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Mortality
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Research Article

Patient and family caregiver perspectives of Advance Care Planning: qualitative findings from the ACTION cluster randomised controlled trial of an adapted respecting choices intervention

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References

  • Arantzamendi, M., Garcia-Rueda, N., Carvajal, A., & Robinson, C. A. (2020). People with advanced cancer: The process of living well with awareness of dying. Qualitative Health Research, 30(8), 1143–1155. https://doi.org/10.1177/1049732318816298
  • Barnes, K., Barlow, C. A., Harrington, J., Ornadel, K., Tookman, A., King, M., & Jones, L. (2011). Advance care planning discussions in advanced cancer: Analysis of dialogues between patients and care planning mediators. Palliative Medicine, 9(1), 73–79. https://doi.org/10.1017/S1478951510000568
  • Bausewein, C., Calanzani, N., Daveson, B., Simon, S., Ferreira, P., Higginson, I., Bechinger-Englishon, D., Deliens, L., Gysels, M., Toscani, F., Ceulemans, L., Harding, G., and Gomes, B., & PRISMA. (2013). ‘Burden to others’ as a public concern in advanced cancer: A comparative survey in seven European countries. BMC Cancer, 13(105). http://www.biomedcentral.com/1471-2407/13/105
  • Bernard, C., Tan, A., Slaven, M., Elston, D., Heyland, D. K., & Howard, M. (2020). Exploring patient-reported barriers to advance care planning in family practice. BMC Family Practice, 21(94). https://doi.org/10.1186/s12875-020-01167-0
  • Billig, M., Condor, S., Edwards, D., Gane, M., Middleton, D., & Radley, A. (1988). Ideological dilemmas: A social psychology of everyday thinking. Sage Publications Ltd.
  • Biondo, P., Lee, L. D., Davison, S. N., & Simon, J. (2016). How healthcare systems evaluate their advance care planning initiatives: Results from a systematic review. Palliative Medicine, 30(8), 720–729. https://doi.org/10.1177/0269216316630883
  • Boyd, K., Mason, B., Kendall, M., Barclay, S., Chinn, D., Thomas, K., Sheikh, A., & Murray, S. (2010). Advance care planning for cancer patients in primary care: A feasibility study. British Journal of General Practice, 60(581), e449–e458. https://doi.org/10.3399/bjgp10X544032
  • Boyd, K., & Murray, S. A. (2014). Why is talking about dying such a challenge? Much more needs to be done to encourage the conversation. Bmj, 248(g3699). https://doi.org/10.1136/bmj.g3699
  • DiPaulo, M., Gori, F., Papi, L., & Turillazzi, E. (2019). A review and analysis of new Italian law 219/2019: ‘Provisions for informed consent and advance directives treatment’. BMC Medical Ethics, 20(17). https://doi.org/10.1186/s12910-019-0353-2
  • Drought, T. S., & Koenig, B. A. (2002). “ Choice” in end-of-life decision making: Researching fact or fiction?. The Gerontologist, 42(suppl_3), 114–128. https://doi.org/10.1093/GERONT/42.SUPPL_3.114
  • Ekdahl, A. W., Andersson, L., & Friedrichsen, M. (2010). “They do what they think is the best for me.” Frail elderly patients’ preferences for participation in their care during hospitalization. Patient Education and Counseling, 80(2), 233–240. https://doi.org/10.1016/j.pec.2009.10.026
  • Eliott, J. A., & Olver, I. N. (2007). The implications of dying cancer patients’ talk on cardiopulmonary resuscitation and do-not-resuscitate orders. Qualitative Health Research, 17(4), 442–455. https://doi.org/10.1177/1049732307299198
  • Fleuren, N., Depla, M. F., Janssen, D., Huisman, M., & Hertogh, C. M. (2020). Underlying goals of advance care planning (ACP): A qualitative analysis of the literature. BMC Palliative Care, 19(27). https://doi.org/10.1186/s12904-020-0535-1
  • Hopkins, S., Bentley, A., Phillips, V., & Barclay, S. (2020). Advance care plans and hospitalized frail older adults: A systematic review. BMJ Supportive Care in Cancer, 10, 164–174. https://doi.org/10.1136/bmjspcare-2019-002093
  • Jiminez, G., Shin Tan, W., Bvirk, A. K., Kee Low, C., Car, J., & Hau Yan Ho, A. (2018). State of advance care planning research: A descriptive overview of systematic reviews. Palliative & Supportive Care, 17, 234–244. https://doi.org/10.1017/S1478951518000500
