Surrogate health care decision making is often a challenge for everyone involved. In the case of incapacitated patients, family members, nurses, health care providers, and other members of the health care team often grapple with determining the most appropriate clinical course of action. For these difficult patient scenarios, the expertise of clinical ethics consultants is sought to assist with complex health care decision making. Clinical ethics consultation is designed to provide a more objective “outside” opinion and offer advice to the patient, family, and entire care team to support and guide decisions. Nurses are well positioned to initiate assistance from Clinical Ethics Consult Services in support of patient and family advocacy. This article presents a case analysis based on the Stakeholder, Facts, Norms, and Options Framework to analyze the best interest course of action for Mr K., a patient diagnosed with abdominal pain due to end-stage liver cirrhosis and who lacks decisional capacity in regard to his own treatment decision making. The case analysis highlights specific examples of how nurses can provide information, facilitate discussion, and otherwise support patients and families to achieve best interest outcomes.
Le numéro 139 de JALMALV est dédié à la créativité des personnes en fin de vie, aux médiations artistiques telles que l'art-thérapie, la musicothérapie qui offrent un moment de lâcher-prise et de revalorisation narcissique. Les textes rassemblés interrogent les conditions de cette créativité et les moyens à mettre en place pour le patient y compris dans le rapport aux soins.
L'auteur apporte une réflexion sur l'euthanasie associant anthropologie, sociologie, philosophie, théologie, politique et éthique. Il souligne les divisions qu'elle suscite au sein des sociétés comme des familles, en raison du fait qu'elle n'interroge pas uniquement la mort mais aussi la vie et les valeurs tout en obligeant l'individu à porter un autre regard sur sa propre existence et sa condition humaine.
La question de l'euthanasie est un souci majeur, dans nos sociétés occidentales. Mais le débat public autour de cette question ressemble souvent à un dialogue de sourds, car il est quasiment impossible d'arriver à ce que les mots aient le même sens pour les différents protagonistes. De plus, isoler cette question de l'ensemble des interrogations sur la fin de vie n'est pas très juste. Plutôt que de continuer à débattre indéfiniment, et souvent stérilement, de ce sujet éthique brûlant, ma pratique des soins palliatifs m'a amenée à l'approfondir, par le biais d'une problématique clinique concrète, celle de l'alimentation par sonde soit en "fin de vie", soit aux "limites de l'âge et de la maladie".
Cet ouvrage de la collection "Espace éthique" regroupe des contributions sur la notion de vulnérabilité, notamment sur les problèmes et les opportunités posés par son usage dans la société. Ainsi, une politique de protection des personnes vulnérables peut, dans le même temps, être une source d'exclusion. Les auteurs estiment que cette nouvelle éthique peut être positive à condition de ne pas verser dans l'apologie de la vulnérabilité.
Background: Palliative care clinicians frequently encounter situations in which there are ethical dilemmas about the right thing to do. Palliative medicine fellowships are required to include education about ethics. Our fellowship increased fellows’ ethics education through monthly didactics, lectures in a professional development series, and a month-long ethics rotation.
Methods: We sought input from graduates of our palliative medicine fellowship about the content and amount of the ethics education they received. Fellowship graduates were invited via e-mail to complete an online survey about the ethics education they received during fellowship. They were asked questions about their work environment, frequency with which they encounter ethical dilemmas, their perspectives on the ethics content, the amount of ethics education they received during fellowship, and their input on ways to improve the ethics education within the fellowship.
Results: Twenty-eight (82%) of 34 fellowship graduates completed the survey; 93% noted that they encounter ethical dilemmas in their work, with half encountering these on a daily or weekly basis, and 86% noted that colleagues ask them questions about ethics because of their palliative medicine training. None responded that they had received too much ethics education. Fellowship graduates identified ethics content that has been useful since completing fellowship and suggested ways to improve ethics education for future fellows.
Conclusion: Graduates of a palliative medicine fellowship encounter ethical dilemmas often and frequently are asked questions about ethics. Palliative medicine fellowships may want to examine their ethics curriculum to ensure that graduating fellows are learning about relevant ethics topics and are comfortable discussing ethical dilemmas with others.
