Open Access Open Access  Restricted Access Subscription Access

The Role of the Patient’s Family, Surrogate and Guardian at the End of Life

Raphael Cohen-Almagor

Abstract


The aim of this paper is to explore the intricate issue of the right to die in dignity by focusing on the role of the patient’s family. The paper considers a number of real-life cases. The cases demonstrate the importance of caution in incidents when the best interests of the patient’s family members contradict the best interests of the patient. There is some resemblance between two American cases: Spring and Wendland. But while in Spring the family was unified in its opinion to stop the patient’s treatment, in Wendland family members expressed contrasting opinions. Two English cases - In Re N and In Re 62-year-old Woman and a Dutch case concerning Mrs A, highlight the important role of the incompetent patient’s family when members of family are unified in their opinions. These cases lead to conclude, contra Dworkin, that advance directives should be treated with great caution.

Keywords


Advance directive, autonomy, care, clinical judgement, compassion, dignity, end-of-life, euthanasia, guardian, intellectual competence, patient’s best interests, patient’s family, person-centered healthcare, shared decision-making

Full Text:

PDF

References


The President’s Commission for the Study of Ethical Problems and Biomedical and Behavioral Research. (1983). Deciding to Forego Life-Sustaining Treatment, p. 28. Available at: https://repository.library.georgetown.edu/bitstream/handle/10822/559344/deciding_to_forego_tx.pdf?sequence=1

Rawls, J. (1973). A Theory of Justice, p.209. Oxford: Oxford University Press.

In the Matter of Spring, Mass. App. 399 N.E.2d 493 (1979). Available at: https://www.courtlistener.com/opinion/2123413/in-the-matter-of-spring/?

Wendland v. Wendland,26 Cal. 4th 519, 28 P.3d 151 (2001). Available at: https://www.courtlistener.com/opinion/2525487/conservatorship-of-wendland/

Visser, M., Deliens, L. & Houttekier, D. (2014). Physician-related Barriers to Communication and Patient- and Family-centred Decision-making towards the End of Life in Intensive Care: a systematic review. Critical Care 18 (6) 604.

Re N. (2015). EWCOP 76. Available at: https://www.familylawweek.co.uk/site.aspx?i=ed151582.

Mitchell, I. (2015). Court approves withdrawal of treatment in landmark end-of-life case. Family Law (20 November 2015). Available at: http://www.familylaw.co.uk/news_and_comment/court-approves-withdrawal-of-treatment-in-landmark-end-of-life-case#.Vr4I2liLS70

Aintree University Hospitals NHS Foundation Trust v James and others [2013] UKSC 67; [2013] WLR (D) 421 at para 39. Available at: https://www.39essex.com/cop_cases/aintree-university-hospitals-nhs-foundation-trust-respondent-v-james-appellant/

Bonner, S., Tremlet, M. & Bell, D. (2009). Are Advance Directives Legally Binding or Simply the Starting Point for a Discussion on Patients’ Best Interests. British Medical Journal 339, b4667.

Szawarski, P. (2013). Classic Cases Revisited: The suicide of Kerry Wooltorton. Journal of the Intensive Care Society 14 (3) 213-214.

Judgement 2016 - 85 of the Regional Review Committee regarding the notification of termination of life on request by specialist in geriatrics.

Gibbes Miller, D., Dresser, R. & Kim, S.Y.H. (2019). Advance Euthanasia Directives: a controversial case and its ethical implication. Journal of Medical Ethics 45 (2) 84-89.

“Doctor reprimanded for ‘overstepping mark’ during euthanasia on dementia patient”. Dutch News (29 January 2017). Available at: http://www.dutchnews.nl/news/archives/2017/01/doctor-reprimanded-for-overstepping-mark-during-euthanasia-on-dementia-patient/

Rachel Roberts, “Doctor who asked dementia patient's family to hold her down while she gave lethal injection cleared”. The Independent (5 February 2017). Available at: https://www.independent.co.uk/news/world/europe/doctor-netherlands-lethal-injection-dementia-euthanasia-a7564061.html

Nancy Flory, “Dutch Woman With Alzheimers Euthanized - Even After She Changed Her Mind”. Stream (14 February 2017). Available at: https://stream.org/dutch-woman-with-alzheimers-euthanized-even-after-she-changed-her-mind/