  • Johnson, S., Butow, P., Kerridge, I., & Tattersall, M. H. N. (2016). Advance care planning for cancer patients: A systematic review of perceptions and experiences of patients, families, and healthcare providers. Psychooncology, 25(4), 362–386. https://doi.org/10.1002/pon.3926
  • Johnson, S., Kerridge, I., Butow, P., & Tattersall, M. H. N. (2017). Advance care planning: Is quality end of life care really that simple? Internal Medicine Journal, 47(4), 390–394. https://doi.org/10.1111/imj.13389
  • Johnson, S., Butow, P., Kerridge, I., & Tattersall, M. H. N. (2017). What do patients with cancer and their families value most at the end of life? A critical analysis of advance care planning. International Journal of Palliative Nursing, 23(12), 596–604. https://doi.org/10.12968/ijpn.2017.23.12.596
  • Johnson, S., Butow, P., Bell, M., Detering, K., Clayton, J., Silvester, W., Kiely, B., Clarke, S., Vaccaro, L., Stockler, M., Beale, P., Fitzgerald, N., & Tattersall, M. H. N. (2018). A randomised controlled trial of an advance care planning intervention for patients with incurable cancer. British Journal of Cancer, 119(10), 1182–1190. https://doi.org/10.1038/s41416-018-0303-7
  • Johnson, S., Butow, P., Kerridge, I., Bell, M., & Tattersall, M. H. N. (2018). How well do current measures assess the impact of advance care planning on concordance between patient preferences for end-of-life care and the care received: A methodological review. Journal of Pain and Symptom Management, 55(2), 480–495. https://doi.org/10.1016/j.jpainsymman.2017.09.008
  • Johnson, S., Butow, P., Kerridge, I., & Tattersall, M. H. N. (2018). Patient autonomy and advance care planning: A qualitative study of oncologist and palliative care physicians’ perspectives. Supportive Care in Cancer, 26(2), 565–574. https://doi.org/10.1007/s00520-017-3867-5
  • 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
  • Korfage, I. J., Carreras, G., Arnfeldt Christensen, C., Billekens, P. F. A., Bramley, L., Briggs, L., Bulli, F., Caswell, G., Cerv, B., van Delden, J. J. M., Deliens, L., Eecloo, K., Gorini, G., Groenvold, M., Hammes, B., Ingravallo, F., Jabbarian, L., Kars, M. C., Kodba Ceh, H. … Rietjens, J. A. C. (2020). Advance care planning in patients with advanced cancer: A 6- country, cluster-randomized trial. PLOS Medicine 17(11), e1003422. https://doi.org/10.1371/journal.pmed.1003422
  • Liu, C. -C., Te-Chun, Y., Hsieh, M. -H., Woung, L. -C., Huang, S. -J., Chen, M., & Liu, C. -K. (2020). A worldwide bibliometric analysis of publications on advance care planning in the past 3 decades. Americal Journal of Hospice and Palliative Medicine, 37(6), 474–480. https://doi.org/10.1177/1049909119886305
  • 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
  • MacArtney, J. I., Broom, A., Kirby, E., Good, P., & Wootton, J. (2017). The liminal and the parallax: Living and dying at the end of life. Qualitative Health Research, 27(5), 623–633. https://doi.org/10.1177/1049732315618938
  • MacArtney, J. I., Andersen, R. S., Malmstrom, M., Rasmussen, B., & Ziebland, S. (2020). The convivial and the pastoral in patient–doctor relationships: A multi-country study of patient stories of care, choice and medical authority in cancer diagnostic processes. Sociology of Health & Illness, 42(4), 844–861. https://doi.org/10.1111/1467-9566.13067
  • MacKenzie, M. A., Smith-Howell, E., Bomba, P. A., & Meghani, S. H. (2018). Respecting choices and related models of advance care planning: A systematic review of published evidence. American Journal of Hospice & Palliative Medicine, 35(6), 897–907. https://doi.org/10.1177/1049909117745789
  • Matthijs, P. V. W., Rurup, M. L., Pasman, H. R. W., Kaspers, P. J., & Onwuteaka-Philipsen, B. D. (2010). Advance directives in the Netherlands: An empirical contribution to the exploration of a cross-cultural perspective on Advance Directives. Bioethics, 24(3), 118–126. https://doi.org/10.1111/j.1467-8519.2009.01788.x
  • McIlfatrick, S., Slater, P., Bamidele, O., Muldrew, D., Beck, E., & Hasson, F. (2021). ‘It’s almost superstition: If I don’t think about it, it won’t happen’. Public knowledge and attitudes towards advance care planning: A sequential mixed methods study. Palliative Medicine, 35 (7), 1536-1356. https://doi.org/10.1177/02692163211015838
