In response to Dr. Sethi's query about the care of patients with disorders of consciousness (DoC) in the context of scarce resources, what is owed to conscious individuals with brain injury is as much a civil and disability rights issue as one of distributive justice. At a minimum, physicians should identify covert consciousness. Turning to the question of resource allocation, the provision of proper rehabilitation may be cost-effective. Because chronic care costs of DoC patients are fixed, improvements in functional status may decrease longitudinal costs.
I read with interest Drs. Fins and Bernat's excellent discussion on the ethical, palliative, and health care policy considerations arising from the American Academy of Neurology Guideline on Disorders of Consciousness. I share the reservation of the authors regarding the adoption of the term unresponsive wakefulness syndrome (UWS) in lieu of the vegetative state (VS). The term UWS inadvertently risks conveying to the general public that some of these patients will improve and become better.
Les personnes en état végétatif permanent posent des questions éthiques, sociétales notamment sur la poursuite ou non de la nutrition et de l'hydratation artificielles. Dans cet article, l'auteur explore les processus décisionnels à l'oeuvre dans ces situations.
En application de la jurisprudence, Vincent L., le juge administratif, s'autorise à contrôler directement une décision médicale, alors que le patient est en vie dans un lit d'hôpital. Dans ces conditions, le juge doit manifester une prudence particulière dans la connaissance des faits, et il est difficile d'échapper au recours à l'expertise judiciaire. (Conseil d'État, 13 juillet 2017, no 412267, Référé).
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Après trois ans de contentieux, l'affaire Vincent L. a permis de définir les premières limites d'un régime jurisprudentiel de contestation des décisions médicales en matière de fin de vie. Cette jurisprudence devient un outil procédural, dans un contentieux amené à se développer, et dont l'originalité principale était la contestation devant le tribunal administratif de décisions prises par des médecins.
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"Votre enfant devra rester allongé sur un lit et il ne parlera jamais." Pour Anne, cette sentence des médecins tombe comme un terrible couperet. À cause d’un accouchement compliqué et d’une mauvaise prise en charge, son fils Frédéric sera toute sa vie lourdement handicapé et dans un état végétatif. Pendant trois ans, Anne va chercher désespérément toutes les solutions pour éveiller son fils à la vie, pour faire briller une étincelle dans ses yeux. Ce seront trois années d'un amour démesuré, où chacune de ses pensées sera tournée vers son enfant. Mais rien n’y fait. Comprenant qu’il n’y a aucun espoir, après des souffrances inhumaines, elle décide de laisser partir son enfant, de donner la mort à Frédéric.
[Extrait résumé éditeur]
In critical care when unconscious patients are assisted by machines, humanity is mainly ensured by respect for autonomy, realised through advance directives or, mostly, reconstructed by cooperation with relatives. Whereas patient-centred approaches are widely discussed and fostered, managing communication in complex, especially end-of-life, situations in open intensive care units is still a point of debate and a possible source of conflict and moral distress. In particular, healthcare teams are often sceptical about the growing role of families in shared decision-making and their ability to represent patients' preferences. New perspectives on substituted relational autonomy are needed for overcoming this climate of suspicion and are discussed through recent literature in the field of medical ethics.
Objectives: To trace the psychological mechanism underlying caregivers’ emotional experience in prolonged disorders of consciousness, by examining the mediating role of boundary ambiguity in the relationship between ambiguous loss and grief.
Design: Cross-sectional design.
Setting: The Respiratory Rehabilitation Division of a long-term medical and rehabilitation institute.
Subjects: A total of 64 primary caregivers (69% female) of patients in a vegetative state (n = 49) or minimally conscious state (n = 15), with a mean age of 55.5 (SD = 12.3) years. Participants were mostly the patient’s children (62%) or partners (27%). The mean caregiving duration was 4.9 (SD = 5.1) years.
Main measures: The Boundary Ambiguity Scale, the Revised Need for Closure Scale, an adapted version of the multifactor Two-Track Bereavement Questionnaire, and a sociodemographic questionnaire, which included items regarding caregiving: frequency of visits and perception of the patient’s psychological presence.
Results: (1) Caregivers’ grief scores (total TTBQ: mean = 2.97; SD = 0.55) did not significantly differ from those exhibited by a normative bereavement sample. (2) Time since injury did not affect caregivers’ grief scores (three-year cut-point; P > .05). (3) Mediation analyses revealed that boundary ambiguity (mean = 34.03; SD = 7.55) significantly mediates the relationship between need for closure (B = .11; confidence interval (CI) = .04–.23) and grief; frequency of visits (B = .05, CI = .02–.10) and grief and perception of psychological presence (B = .26, CI = .00–.61) and grief in three separate models.