Janene Pieters, “Euthanasia controversy: Doctor rebuked for helping uncertain woman die”, NL Times (26 January 2017). Available at: https://nltimes.nl/2017/01/26/euthanasia-controversy-doctor-rebuked-helping-uncertain-woman-die

“Doctor reprimanded for ‘overstepping mark’ during euthanasia on dementia patient”, Dutch News (29 January 2017). Available at: http://www.dutchnews.nl/news/archives/2017/01/doctor-reprimanded-for-overstepping-mark-during-euthanasia-on-dementia-patient/

Simon Caldwell, “Dutch euthanasia regulator quits over dementia killings”. Catholic Herald (23 January 2018). Available at: http://catholicherald.co.uk/news/2018/01/23/dutch-euthanasia-regulator-quits-over-dementia-killings/

Michael Cook, “Struggling woman with dementia euthanised in Netherlands”. BioEdge (4 February 2017). Available at: https://www.bioedge.org/bioethics/struggling-woman-with-dementia-euthanised-in-netherlands/12173

Andrew Gregory, “Euthanasia patient fought back as doctor tried to give her lethal injection”. The Mirror (28 January 2017). Available at: https://www.mirror.co.uk/news/world-news/euthanasia-patient-fought-back-doctor-9707709

John Hardwig, “What About the Family?”, The Hastings Center Report, Vol. 20, No. 2 (March/April 1990): 5-10, and Is There A Duty to Die? (NY: Routledge, 2000).

Richman, J. (1987). Sanctioned Assisting Suicide: Impact on Family Relations. Issues in Law and Medicine 3 (1) 53-63.

Jennings, B. (1992). Last Rights: Dying and the Limits of Self-Sovereignty. In Depth 2 (3) 103-118.

Kushner, T. (Ed.). (2010). Surviving Health Care: A Manual for Patients and Their Families. Cambridge: Cambridge University Press.

Pivodic, L., Van den Block, L., Pardon, K., Miccinesi, G. et al. (2014). Burden on Family Carers and Care-related Financial Strain at the End of Life: a cross-national population-based study. European Journal of Public Health 24 (5) 819-826.

Dierickx, S., Deliens, L., Cohen, J. & Chambaere, K. (2015). Comparison of the Expression and Granting of Requests for Euthanasia in Belgium in 2007 vs 2013. JAMA Internal Medicine 175 (10) 1703-1706.

Cohen-Almagor, R. (2016). First Do No Harm: Euthanasia of Patients with Dementia in Belgium. Journal of Medicine and Philosophy 41 (1) 74-89.

Andrews, K. (1996). Euthanasia in Chronic Severe Disablement. British Medical Bulletin 52 (2) 280-288.

McLean, S.A.M. (2009). Are Advance Directives Legally Binding or Simply the Starting Point for Discussion on Patient’s Best Interests? Ethical View. British Medical Journal 339, b4695.

Mental Capacity Act (2005), Section 26 Effect of advance decisions. Available at: https://www.legislation.gov.uk/ukpga/2005/9/section/26.

Cohen-Almagor, R. (2004). Euthanasia in the Neth-erlands: The Policy and Practice of Mercy Killing. Dordrecht: Springer-Kluwer.

Cohen-Almagor, R. (2008). The Right to Die with Dignity: An Argument in Ethics, Medicine, and Law. Piscataway, NJ: Rutgers University Press.

Dworkin, R. (1993). Life's Dominion. pp. 222-229. New York: Knopf.

Rosen, M. (2012). Dignity: Its History and Meaning. Cambridge, Mass.: Harvard University Press.

Sangiovanni, A. (2017). Humanity without Dignity: Moral Equality, Respect, and Human Rights. Cambridge, Mass.: Harvard University Press.

Harmer, B.J. & Orrell, M. (2008). What Is Meaningful Activity for People with Dementia Living in Care Homes? A comparison of the views of older people with dementia, staff and family carers. Aging & Mental Health 12 (5) 548-558.

Person, M. & Hanssen, I. (2015). Joy, Happiness, and Humor in Dementia Care: a qualitative study. Creative Nursing 21 (1) 47-52.

