La pratique de prélèvement d’organe selon la procédure dite Maastricht III (MIII) est l’objet de discussions et de controverses éthiques. Au premier plan de ces craintes, est celle de la dérive utilitariste privilégiant une éthique sociétale à une éthique individuelle. On peut proposer néanmoins un certain nombre de garde-fous éthiques discutés dans cet article et dont les principaux sont les suivants : le MIII ne doit pas être la solution unique face à la pénurie de greffons. Les décisions de limitation et arrêt thérapeutique doivent être strictement appliquées dans le cadre de la loi Claeys Leonetti sans interférence avec l’équipe de prélèvement ; un consentement explicite est la garantie du respect de la volonté du donneur ; les procédures de sédation accompagnant l’arrêt des traitements de support vitaux doivent être identiques qu’il y ait ou non de prélèvement MIII.
Peu d’analyses des premiers résultats ont été publiées sur la procédure de don d’organes dite Maastricht 3 (M3), mise en place en 2014 en France. Pourtant, cette procédure est soumise à un conflit d’intérêt intérieur pour le médecin qui devra éclaircir son désir d’être utile aux autres par le biais de la promotion du don d’organes sans que cela n’influence sa décision d’arrêt des traitements de l’éventuel patient donneur. Ceci, alors même que les moyens d’établir un pronostic sont souvent limités. Toute modification des pratiques liées à la fin de vie au cours de l’instauration de la procédure M3 – telles la politique d’admission des patients en réanimation, l’administration de la sédation ou encore la procédure de séparation du ventilateur – peut témoigner d’une volonté de maximisation de l’utilité à court terme de cette procédure. Le consentement des proches peut lui aussi se retrouver biaisé par une forte désirabilité sociale ou par un sentiment de culpabilité, et une évaluation sereine ne sera pas réalisée du fait de la rapidité de la procédure. L’éclairage des tensions philosophiques entre les pensées conséquentialistes et déontologiques, l’importance d’un débat dans chaque structure, une indication très restrictive aux patients anoxiques les plus graves, un contrôle a posteriori indépendant, font partie des solutions proposées dans cet article pour réduire ces problèmes. Alors que la « pénurie » actuelle liée au don d’organes pourrait être résolue par un meilleur taux d’acceptabilité de prélèvements de patients en état de mort encéphalique, se pose finalement la question d’un dépassement irrémédiable des limites éthiques qui garantissent le sens premier de l’engagement des professionnels auprès de leurs patients.
Introduction: Advance directives are legal documents which individuals draw up to declare their treatment preferences and to appoint well-informed proxies to safeguard patient autonomy in critical situations when that individual is temporarily or no longer able to communicate these preferences. On December 22, 2017, the Italian Parliament approved the first law on end of life (“Provisions for informed consent and advance directives” L.219/2017), after a heated public and political debate lasting almost twenty years.
Objective: The aim of this study was to investigate the awareness, knowledge, opinions and attitudes regarding Italian Law 219/2017 and advance directives among the Italian population 15 months after its entry into force.
Methods: A nationwide population-based survey was conducted by a certified public opinion survey company. A sample size of 2000 interviews was planned. A structured questionnaire was developed to investigate awareness, opinions and attitudes concerning the law by a multiprofessional research team. The agreed-on version was pretested on a sample of 70 selected participants.
Results: The sample included 2000 valid interviews; 70.1% of respondents declared they had heard about the law on informed consent and advance directives. Respondents were asked to express their overall opinion on the law’s utility and importance: 88% declared that the law was quite or very important and 76% had a positive attitude towards making/registering advance directives.
Conclusion: The principles of Italian Law 219/2017 are aligned with the ethical sentiment of the vast majority of the Italian population. It is crucial to stimulate discussion to increase knowledge and awareness in order to increase the number of advance directives.