Background: Periprocedural providers are encountering more patients with code status limitations (CSLs) regarding their preferences for resuscitation and life-sustaining treatment who choose to undergo palliative procedures. Surgical and anesthesia guidelines for preprocedural reconsideration of CSLs have been available for several years, but it is not known whether they are being followed in practice.
Objective: We assessed compliance with existing guidelines for patients undergoing venting gastrostomy tube (VGT) for malignant bowel obstruction (MBO), serving as an example of a palliative procedure received by patients near the end of life.
Design: Code status was determined at admission and throughout the hospitalization by chart review. Documentation of code status discussions (CSDs) was identified from provider notes and compared with existing guidelines.
Setting/subjects: An institutional database retrospectively identified patients who underwent VGT placement for MBO at two academic hospitals (2014-2015).
Measurements: We identified 53 patients who underwent VGT placement for MBO. Interventional radiologists performed 88% of these procedures. Other periprocedural providers involved in these cases included surgeons, gastroenterologists, anesthesiologists, and sedation nurses.
Results: CSLs were documented before the procedure in only 43% of cases, and a documented CSD with a periprocedural provider was identified in only 22% of CSL cases. Of all VGT placements performed in patients with CSLs before the procedure, only 13% were compliant with the guidelines of preprocedural reconsideration of CSLs.
Conclusions: Increased compliance with guidelines published by the American Society of Anesthesiologists, the American College of Surgeons, and the Association of Perioperative Registered Nurses is necessary to ensure goal-concordant care of patients with CSLs who undergo a procedure. Efforts should be made to incorporate these guidelines into the training of all periprocedural providers.
Au travers de six futurs fictionnels, construits par sous-détermination, des spécialistes de diverses disciplines s'interrogent sur le champ des possibles dans le domaine de la santé, par-delà les seuls aspects technologiques et organisationnels, ainsi que sur les enjeux éthiques que soulèvent ces perspectives.
A person's body can, it seems, survive well after losing the capacity to support Lockean personhood. If our rights in our bodies are, basically, rights in our selves or persons, this seems to imply that we do not after all have a right to direct the disposition of our living remains via advance directive. Govind Persad argues that our rights over our bodies persist after the loss of our personhood; we have a right to insist that our bodies die after we are gone for much the same reason that we have a right to decide whether or not to donate organs, after our death. Persad's conclusion may be right; however, his arguments regarding body rights are insufficient. Persad's suggestion that our rights in our bodies come from a history of acting and sensing through them cannot, quite, be right, since we act and sense through tools, as well. Nor should we accept Persad's arguments, from intuitions in cases involving posthumous pregnancy, that our posthumous body rights (however acquired) are powerful enough to allow choices that will result in the death of beings that need our living remains to survive. Problems with these intuitions point to a more general concern for this sort of case-based intuitionistic method: it presupposes that what body rights we have is a matter of 'natural right', accessible to all, rather than a function of how social institutions do or should resolve conflicts about the proper way of defining our authority over our bodies.
In a recent American Journal of Hospice and Palliative Medicine article entitled "Ethics Education During Palliative Medicine Fellowship," Dr Elizabeth Vig and Dr Susan Merel detail the ethics curriculum of the University of Washington School of Medicine's Palliative Medicine Fellowship, including their efforts in the past several years to increase and bolster the fellowship's ethics curriculum. This letter builds upon this topic and discusses some other strategies and methods for ethics education and training that fellowship programs may consider adopting to bolster their ethics curriculum.
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.
L’objectif de ce texte est d’exposer la vision d’un théologien catholique, et professeur émérite en communication et journalisme sur la question de l’accompagnement spirituel des personnes qui demandent une euthanasie.
