Talking about death and dying: Findings from deliberative discussion groups with members of the public

References

• Almack, K. (2019). Uncertain trajectories in old age and implications for families and for palliative and end of life care policy and practice. Death Studies, 1–10. https://doi.org/10.1080/07481187.2019.1671539
   PubMed Web of Science ®Google Scholar
• Almack, K., Cox, K., Moghaddam, N., Pollock, K., & Seymour, J. (2012). After you: Conversations between patients and healthcare professionals in planning for end of life care. BMC Palliative Care, 11(1), 15. https://doi.org/10.1186/1472-684X-11-15
   PubMedGoogle Scholar
• Aoun, S. M., Noonan, K., Thomas, G., & Rumbold, B. (2021). Traumatised, angry, abandoned but some empowered: A national survey of experiences of family caregivers bereaved by motor neurone disease. Palliative Care and Social Practice, 15, 263235242110385. https://doi.org/10.1177/26323524211038584
   Google Scholar
• Bazeley, P. (2021). Qualitative data analysis: Practical strategies (2nd ed.). SAGE.
   Google Scholar
• Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
   Web of Science ®Google Scholar
• Brinkman-Stoppelenburg, A., Rietjens, J. A., & van der Heide, A. (2014). The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine, 28(8), 1000–1025. https://doi.org/10.1177/0269216314526272
   PubMed Web of Science ®Google Scholar
• British Social Attitudes. (2012). Dying. National Centre for Social Research. Retrieved 12.11.2021 from https://www.bsa.natcen.ac.uk/media/38850/bsa_30_dying.pdf
   Google Scholar
• ComRes. (2016). Dying matters coalition - public opinion on death and dying. Retrieved 12.11.2021 from https://www.dyingmatters.org/sites/default/files/files/NCPC_Public%20polling%2016_Headline%20findings_1904.pdf
   Google Scholar
• Co-op Funeral Care. (2018). Making peace with death: National attitudes to death, dying and bereavement. Co-operative Group Limited. Retrieved 12.11.2021 from https://assets.ctfassets.net/5ywmq66472jr/2GNFrt85RmCks8Q62gse8I/2a20cd997dc0ff1fdc603ad402e4314c/WR_B_834_PR_Funeralcare_Report_v13b.pdf
   Google Scholar
• Cox, K., Bird, L., Arthur, A., Kennedy, S., Pollock, K., Kumar, A., Stanton, W., & Seymour, J. (2013). Public attitudes to death and dying in the UK: A review of published literature. BMJ Supportive & Palliative Care, 3(1), 37–45. https://doi.org/10.1136/bmjspcare-2012-000203
   PubMedGoogle Scholar
• Death Cafe. (2021). What is death cafe? Retrieved 16.09.2021 from https://deathcafe.com/what/
   Google Scholar
• Department of Health. (2008). End of life care strategy: Promoting high quality care for all adults at the end of life. https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life
   Google Scholar
• DeVeny Incorvaia, A. (2020). Death positivity in America: The movement—its history and literature. OMEGA - Journal of Death and Dying. https://doi.org/10.1177/00302228221085176
   Web of Science ®Google Scholar
• Dying Matters. (2016). The big conversation campaign. Retrieved 29.04.2021 from https://www.dyingmatters.org/sites/default/files/files/BC1.pdf
   Google Scholar
• Fleming, J., Farquhar, M., Cambridge City Over-75s Cohort Study, C., Brayne, C., Barclay, S., Paci, E. (2016). Death and the oldest old: Attitudes and preferences for end-of-life care–qualitative research within a population-based cohort study. PLoS ONE, 11(4), e0150686. https://doi.org/10.1371/journal.pone.0150686
   PubMed Web of Science ®Google Scholar
• Fleuren, N., Depla, M., Janssen, D., Huisman, M., & Hertogh, C. (2020). Underlying goals of advance care planning (ACP): A qualitative analysis of the literature. BMC Palliative Care, 19(1), 27. https://doi.org/10.1186/s12904-020-0535-1
   PubMed Web of Science ®Google Scholar
• Gawande, A. (2015). Being mortal: Illness, medicine and what matters in the end. Profile Books Ltd.
   Google Scholar
• The Gazette: Offical public record. (2020). Will enquiries in the UK have increased by 75 per cent. https://www.thegazette.co.uk/wills-and-probate/content/103539
   Google Scholar
• The Gold Standards Framework. (2018). Advance care planning. Retrieved 15.09.2021 from Gold Standard Framework - Advance Care Planning (goldstandardsframework.org.uk).
   Google Scholar
• Hebb, M. (2018). Lets talk about death over dinner: An invitation and guide to life’s most important conversation. Orion Spring.