  • Morrison, R. S. (2020). Advance directives/care planning: Clear, simple and wrong. Journal of Palliative Medicine, 23(7), 878–879. https://doi.org/10.1089/jpm.2020.0272
  • 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
  • Neergaard, M., Brogaard, T., Vedsted, P., & Jensen, A. (2018). Asking terminally ill patients about their preferences concerning place of care and death. International Journal of Palliative Nursing, 24(3), 124–131. https://doi.org/10.12968/ijpn.2018.24.3.124
  • Nierop van Baalen, C., Mieke, G., van Hecke, A., & Verhaeghe, S. (2019). Health professionals dealing with hope in palliative patients with cancer, an explorative qualitative research. European Journal of Cancer Care, 28(1), e12889. https://doi.org/10.1111/ecc.12889
  • O’Sullivan, E. M., & Higginson, I. J. (2016). ‘I’Ll continue as long as I can, and die when I can’t help it’: A qualitative exploration of the views of end-of-life care by those affected by head and neck cancer (HNC). BMJ Supportive & Palliative Care, 6(1), 43–51. https://doi.org/10.1136/bmjspcare-2014-000664
  • Peck, V., Valiani, S., Tanuseputro, P., Mulpuru, S., Kyeremanteng, K., Fitzgibbon, E., Forster, A., & Kobewka, D. (2018). Advance care planning after hospital discharge: Qualitative analysis of facilitators and barriers from patient interviews. BMC Palliative Care, 17(127). https://doi.org/10.1186/s12904-018-0379-0
  • Piers, R. D., van Eechoud, I. J., Van Camp, S., Grypdonck, M., Deveugele, M., Verbeke, N., & Van Den Noortgate, N. J. (2013). Advance care planning in terminally ill and frail older persons. Patient Education and Counseling, 90(3), 232–239. https://doi.org/10.1016/j.pec.2011.07.008
  • 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
  • Richards, N., Ingleton, C., Gardiner, C., & Gott, M. (2013). Awareness contexts revisited: Indeterminacy in initiating discussions at the end-of-life. Journal of Advanced Nursing, 69(12), 2654–2664. https://doi.org/10.1111/jan.12151
  • Rietjens, J., Sudore, R. L., Connolly, M., van Delden, J. J. M., Drickamer, M., Droger, M., Van der Heide, A., Heyland, D. K., Houttekier, D., Janssen, D., Orsi, L., Payne, S., Seymour, J., Jox, R. J., Korfage, I., & on behalf of the European Association for Palliative Care; (2017). Definition and recommendations for advance care planning: An international consensus supported by the European Association for Palliative Care. The Lancet Oncology, 18(9), e543–551. https://doi.org/10.1016/S1470-2045(17)30582-X
  • Robins-Browne, K., Palmer, V., & Komesaroff, P. (2014). An unequivocal good? Acknowledging the complexities of advance care planning. Internal Medical Journal, 44(10), 957–959. https://doi.org/10.1111/imj.12556
  • Robinson, C. A. (2011). Advance care planning: Re-visioning our ethical approach. Canadian Journal of Nursing Research, 43(2), 18–37.
  • Robinson, C. A. (2012). “Our best hope is a cure.” Hope in the context of advance care planning. Palliative & Supportive Care, 10(2), 75–82. https://doi.org/10.1017/S147895151100068X
  • Rodado, E. P., Sanchez, D. P., & Gisbert, G. M. (2021). Advance directives. Comparison of current legislation within the European Union. Spanish Journal of Legal Medicine, 47(2), 66–73. https://doi.org/10.1016/j.reml.2020.05.009
  • Seymour, W., Rietjens, J., Dbruinsma, S., Deliens, L., Sterckz, S., Mortier, F., Brown, J., Mathers, N., and Van der Heide, A., & (UNBIASED Consortium. (2015). Using continuous sedation until death for cancer patients: A qualitative interview study of physicians’ and nurses’ practice in three European countries. Palliative Medicine, 29(1),48-59. https://doi.org/10.1177/0269216314543319
  • Sherwin, S. (1998). A relational approach to autonomy in health care. In S. Sherwin (Ed.), The politics of women’s health, exploring agency and autonomy (pp. 19–47). Temple University Press.
  • Simon, J., Porterfield, P., Bouchal, S. R., & Heyland, D. K. (2015). ‘Not yet’ and ‘Just ask’: Barriers and facilitators to advance care planning—A qualitative descriptive study of the perspectives of seriously ill, older patients and their families. BMJ Supportive Care in Cancer, 5, 54–62. https://doi.org/10.1136/bmjspcare-2013-000487
  • Stake, R. E. (2006). Multiple case study analysis. Guildford Press.
