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

Abstract

BackgroundPatients 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.MethodsA qualitative study of transcripts on 2 Moral Deliberations (MD’s) in 2 cases of patients in VS/UWS in long-term care facilities.ResultsSix 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.ConclusionsDifferent 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.

Intensive neurorehabilitation for patients with prolonged disorders of consciousness: protocol of a mixed-methods study focusing on outcomes, ethics and impact

“…Sixth, treatment decisions in PDOC, especially in the absence of advance directives, are challenging [5,27]. These decisions frequently involve complex moral dilemmas and may sometimes even result in conflicts between family members and healthcare professionals [28][29][30]. End-of-life decisions (EOLD) are inevitable in the course of PDOC care.…”

Unresponsive wakefulness syndrome: Outcomes from a vicious circle

“…Dutch elderly care medicine has a tradition of research whose topics include VS/UWS. Specifically, decision‐making and end‐of‐life scenarios in VS/UWS have been studied retrospectively and in case reports since the 1990s …”

“…The Netherlands have the lowest VS/UWS prevalence documented worldwide . Nonetheless, prolonged and extremely prolonged VS/UWS, even beyond 25 years after the causative injury, occurs as well, often associated with conflicts between relatives and medical staff about life‐prolonging medical treatment …”

“…Specifically, decision-making and end-of-life scenarios in VS/UWS have been studied retrospectively and in case reports since the 1990s. [27][28][29][30][31] The Netherlands have the lowest VS/UWS prevalence documented worldwide. 5,32 Nonetheless, prolonged and extremely prolonged VS/UWS, even beyond 25 years after the causative injury, occurs as well, often associated with conflicts between relatives and medical staff about life-prolonging medical treatment.…”

“…5,32 Nonetheless, prolonged and extremely prolonged VS/UWS, even beyond 25 years after the causative injury, occurs as well, often associated with conflicts between relatives and medical staff about life-prolonging medical treatment. [29][30][31][32] A nationwide dynamic cohort study, carried out between 2012 and 2018, allows us to present the outcomes of VS/UWS patients in this particular context. Extensive descriptions of the study methods and results are available as Supplementary Material at https://ukonnetwerk.nl/ outcomes_from_a_vicious_circle_supplements.…”