explores the personal challenges of facing death, including managing practical end-of-life matters, navigating the discomfort of others who avoid the topic.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePractically preparing for death\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;I'm a bit paralysed around the space of sorting will out because I feel like I'm going to have to have a will number one and will number two, you know, so even in that space, I'm not. I'm not prepared at all at the moment.\u0026rdquo; (female, 56-60yrs)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFriends don't want to talk about death\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;I've spoken to friends so much about it. I've found that most people are very scared to talk death, very scared to talk terminal illness. And ghosting was probably the worst thing I had during the whole lot of being diagnosed, and even to this day. People just don't want to face death, and I think, that's the main crux of it.\u0026rdquo; (male, 61-65yrs)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePlacating others for their benefit\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;So you find that you're actually placating other people. If that makes sense, trying to make them feel better. And rather than just say, look, you know, it is what it is. It's cancer. It's a word. I'm not afraid of it. But thank you\u0026rdquo;. (female, 65-70yrs)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003e\u003cb\u003eClinician reluctance to talk about death\u003c/b\u003e\u003c/p\u003e \u003cp\u003eClinicians raise the discomfort of talking about death and the challenges for patients and families.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eClinician discomfort and avoidance\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;You don't want to, I see that happen, the clinician doesn't want to necessarily rehash that every time, because that patient's at a critical point where they have to have hope. Otherwise, why would you wanting be wanting to sign up for a clinical trial. Why would you be coming in each week? And some people will want to fight until the very, very end.\u0026rdquo; Myeloma Nurse\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eConcerns about impact on patients and families\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;It's often difficult to predict how the end of their life is going to progress, and I don't think it's particularly help. I don't think it's particularly helpful, you know. I have discussions when they're approaching that about, you know. Where would they want to pass away? And you know what things are important to them. But I think talking about the actual process isn't particularly. I think it's distressing\u0026rdquo; (Haematologist)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePrognosis difficulites can affect reputation\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;Discussion is difficult, because people behave very differently and people progress very differently. You know some people have terrible bony disease that causes so much pain. Most people end up just getting a severe infection and just dying of the infection. So yeah, I don't. Yeah, I don't know. I don't. Yeah, wait. I wait till the end to kind of have those conversations.\u0026rdquo; (Haematologist)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e\n\u003ch3\u003eGrowth despite a life-limiting diagnosis\u003c/h3\u003e\n\u003cp\u003eParticipants described experiences of psychological growth in domains of flourishing despite the challenges of living with an incurable disease, through acceptance, considering life values and revaluation of priorities. Acknowledging the inevitability of death, some emphasised that life is unpredictable, underscoring the importance of living fully in the present. For others, the illness prompted self-reflection on their life journey, opportunities for learning, and a deepened appreciation of meaningful activities and relationships. Spirituality also emerged as a pathway for comfort, with some participants drawing strength from faith or continuing bonds with deceased loved ones.\u003c/p\u003e \u003cp\u003eThese findings underscore Symon\u0026rsquo;s proposal that dimensions of flourishing can occur even when life is ending. As argued \u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e, healthcare systems often fail to recognise or nurture capacity for personal growth due to a focus on physical symptoms, overlooking the unique potential for meaning-making and spiritual fulfilment that are critical components of flourishing. Available interventions such as dignity therapy or meaning-centred psychotherapy can be useful to support psychological growth, by helping patients document their life stories and legacy, enhancing purpose \u003csup\u003e\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e\u003c/sup\u003e. Importantly, these solutions can be offered as a complement to treatment options.