In the half-century history of clinical practice of diagnosing brain death, informed consent has seldom been considered until very recently. Like many other medical diagnoses and ordinary death pronouncements, it has been taken for granted for decades that brain death is diagnosed and death is declared without consideration of the patient’s advance directives or family’s wishes. This essay examines the pros and cons of using informed consent before the diagnosis of brain death from an ethical point of view. As shared decision-making in clinical practice became increasingly indispensable, respect for the patients’ autonomous wishes regarding how to end their lives has a significant role in deciding how death is diagnosed. Brain death, as a fully technologically controlled death, may require a different ethical framework from the old one for traditional cardiac death. With emerging and proliferating options in end-of-life care for those who suffer from catastrophic brain injury, the traditional reasoning that ‘death gives no choice, hence no consent’ requires another examination. Patients facing imminent brain death now have options other than undergoing the diagnostic workup for brain death, such as donation after circulatory death and withdrawal of life-sustaining treatment with maximum comfort measures for death with dignity. Nevertheless, just as in the debate over opt-in versus opt-out organ donation policies, informed consent before the diagnosis of brain death faces fierce opposition from consequentialists urging the expansion of the donor pool. This essay examines these objections and provides constructive replies along with a proposal to accommodate this morally required consent.
Le mot "éthique", lorsqu’il est appliqué aux sciences et à la médecine du vivant, semble recouvrir indifféremment l’"éthique médicale" proprement dite, c’est-à-dire l’exigence d’un certain comportement de la médecine au service du malade, et la bioéthique, qui est la mise en forme, à partir d’une recherche pluridisciplinaire, d’un questionnement sur les conflits de valeurs suscités par le développement techno-scientifique dans le domaine du vivant. Ces deux termes ont, du reste, des champs d’application voisins ou croisés lorsqu’il s’agit du don d’organe ou de l’assistance à la procréation.
Didier Sicard clarifie les enjeux respectifs et communs de l’éthique médicale et de la bioéthique. Il met ainsi en perspective les notions de consentement, de préservation du secret ou encore de non-discrimination, essentielles à cette éthique appliquée.
Face au refus de soins, l’infirmier doit s’interroger. En effet, le consentement du patient est essentiel et doit être recherché. Dans le cas contraire, quelle est la responsabilité de l’infirmier ? Tout dépend des situations qui sont envisagées par la loi.
Limited research is available on parental decision-making regarding their children's participation in pediatric phase I oncology trials compared with the adult population. The objectives of this review were to describe: (1) the process of parental decision-making in this situation; (2) the optimal communication features physicians need when proposing inclusion in such trials; and (3) the place of the child/adolescent in the assent process. Thirty relevant studies meeting inclusion criteria were identified by searching five computerized databases (PubMed, Web of Science, Cairn, Psychinfo, EM Premium). Parental decision-making is a complex process based on hopeful expectations, multiple family considerations and the child's previous cancer experience. It is highly impacted by the quality of physicians' communication. A therapeutic alliance along with an empathetic attitude and a timely delivery of accurate information is essential. Due weight should be given to the voice of children or adolescents and their optimal level of involvement may be discussed depending on their age and maturity. They should be given age-adapted information in order to empower them to be rightfully and meaningfully involved in early-phase research. This review highlights the main gaps and necessary remedial actions to support an optimal patient care management in this situation. Physicians' training in communication, structured interdisciplinary teamwork and early integration of palliative care are three key challenges which need to be implemented to actively engage in optimization strategies which would improve patient care and family support when offering enrollment in a phase I trial.
BACKGROUND: Combining orders for do-not-resuscitate (DNR) for cardiac arrest with do-not-intubate (DNI) orders into a DNR/DNI code status is not evidence-based practice and may violate patient autonomy and informed consent when providers discuss intubation only in the context of CPR.
RESEARCH QUESTION: How often do providers refer to patients with a DNR order as "DNR/DNI" without documentation of refusal of intubation for non-arrest situations?