  • Sudore, R. L., & Fried, T. R. (2010). Redefining the “planning” in advance care planning: Preparing for end-of-life decision making. Annals of Internal Medicine, 153(4), 256–261. https://doi.org/10.7326/0003-4819-153-4-201008170-00008
  • Sudore, R. L., Schillinger, D., Knight, S. J., & Fried, T. R. (2010). Uncertainty about advance care planning treatment preferences among diverse older adults. Journal of Health Communication, 15Suppl 2(Supple2), 159–171. https://doi.org/10.1080/10810730.2010.499982
  • Sudore, R. L., Heyland, D. K., Lum, H., Rietjens, J. A. C., Korfage, I. J., Ritchie, C. W., Hanson, L. C., Meier, D. E., Pantilat, S. Z., Lorenz, K. A., Howard, M., Green, M. J., Simon, J., Feuz, M., & You, J. J. (2018). Outcomes that define successful advance care planning: A Delphi panel consensus. Journal of Pain and Symptom Management, 55(2), 245–255. https://doi.org/10.1016/j.jpainsymman.2017.08.025
  • Thomas, C., Morris, S. M., & Clark, D. (2004). Place of death: Preferences among cancer patients and their carers. Social Science & Medicine, 58(12), 2431–2444. https://doi.org/10.1016/j.socscimed.2003.09.005
  • Totman, J., Pistrang, N., Smith, S., Hennessey, S., & Martin, J. (2015). ‘You only have one chance to get it right’: A qualitative study of relatives’ experiences of caring at home for a family member with terminal cancer. Palliative Medicine, 29(6), 496–507. https://doi.org/10.1177/0269216314566840
  • van Eechoud, I. J., Piers, R. D., Van Camp, S., Grypdonck, M., Van Den Noortgate, N. J., Deveugle, M., Verbeke, N., & Verghaeghe, S. (2014). Perspectives of family members on planning end-of-life care for terminally ill and frail older people. Journal of Pain and Symptom Management, 47(5), 876–886. https://doi.org/10.1016/j.jpainsymman.2013.06.007
  • Weathers, E., O’Caoimh, R., Cornally, N., Fitzgerald, C., Kearns, T., Coffey, A., Daly, E., O’Sullivan, R., McGlade, C., & Molloy, D. (2016). Advance care planning: A systematic review of randomised controlled trials conducted with older adults. Maturitas, 91, 109–111. https://doi.org/10.1016/j.maturitas.2016.06.016
  • Young, A., Ofori-Boateng, T., Rodriguez, K., & Plowman, J. L. (2003). Meaning and agency in discussing end-of-life care: A study of elderly veterans’ values and interpretations. Qualitative Health Research, 13(8), 1039–1062. https://doi.org/10.1177/1049732303256554
  • Zwakman, M., Jabbarian, L., Van Delden, J. J. M., Van der Heide, A., Korfage, I., Pollock, K., Rietjens, J., Seymour, J., & Kars, M. C. (2018a). Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness [review]. Palliative Medicine, 32(8),1305-1321. https://doi.org/10.1177/0269216318784474
  • Zwakman, M., Jabbarian, L., van Delden, J. J. M., Van der Heide, A., Korfage, I., Pollock, K., Rietjens, J., Seymour, J., & Kars, M. C. (2018b). Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness. Palliative Medicine, 32(8), 1305–1321. https://doi.org/10.1177/0269216318784474
  • Zwakman, M., van Delden, J. J. M., Caswell, G., Deliens, L., Ingravallo, F., Jabbarian, L., Johnsen, A., Korfage, I., Mimic, A., Moller Arnfeldt, C., Preston, N., Kars, M. C., & On behalf of the Action Consortium. (2019). Content analysis of advance directives completed by patients with advanced cancer as part of an advance care planning intervention: Insights gained from the ACTION trial. Supportive Care Cancer. https://doi.org/10.1007/s00520-019-04956-1
  • Zwakman, M., Pollock, K., Bulli, F., Caswell, G., Cerv, B., van Delden, J. J. M., Deliens, L., Van der Heide, A., Jabbarian, L., Koba-Ceh, H., Lunder, U., Miccinesi, G., Moller Arnfeldt, C., Seymour, J., Toccafondi, A., Verkissen, M. N., Kars, M. C., & (On behalf of the Action Consortium. (2019). Trained facilitators’ experiences with structured advance care planning conversations in oncology: An international focus group study within the ACTION trial. BMC Cancer, 19(1). https://doi.org/10.1186/s12885-019-6170-7
  • Zwakman, M., Milota, M. M., van der Heide, A., Jabbarian, L., Korfage, I. J., Rietjens, J. A. C., van Delden, J. J. M., & Kars, M. C. (2020). Unraveling patients’ readiness in advance care planning conversations: A qualitative study as part of the ACTION study. Supportive Care Cancer, 29(6), 2917-2929. https://doi.org/10.1007/s00520-020-05799-x