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Research Articles

The ideal and the real: Patient and bereaved family caregiver perspectives on the significance of place of death

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References

  • Agar, M., Currow, D. C., Shelby-James, T. M., Plummer, J., Sanderson, C., & Abernethy, A. P. (2008). Preference for place of care and place of death in palliative care: are these different questions? Palliative Medicine, 22(7), 787–795. https://doi.org/10.1177/0269216308092287
  • Barratt, H., Asaria, M., Sheringham, J., Stone, P., Raine, R., & Cookson, R. (2017). Dying in hospital: socioeconomic inequality trends in England. Journal of Health Services Research & Policy, 22(3), 149–154. https://doi.org/10.1177/1355819616686807
  • Bazeley, P., & Jackson, K. (2013). Qualitative data analysis with NVIVO (2nd ed.). SAGE.
  • Benson, J. J., Schwarz, D., Brent Tofle, R., & Parker Oliver, D. (2018). The motivations and consequences of dying at home: Family caregiver perspectives. Journal of Housing for the Elderly, 32(3-4), 278–336. https://doi.org/10.1080/02763893.2018.1505460
  • Bone, A., Gomes, B., Etkind, S., Verne, J., Murtagh, F., Evans, C. J., & Higginson, I. (2018). What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. Palliative Medicine, 32(2), 329–336. https://doi.org/10.1177/0269216317734435
  • Borgstrom, E. (2015). Planning for an (un)certain future: Choice within English end-of-life care. Current Sociology, 63(5), 700–713. https://doi.org/10.1177/0011392115590084
  • 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
  • Brereton, L., Gardiner, C., Gott, M., Ingleton, C., Barnes, S., & Carroll, C. (2012). The hospital environment for end of life care of older adults and their families: an integrative review. Journal of Advanced Nursing, 68(5), 981–993. https://doi.org/10.1111/j.1365-2648.2011.05900.x
  • Broom, A., & Cavenagh, J. (2011). On the meanings and experiences of living and dying in an Australian hospice. Health (London, England : 1997), 15(1), 96–111. https://doi.org/10.1177/1363459309360797
  • Broom, A., & Kirby, E. (2013). The end of life and the family: hospice patients’ views on dying as relational. Sociology of Health & Illness, 35(4), 499–513. https://doi.org/10.1111/j.1467-9566.2012.01497.x
  • Broom, A., Kirby, E., Kenny, K., MacArtney, J. I., & Good, P. (2016). Moral ambivalence and informal care for the dying. The Sociological Review, 64, 987–1004. https://doi.org/10.1111/1467-954X.12400
  • Calanzani, N., Moens, K., Cohen, J., Higginson, I. J., Harding, R., Deliens, L., Toscani, F., Ferreira, P. L., Bausewein, C., Daveson, B. A., Gysels, M., Ceulemans, L., & Gomes, B. (2014). Choosing care homes as the least preferred place to die: a cross-national survey of public preferences in seven European countries. BMC Palliative Care, 13(1), 48. https://doi.org/10.1186/1472-684X-13-48
  • Charmaz, K. (2006). Constructing Grounded Theory, A Practical Guide Through Qualitative Analysis. Sage Publications.
  • Clark, D., & Seymour, J. (1999). Reflections on Palliative Care: Sociological and Policy Perspectives. Open University Press.
  • Coe, C. (2020). Meaningful Deaths: Home Health Workers’ Mediation of Deaths at Home. Medical Anthropology, 39(1), 96–108. https://doi.org/10.1080/01459740.2019.1693560
  • Cohen, D., & Gott, M. (2015). Dying in place in old age: public health challenges. (L. Van den Block, G. Albers, S. M. Pereira, B. D. Onwuteaka-Philipsen, R. Passman, & L. Deleins, Eds.). Oxford University Press.
  • Collier, A., & Broom, A. (2021). Unsettling Place(s) at the end of life. Social Science & Medicine (1982), 288(113536), 113536. https://doi.org/10.1016/j.socscimed.2020.113536
  • Department of Health. (2008). End of Life Care Strategy - promoting high quality care for all adults at the end of life. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/136431/End_of_life_strategy.pdf
  • Department of Health. (2016). Our Commitment to you for end of life care: The Government Response to the Review of Choice in End of Life Care https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/536326/choice-response.pdf
  • Dixon, J., King, D., Matosevic, T., Clark, M., & Knapp, M. (2015). Equity in the Provision of Palliative Care in the UK: Review of Evidence. London School of Economics and Political Science.