   Google Scholar
• Islam, I., Nelson, A., Longo, M., & Byrne, A. (2021). Before the 2020 pandemic: An observational study exploring public knowledge, attitudes, plans and preferences towards death and end of life care in wales. BMC Palliative Care, 20, 1. https://doi.org/10.21203/rs.3.rs-141355/v1
   PubMed Web of Science ®Google Scholar
• Jackson, K., & Bazeley, P. (2019). Qualitative data analysis with NVivo (3rd ed.). SAGE.
   Google Scholar
• Jameson, D. ( Producer). (2021). Gen Z has a more mature attitude towards death than boomers, study finds. World Vice News. Retrieved 04.03.2021 from https://www.vice.com/en/article/m7a95p/gen-z-attitudes-death-study
   Google Scholar
• Kellehear, A. (2013). Compassionate communities: End-of-life care as everyone’s responsibility. QJM: An International Journal of Medicine, 106(12), 1071–1075. https://doi.org/10.1093/qjmed/hct200
   PubMed Web of Science ®Google Scholar
• Kirshbaum, M., Carey, I., & Conrad, L. (2011). Talking about dying and death. Supportive and Palliative Care, 1(2), 266-266. https://doi.org/10.1136/bmjspcare-2011-000105.189
   Google Scholar
• Knight, T., Malyon, A., Fritz, Z., Subbe, C., Cooksley, T., Holland, M., & Lasserson, D. (2020). Advance care planning in patients referred to hospital for acute medical care: Results of a national day of care survey. EClinicalMedicine, 19, 100235. https://doi.org/10.1016/j.eclinm.2019.12.005
   PubMedGoogle Scholar
• Koksvik, G. H. (2020). Neoliberalism, individual responsibilization and the death positivity movement. International Journal of Cultural Studies, 23(6), 951–967. https://doi.org/10.1177/1367877920924426
   Web of Science ®Google Scholar
• Lee, G. (2010). Assisted dying: Time to join the debate. International Journal of Palliative Nursing, 16(11), 524–526. https://doi.org/10.12968/ijpn.2010.16.11.80018
   PubMedGoogle Scholar
• Lewis, E., Cardona-Morrell, M., Ong, K. Y., Trankle, S. A., & Hillman, K. (2016). Evidence still insufficient that advance care documentation leads to engagement of healthcare professionals in end-of-life discussions: A systematic review. Palliative Medicine, 30(9), 807–824. https://doi.org/10.1177/0269216316637239
   PubMed Web of Science ®Google Scholar
• Lofland, L. (1978). The craft of dying: The modern face of death. Sage Publications.
   Google Scholar
• Macmillan Cancer Support. (2017). No regrets: How talking more openly about death could help people die well. Retrieved 04.03.2021 from https://www.macmillan.org.uk/_images/no-regrets-talking-about-death-report_tcm9-311059.pdf
   Google Scholar
• Manix, K. (2017). With the end in mind. William Collins.
   Google Scholar
• Marie Curie Cancer Care. (2014). Difficult conversations with dying patients and their families. Marie Curie ( Retrieved 12.11.2021) difficult-conversations-with-dying-people-and-their-families.pdf (mariecurie.org.uk).
   Google Scholar
• Miller Lewis, L. R., Lewis, T. W., Tieman, J., Rawlings, D., Parker, D., Sanderson, C. R., & Danforth, C. M. (2021). Words describing feelings about death: A comparison of sentiment for self and others and changes over time. PLoS ONE, 16(1), e0242848. https://doi.org/10.1371/journal.pone.0242848
   PubMed Web of Science ®Google Scholar
• Musa, I., Seymour, J., Narayanasamy, M. J., Wada, T., & Conroy, S. (2015). A survey of older peoples’ attitudes towards advance care planning. Age & Ageing, 44(3), 371–376. https://doi.org/10.1093/ageing/afv041
   PubMed Web of Science ®Google Scholar
• NICE. (2015). Care of dying adults in the last days of life. Retrieved 04.03.2021 from https://www.nice.org.uk/guidance/ng31
   Google Scholar
• Pollock, K. (2015). Is home always the best and preferred place of death? BMJ, 351, h4855. https://doi.org/10.1136/bmj.h4855
   PubMedGoogle Scholar
• Pollock, K., & Seymour, J. (2018). Reappraising ‘the good death’ for populations in the age of ageing. Age and Ageing, 47(3), 328–330. https://doi.org/10.1093/ageing/afy008
   PubMed Web of Science ®Google Scholar
• Pollock, K., & Wilson, E. (2015). Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: A qualitative study of care at the end of life. Health Services and Delivery Research, 3(31), 1–138. https://doi.org/10.3310/hsdr03310
   Google Scholar
• Rietjens, J., Korfage, I., & van der Heide, A. (2016). Advance care planning: Not a panacea. Palliative Medicine, 30(5), 421–422. https://doi.org/10.1177/0269216316642963
   PubMed Web of Science ®Google Scholar
• Robert, M., & Tradii, L. (2019). Do we deny death? I. A genealogy of death denial. Mortality, 24(3), 247–260. https://doi.org/10.1080/13576275.2017.1415318
   Google Scholar
• Robinson, E., Hart, B., & Sanders, S. (2019). It’s okay to talk about death: Exploring the end-of-life wishes of healthy young adults. Death Studies, 43(6), 389–396. https://doi.org/10.1080/07481187.2018.1478913
   PubMed Web of Science ®Google Scholar
• Rothwell, E., Anderson, R., & Botkin, J. R. (2016). Deliberative Discussion Focus Groups. Qualitative Health Research, 26(6), 734–740. https://doi.org/10.1177/1049732315591150
   PubMed Web of Science ®Google Scholar
• Royal London. (2021). How to die well: A practical guide to death, dying and loss. RANKIN. Retrieved 15.11.2021 from.