Conclusion: Ambiguity concerning relational boundaries hinders caregivers’ ongoing grief reaction and impedes their ability to integrate the loss. High frequency of visits, belief in the patient’s psychological presence and difficulties in tolerating uncertainty are all clinical manifestations of caregivers’ entangled experience.
Patients with end stage kidney disease (ESKD) with severely impaired cognitive function have no survival benefit from dialysis. We therefore undertook a survey to explore the renal physicians' practices of withholding and withdrawal of dialysis treatment in vegetative state patients in the United Arab Emirates (UAE). A cross sectional survey of 29 nephrology practices in UAE exploring physicians' practices in making decisions of withholding and withdrawal of dialysis treatment during provision end-of-life care for patients in persistent vegetative state (PVS).The majority of participants practice in governmental non-for-profit dialysis units (79%), and think they are well prepared to make decision with patients and family on issues of dialysis withdrawal and withholding (69%). If a chronic dialysis patient became permanently unconscious only few respondents (17%) indicated probability of stopping dialysis. On the other hand, more respondents (48%) reported that dialysis is likely to be withheld in PVS patients who develop kidney failure. In high risk or poor prognosis ESKD patients and given how likely they would consider each option independently, respondents reported they are likely to consider time-limited dialysis in 78% of the time followed by stopping (46%) or forgoing (27%) dialysis. Majority of the participants perceived that their decisions in providing renal care for PVS patients in UAE were influenced by the family sociocultural beliefs (76% of participants), the current hospital policies (72% of participants), and by Islamic beliefs (66% of participants). Only few perceived access to palliative care (30%) and treatment cost (17%) to have an impact on their decision making. Decisions of initiation and continuation of dialysis treatment to ESKD patients in PVS are prevalent among nephrology practices in UAE. Development of local guidelines based on the societal values along with early integration of palliative kidney failure management care would be required to improve the quality of provision of end-of-life renal care in UAE.
ABBREVIATIONS: ESKD: stage kidney disease; UAE: United Arab Emirates; PVS: persistent vegetative state; RPA: Renal Physicians Association; ASN: American Society of Nephrology; EMAN: Emirates Medical Association Nephrology Society; CPR: cardiopulmonary resuscitation.
This essay complements the scientific and practice scope of the American Academy of Neurology Guideline on Disorders of Consciousness by providing a discussion of the ethical, palliative, and policy aspects of the management of this group of patients. We endorse the renaming of "permanent" vegetative state to "chronic" vegetative state given the increased frequency of reports of late improvements but suggest that further refinement of this class of patients is necessary to distinguish late recoveries from patients who were misdiagnosed or in cognitive-motor dissociation. Additional nosologic clarity and prognostic refinement is necessary to preclude overestimation of low probability events. We argue that the new descriptor "unaware wakefulness syndrome" is no clearer than "vegetative state" in expressing the mismatch between apparent behavioral unawareness when patients have covert consciousness or cognitive motor dissociation. We advocate routine universal pain precautions as an important element of neuropalliative care for these patients given the risk of covert consciousness. In medical decision-making, we endorse the use of advance directives and the importance of clear and understandable communication with surrogates. We show the value of incorporating a learning health care system so as to promote therapeutic innovation. We support the Guideline's high standard for rehabilitation for these patients but note that those systems of care are neither widely available nor affordable. Finally, we applaud the Guideline authors for this outstanding exemplar of engaged scholarship in the service of a frequently neglected group of brain-injured patients.
La deuxième partie de l'ouvrage "Protéger les majeurs vulnérables (vol. 3) : quels nouveaux droits pour les personnes en fin de vie ? " intitulée "La fin de vie à l'épreuve du terrain" est divisée en deux chapitres :
- L'expérience des usagers : le témoignage de la présidente de France Alzheimer ; le point de vue de l'Association pour le droit de mourir dans la dignité (ADMD) ; le point de vue de l'Union nationale des associations de familles de traumatisés crâniens et de cérébro-lésés (UNAFTC) ;
- l'expérience des professionnels : les travaux de l'ANESM sur la fin de vie ; la fin de vie à domicile ; la fin de vie en établissements médico-sociaux ; la fin de vie à l'hôpital : le point de vue d'un directeur d'hôpital ; le point de vue de médecins.
