Hostname: page-component-cd9895bd7-hc48f Total loading time: 0 Render date: 2024-12-20T02:10:33.681Z Has data issue: false hasContentIssue false
  • English
  • Français

Autonomy and control in the wish to die in terminally ill patients: A systematic integrative review

Published online by Cambridge University Press:  07 July 2021

Andrea Rodríguez-Prat Open the ORCID record for Andrea Rodríguez-Prat [Opens in a new window] ,
Donna M. Wilson Open the ORCID record for Donna M. Wilson [Opens in a new window]  and
Remei Agulles
Andrea Rodríguez-Prat*
Affiliation:
Faculty of Humanities, Universitat Internacional de Catalunya, Barcelona, Spain School of Medicine and Health Sciences, Universitat Internacional de Catalunya, Barcelona, Spain
Donna M. Wilson
Affiliation:
Faculty of Nursing, University of Alberta, Edmonton, AB, CanadaT6G 1C9
Remei Agulles
Affiliation:
Faculty of Humanities, Universitat Internacional de Catalunya, Barcelona, Spain
*
Author for correspondence: Andrea Rodríguez-Prat, Faculty of Humanities, School of Medicine and Health Sciences, Universitat Internacional de Catalunya, Josep Trueta s/n, 08195 Sant Cugat del Vallès, Barcelona, Spain. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Background/Objective

Personal autonomy and control are major concepts for people with life-limiting conditions. Patients who express a wish to die (WTD) are often thought of wanting it because of loss of autonomy or control. The research conducted so far has not focused on personal beliefs and perspectives; and little is known about patients’ understanding of autonomy and control in this context. The aim of this review was to analyze what role autonomy and control may play in relation to the WTD expressed by people with life-limiting conditions.

Methods

A systematic integrative review was conducted. The search strategy used MeSH terms in combination with free-text searching of the EBSCO Discovery Service (which provides access to multiple academic library literature databases, including PubMed and CINAHL), as well as the large PsycINFO, Scopus, and Web of Science library literature databases from their inception until February 2019. The search was updated to January 2021.

Results

After the screening process, 85 full texts were included for the final analysis. Twenty-seven studies, recording the experiences of 1,824 participants, were identified. The studies were conducted in Australia (n = 5), Canada (n = 5), USA (n = 5), The Netherlands (n = 3), Spain (n = 2), Sweden (n = 2), Switzerland (n = 2), Finland (n = 1), Germany (n = 1), and the UK (n = 1). Three themes were identified: (1) the presence of autonomy for the WTD, (2) the different ways in which autonomy is conceptualized, and (3) the socio-cultural context of research participants.

Significance of results

Despite the importance given to the concept of autonomy in the WTD discourse, only a few empirical studies have focused on personal interests. Comprehending the context is crucial because personal understandings of autonomy are shaped by socio-cultural–ethical backgrounds and these impact personal WTD attitudes.