   Google Scholar
• Samsi, K., & Manthorpe, J. (2011). ‘I live for today’: A qualitative study investigating older people’s attitudes to advance planning. Health & Social Care in the Community, 19(1), 52–59. https://doi.org/10.1111/j.1365-2524.2010.00948.x
   PubMed Web of Science ®Google Scholar
• Seymour, J., Kennedy, S., Arthur, A., Pollock, K., Kumar, A., Stanton, W., & Cox, K. (2009). Public attitudes to death, dying and bereavement: a systematic synthesis. Retrieved 17.08.2021 from https://www.nottingham.ac.uk/research/groups/ncare/documents/projects/srcc-project-summary-public-attitudes.pdf
   Google Scholar
• Sudore, R., Lum, H., You, J., Hanson, L., Meier, D., Pantilat, S., Matlock, D., Rietjens, J., Korfage, I., Ritchie, C., Kutner, J., Teno, J., Thomas, J., McMahan, R., & Heyland, D. (2017). Defining advance care planning for adults: A consensus definition from a multidisciplinary delphi panel. Journal of Pain & Symptom Management, 53(5), 821–832.e821. https://doi.org/10.1016/j.jpainsymman.2016.12.331
   PubMed Web of Science ®Google Scholar
• Tradii, L., & Robert, M. (2019). Do we deny death? II. Critiques of the death-denial thesis. Mortality, 24(4), 377–388. https://doi.org/10.1080/13576275.2017.1415319
   Google Scholar
• Troyer, J. (2014). Death isn’t taboo, we’re just not encouraged to talk about it [Commentary]. The Conversation. Retrieved April 10 from https://theconversation.com/death-isnt-taboo-were-just-not-encouraged-to-talk-about-it-25001
   Google Scholar
• Troyer, J. (2019). Discovering “the craft of dying:” the 40th anniversary of the seminal classic on death & dying. https://mitpress-mit-edu.ezproxy.nottingham.ac.uk/blog/discovering-craft-dying-40th-anniversary-seminal-classic-death-dying
   Google Scholar
• Turner, N., & Caswell, G. (2020). Moral ambiguity in media reports of dying alone. Mortality, 25(3), 266–281. https://doi.org/10.1080/13576275.2019.1657388
   Google Scholar
• Vig, E. K., & Pearlman, R. A. (2004). Good and bad dying from the perspective of terminally Ill men. Archives of Internal Medicine, 164(9), 977–981. https://jamanetwork.com/journals/jamainternalmedicine/articlepdf/216996/ioi30090.pdf
   PubMedGoogle Scholar
• Wilson, E., Caswell, G., & Pollock, K. (2021). The ‘work’ of managing medications when someone is seriously ill and dying at home: A longitudinal qualitative case study of patient and family perspectives’. Palliative Medicine, 35(10), 1941–1950. https://doi.org/10.1177/02692163211030113
   PubMed Web of Science ®Google Scholar
• Zimmermann, C. (2007). Death denial: Obstacle or instrument for palliative care? An analysis of clinical literature. Sociology of Health & Illness, 29(2), 297–314. https://doi.org/10.1111/j.1467-9566.2007.00495.x
   PubMed Web of Science ®Google Scholar
• Zimmermann, C., & Rodin, G. (2004). The denial of death thesis: Sociological critique and implications for palliative care. Palliative Medicine, 18(2), 121–128. https://doi.org/10.1191/0269216304pm858oa
   PubMed Web of Science ®Google Scholar