Parsons, R. (2015). A Caregiver’s Guide: Creating Joy and Meaning for Those with Dementia. Available at: https://www.alzheimers.net/5-15-15-caregivers-guide-joy-and-meaning-for-dementia/

Garrett, M.D. (1013). Happiness and Dementia. Psychology Today Available at: https://www.psychologytoday.com/us/blog/iage/201305/happiness-and-dementia.

Hawkins, J. (2014). Well-Being, Time, and Dementia. Ethics 124 (3) 507-542.

Lo, B. & Steinbrook, R. (2004). Resuscitating Advance Directives. Archives of Internal Medicine 164, 1501-1506.

Fagerlin, A. & Schneider, C.E. (2004). Enough. The Failure of the Living Will. Hastings Center Report 34 (2) 30-42.

End of life directives have little impact. UPI Science News (7 April 1997). Available at: https://www.upi.com/Science_News/.

Levi, B.H. & Green, M.J. (2010) Too Soon to Give Up: re-examining the value of advance Directives. American Journal of Bioethics 10 (4) 3-22.

Robertson, J.A. (1991). Second Thoughts on Living Wills. Hastings Center Report 21 (6) 6-9.

Advance Decisions and proxy Decision-Making in Medical Treatment and Research. BMA. Available at: https://www.bma.org.uk/advice/employment/ethics/mental-capacity/advance-decisions-and-proxy-decision-making-in-medical-treatment-and-research.

Davies, M. (2009). Are advance directives legally binding or simply the starting point for discussion on patients’ best interests? Legal Advice. British Medical Journal 339, b4693.

Mackway-Jones, K. (2009). Are advance directives legally binding or simply the starting point for discussion on patients’ best in¬terests? Medical opinion. British Medical Journal 339, b4697.

Kuehlmeyer, K., Borasio, G.D. & Jox, R.J. (2012). How Family Caregivers' Medical and Moral Assumptions Influence Decision Making for Patients in the Vegetative State: a qualitative interview study. Journal of Medical Ethics 38 (6) 332-337.

Witkamp, E., Droger, M., Janssens, R., van Zuylen, L. & van der Heide, A. (2016). How to Deal With Relatives of Patients Dying in the Hospital? Qualitative Content Analysis of Relatives' Experiences. Journal of Pain and Symptom Management 52 (2) 235-242.

https://www.gov.uk/government/organisations/official-solicitor-and-public-trustee/about

Landmark Case in UK Court Allows Withdrawal of Treatment for Patient in Accordance with Family Wishes. Compassion in Dying Available at: http://compassionindying.org.uk/court-of-protection-withdrawal-treatment-patient-family/

Brudney, D. (2009). Choosing for Another: Beyond Autonomy and Best Interests. Hastings Center Report 39 (2) 31-37.

Tune v. Walter Reed Army Medical Hospital, 602 F. Supp. 1452 D. D.C (1985). Available at: https://law.justia.com/cases/federal/district-courts/FSupp/602/1452/1633283/.

In re Gardner, 534 A.2d 947 (Me. 1987) (Maine). Available at: https://www.courtlistener.com/opinion/1533144/in-re-gardner/.

Elbaum v. Grace Plaza of Great Neck Inc., 148 A.D.2d 244, 544 N.Y.S.2d 840 (1989). Available at: https://www.casemine.com/judgement/us/5914c098add7b049347b4b4d.

Gammon v. Albany Memorial Hospital, N.Y. Sup. Ct. (3 April 1989).

In re Hallahan, NO. 16338/1989, N.Y. Sup. Ct. (28 August 1989).

In re Swan, 569 A.2d 1202 (15 February 1990). Available at: https://law.justia.com/cases/maine/supreme-court/1990/569-a-2d-1202-0.html.

In the Matter of Nickolas Christopher for an Order Authorizing the Involuntary Medical Treatment of Anna Kushnir, 177 Misc.2d 352, 675 N.Y.S.2d 807 (21 May 1998). Available at: https://www.leagle.com/decision/1998529177misc2d3521467.

Hardwig, J. (2005). Families and Futility: Forestalling Demands for Futile Treatment. Journal of Clinical Ethics 16 (4) 328-337.




DOI: http://dx.doi.org/10.5750/ejpch.v7i3.1739

Refbacks

  • There are currently no refbacks.