Keywords

AutonomyControlDesire to diePalliative careSystematic review
Type
Review Article
Information
Palliative & Supportive Care , Volume 19 , Issue 6 , December 2021 , pp. 759 - 766
Check for updates
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Albert, SM, Rabkin, JG, Del Bene, ML, et al. (2005) Wish to die in end-stage ALS. Neurology 65(1), 68–74.CrossRefGoogle ScholarPubMed
Allan, A and Allan, MM (2020) Ethical issues when working with terminally ill people who desire to hasten the ends of their lives: A western perspective. Ethics and Behavior 30(1). doi:10.1080/10508422.2019.1592683CrossRefGoogle Scholar
Asch, DA (1996) Issues at the end of life… The role of critical care nurses in euthanasia and assisted suicide. New England Journal of Medicine Orthopaedic Nursing 15(4), 37–41.Google Scholar
Bakitas, MA (2005) Self-determination: Analysis of the concept and implications for research in palliative care. Canadian Journal of Nursing Research 37(2), 22–49.Google ScholarPubMed
Bolmsjö, I (2000) Existential issues in palliative care-interviews with cancer patients. Journal of Palliative Care 16(2), 20.CrossRefGoogle ScholarPubMed
Branigan, M (2015) Desire for hastened death: Exploring the emotions and the ethics. Current Opinion in Supportive and Palliative Care 9(1), 64–71. doi:10.1097/SPC.0000000000000109CrossRefGoogle ScholarPubMed
Breitbart, W, Rosenfeld, B, Pessin, H, et al. (2000) Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. Journal of the American Medical Association 284(22), 2907–2911. doi:10.1001/jama.284.22.2907CrossRefGoogle ScholarPubMed
CASP (1999) Critical Appraisal Skills Programme. Ten Questions to Help Youmake Sense of Qualitative Research. Oxford. Available at: http://media.wix.com/ugd/dded87_951541699e9edc71ce66c9bac4734c69.pdfGoogle Scholar
Cavalieri, TA (2001) Ethical issues at the end of life. Journal of the American Osteopathic Association 101(10), 616–622. doi:10.5840/asce19981825Google ScholarPubMed
Chambaere, K, Rietjens, JA, Smets, T, et al. (2012) Age-based disparities in end-of-life decisions in Belgium: A population-based death certificate survey. BMC Public Health 12, 447.CrossRefGoogle ScholarPubMed
Chapple, A, Ziebland, S and McPherson, A (2006) What people close to death say about euthanasia and assisted suicide: A qualitative study. Journal of Medical Ethics 32(12), 706–710. doi:10.1136/jme.2006.015883CrossRefGoogle ScholarPubMed
Chochinov, HM, Wilson, KG, Enns, M, et al. (1995) Desire for death in the terminally ill. American Journal of Psychiatry 152, 1185–1191.Google ScholarPubMed
Coyle, N and Sculco, L (2004) Expressed desire for hastened death in seven patients living with advanced cancer: A phenomenologic inquiry. Oncology Nursing Forum 31(4), 699–709.10.1188/04.ONF.699-709CrossRefGoogle ScholarPubMed
Dees, MK, Vernooij-Dassen, MJ, Dekkers, WJ, et al. (2013) Perspectives of decision-making in requests for euthanasia: A qualitative research among patients, relatives and treating physicians in the Netherlands. Palliative Medicine 27(1), 27–37. doi:10.1177/0269216312463259CrossRefGoogle ScholarPubMed
Dixon-Woods, M, Sutton, A, Shaw, R, et al. (2007) Appraising qualitative research for inclusion in systematic reviews: A quantitative and qualitative comparison of three methods. Journal of Health Service Research & Policy 12(1), 42–47.CrossRefGoogle ScholarPubMed
Ganzini, L, Beer, TM and Brouns, MC (2006) Views on physician-assisted suicide among family members of oregon cancer patients. Journal of Pain and Symptom Management 32(3), 230–236. doi:10.1016/j.jpainsymman.2006.04.004CrossRefGoogle ScholarPubMed
Goel, A, Chhabra, G, Weijma, R, et al. (2014) End-of-life care attitudes, values, and practices among health care workers. American Journal of Hospice & Palliative Medicine 31(2), 139–147. doi:10.1177/1049909113479440CrossRefGoogle ScholarPubMed
Gómez-Vírseda, C, De Maeseneer, Y and Gastmans, C (2019) Relational autonomy: What does it mean and how is it used in end-of-life care? A systematic review of argument-based ethics literature. BMC Medical Ethics 20(76). doi:10.1186/s12910-019-0417-3CrossRefGoogle Scholar
Gudat, H, Ohnsorge, K, Streeck, N, et al. (2019) How palliative care patients’ feelings of being a burden to others can motivate a wish to die. Moral challenges in clinics and families. Bioethics 33(4), 421–430. doi:10.1111/bioe.12590CrossRefGoogle ScholarPubMed