  • Doyle, D. (2005). Palliative Medicine: the first 18 years of a new sub-speciality of General Medicine. Journal Royal College Physicians Edinburgh, 35, 199–205. blob:https://www.rcpe.ac.uk/6fa42aa9-cc7e-4935-ae2e-9747c49cfab6
  • Driessen, A., Borgstrom, E., & Cohn, S. (2021). Placing death and dying: Making place at the end of life. Social Science & Medicine, 291, 113974. https://doi.org/10.1016/j.socscimed.2021.113974
  • Dying Matters. (2021). In a good place to die: a briefing for Dying Matters Awareness Week. Hospice UK.
  • Exley, C., & Allen, D. (2007). A critical examination of home care: End of life care as an illustrative case. Social Science & Medicine, 65(11), 2317–2327. https://doi.org/10.1016/j.socscimed.2007.07.006
  • Funk, L., Stajduhar, K. I., Toye, C. M., Aoun, S., Grande, G., & Todd, C. (2010). Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998–2008). Palliative Medicine, 24(6), 594–607. https://doi.org/10.1177/0269216310371411
  • Gardiner, C., Brereton, L., Frey, R., Wilkinson-Meyers, L., & Gott, M. (2014). Exploring the financial impact of caring for family members receiving palliative and end-of-life care: A systematic review of the literature. Palliative Medicine, 28(5), 375–390. https://doi.org/10.1177/0269216313510588
  • Gardiner, C., Robinson, J., Connolly, M., Hulme, C., Kang, K., Rowland, C., Larkin, P., Meads, D., Morgan, T., & Gott, M. (2020). Equity and the financial costs of informal caregiving in palliative care: a critical debate. BMC Palliative Care, 19(1), 71. https://doi.org/10.1186/s12904-020-00577-2
  • Gerber, K., Hayes, B., & Bryant, C. (2019). It all depends!’: A qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers. Palliative Medicine, 33(7), 802–811. https://doi.org/10.1177/0269216319845794
  • Gomes, B., & Higginson, I. J. (2006). Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ (Clinical Research ed.), 332(7540), 515–521. https://doi.org/10.1136/bmj.38740.614954.55
  • Gott, M., Robinson, J., Moeke-Maxwell, T., Black, S., Williams, L., Wharemate, R., & Wiles, J. (2019). ‘ It was peaceful, it was beautiful’: A qualitative study of family understandings of good end-of-life care in hospital for people dying in advanced age. Palliative Medicine, 33(7), 793–801. https://doi.org/10.1177/0269216319843026
  • Gott, M., Seymour, J., Bellamy, G., Clark, D., & Ahmedzai, S. H. (2004). Older people’s views about home as a place of care at the end of life. Palliative Medicine, 18(5), 460–467. https://doi.org/10.1191/0269216304pm889oa
  • Hanratty, B., Addington-Hall, J., Arthur, A., Cooper, L., Grande, G., Payne, S., & Seymour, J. (2013). What is different about living alone with cancer in older age? A qualitative study of experiences and preferences for care. BMC Family Practice, 14(22), 22. https://doi.org/10.1186/1471-2296-14-22
  • Hansford, L., Thomas, F., & Wyatt, K. (2022). Poverty, choice and dying in the UK: a call to examine whether public health approaches to palliative care address the needs of low-income communities. Mortality, 1–17. https://doi.org/10.1080/13576275.2022.2044299
  • Hoare, S., Antunes, B., Kelly, M. P., & Barclay, S. (2022). End-of-life care quality measures: beyond place of death. BMJ Supportive & Palliative Care, https://doi.org/10.1136/spcare-2022-003841
  • Hoare, S., Kelly, M. P., & Barclay, S. (2019). Home care and end-of-life hospital admissions: a retrospective interview study in English primary and secondary care. British Journal of General Practice, 69(685), e561–e569. https://doi.org/10.3399/bjgp19X704561
  • Hoare, S., Slote Morris, Z., Kelly, M. P., Kuhn, I., & Barclay, S. (2015). Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death. PloS One, 10(11), e0142723. https://doi.org/10.1371/journal.pone.0142723
  • Imison, C., Curry, N., Holder, H., Castle-Clarke, S., Nimmons, D., Appleby, J., Thorlby, R., & Lombardo, S. (2017). Shifting the balance of care. Great expectations. Nuffield Trust.
  • 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), 116. https://doi.org/10.1186/s12904-021-00806-2
  • Leemans, K., Van den Block, L., Bilsen, J., Cohen, J., Boffin, N., & Deliens, L. (2012). Dying at home in Belgium: a descriptive GP interview study. BMC Family Practice, 13(4), 4. https://doi.org/10.1186/1471-2296-13-4
  • Lofland, L. H. (2019). The Craft of Dying. (40th Anniversary ed.). The MIT Press.