Le Conseil d'État et la Cour européenne des droits de l'Homme ont répondu, en janvier 2018, dans une même affaire, à la délicate question de la légalité d'une décision de l'arrêt des traitements d'un mineur en état végétatif et atteint d'un mal incurable, prise par le seul médecin à l'issue de la procédure collégiale instaurée par la loi du 2 février 2016, et alors que les parents s'y opposent. Ces deux décisions mettent clairement en valeur la répartition des pouvoirs du juge et du médecin confrontés à une telle situation, et la place accordée à l'avis des parents. Elles confirment l'existence d'un pouvoir de contrôle du juge, d'une capacité de décision finale autonome pour le médecin, et du recueil d'un avis, non d'un consentement, des parents, par l'application dérogatoire du code de la santé publique par rapport aux règles de l'autorité parentale consacrées par le Code civil. (R.A.).
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Mr Justice Baker delivered the Oxford Shrieval Lecture 'A Matter of Life and Death' on 11 October 2016. The lecture created public controversies about who can authorise withdrawal of assisted nutrition and hydration (ANH) in disorders of consciousness (DOC). The law requires court permission in 'best interests' decisions before ANH withdrawal only in permanent vegetative state and minimally conscious state. Some clinicians favour abandoning the need for court approval on the basis that clinicians are already empowered to withdraw ANH in other common conditions of DOC (e.g. coma, neurological disorders, etc.) based on their best interests assessment without court oversight. We set out a rationale in support of court oversight of best interests decisions in ANH withdrawal intended to end life in any person with DOC (who will lack relevant decision-making capacity). This ensures the safety of the general public and the protection of vulnerable disabled persons in society.
Par une ordonnance du juge des référés du 5 janvier 2018 (no 416689, Publié), le Conseil d’État valide l’arrêt des soins d’une enfant mineure en état végétatif contre l’avis de ses parents, et la CEDH, par décision du 25 janvier 2018 (no 1828/18) a rejeté le recours des parents.
Richard Rudner noted long ago that many of our decisions to act are
made in the setting of uncertainty and thus, deliberation about a course
of action must take into account the cost of being wrong. He was speak-
ing in the context of atomic testing and the threat of nuclear chain reac-
tions. Acting on the hypothesis that there will not be an apocalyptic
chain reaction (by developing and testing nuclear bombs) had better
enjoy substantial justification.
The more general epistemic lesson he re-lates as follows,
[O]ur decision regarding the evidence and respecting how strong is
“strong enough”, , is going to be a function of the importance, in the
typically ethical sense, of making a mistake in accepting or rejecting
the hypothesis.... How sure we need to be before we accept a hypothesis
will depend on how serious a mistake would be (Rudner,1953,2).
Less dramatic examples are illustrative. Suppose a medical re-
searcher thinks that a toxic ingredient in a drug is not present in lethal
quantities. Before acting on this hypothesis as if it were true, she
would need very strong justification for it being true. Being wrong that
it is not toxic would mean lives lost. Of course, costs can be symmetrical.
If in pre-trial testing a drug shows significant promise for a deadly dis-
ease (imagine a vaccine in the setting of a pandemic), then not doing
a human trial would also mean numerous lives lost. Cases of this latter
sort are symmetrical, cases like nuclear bomb testing have asymmetrical
[Début de l'article]
BACKGROUND: Families of patients in vegetative or minimally conscious states are often horrified by the suggestion of withdrawing a feeding tube, even when they believe that their relative would not have wanted to be maintained in their current condition. Very little is known about what it is like to witness such a death.
AIM: To understand these families' experience of their relatives' deaths.
DESIGN: Qualitative study using in-depth narrative interviews analyzed inductively with thematic analysis.
PARTICIPANTS: A total of 21 people (from 12 families) whose vegetative or minimally conscious relative died following court-authorized withdrawal of artificial nutrition and hydration. All had supported treatment withdrawal.
FINDINGS: Interviewees were usually anxious in advance about the nature of the death and had sometimes confronted resistance from, and been provided with misinformation by, healthcare staff in long-term care settings. However, they overwhelmingly described deaths as peaceful and sometimes even as a "good death." There was (for some) a significant "burden of witness" associated with the length of time it took the person to die and/or distressing changes in their appearance. Most continued to voice ethical objections to the manner of death while considering it "the least worst" option in the circumstances.