Güell, E, Ramos, A, Zertuche, T, et al. (2015) Verbalized desire for death or euthanasia in advanced cancer patients receiving palliative care. Palliative and Supportive Care 13(2), 295–303. doi:10.1017/S1478951514000121CrossRefGoogle ScholarPubMed
Hagens, M, Onwuteaka-Philipsen, BD and Pasman, HRW (2016) Trajectories to seeking demedicalised assistance in suicide: A qualitative in-depth interview study. Journal of Medical Ethics 43(8), 543–548. doi:10.1136/medethics-2016-103660CrossRefGoogle ScholarPubMed
Hasselaar, JGJ, Reuzel, RPB, Verhagen, SCAHHVM, et al. (2007) Improving prescription in palliative sedation: Compliance with Dutch guidelines. Archives of Internal Medicine 167(11), 1166–1171. doi:10.1001/archinte.167.11.1166CrossRefGoogle ScholarPubMed
Ho, AHY, Chan, CLW, Leung, PPY, et al. (2013) Living and dying with dignity in Chinese society: Perspectives of older palliative care patients in Hong Kong. Death Studies 42(4), 455–461. doi:10.1093/ageing/aft003Google Scholar
Hong, QN, Pluye, P, Bujold, M, et al. (2017) Convergent and sequential synthesis designs: Implications for conducting and reporting systematic reviews of qualitative and quantitative evidence. Systematic Reviews 6(1), 61. doi:10.1186/s13643-017-0454-2CrossRefGoogle ScholarPubMed
Huxtable, R and Mullock, A (2015) Voices of discontent? Conscience, compromise, and assisted dying. Medical Law Review 23(2), 242–262. doi:10.1093/medlaw/fwv008CrossRefGoogle ScholarPubMed
Inthorn, J, Schicktanz, S, Rimon-Zarfaty, N, et al. (2015) “What the patient wants…”: Lay attitudes towards end-of-life decisions in Germany and Israel. Medicine, Health Care & Philosophy 18(3), 329–340. doi:10.1007/s11019-014-9606-5CrossRefGoogle ScholarPubMed
Jochemsen, H and Keown, J (1999) Voluntary euthanasia under control? Further empirical evidence from the Netherlands. Journal of Medical Ethics 25, 16–21. doi:10.1136/jme.25.1.16CrossRefGoogle ScholarPubMed
Johansen, S, Hølen, JC, Kaasa, S, et al. (2005) Attitudes towards, and wishes for, euthanasia in advanced cancer patients at a palliative medicine unit. Palliative Medicine 19(6), 454–460. doi:10.1191/0269216305pm1048oaCrossRefGoogle Scholar
Karlsson, M, Milberg, A and Strang, P (2012) Dying cancer patients’ own opinions on euthanasia: An expression of autonomy? A qualitative study. Palliative Medicine 26(1), 34–42. doi:10.1177/0269216311404275CrossRefGoogle ScholarPubMed
Kelly, B, Burnett, P, Pelusi, D, et al. (2002) Terminally ill cancer patients’ wish to hasten death. Palliative Medicine 16, 339–345. doi:10.1191/ 0269216302pm538oaCrossRefGoogle ScholarPubMed
Kelner, MJ (1993) Patient control over dying: Responses of health care professionals. Social Science and Medicine 36(6), 757–765. doi:10.1016/0277-9536%2893%2990036-4CrossRefGoogle ScholarPubMed
Kissane, DW, Clarke, DM and Street, AF (2001) Demoralization syndrome: A relevant psychiatric diagnosis for palliative care. Journal of Palliative Care 17(1), 12–21.CrossRefGoogle ScholarPubMed
Kuuppelomäki, M (2000) Attitudes of cancer patients, their family members and health professionals toward active euthanasia. European Journal of Cancer Care 9(1), 16–21. doi:10.1046/j.1365-2354.2000.00184.xCrossRefGoogle ScholarPubMed
Lavery, JV, Boyle, J, Dickens, BM, et al. (2001) Origins of the desire for euthanasia and assisted suicide in people with HIV-1 or AIDS: A qualitative study. Lancet 358(9279), 362–367.CrossRefGoogle ScholarPubMed
Lavoie, M, Blondeau, D and Picard-Morin, J (2011) The autonomy experience of patients in palliative care. Journal of Hospice and Palliative Nursing 13(1), 47–53. doi:10.1097/NJH.0b013e318202425cCrossRefGoogle Scholar
Mak, YYW and Elwyn, G (2005) Voices of the terminally ill: Uncovering the meaning of desire for euthanasia. Palliative Medicine 19(1), 343–350.CrossRefGoogle ScholarPubMed
McCormick, TR and Conley, BJ (1995) Patients’ perspectives on dying and on the care of dying patients. The Western Journal of Medicine 163(3), 236–243.Google ScholarPubMed
Moher, D, Liberati, A, Tetzlaff, J, et al. (2009) Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Medicine 6(7), e1000097. doi:10.1371/journal.pmed.1000097CrossRefGoogle ScholarPubMed
Monforte-Royo, C, Villavicencio-Chávez, C, Tomás-Sábado, J, et al. (2011) The wish to hasten death: A review of clinical studies. Psycho-Oncology 20(8), 795–804. doi:10.1002/pon.1839CrossRefGoogle ScholarPubMed