\u003c/p\u003e\n\u003ch3\u003eThe lonely burden of dying\u003c/h3\u003e\n\u003cp\u003eDespite the experiences of growth that participants recalled, they often described death as a rarely acknowledged reality, characterised by both avoidance and a desire for conversation. For many, their diagnosis with multiple myeloma or smouldering myeloma was the first time they were confronted by their own mortality. Several reported actively suppressing thoughts of death, reflecting the discomfort of engaging with their own finitude. Yet, alongside avoidance, participants expressed a clear desire for death to be normalised as a part of life, emphasising the value of open dialogue to reduce fear and stigma.\u003c/p\u003e \u003cp\u003eParticipants highlighted the personal weight of preparing for death, encompassing both practical and interpersonal challenges. While some struggled with practical matters such as financial preparations, others found the silence or withdrawal of friends to be particularly painful, with avoidance reinforcing feelings of isolation. A recurring theme was the need to protect others from discomfort, with participants often minimising their own fears to placate family or friends. This dynamic underscores how the burden of dying is not only about managing one\u0026rsquo;s own mortality, but also navigating the emotional needs of others, often leaving patients unsupported in their own processing of death.\u003c/p\u003e \u003cp\u003eThis theme underscores a significant emotional barrier to flourishing and sets up the need for holistic, family-centred care. The perception of \u0026lsquo;being a burden\u0026rsquo; reflects both cultural avoidance of death and death anxiety \u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e, along with inadequate support for patients and families to navigate end-of-life dynamics, eroding aspects of flourishing such as dignity and connection. Multidisciplinary teams, including psychologists and social workers, can provide family-centred support and advance care planning, reducing isolation \u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e\n\u003ch3\u003eClinician reluctance to talk about death\u003c/h3\u003e\n\u003cp\u003eClinicians reported experiencing personal discomfort when discussing death and dying, leading to avoidance or minimisation of these conversations, likely compounding the experience of death as being the \u0026lsquo;elephant in the room\u0026rsquo;. Clinicians were concerned about causing further distress, as prognosis may feel repetitive or an emotionally burdensome topic to revisit, coupled with perceptions (or stated preferences) that patients may not want to talk about dying. Some perceived these conversations as unhelpful or harmful, potentially increasing distress or diminishing hope for their patients.\u003c/p\u003e \u003cp\u003eThe reluctance to discuss death, often for genuine and appropriate reasons (such as diminishing hope or discouraging viable treatment options), may limit opportunities for processing existential concerns and thwart flourishing. In an effort to protect families or shield patients from perceived emotional burden, information may be withheld, delaying open and honest dialogue about death \u003csup\u003e\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e\u003c/sup\u003e. While resources exist to support patients to flourish within the context of life-limiting illness, clinicians may hesitate to introduce them, either from lack of time during clinical reviews, reluctance due to uncertain prognoses, or from concerns the perceived expectation that specialists should focus on prolonging life \u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eOptions such as palliative care can enable moments of flourishing for patients with life-limiting illness, whether through meaningful connection, spiritual growth, or the freedom to express one\u0026rsquo;s identity and wishes fully \u003csup\u003e\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u003c/sup\u003e. However, palliative care is often seen as a last resort, and points to a friction between appropriate timing of referral to options such as palliative care, and diminishing hope for patients and their families. This reluctance is driven by misconceptions equating palliative care with hospice care, as clinicians often associate it with terminal care \u003csup\u003e\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u003c/sup\u003e. Communication challenges, including fear of undermining patient morale and prognostic uncertainty in multiple myeloma, as expressed by interview participants, compound these barriers, alongside systemic issues like limited access to palliative care specialists and lack of standardised referral criteria \u003csup\u003e\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e\u003c/sup\u003e. This is especially compounded in multiple myeloma where a person may live with their ultimately terminal disease for years, and hence \u0026ldquo;end of life\u0026rdquo; may \u003cem\u003eseem\u003c/em\u003e distant \u003csup\u003e\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e\u003c/sup\u003e.