L’euthanasie des patients mineurs est autorisée en Belgique depuis 2014. Selon les critères de la loi, le mineur d’âge atteint d’une maladie incurable sévère et dans un état de souffrance physique inapaisable doit faire lui-même la demande d’euthanasie même si un consentement parental est requis. La loi belge ne prévoit pas de limite d’âge mais l’enfant qui demande l’euthanasie doit être capable de discernement. Le débat éthique de l’euthanasie des patients mineurs interroge les principes d’autonomie, de bienfaisance, de non malfaisance et de justice.
OBJECTIVE: Euthanasia has been considered unethical for most of the history of medicine. Recently it has been legalised in some countries, including parts of Australasia. We describe the recent history of euthanasia, paying attention to the extension of criteria that impact on the poor, elderly and vulnerable members of society in countries that currently have legalised this. In four of the five countries where euthanasia is legalised, there have been extensions of its criteria, either by revision of legislation or changes in practice.
CONCLUSIONS: We suggest that this dynamic can be halted by international agreements of medical societies to shun involvement in euthanasia, as has been the case with other legal interventions that stigmatise. We may, as we have in the past, need to work collectively to meet this ethical challenge.
The right to die is an issue is predicated on larger cultural understandings of autonomy. Autonomy, in turn, is centered around assumptions of choice, that individuals are able to make health-related decisions based on a rational calculation. In such a way, a medically assisted death is differentiated from suicide. Through an ethnographic study of right-to-die activists in North America and Australia and how they understand ideals of “good deaths,” this article will complicate this view by examining the ethical subject constructed by such activism that reveals autonomy to be a useful guiding fiction that mask larger ethical relationships.
What might the good life amount to at the margins of life? Taking our point of departure in Jonathan Lear’s notions of ontological breakdown and radical hope as well as the phenomenology of lived time, we explore hope within the institutional aging process in Denmark. Drawing on two ethnographic cases, Vagn and Thea, we propose a phenomenological and responsive hope emerging within complex temporalities. This is a relational hope to be included among the living, to be a human being among others. Importantly, it is neither optimistic nor naive but rather hope practiced in the face of devastating life circumstances.
La bioéthique est née des progrès médicaux d'une part et de la nécessité de se prémunir contre toute répétition des horreurs pratiquées par les expérimentateurs nazies d'autre part. Cela a conduit à des règles très diversement définies dans les différents pays. La France est sous un régime éthique caractérisé par un dirigisme important et des responsabilités confiées essentiellement aux professionnels.
Dans ce livre, il est proposé d'ouvrir un peu plus le champ de la responsabilisation individuelle, de privilégier les droits du malade et d'accroître le respect de la liberté (encadrée) de chacun. En pratique, cela implique notamment moins de restriction dans la possibilité pour les malades en fin de vie de choisir la modalité de leur mort.
The impostor phenomenon (IP) describes the experience of questioning one's abilities and fearing exposure as an intellectual fraud, despite objective evidence of success. The IP has been identified in high-achieving professionals across a variety of disciplines, including clinical medicine, and can be associated with significant anxiety and psychological distress. In this series, we present three authentic cases that demonstrate how the IP may manifest in palliative care practice. Acknowledging the current emphasis on clinician wellness and burnout, we suggest that the IP may be one important source of distress for many early-career clinicians in palliative care. With the physician as the focus of each case, we explore the difficult emotions faced and highlight how palliative care clinicians may be uniquely vulnerable to the IP. We then identify concrete strategies to help clinicians manage feelings of IP and enhance their professional well-being.
Discussions about assisted suicide have hitherto been based on accounts of dignity conceived only as an inherent value or as a status; accounts of dignity in which it appears as a (contingent) attitude, by contrast, have been neglected. Yet there are two good reasons to consider dignity to be an attitude. First, this concept of dignity best allows us to grasp a crucial aspect of everyday language: people often express fears of losing their dignity-and it is not possible to explain this with an account in which dignity is inherent. Second, such a concept allows us to adduce new argumentation where the argument based on status ends. Dignity considered as a status provides grounds to argue for the moral permissibility of assisted suicide, in the sense that in such an account individuals possess the normative power to waive their right to life. But the question then remains of how to decide what counts as a good reason for assisted suicide-and this is where an argument based on dignity as an attitude can provide illumination.