‘There for me’: A qualitative study of family communication and decision-making in end-of-life care for older people

References

• Oliver D. Improving patient outcomes through palliative care integration in other specialised health services: what we have learned so far and how can we improve? Ann Palliat Med 2018;7(Suppl. 3):S219–S230. doi: 10.21037/apm.2018.05.05
   PubMedGoogle Scholar
• Johnson C, McVey P, Rhee J. General practice palliative care: patient and carer expectations, advance care plans and place of death – a systematic review. BMJ Support Palliat Care 2018. doi: 10.1136/bmjspcare-2018-001549
   Google Scholar
• American Psychological Association. APA dictionary of psychology – communication; 2020. Available from: https://dictionary.apa.org/communication
   Google Scholar
• Caswell G, Pollock K, Harwood R. Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study. BMC Palliat Care 2015;14(1):35. doi:10.1186/s12904-015-0032-0.
   PubMedGoogle Scholar
• Nedjat-Haiem F, Carrion I, Gonzalez K. Exploring health care providers’ views about initiating end-of-life care communication. Am J Hosp Palliat Med 2017;34(4):308–317. doi: 10.1177/1049909115627773
   PubMed Web of Science ®Google Scholar
• Nouvet E, Strachan P, Kryworuchko J. Waiting for the body to fail: limits to end-of-life communication in Canadian hospitals. Mortality 2016;21(4):340–356. doi: 10.1080/13576275.2016.1140133
   Google Scholar
• Udo C, Lövgren M, Lundquist G. Palliative care physicians’ experiences of end-of-life communication: a focus group study. Eur J Cancer Care 2018;27(1):e12728. doi: 10.1111/ecc.12728
   Web of Science ®Google Scholar
• Van den Heuvel L, Hoving C, Schols J. Barriers and facilitators to end-of-life communication in advanced chronic organ failure. Int J Palliat Nurs 2016;22(5):222–229. doi: 10.12968/ijpn.2016.22.5.222
   PubMed Web of Science ®Google Scholar
• Legal and Social Issues Committee Legislative Council. Inquiry into end of life choices. Melbourne: Parliament of Victoria; 2016.
   Google Scholar
• Fried T, Bradley E, O’Leary J. Unmet desire for caregiver-patient communication and increased caregiver burden. J Am Geriatr Soc 2005;53(1):59–65. doi:10.1111/j.1532-5415.2005.53011.x.
   PubMed Web of Science ®Google Scholar
• Minichiello T, Ling D, Ucci D. Breaking bad news: a practical approach for the hospitalist. J Hosp Med 2007;2(6):415–421. doi: 10.1002/jhm.271
   PubMed Web of Science ®Google Scholar
• Fallowfield L, Jenkins V. Communicating sad, bad, and difficult news in medicine. Lancet 2004;363(9405):312–319. doi: 10.1016/S0140-6736(03)15392-5
   PubMed Web of Science ®Google Scholar
• Saini G, Sampson E, Davis S. An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes. BMC Palliat Care 2016;15–27(1):55. doi: 10.1186/s12904-016-0127-2
   Google Scholar
• Ke L-S, Huang X, Hu W-Y. Experiences and perspectives of older people regarding advance care planning: A meta-synthesis of qualitative studies. Palliat Med 2017;31(5):394–405. doi: 10.1177/0269216316663507
   PubMed Web of Science ®Google Scholar
• Pollock K, Wilson E. 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 Serv Deliv Res 2015;3:31. doi:10.3310/hsdr03310.
   Google Scholar
• Elliott B, Gessert C, Peden-McAlpine C. Family decision-making in advanced dementia: narrative and ethics. Scand J Caring Sci 2009;23(2):251–258. doi:10.1111/j.1471-6712.2008.00613.x.
   PubMed Web of Science ®Google Scholar
• Gerber K, Hayes B, Bryant C. ‘It all depends!’: a qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers. Palliat Med 2019;33(7):802–811. doi:10.1177/0269216319845794.
   PubMed Web of Science ®Google Scholar
• Moore K, Davis S, Gola A. Experiences of end of life amongst family carers of people with advanced dementia: longitudinal cohort study with mixed methods. BMC Geriatr 2017;17(1):135. doi:10.1186/s12877-017-0523-3.
   PubMed Web of Science ®Google Scholar
• Moore K, Elliott M, Kupeli N. A qualitative analysis of barriers to future care discussions with family members of care home residents with advanced dementia. BMJ Support Palliat Care 2015;5(1):112–113. doi: 10.1136/bmjspcare-2014-000838.28
   Google Scholar
• Wallace C. Family communication and decision making at the end of life: a literature review. Palliat Support Care 2015;13(3):815–825. doi: 10.1017/S1478951514000388
   PubMed Web of Science ®Google Scholar
• Bryman A. Social research methods. 5th ed. Oxford: Oxford University Press; 2016.
   Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3(2):77–101. doi:10.1191/1478088706qp063oa.
   Google Scholar
• Ryan GW, Bernard HR. Techniques to identify themes. Field Methods 2003;15(1):85–109. doi:10.1177/1525822X02239569.
   Google Scholar
• Fleming J, Farquhar M. Death and the oldest old: attitudes and preferences for end-of-life care. PLoS One 2016;11(4):e0150686. doi:10.1371/journal.pone.0150686.
   PubMed Web of Science ®Google Scholar
• Jennings B, Morrissey M. Health care costs in end-of-life and palliative care: the quest for ethical reform. J Soc Work End-of-Life Palliat Care 2011;7(4):300–317. doi:10.1080/15524256.2011.623458.
   PubMedGoogle Scholar
• Meeker M, Jezewski M. Family decision making at end of life. Palliat Support Care 2005;3(2):131–142. doi: 10.1017/S1478951505050212
   PubMedGoogle Scholar
• Gardner DS, Kramer BJ. End-of-life concerns and care preferences: congruence among terminally ill elders and their family caregivers. Omega 2009;60(3):273–297. doi: 10.2190/OM.60.3.e
   PubMed Web of Science ®Google Scholar
• Heyland D, Barwich D, Pichora D. Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Int Med 2013;173(9):778–787. doi: 10.1001/jamainternmed.2013.180
   PubMed Web of Science ®Google Scholar
• Tait V, Higgs M, Magann L. Attitudes of nonpalliative care nurses towards palliative care. Int J Palliat Care 2015: 1–6. doi: 10.1155/2015/469174
   Google Scholar
• Department of Health and Human Services. A guide for high-quality end of life care for all Victorians. Melbourne: Victorian Government; 2016.
   Google Scholar
• Barrett R. Anthropology at the end of life. In: M Singer, P Erickson, (eds.) A companion to medical anthropology. West Sussex: Blackwell; 2011. p. 477–490.
   Google Scholar
• Lawton J. The dying process: patients’ experiences of palliative care. London: Routledge; 2000.
   Google Scholar
• Detering K, Hancock A, Reade M. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010;340:c1345. doi: 10.1136/bmj.c1345
   PubMed Web of Science ®Google Scholar
• Department of Health and Human Services. Advance care planning: have the conversation. A strategy for Victorian health services 2014–2018. Melbourne: Victorian Government; 2014.
   Google Scholar
• Swerissen H, Duckett S, Farmer J. Dying well. Melbourne: Grattan Institute; 2014.
   Google Scholar
• Gerber K, Hayes B, Bryant C. Preferences for place of care and place of death: What, how, when and who to ask? Prog Palliat Care 2019;27(2):64–68. doi:10.1080/09699260.2019.1611988.
   Web of Science ®Google Scholar