STUDY DESIGN AND METHODS: Retrospective observational study of adults (18 years or older) hospitalized in a Level 1 trauma/academic hospital between July 2017 and June 2018 inclusive with DNR orders placed during hospitalization RESULTS: Of 422 hospitalized adults with DNR orders, 261 (61.9%) had code status written in progress notes as DNR/DNI. Providers' use of the term DNR/DNI in progress notes was significantly (OR 2.21 99% CI 1.12 - 4.37) more common on medical hospital services (hospitalist, family medicine, internal medicine) than on non-medical ward services (medical/surgical intensive care units, surgery, psychiatry, neurology services).Of 261 "DNR/DNI"patients, providers did not document informed refusal of intubation for non-arrest situations for 68 (26.0%) of patients. By comparison, of 161 patients where providers documented code status in progress notes as DNR alone, 69 (42.9%) did have documentation of refusal of intubation for non-arrest events. Therefore, if a DNR/DNI code status was used in a non-arrest emergency to determine whether to intubate a patient, 68 (16.1%) of 422 patients could inappropriately be denied intubation without informed refusal (or despite their informed acceptance), and 69 (16.4%) could inappropriately be intubated despite their documented refusal of intubation.
INTERPRETATION: Conflation of DNR and DNI into DNR/DNI does not reliably distinguish patients who refuse or accept intubation for indications other than cardiac arrest, and thus may inappropriately deny desired intubation for those who would accept it, and inappropriately impose intubation on patients who would not.
CONTEXT: Few studies have examined how clinicians assess decision-making capacity for research in the last weeks of life.
OBJECTIVE: We examined the decision-making capacity for participation in a research study and its association with clinician impression and delirium among cancer patients with days to weeks of life expectancy.
METHODS: Patients admitted to our Palliative and Supportive Care Unit (PSCU) were approached for a prospective observational study. We assessed for their decision-making capacity based on clinical impression of physician and nurse, Memorial Delirium Assessment Scale (MDAS) and the MacArthur Competency Assessment Tool for Clinical Research (MacCAT-CR).
RESULTS: Among the 206 patients, 131 patients (64%) did not require MacCAT-CR assessment because they were overtly delirious or unresponsive; 37 (18%) patients were alert but did not complete the MacCAT-CR assessment for other reasons and 38 patients (18%) completed the MacCAT-CR assessment. Among these 38 patients, 5 (13%) were incapable and had normal albeit significantly higher MDAS scores compared to those who were capable (1.8 vs. 4.2, P=0.002). Compared against MacCAT-CR and MDAS, the overall agreement with capacity assessment with a clinician was 88% (95% CI 82-93%) for physicians and 90% (95% CI 82-94%) for nurses. The area-under the receiver-operating characteristics curve was 0.93 (95% CI 0.88-0.96) for physicians and 0.94 (95% CI 0.89-0.97) for nurses, suggesting high discrimination.
CONCLUSION: A majority of patients in the PSCU lacked decision-making capacity for participation in clinical research. Clinician impression had high accuracy. Few patients with normal MDAS were found to be incapable with MacCAT-CR assessment.
In 2015 Robert Veatch published the second edition of his Transplantation ethics, this time together with Lainie Ross. The chapters on postmortem organ procurement distinguish between 'giving' and 'taking' systems, and argue that 'taking' systems may promise a greater yield of organs for transplantation, but inevitably violate a requirement of respect for the deceased's autonomy. That argument has been very influential, and is also representative of a way of thinking that is widespread in the literature and in public debate. In this paper I contend that it is conceptually flawed in a number of important respects. These concern the understanding of both the concept of 'consent' and the requirement of respect for autonomy, the role of the relatives in any procurement system, and the factors that actually determine the extent to which a system respects autonomy, under any interpretation of that requirement.
At 35, Mr. J. was dying of an invasive pelvic sarcoma and had a tolerance to opioids. Despite his pain, he wanted to be present with his family and friends. When his physician broached the possibility of palliative sedation, he said, “We aren’t there yet.”
We do not know how much clinical physicians carrying out clinical trials in oncology and haematology struggle with ethical concerns. To our knowledge, no empirical research exists on these questions in a Nordic context. Therefore, this study aims to learn what kinds of ethical challenges physicians in Sweden, Denmark and Finland (n = 29) face when caring for patients in clinical trials; and what strategies, if any, they have developed to deal with them. The main findings were that clinical cancer trials pose ethical challenges related to autonomy issues, unreasonable hope for benefits and the therapeutic misconception. Nevertheless, some physicians expressed that struggling with such challenges was not of great concern. This conveys a culture of hope where health care professionals and patients uphold hope and mutually support belief in clinical trials. This culture being implicit, physicians need opportunities to deliberately reflect over the characteristics that should constitute this culture.