  • Luta, X., Ottino, B., Hall, P., Bowden, J., Wee, B., Droney, J., Riley, J., & Marti, J. (2021). Evidence on the economic value of end-of-life and palliative care interventions: A narrative review of reviews. BMC Palliative Care, 20(1), 89. https://doi.org/10.1186/s12904-021-00782-7
  • MacArtney, J. I., Broom, A., Kirby, E., Good, P., Wootton, J., & Adams, J. (2016). Locating care at the end of life: burden, vulnerability, and the practical accomplishment of dying. Sociology of Health & Illness, 38(3), 479–492. https://doi.org/10.1111/1467-9566.12375
  • Mair, F. S., & May, C. (2014). Thinking about the burden of treatment. Should it be regarded as an indicator of the quality of care? BMJ (Clinical Research ed.), 349(g6680), g6680. https://doi.org/10.1136/bmj.g6680
  • Marie Curie. (2022). Public attitudes to death and dying in the UK. Cardiff University.
  • May, C. R., Eton, D. T., Boehmer, K., Gallacher, K., Hunt, K., MacDonald, S., Mair, F. S., May, C. M., Montori, V. M., Richardson, A., Rogers, A. E., & Shippee, N. D. (2014). Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Services Research, 14, 281. https://doi.org/10.1186/1472-6963-14-281
  • McKeown, K., Haase, T., Pratschke, J., Twomey, S., Donovan, H., & Engling, F. (2010). Dying in Hospital in Ireland: An Assessment of the Quality of Care in the Last Week of Life http://hdl.handle.net/10147/141065
  • McLoughlin, K. (2017). Have Your Say. Initial analysis of data from a national survey to inform the development of an Irish Charter on Death, Dying and Bereavement in Ireland. Irish Hospice Foundation. https://hospicefoundation.ie/wp-content/uploads/2017/10/Have-Your-Say-Report.pdf
  • Milligan, C. (2016). There’s no place like home: Place and care in an ageing society. Routledge.
  • Milligan, C., Turner, M., Blake, S., Brearley, S., Seamark, D., Thomas, C., Wang, X., & Payne, S. (2016). Unpacking the impact of older adults’ home death on family care-givers’experiences of home. Health & Place, 38, 103–111. https://doi.org/10.1016/j.healthplace.2016.01.005
  • Morris, S. M., King, C., Turner, M., & Payne, S. (2015). Family carers providing support to a person dying in the home setting: A narrative literature review. Palliative Medicine, 29(6), 487–495. https://doi.org/10.1177/0269216314565706
  • Neergaard, M. A., Brunoe, A. H., Skorstengaard, M. H., & Nielsen, M. K. (2019). What socio-economic factors determine place of death for people with life-limiting illness? A systematic review and appraisal of methodological rigour. Palliative Medicine, 33(8), 900–925. https://doi.org/10.1177/0269216319847089
  • Nuffield Trust. (2021). End of life care.
  • ONS. (2015). National Survey of Bereaved People (VOICES): England, 2015 http://www.ons.gov.uk/ons/rel/subnational-health1/national-survey-of-bereaved-people–voices-/index.html
  • Papavasiliou, E., Hoare, S., Bowers, B., Kelly, M. P., & Barclay, S. (2021). Out-of-hours services and end-of-life hospital admissions: a complex intervention systematic review and narrative synthesis. The British Journal of General Practice : The Journal of the Royal College of General Practitioners, 71(711), e780–e787. https://doi.org/10.3399/BJGP.2021.0194
  • Payne, S., Turner, M., Seamark, D., Thomas, C., Brearley, S., Wang, X., Blake, S., & Milligan, C. (2015). Managing end of life medications at home—accounts of bereaved family carers: a qualitative interview study. BMJ Supportive & Palliative Care, 5(2), 181–188. https://doi.org/10.1136/bmjspcare-2014-000658
  • Pollock, K. (2015). Is home always the best and preferred place of death? BMJ (Clinical Research ed.), 351, h4855. https://doi.org/10.1136/bmj.h4855
  • Pollock, K., & Seymour, J. (2018). Reappraising ‘the good death’ for populations in the age of ageing [editorial. Age and Ageing, 47(3), 328–330. https://doi.org/10.1093/ageing/afy008
  • 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
  • Pollock, K., Wilson, E., Caswell, G., Latif, A., Caswell, A., Avery, A. J., Anderson, C., Crosby, V., & Faull, C. (2021). Family and health care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study. Health Services and Delivery Research, 9(14), 1–162. https://doi.org/10.3310/hsdr09140