Monforte-Royo, C, Villavicencio-Chávez, C, Tomás-Sábado, J, et al. (2012) What lies behind the wish to hasten death? A systematic review and meta-ethnography from the perspective of patients. PLoS One 7(5), e37117. doi:10.1371/journal.pone.0037117CrossRefGoogle Scholar
Monforte-Royo, C, Crespo, I, Rodríguez-Prat, A, et al. (2018) The role of perceived dignity and control in the wish to hasten death among advanced cancer patients: A mediation model. Psycho-Oncology 27(12), 2840–2846. doi:10.1002/pon.4900CrossRefGoogle ScholarPubMed
Muller, MT, Van der Wal, G, Van Eijk, JTM, et al. (1994) Voluntary active euthanasia and physician-assisted suicide in Dutch nursing homes: Are the requirements for prudent practice properly met? Journal of the American Geriatrics Society 42(6), 624–629. doi:10.1111/j.1532-5415.1994.tb06861.xCrossRefGoogle ScholarPubMed
Nilmanat, K, Promnoi, C, Phungrassami, T, et al. (2015) Moving beyond suffering: The experiences of Thai persons with advanced cancer. Cancer Nursing 38(3), 224–231. doi:10.1097/NCC.0000000000000169CrossRefGoogle ScholarPubMed
Nissim, R, Gagliese, L and Rodin, G (2009) The desire for hastened death in individuals with advanced cancer: A longitudinal qualitative study. Social Science and Medicine 69(2), 165–171. doi:10.1016/j.socscimed.2009.04.021CrossRefGoogle ScholarPubMed
Ohnsorge, K, Gudat, H and Rehmann-Sutter, C (2014a) What a wish to die can mean: Reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care. BMC Palliative Care 13(38). doi:10.1186/1472-684X-13-38CrossRefGoogle Scholar
Ohnsorge, K, Gudat, H and Rehmann-Sutter, C (2014b) Intentions in wishes to die: Analysis and a typology — A report of 30 qualitative case studies of terminally ill cancer patients in palliative care. Psycho-Oncology 23(9), 1021–1026. doi:10.1002/ponCrossRefGoogle Scholar
Ohnsorge, K, Rehmann-Sutter, C, Streeck, N, et al. (2019) Wishes to die at the end of life and subjective experience of four different typical dying trajectories. A qualitative interview study. PLoS One 14(1), e0210784. doi:10.1371/journal.pone.0210784CrossRefGoogle Scholar
Owen, C, Tennant, C, Levi, J, et al. (1992) Suicide and euthanasia: Patient attitudes in the context of cancer. Psycho-Oncology 1(2), 79–88. doi:10.1002/pon.2960010205CrossRefGoogle Scholar
Owen, C, Tennant, C, Levi, J, et al. (1994) Cancer patients’ attitudes to final events in life: Wish for death, attitudes to cessation of treatment, suicide and euthanasia. Psycho-Oncology 3(1), 1–9. doi:10.1002/pon.2960030103CrossRefGoogle Scholar
Pearlman, RA, Hsu, C, Starks, H, et al. (2005) Motivations for physician-assisted suicide. Journal of General Internal Medicine 20(3), 234–239. doi:10.1111/j.1525-1497.2005.40225.xCrossRefGoogle ScholarPubMed
Pennec, S, Monnier, A, Pontone, S, et al. (2012) End-of-life medical decisions in France: A death certificate follow-up survey 5 years after the 2005 act of parliament on patients’ rights and end of life. BMC Palliative Care 11, 25. doi:10.1186/1472-684x-11-25CrossRefGoogle ScholarPubMed
Peretti-Watel, P, Bendiane, MK, Pegliasco, H, et al. (2003) Doctor's opinions on euthanasia, end of life care, and doctor-patient communication: Telephone survey in France. BMJ 327(7415), 595–596. doi:10.1136/bmj.327.7415.595CrossRefGoogle Scholar
Pestinger, M, Stiel, S, Elsner, F, et al. (2015) The desire to hasten death: Using grounded theory for a better understanding “When perception of time tends to be a slippery slope.” Palliative Medicine 29(8), 711–719. doi:10.1177/0269216315577748CrossRefGoogle Scholar
Public Health Division (2020). Oregon's Death with Dignity Act. Retrieved April 26, 2021 from https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year23.pdf.Google Scholar
Quill, TE and Battin, MP (2004) Physician-Assisted Dying: The Case for Palliative Care and Patient Choice. Baltimore: The Johns Hopkins University Press.Google Scholar
Robijn, L, Cohen, J, Rietjens, J, et al. (2016) Trends in continuous deep sedation until death between 2007 and 2013: A repeated nationwide survey. PLoS One 11(6), e0158188. doi:10.1371/journal.pone.0158188CrossRefGoogle ScholarPubMed
