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. 2018 Feb 22;19(1):10.
doi: 10.1186/s12910-018-0247-8.

Moral dilemmas and conflicts concerning patients in a vegetative state/unresponsive wakefulness syndrome: shared or non-shared decision making? A qualitative study of the professional perspective in two moral case deliberations

Conny A M F H Span-Sluyter  1   2 , Jan C M Lavrijsen  3 , Evert van Leeuwen  4 , Raymond T C M Koopmans  3   5
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Moral dilemmas and conflicts concerning patients in a vegetative state/unresponsive wakefulness syndrome: shared or non-shared decision making? A qualitative study of the professional perspective in two moral case deliberations

Conny A M F H Span-Sluyter et al. BMC Med Ethics. .

Abstract

Background: Patients in a vegetative state/ unresponsive wakefulness syndrome (VS/UWS) pose ethical dilemmas to those involved. Many conflicts occur between professionals and families of these patients. In the Netherlands physicians are supposed to withdraw life sustaining treatment once recovery is not to be expected. Yet these patients have shown to survive sometimes for decades. The role of the families is thought to be important. The aim of this study was to make an inventory of the professional perspective on conflicts in long-term care of patients in VS/UWS.

Methods: A qualitative study of transcripts on 2 Moral Deliberations (MD's) in 2 cases of patients in VS/UWS in long-term care facilities.

Results: Six themes emerged: 1) Vision on VS/UWS; 2) Treatment and care plan; 3) Impact on relationships; 4) Feelings/attitude; 5) Communication; 6) Organizational aspects. These themes are related to professionals and to what families had expressed to the professionals. We found conflicts as well as contradictory feelings and thoughts to be a general feature in 4 of these themes, both in professionals and families. Conflicts were found in several actors: within families concerning all 6 themes, in nurse teams concerning the theme treatment and care plan, and between physicians concerning all 6 themes.

Conclusions: Different visions, different expectations and hope on recovery, deviating goals and contradictory feelings/thoughts in families and professionals can lead to conflicts over a patient with VS/UWS. Key factors to prevent or solve such conflicts are a carefully established diagnosis, clarity upon visions, uniformity in treatment goals and plans, an open and empathic communication, expertise and understanding the importance of contradictory feelings/thoughts. Management should bridge conflicts and support their staff, by developing expertise, by creating stability and by facilitating medical ethical discourses. Shared compassion for the patient might be a key to gain trust and bridge the differences from non-shared to shared decision making.

Keywords: Conflict; Ethics; Family; Moral case deliberation; Shared decision making; Vegetative state/ unresponsive wakefulness syndrome.

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Conflict of interest statement

Authors’ information

The first author Conny Span-Sluyter works as an ECP with patients in VS/UWS. She is a PhD student on medical ethical dilemmas in DOC patients and the role of the family, especially in the decision making process. As a medical ethicist she also chairs MD's.

The second author Jan Lavrijsen did his thesis on the prevalence and characteristics of patients in a vegetative state in Dutch nursing homes. He founded a research group "niemand tussen de wal en het schip"on the medical and ethical problems of patients with severe acquired brain injury and disorders of consciousness.

The third author, Evert van Leeuwen is a professor in ethics and philosophy.

The fourth author Raymond Koopmans is a professor in Elderly Care Medicine, especially long-term care.

Ethics approval and consent to participate

Statement on ethics approval:

The study was judged by the accredited regional medical research ethics committee WMO regio Arnhem-Nijmegen no 2015–1636. According to the Dutch Medical Research Involving Human Subjects Act (1998), the study did not meet criteria for medical scientific interventional research. Therefore no additional ethical evaluation was needed.

Statement on ethics approval and consent:

The committee also stated that since maximal anonymity was secured, consent of the family or the participants of the MD was not required. A consulted independent ethicist confirmed that no formal consent of the families was needed since the families did not participate in the study and anonymity was optimalized. Anonymity was secured by anonymisation of several aspects like the patient’s names, time after incident, age, family relationships and other potentially identifying information, as suggested by Saunders et al. [29].

Consent for publication

The committee also stated that since maximal anonymity was secured, consent of the family or the participants of the MD was not required. An independent ethicist confirmed that no formal consent of the families was needed since the families did not participate in the study and anonymity was optimalized. Anonymity was secured by anonymisation of several aspects like the patient’s names, time after incident, age, family relationships and other potentially identifying information, as suggested by Saunders et al. [29].

Competing interests

The authors declare that they have no competing interests.

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References

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