  • Public Health England. (2020). Palliative and end of life care profiles. https://fingertips.phe.org.uk/profile/end-of-life/data
  • Richards, N. (2022). The equity turn in palliative and end of life care research: Lessons from the poverty literature. Sociology Compass, 16(5), e12969. https://doi.org/10.1111/soc4.12969
  • Richards, N., & Rowley, J. (2021). Can dying at home during COVID-19 still be an indicator of 'quality of death’? Policy Scotland, January 11. https://policyscotland.gla.ac.uk/can-dying-at-home-during-covid-19-still-be-an-indicator-of-quality-of-death
  • Robinson, J., Gott, M., Gardiner, C., & Ingleton, C. (2015). A qualitative study exploring the benefits of hospital admissions from the perspectives of patients with palliative care needs. Palliative Medicine, 29(8), 703–710. https://doi.org/10.1177/0269216315575841
  • Robinson, J., Gott, M., Gardiner, C., & Ingleton, C. (2016). The ‘problematiation’ of palliative care in hospital: an exploratory review of international palliative care policy in five countries. BMC Palliative Care, 15(1), 64. https://doi.org/10.1186/s12904-016-0137-0
  • Rowley, J., Richards, N., Carduff, E., & Gott, M. (2021). The impact of poverty and deprivation at the end of life: a critical review. Palliative Care and Social Practice, 15, 263235242110338. https://doi.org/10.1177/26323524211033873
  • Sathiananthan, M. K., Crawford, G. B., & Eliott, J. A. (2021). Healthcare professionals’ perspectives of patient and family preferences of patient place of death: a qualitative study. BMC Palliative Care, 20(1), 147. https://doi.org/10.1186/s12904-021-00842-y
  • Seymour, J., Payne, S., Chapman, A., & Holloway, M. (2007). Hospice or home? Expectations of end-of-life care among white and Chinese older people in the UK. Sociology of Health & Illness, 29(6), 872–890. https://doi.org/10.1111/j.1467-9566.2007.01045.x
  • Sleeman, K., Davies, J., Verne, J., Gao, W., & Higginson, I. (2016). The changing demographics of inpatient hospice death: Population-based crosssectional study in England, 1993–2012. Palliative Medicine, 30(1), 45–53. https://doi.org/10.1177/0269216315585064
  • Sleeman, K., Leniz, J., Davies, J., Bone, A., Pask, S., Chambers, R., Kumar, R., Fraser, L., Hocaoglu, M., Oluyase, A. O., Barclay, S., Murtagh, F., & Higginson, I. (2022). Better End of LIfe 2022. Fairer Care at Home. The Covid-19 pandemic: a stress test for palliative and end of life care. Research report.
  • Teggi, D. (2020). Care homes as hospices for the prevalent form of dying: An analysis of longterm care provision towards the end of life in England. Social Science & Medicine (1982), 260, 113150. https://doi.org/10.1016/j.socscimed.2020.113150
  • The Choice in End of Life Care Programme Board. (2015). What’s important to me. A review of choice in end of life care. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/407244/CHOICE_REVIEW_FINAL_for_web.pdf
  • Thomas, C., Morris, S. M., & Clark, D. (2004). Place of death: preferences among cancer patients and their carers. Social Science & Medicine (1982), 58(12), 2431–2444. https://doi.org/10.1016/j.socscimed.2003.09.005
  • Turner, V., & Flemming, K. (2019). Socioeconomic factors affecting access to preferred place of death: A qualitative evidence synthesis. Palliative Medicine, 33(6), 607–617. https://doi.org/10.1177/0269216319835146
  • Waghorn, M., Young, H., & Davies, A. (2011). Opinions of patients with cancer on the relative importance of place of death in the context of a ‘good death. BMJ Supportive & Palliative Care, 1(3), 310–314. https://doi.org/10.1136/bmjspcare-2011-000041
  • Wahid, A. S., Sayma, M., Jamshaid, S., Kerwat, D. a., Oyewole, F., Sale, D., Ahmed, A., Cox, B., Perry, C., & Payne, S. (2018). Barriers and facilitators influencing death at home: A meta-ethnography. Palliative Medicine, 32(2), 314–328. https://doi.org/10.1177/0269216317713427
  • Wood, C., & Salter, J. (2013). A time and a place. Sue Ryder. https://www.scie-socialcareonline.org.uk/a-time-and-a-place-what-people-want-at-the-end-of-life/r/a11G00000018A5DIAU