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study highlights the potential to promote flourishing in patients with multiple myeloma, despite their life-limiting diagnosis. Key findings underscore individual capacity for psychological growth, the need to remove barriers around conversations about death, and the emotional burden of dying in the context of cultural death anxiety. To foster flourishing, healthcare systems could consider the integration of evidence-based interventions like dignity therapy and meaning-centred psychotherapy to support meaning-making and spiritual fulfillment. Breaking the silence around death may involve early referral to palliative care and clinician training in existential communication to reduce stigma and align care with patient goals. Building meaningful, respectful relationships between haematological and palliative care services may ensure that people with multiple myeloma are able to access timely, responsive and appropriate supportive and palliative care when it is likely to provide the most benefit for their ability to live as well as possible in the context of life-limiting illness. Further, multidisciplinary teams, including palliative care specialists, psychologists, and social workers, can alleviate the perceived burden of dying by addressing practical and interpersonal challenges through family-centred support and advance care planning.\u003c/p\u003e"},{"header":"Declarations","content":"\u003ch2\u003e\u003cspan lang=\"EN-AU\"\u003eFunding:\u003c/span\u003e\u003c/h2\u003e\n\u003cp\u003e\u003cspan lang=\"EN-AU\"\u003eFunding for this research has been provided from the Australian Government\u0026apos;s Medical Research Future Fund (MRFF).\u003c/span\u003e\u003c/p\u003e\n\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eN.T. wrote the main manuscript, prepared tables and conducted the primary analysis.H.W., M.C., K.A., and M.I provided supervision and contributed to the design of the study.All authors reviewed and approved the final manuscript.\u003c/p\u003e\u003ch2\u003eAcknowledgement\u003c/h2\u003e\u003cp\u003eWe extend our sincere appreciate to all the consumers who took part in this study, whose insights were instrumental to this research.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAlex Linley P, Joseph S, Harrington S, Wood AM. 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Barriers to Access to Palliative Care. \u003cem\u003ePalliat Care.\u003c/em\u003e 2017;10:1178224216688887.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKaasa S, Loge JH, Aapro M, et al. Integration of oncology and palliative care: a Lancet Oncology Commission. \u003cem\u003eLancet Oncol.\u003c/em\u003e 2018;19:e588-e653.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"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":"supportive-care-in-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"jscc","sideBox":"Learn more about [Supportive Care in Cancer](https://www.springer.com/journal/520)","snPcode":"520","submissionUrl":"https://submission.nature.com/new-submission/520/3","title":"Supportive Care in Cancer","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"","lastPublishedDoi":"10.21203/rs.3.rs-8737263/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8737263/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eRecent theoretical and empirical advancements in well-being science can have meaningful implications for medical care when considering existential issues faced by people with incurable or life-limiting cancer diagnoses. We propose the possibility that certain elements of flourishing, such as meaning and purpose, deep personal relationships, and virtue, can be uniquely realised if targeted appropriately when life is ending. Using exploratory data from a study focussed on identifying the unmet psychological needs of patients living with the blood cancer multiple myeloma, we thematically analysed interviews with patients and clinicians to explore the possibility of flourishing at the end of life. Smouldering myeloma and multiple myeloma patients (n\u0026thinsp;=\u0026thinsp;25) reported personal growth following their diagnosis through acceptance, meaning-making, and connection, yet reported the loneliness of dying with cancer with a desire to have a discussion about death in addition to their clinician focusing on maintaining treatment. On the contrary, clinicians (n\u0026thinsp;=\u0026thinsp;10) were hesitant to discuss death, balancing hope in treatments with preparation for dying. We argue that the hesitation to discuss death thwarts the opportunity to flourish, and that existing solutions such as dignity therapy, meaning-centred psychotherapy, early palliative care, and multidisciplinary support can close this gap without diminishing hope in treatments.\u003c/p\u003e","manuscriptTitle":"Missed opportunities to promote flourishing in cancer care: a brief examination of multiple myeloma","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-03-06 14:58:29","doi":"10.21203/rs.3.rs-8737263/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2026-05-19T12:59:24+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"278923608685629625734764898558345942891","date":"2026-05-08T14:06:41+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2026-03-03T19:20:43+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2026-03-03T19:12:16+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2026-02-04T09:46:53+00:00","index":"","fulltext":""},{"type":"submitted","content":"Supportive Care in Cancer","date":"2026-01-30T04:51:51+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"
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