Perspectives of decision-making in requests for euthanasia: A qualitative research among patients,relatives and treating physicians in the Netherlands

Abstract

Background:

Euthanasia has been legally performed in the Netherlands since 2002. Respect for patient’s autonomy is the underpinning ethical principal. However, patients have no right to euthanasia, and physicians have no obligation to provide it. Although over 3000 cases are conducted per year in the Netherlands, there is little known about how decision-making occurs and no guidance to support this difficult aspect of clinical practice.

Aim:

To explore the decision-making process in cases where patients request euthanasia and understand the different themes relevant to optimise this decision-making process.

Design:

A qualitative thematic analysis of interviews with patients making explicit requests for euthanasia, most-involved relative(s) and treating physician.

Participants/setting:

Thirty-two cases, 31 relatives and 28 treating physicians. Settings were patients’ and relatives’ homes and physicians’ offices.

Results:

Five main themes emerged: (1) initiation of sharing views and values about euthanasia, (2) building relationships as part of the negotiation, (3) fulfilling legal requirements, (4) detailed work of preparing and performing euthanasia and (5) aftercare and closing.

Conclusions:

A patient’s request for euthanasia entails a complex process that demands emotional work by all participants. It is characterised by an intensive period of sharing information, relationship building and negotiation in order to reach agreement. We hypothesise that making decisions about euthanasia demands a proactive approach towards participants’ preferences and values regarding end of life, towards the needs of relatives, towards the burden placed on physicians and a careful attention to shared decision-making. Future research should address the communicational skills professionals require for such complex decision-making.

Keywords

Decision-making shared qualitative research euthanasia end-of-life care advanced health care planning physician-patient relation

Get full access to this article

View all access options for this article.

References

Euthanasia, the Netherlands new rules. Documentation | 8 April 2002, http://english.minvws.nl/en/folders/ibe/euthanasia_the_netherlands_new_rules.asp (accessed November 2011).

Regional euthanasia review committees. Annual report 2010. http://www.euthanasiecommissie.nl/overdetoetsingscommissies/jaarverslag/ (accessed November 2011).

De Haan

. The new Dutch law on euthanasia. Med Law Rev 2002; 10: 57–75.

Abramson

. A dying patient: the question of euthanasia. Int J Psychiatry Med 1975; 6: 431–454.

Van der Arend

. An ethical perspective on euthanasia and assisted suicide in the Netherlands from a nursing point of view. Nurs Ethics 1998; 5: 307–318.

Borgsteede

Deliens

Graafland-Riedstra

. Communication about euthanasia in general practice: opinions and experiences of patients and their general practitioners. Patient Educ Couns 2007; 66: 156–161.

Von Gunten

Ferris

Emanuel

. The patient-physician relationship. Ensuring competency in end-of-life care: communication and relational skills. JAMA 2000; 284(23): 3051–3057.

Balint

. Decisions at the end of life. Croat Med J 2000; 41: 144–149.

Carlson

Simopolous

Goy

. Oregon hospice chaplains’ experiences with patients requesting physician-assisted suicide. J Palliat Med 2005; 8: 1160–1166.

10.

Buiting

Gevers

Rietjens

. Dutch criteria of due care for physician-assisted dying in medical practice: a physician perspective. J Med Ethics 2008; 34: e12.

11.

Jansen-Van der Weide

Onwuteaka-Philipsen

Van der Wal

. Granted, undecided, withdrawn, and refused requests for euthanasia and physician-assisted suicide. Arch Intern Med 2005; 165: 1698–1704.

12.

Onwuteaka-Philipsen

Jansen-Van der Weide

Van der Wal

. [Granted, undecided, withdrawn and refused requests for euthanasia and physician-assisted suicide in the Netherlands; 2000–2002]. Ned Tijdschr Geneeskd 2006; 150(5): 249–254.

13.

Georges

The

Onwuteaka-Philipsen

. Dealing with requests for euthanasia: a qualitative study investigating the experience of general practitioners. J Med Ethics 2008; 34(3): 150–155.

14.

De Scheur

Van der Arend

Spreeuwenberg

. Euthanasia and physician-assisted suicide in the Dutch homecare sector: the role of the district nurse. J Adv Nurs 2007; 58(1): 44–52.

15.

De Scheur

Van der Arend

bu-Saad

. The role of nurses in euthanasia and physician-assisted suicide in The Netherlands. J Med Ethics 2008; 34(4): 254–258.

16.

Jansen-Van der Weide

Onwuteaka-Philipsen

Van der Wal

. Requests for euthanasia and physician-assisted suicide and the availability and application of palliative options. Palliat Support Care 2006; 4(4): 399–406.