Robinson, S, Kissane, DW, Brooker, J, et al. (2017) The relationship between poor quality of life and desire to hasten death: A multiple mediation model examining the contributions of depression, demoralization, loss of control, and low self-worth. Journal of Pain and Symptom Management 53(2), 243–249.CrossRefGoogle ScholarPubMed
Rodríguez-Prat, A and van Leeuwen, E (2017) Assumptions and moral understanding of the wish to hasten death: A philosophical review of qualitative studies. Medicine, Health Care and Philosophy 21(1), 63–75. doi:10.1007/s11019-017-9785-yCrossRefGoogle Scholar
Rodríguez-Prat, A, Monforte-Royo, C, Porta-Sales, J, et al. (2016) Patient perspectives of dignity, autonomy and control at the end of life: Systematic review and meta-ethnography. PLoS One 11(3), e0151435. doi:10.1371/journal.pone.0151435CrossRefGoogle Scholar
Rodríguez-Prat, A, Balaguer, A, Booth, A, et al. (2017) Understanding patients’ experiences of the wish to hasten death: An updated and expanded systematic review and meta-ethnography. BMJ Open 7(9), 16659. doi:10.1136/bmjopen-2017-016659CrossRefGoogle ScholarPubMed
Sandelowski, M, Barroso, J and Voils, CI (2007) Using qualitative metasummary to synthesize qualitative and quantitative descriptive findings. Research in Nursing & Health 30(1), 99–111.CrossRefGoogle ScholarPubMed
Schwarzer, R (1992) Self-Efficacy: Thought Control of Action. Washington, DC: Hemisphere.Google Scholar
Seale, C (2009) Hastening death in end-of-life care: A survey of doctors. Social Science and Medicine 69(11), 1659–1666. doi:10.1016/j.socscimed.2009.09.025CrossRefGoogle ScholarPubMed
Tolle, SW, Tilden, VR, Drach, LL, et al. (2004) Characteristics and proportion of dying oregonians who personally consider physician-assisted suicide. The Journal of Clinical Ethics 15(2), 111–118.Google ScholarPubMed
Trankle, SA (2014) Decisions that hasten death: Double effect and the experiences of physicians in Australia. BMC Medical Ethics 15(26). doi:10.1186/1472-6939-15-26CrossRefGoogle ScholarPubMed
Van Brussel, L (2014) Autonomy and dignity: A discussion on contingency and dominance. Health Care Analysis 22(2), 174–191. doi:10.1007/s10728-012-0217-0Google ScholarPubMed
van Wijngaarden, E, Leget, C and Goossensen, A (2016) Disconnectedness from the here-and-now: A phenomenological perspective as a counteract on the medicalisation of death wishes in elderly people. Medicine, Health Care and Philosophy 19(2), 265–273. doi:10.1007/s11019-016-9687-4CrossRefGoogle ScholarPubMed
van Wijngaarden, E, Goossensen, A and Leget, C (2018) The social–political challenges behind the wish to die in older people who consider their lives to be completed and no longer worth living. Journal of European Social Policy 28(4), 419–429. doi:10.1177/0958928717735064CrossRefGoogle ScholarPubMed
Volker, DL, Kahn, D and Penticuff, JH (2004) Patient control and end-of-life care part II: The patient perspective. Oncology Nursing Forum 31(5), 954–960.CrossRefGoogle Scholar
von Elm, E, Altman, DG, Egger, M, et al. (2014) The strengthening the reporting of observational studies in epidemiology (STROBE) statement: Guidelines for reporting observational studies. International Journal of Surgery. doi:10.1016/j.ijsu.2014.07.013CrossRefGoogle ScholarPubMed
Walker, MU (2007) Moral Understandings: A Feminist Study in Ethics, 2nd ed. New York: Oxford University Press.Google Scholar
Weinberger, LE, Sreenivasan, S and Garrick, T (2014) End-of-life mental health assessments for older aged, medically ill persons with expressed desire to die. The Journal of the American Academy of Psychiatry and the Law 42(3), 350–361.Google ScholarPubMed
Whittemore, R and Knafl, K (2005) The integrative review: Updated methodology. Journal of Advanced Nursing 52(5), 546–543. doi:10.1111/j.1365-2648.2005.03621.xCrossRefGoogle ScholarPubMed
Wilson, KG, Chochinov, HM, McPherson, CJ, et al. (2007) Desire for euthanasia or physician-assisted suicide in palliative cancer care. Health Psychology 26(3), 314–323. doi:10.1037/0278-6133.26.3.314CrossRefGoogle ScholarPubMed
Wolf, SM (2005) Assessing physician compliance with the rules for euthanasia and assisted suicide. Archives of Internal Medicine 165(15), 1677–1679. doi:10.1001/archinte.165.15.1677CrossRefGoogle ScholarPubMed
Supplementary material: File

Rodríguez-Prat et al. supplementary material

Rodríguez-Prat et al. supplementary material

Download Rodríguez-Prat et al. supplementary material(File)
File 295.9 KB