CONCLUSION: Staff need to be aware of the distinctive issues around care for this patient group and their families. It is important to challenge misinformation and initiate honest discussions about feeding-tube withdrawal and end-of-life care for these patients. Families (and staff) need better support in managing the "burden of witness" associated with these deaths.
BACKGROUND: Knowledge of the factors associated with the decision to withdraw or withhold life support (WWLS) in brain-injured patients is limited. However, most deaths in these patients may involve such a decision.
OBJECTIVES: To identify factors associated with the decision to WWLS in brain-injured patients requiring mechanical ventilation who survive the first 24 h in the ICU, and to analyse the outcomes and time to death.
SETTINGS: Twenty French ICUs in 18 university hospitals.
PATIENTS: A total of 793 mechanically ventilated brain-injured adult patients.
MAIN OUTCOME MEASURES: Decision to WWLS within 3 months of ICU admission, and death or Glasgow Outcome Scale (GOS) score at day 90.
RESULTS: A decision to WWLS was made in 171 patients (22%), of whom 89% were dead at day 90. Out of the 247 deaths recorded at day 90, 153 (62%) were observed after a decision to WWLS. The median time between admission and death when a decision to WWLS was made was 10 (5 to 20) days vs. 10 (5 to 26) days when no end-of-life decision was made (P < 0.924). Among the 18 patients with a decision to WWLS who were still alive at day 90, three patients (2%) had a GOS score of 2, nine patients (5%) had a GOS score of 3 and five patients (3%) a GOS score of 4. Older age, presence of one nonreactive and dilated pupil, Glasgow Coma Scale less than 7, barbiturate use, acute respiratory distress syndrome and worsening lesions on computed tomography scans were each independently associated with decisions to WWLS.
CONCLUSION: Using a nationwide cohort of brain-injured patients, we observed a high proportion of deaths associated with an end-of-life decision. Older age and several disease severity factors were associated with the decision to WWLS.
BACKGROUND: In palliative care, administration of opioids is often indispensable for pain treatment. Pain assessment may help recognize pain and guide treatment in non-communicative patients. In the Netherlands the Rotterdam Elderly Pain Observation Scale (REPOS) is recommended to this aim, but not yet validated. Therefore the objective of this study was to validate the REPOS in non-communicative or unconscious end-of-life patients.
METHODS: In this observational study, the primary researcher applied the REPOS, while both the researcher and a nurse applied the Numeric Rating Scale (NRS). If possible, the patient in question applied the NRS as well. The NRS scores were compared with the REPOS scores to determine concurrent validity. REPOS scores obtained before and after a pain-reducing intervention were analysed to establish the scale's sensitivity to change.
RESULTS: A total of 183 REPOS observations in 100 patients were analysed. Almost 90% of patients had an advanced malignancy; observations were done a median of 3 days (IQR 1 to 13) before death. Internal consistency of the REPOS was 0.73. The Pearson product moment correlation coefficient ranged from 0.64 to 0.80 between REPOS and NRS scores. REPOS scores declined with median 2 points (IQR 1 to 4) after a pain-reducing intervention (p < 0.001). Optimal sensitivity (0.81) and specificity (0.62) were found at cut-off score 3.
CONCLUSIONS: This study demonstrates that the REPOS has promising psychometric properties for pain assessment in non-communicative end-of-life patients. Its application may be of additional value to relieve suffering, including pain, in palliative care.
BACKGROUND: Sounds and acoustic stimuli can have an effect on human beings. In medical care, sounds are often used as parts of therapies, e. g., in different types of music therapies. Also, human speech greatly affects the mental status. Although calming sounds and music are widely established in the medical field, clear evidence for the effect of sounds in palliative care is scare, and data about effects of the human voice in general are still missing. Thus, the aim of this study was to evaluate the effects of different voice stimuli on palliative patients.
METHODS: Two different voice stimuli (one calm, the other turbulent) were presented in a randomized sequence, and physiological parameters (blood pressure, heart frequency, oxygen saturation, respiratory rate) were recorded.
RESULTS: Twenty patients (14 conscious and 6 unconscious) participated in this study. There was a decrease of heart frequency as well as an increase of oxygen saturation in the group of conscious patients, whereas no significant change of blood pressure or respiratory rate were detected in either group, conscious and unconscious patients.
CONCLUSIONS: Although our dataset is heterogeneous, it can be concluded that voice stimuli can influence conscious patients. However, in this setting, no effect on unconscious patients was demonstrated. More clinical research on this topic with larger groups and a broader spectrum of parameters is needed.