Moral dilemmas and conflicts related to patients in a vegetative state/non-responsive waking syndrome: shared or non-shared decision-making? A qualitative study of the professional perspective in two moral case deliberations
Span-Sluyter, C.A.M.F.H., Lavrijsen, J.C.M., van Leeuwen, E., & Koopmans, R.T.C.M.
22 February 2018Abstract
Background
Patients in a vegetative state/unresponsive vigilance syndrome (VS/UWS) pose ethical dilemmas for those involved. There are many conflicts between professionals and families of these patients. In the Netherlands, doctors are supposed to withdraw life-prolonging treatment as soon as recovery is not to be expected. Yet these patients have shown that they sometimes survive for decades. The role of families is considered important. The aim of this study was to identify the professional perspective on conflicts in the long-term care of patients in VS/UWS.
Methods
A qualitative study of transcripts of 2 moral deliberations (MDs) in 2 cases of patients in VS/UWS in long-term care facilities.
Results
Six themes emerged: 1) Vision on US/UWS; 2) Treatment and care plan; 3) Impact on relationships; 4) Feelings/attitude; 5) Communication; 6) Organizational aspects. These themes have to do with professionals and with what families have told the professionals. We found conflicts and conflicting feelings and thoughts to be a common feature in 4 of these themes, both among professionals and families. Conflicts were found among different actors: within families on all 6 themes, in nursing teams on the theme of treatment and care plan, and between doctors on all 6 themes.
Conclusions
Different visions, different expectations and hopes for recovery, different goals and conflicting feelings/thoughts in families and professionals can lead to conflicts about a patient with VS/UWS. Key factors to prevent or resolve such conflicts are a carefully made diagnosis, clarity about visions, uniformity in treatment goals and plans, open and empathetic communication, expertise and understanding of the importance of conflicting feelings/thoughts. Management must bridge conflicts and support its staff by developing expertise, by creating stability and by facilitating medical-ethical discourses. Shared compassion with the patient can be a key to gaining trust and bridging the differences from non-shared to shared decision-making.
Keywords
Vegetative state/unresponsive waking syndrome, Conflict, Ethics, Family, Moral case consultation, Shared decision-making