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

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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.

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Most cited references 45

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Unresponsive wakefulness syndrome: a new name for the vegetative state or apallic syndrome

Steven Laureys, Gastone G Celesia, Francois Cohadon … (2010)

Background Some patients awaken from coma (that is, open the eyes) but remain unresponsive (that is, only showing reflex movements without response to command). This syndrome has been coined vegetative state. We here present a new name for this challenging neurological condition: unresponsive wakefulness syndrome (abbreviated UWS). Discussion Many clinicians feel uncomfortable when referring to patients as vegetative. Indeed, to most of the lay public and media vegetative state has a pejorative connotation and seems inappropriately to refer to these patients as being vegetable-like. Some political and religious groups have hence felt the need to emphasize these vulnerable patients' rights as human beings. Moreover, since its first description over 35 years ago, an increasing number of functional neuroimaging and cognitive evoked potential studies have shown that physicians should be cautious to make strong claims about awareness in some patients without behavioral responses to command. Given these concerns regarding the negative associations intrinsic to the term vegetative state as well as the diagnostic errors and their potential effect on the treatment and care for these patients (who sometimes never recover behavioral signs of consciousness but often recover to what was recently coined a minimally conscious state) we here propose to replace the name. Conclusion Since after 35 years the medical community has been unsuccessful in changing the pejorative image associated with the words vegetative state, we think it would be better to change the term itself. We here offer physicians the possibility to refer to this condition as unresponsive wakefulness syndrome or UWS. As this neutral descriptive term indicates, it refers to patients showing a number of clinical signs (hence syndrome) of unresponsiveness (that is, without response to commands) in the presence of wakefulness (that is, eye opening).

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Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment

Caroline Schnakers, Audrey Vanhaudenhuyse, Joseph Giacino … (2009)

Background Previously published studies have reported that up to 43% of patients with disorders of consciousness are erroneously assigned a diagnosis of vegetative state (VS). However, no recent studies have investigated the accuracy of this grave clinical diagnosis. In this study, we compared consensus-based diagnoses of VS and MCS to those based on a well-established standardized neurobehavioral rating scale, the JFK Coma Recovery Scale-Revised (CRS-R). Methods We prospectively followed 103 patients (55 ± 19 years) with mixed etiologies and compared the clinical consensus diagnosis provided by the physician on the basis of the medical staff's daily observations to diagnoses derived from CRS-R assessments performed by research staff. All patients were assigned a diagnosis of 'VS', 'MCS' or 'uncertain diagnosis.' Results Of the 44 patients diagnosed with VS based on the clinical consensus of the medical team, 18 (41%) were found to be in MCS following standardized assessment with the CRS-R. In the 41 patients with a consensus diagnosis of MCS, 4 (10%) had emerged from MCS, according to the CRS-R. We also found that the majority of patients assigned an uncertain diagnosis by clinical consensus (89%) were in MCS based on CRS-R findings. Conclusion Despite the importance of diagnostic accuracy, the rate of misdiagnosis of VS has not substantially changed in the past 15 years. Standardized neurobehavioral assessment is a more sensitive means of establishing differential diagnosis in patients with disorders of consciousness when compared to diagnoses determined by clinical consensus.

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Medical aspects of the persistent vegetative state (1). The Multi-Society Task Force on PVS.

H Eisenberg, D. Coulter, C Watts … (1994)

This consensus statement of the Multi-Society Task Force summarizes current knowledge of the medical aspects of the persistent vegetative state in adults and children. The vegetative state is a clinical condition of complete unawareness of the self and the environment, accompanied by sleep-wake cycles, with either complete or partial preservation of hypothalamic and brain-stem autonomic functions. In addition, patients in a vegetative state show no evidence of sustained, reproducible, purposeful, or voluntary behavioral responses to visual, auditory, tactile, or noxious stimuli; show no evidence of language comprehension or expression; have bowel and bladder incontinence; and have variably preserved cranial-nerve and spinal reflexes. We define persistent vegetative state as a vegetative state present one month after acute traumatic or nontraumatic brain injury or lasting for at least one month in patients with degenerative or metabolic disorders or developmental malformations. The clinical course and outcome of a persistent vegetative state depend on its cause. Three categories of disorder can cause such a state: acute traumatic and non-traumatic brain injuries; degenerative and metabolic brain disorders, and severe congenital malformations of the nervous system. Recovery of consciousness from a posttraumatic persistent vegetative state is unlikely after 12 months in adults and children. Recovery from a nontraumatic persistent vegetative state after three months is exceedingly rare in both adults and children. Patients with degenerative or metabolic disorders or congenital malformations who remain in a persistent vegetative state for several months are unlikely to recover consciousness. The life span of adults and children in such a state is substantially reduced. For most such patients, life expectancy ranges from 2 to 5 years; survival beyond 10 years is unusual.

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Author and article information

Contributors

Conny A. M. F. H. Span-Sluyter:

ORCID: http://orcid.org/0000-0002-4964-6852

Conny.Span-Sluyter@radboudumc.nl

Jan C. M. Lavrijsen: Jan.Lavrijsen@radboudumc.nl

Evert van Leeuwen: Evert.vanleeuwen@radboudumc.nl

Raymond T. C. M. Koopmans: Raymond.Koopmans@radboudumc.nl

Journal

Journal ID (nlm-ta): BMC Med Ethics

Journal ID (iso-abbrev): BMC Med Ethics

Title: BMC Medical Ethics

Publisher: BioMed Central (London )

ISSN (Electronic): 1472-6939

Publication date (Electronic): 22 February 2018

Publication date PMC-release: 22 February 2018

Publication date Collection: 2018

Volume: 19

Electronic Location Identifier: 10

Affiliations

[1 ]ISNI 0000 0004 0444 9382, GRID grid.10417.33, Radboud University Medical Centre, department of primary care, ; Nijmegen, The Netherlands

[2 ]Novicare, Professionals in Elderly Care, Best, the Netherlands

[3 ]ISNI 0000 0004 0444 9382, GRID grid.10417.33, Radboud University Medical Centre, ; Nijmegen, The Netherlands

[4 ]Joachim en Anna, Centre for Specialized Geriatric Care, Nijmegen, The Netherlands

Author information

Conny A. M. F. H. Span-Sluyter http://orcid.org/0000-0002-4964-6852

Article

Publisher ID: 247

DOI: 10.1186/s12910-018-0247-8

PMC ID: 5824545

PubMed ID: 29471814

SO-VID: 6f69a7c9-3e96-4aff-98ab-8112194883c5

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

History

Date received : 6 September 2017

Date accepted : 29 January 2018

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ScienceOpen disciplines: Medicine

Keywords: vegetative state/ unresponsive wakefulness syndrome,conflict,ethics,family,moral case deliberation,shared decision making

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ScienceOpen disciplines: Medicine

Keywords: vegetative state/ unresponsive wakefulness syndrome, conflict, ethics, family, moral case deliberation, shared decision making

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

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Most cited references 45

Unresponsive wakefulness syndrome: a new name for the vegetative state or apallic syndrome

Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment

Medical aspects of the persistent vegetative state (1). The Multi-Society Task Force on PVS.

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