In a recent paper, Charles Foster argued that the epistemic uncertainties surrounding prolonged disorders of consciousness (PDOC) make it impossible to prove that the withdrawal of life-sustaining treatment can be in a patient's best interests and, therefore, the presumption in favour of the maintenance of life cannot be rebutted. In the present response, I argue that, from a legal perspective, Foster has reached the wrong conclusion because he is asking the wrong question. According to the reasoning in two leading cases-Bland and James-the principle of respect for autonomy creates a persuasive presumption against treatment without consent. Therefore, it is the continuation of treatment that requires justification, rather than its withdrawal. This presumption also works as the tiebreaker determining that treatment should stop if there is no persuasive evidence that its continuation is in the best interests of the patient. The presumption in favour of the maintenance of life, on the other hand, should be understood as an evidential presumption on a factual issue that is assumed to be true if unchallenged. However, the uncertainties regarding PDOC actually give reasons for displacing this evidential presumption. Consequently, decision-makers will have to weigh up the pros and cons of treatment having the presumption against treatment without consent as the tiebreaker if the evidence is inconclusive. In conclusion, when the right question is asked, Foster's argument can be turned on its head and uncertainties surrounding PDOC weigh in to justify the interruption of treatment in the absence of compelling contrary evidence.
This article discusses a recent ruling by the German Federal Court concerning medical professional liability due to potentially unlawful clinically assisted nutrition and hydration (CANH) at the end of life. This case raises important ethical and legal questions regarding a third person's right to judge the value of another person's life and the concept of 'wrongful life'. In our brief report, we discuss the concepts of the 'value of life' and wrongful life, which were evoked by the court, and how these concepts apply to the present case. We examine whether and to what extent value-of-life judgements can be avoided in medical decision-making. The wrongful-life concept is crucial to the understanding of this case. It deals with the question whether life, even when suffering is involved, could ever be worse than death. The effects of this ruling on medical and legal practice in Germany are to be seen. It seems likely that it will discourage claims for compensation following life-sustaining treatment (LST). However, it is unclear to what extent physicians' decisions will be affected, especially those concerning withdrawal of CANH. We conclude that there is a risk that LST may come to be seen as the 'safe' option for the physician, and hence, as always appropriate.
Background: The signing of do-not-resuscitate (DNR) consent is mandatory in providing a palliative approach in the end-of-life care for the terminally ill patients and requires an effective communication between the physician and the patients or their family members. This study aimed to investigate the association between the communication skills of physicians who participated in the SHARE (supportive environment, how to deliver the bad news, additional information, reassurance, and emotional support) model course on the patient notification and the signing of do-not-resuscitate (DNR) consent by the terminally ill patients at emergency rooms.
Methods: Between May 1, 2017 and April 30, 2018, a total of 109 terminally ill patients were enrolled in this study, of which 70 had signed a DNR and 39 had not. Data regarding the patients' medical records, a questionnaire survey completed by family members, and patient observation forms were used for the assessment of physicians' communication skills during patient notification. The observation form was designed based on the SHARE model. A multivariate logistic regression model was applied to identify the independent significant factors of the patient and family member variables as well as the four main components of the observation form.
Results: The results revealed that knowing how to convey bad news and providing reassurance and emotional support were significantly correlated with a higher rate of signing DNR consent. Additionally, physician-initiated discussion with family members and a predicted limited life expectancy were negative independent significant factors for signing DNR consent.
Conclusion: This study revealed that good communication skills help to increase the signing of DNR consent. The learning of such skills from attendance of the SHARE model course is encouraged for the physicians in the palliative care of terminally ill patients in an emergency room.
CONTEXT: Advances in medicine have seen changes in mortality in Western countries. Simultaneously, countries such as Australia, Canada, USA, New Zealand, the United Kingdom and Germany have encouraged consumer-directed care and Advance Care Plan (ACP) completion, giving patients a voice despite incapacity. Adhering to ACPs relies on the decision-making of treating doctors, making hospital doctors key partners, and their perspectives on ACP adherence critical.