17.

Elwyn

Frosch

Thomson

. Shared decision-making: a model for clinical practice. J Gen Intern Med. 2012; 27:1361–1367.

18.

O’Riordan

Dahinden

Aktürk

. Dealing with uncertainty in general practice: an essential skill for the general practitioner. Qual Prim Care 2011; 19(3): 175–181.

19.

Entwistle

Caerter

Cribb

. Supporting patient autonomy: the importance of clinician-patient relationships. J Gen Intern Med 2010; 25(7): 741–745.

20.

Légaré

Ratté

Gravel

. Barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals’ perceptions. Patient Educ Couns 2008; 73(4): 526–535.

21.

Elwyn

Edwards

Kinnersley

. Shared decision-making in primary care: the neglected second half of the consultation. Br J Gen Pract 1999; 49(443): 477–482.

22.

Charles

Gafni

Whelan

. Shared decision-making in the medical encounter: what does it mean? (Or it takes at least two to tango.) Soc Sci Med 1997; 44(5): 681–692.

23.

Elwyn

Laitner

Coulter

. Implementing shared decision making in the NHS. BMJ 2010; 341: c5146.

24.

Schön

(ed.). The reflective practitioner: how professionals think in action. London: Temple Smith, 1983.

25.

Staatscommissie Euthanasie. Rapport inzake euthanasie [Report concerning euthanasia, in Dutch.]. Den Haag: Staatsdrukkerij en uitgeverij, 1985.

26.

Britten

. Qualitative interviews in medical research. BMJ 1995; 311(6999): 251–253.

27.

Pasman

Rurup

Willems

. Concept of unbearable suffering context of ungranted requests for euthanasia: qualitative interviews with patients and physicians. BMJ 2009; 339: b4362.

28.

Kendall

Murray

Carduff

. Use of multiperspective qualitative interviews to understand patients’ and carers’ beliefs, experiences, and needs. BMJ 2009; 339: b4122.

29.

Murray

Kendall

Carduff

. Use of serial qualitative interviews to understand patients’ evolving experiences and needs. BMJ 2009; 339: b3702.

30.

Pope

Mays

. Reaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research. BMJ 1995; 311(6996): 42–45.

31.

Spencer

Ritchie

O’Connor

. Analysis: practices, principles, processes. In: Ritchie

Lewis

(eds) Qualitative research practice: a guide for social science students and researchers. London: Sage, 2007.

32.

Kondracki

Wellman

Amundson

. Content analysis: review of methods and their applications in nutrition education. J Nutr Educ Behav 2007; 34: 224–230.

33.

Mayring

. Qualitative content analysis. Forum qualitative sozialforschung/forum: qualitative social research, ed. 1 June 2000. http://www.qualitative-research.net/index.php/fqs/article/viewArticle/1089/2385 (accessed September 2012).

34.

Rurup

Onwuteaka-Philipsen

Jansen-Van der Weide

. When being ‘tired of living’ plays an important role in a request for euthanasia or physician-assisted suicide: patient characteristics and the physician’s decision. Health Policy 2005; 74: 157–166.

35.

Levene

Parker

. Prevalence of depression in granted and refused requests for euthanasia and assisted suicide: a systematic review. J Med Ethics 2011; 37: 205–211.

36.

Kimsma

. Death by request in the Netherlands: facts, the legal context and effects on physicians, patients and families. Med Health Care Philos 2010; 13: 355–361.

37.

Van Marwijk

Haverkate

Van Royen

. Impact of euthanasia on primary care physicians in the Netherlands. Palliat Med 2007; 21: 609–414.

38.

Rapley

. Distributed decision making: the anatomy of decisions-in-action. Sociol Health Illn 2008; 30: 429–444.

39.

Norwood

Kimsma

Battin

. Vulnerability and the ‘slippery slope’ at the end-of-life: a qualitative study of euthanasia, general practice and home death in the Netherlands. Fam Pract 2009; 26: 472–840.

40.

Belanger

Rodriguez

Groleau

. Shared decision-making in palliative care: a systematic mixed studies review using narrative synthesis. Palliat Med 2011; 25: 242–261.

41.

Back

Starks

Hsu

. Clinician-patient interactions about requests for physician-assisted suicide: a patient and family view. Arch Intern Med 2002; 162: 1257–1265.

42.

Swarte

Van der Lee

Van der Bom

. Effects of euthanasia on the bereaved family and friends: a cross sectional study. BMJ 2003; 327(7408): 189–194.