OBJECTIVES: The aim of this review was to explore and map existing research on factors associated with hospital doctors adhering to adult patients' ACPs.
METHODS: A scoping review of English language publications within CINAHL, Emcare, Medline, PsycInfo and Scopus was conducted, following PRISMA Extension for Scoping Reviews (PRISMA-ScR) guidelines. ACPs were defined as adult patient-generated, written health care directions or values statements. Studies of any design, which reported original research associated with hospital doctors adhering to ACPs were included.
RESULTS: Twenty-seven publications were included in the final analysis. Results suggested ACPs were thought potentially useful, however, adherence has been associated with doctors': attributes (e.g. specialty, seniority), attitudes towards ACP (e.g. applicability), and legal knowledge.
CONCLUSION: Current literature suggests doctors' hold largely positive attitudes towards ACPs that provide useful patient information that enables doctors to make appropriate treatment decisions. Doctors often perceive limitations to ACP applicability due to legal requirements or ambiguity of patient outcome goals.
The organ transplantation enterprise is morally flawed. "Brain-dead" donors are the primary source of solid vital organs, and the transplantation enterprise emphasizes that such donors are dead before organs are removed-or in other words that the dead donor rule is followed. However, individuals meeting standard diagnostic criteria for brain death-unresponsiveness, brainstem areflexia, and apnea-are still living, from a physiological perspective. Therefore, removing vital organs from a heart-beating, mechanically ventilated donor is lethal. But neither donors nor surrogates nor the public in general are typically informed of this obviously relevant information. Therefore, donors or surrogates do not provide valid consent for a lethal medical procedure. This is a serious moral failing on the part of the transplant community. To address this concern, I advocate for accurate and fully transparent communication of information to the public to allow for an informed civic dialogue about the ethics and legality of lethal organ procurement. Furthermore, I advocate that systems be put in place by the transplant community to allow for valid consent for lethal organ procurement.
The opt-out system (or presumed consent) for end-of-life organ donation is being widely adopted in the United Kingdom. Since presumed consent for organ donation applies only to adults, commentators have recommended the implementation of routine parental request and integration of organ donation in the end-of-life care of children to increase the donor pool and the supply of transplantable organs. The empirical data for this recommendation originated from a survey of parents of deceased children with severe congenital and acquired brain injuries. The demographics of the surveyed parents were not representative of the diverse ethnic and religious affiliations of British society. Here, it is argued that there are unresolved medical, legal, cultural and religious challenges to the routine integration of end-of-life organ donation that can result in harmful consequences for children and parents. To address these challenges: (1) paediatric practice guidelines should be updated to incorporate new advances in the diagnosis and the treatment of severe brain injuries to eliminate potential clinical errors from premature treatment discontinuation and/or incorrect diagnosis of brain(stem) death and (2) a broad societal debate on the legal, cultural and religious consequences of routine integration of end-of-life organ donation in children.
BACKGROUND: The decision to undergo chemotherapy for incurable cancer demands informed discussions about the risks and benefits of proposed treatments. Research has shown that many patients have a poor grasp of these factors.
METHODS: An evaluation of the patient experience of palliative chemotherapy decision-making was undertaken. Patients with lung or gynaecological cancers were surveyed about their decision, what they understood about its risks and benefits, and how supported they felt.
RESULTS: A total of 29 people with lung cancer (n = 21) or gynaecological cancer (n = 8) completed questionnaires. The majority felt sure about their decision, though many were less sure of the risks and benefits of treatment. Unprompted comments revealed significant nuance, including that the decision to undergo chemotherapy may not necessarily have felt like a choice.
CONCLUSIONS: Our positive findings may reflect participant selection bias, or could represent genuine comfort in decision-making in Scottish oncology clinics. Further research is needed.
A Dutch doctor who euthanised a patient who had dementia and could not consent owing to the advanced stage of her condition has been acquitted, after a judge ruled that the patient’s previous request for euthanasia, signed when she was competent, was sufficient.
The case, which was heard in the District Court of the Hague, sought to determine whether the geriatrician should have verified whether the patient still wanted to be euthanised at the time of death.
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