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.
Qu'est-ce que le consentement à la décision médicale pour le patient ? L'auteur revient sur plusieurs notions : consentement, volonté, décision médicale, soins pour ensuite développer son propos sur les populations concernées par le consentement, le cadre, la qualité ou l'intégrité du consentement dans un cadre de soins.
il y a une gigantesque évolution de la relation patient-soignant depuis une trentaine d'années en France. L'auteur s'appuie sur son cham de compétences, à savoir la philosophie du droit pour en parler. Il développe son propos en trois points : évolution du droit français en lien avec l'évolution de la place du patient, articulation entre responsabilité juridique des soignants et droits des malades et pour terminer statut des directives anticipées pour comprendre la nature de la volonté du patient.
BACKGROUND: This study was conducted to examine whether a longitudinal advance care planning (ACP) intervention facilitates concordance between the preferred and received life-sustaining treatments (LSTs) of terminally ill patients with cancer and improves quality of life (QoL), anxiety symptoms, and depressive symptoms during the dying process.
PATIENTS AND METHODS: Of 795 terminally ill patients with cancer from a medical center in Taiwan, 460 were recruited and randomly assigned 1:1 to the experimental and control arms. The experimental arm received an interactive ACP intervention tailored to participants' readiness to engage in this process. The control arm received symptom management education. Group allocation was concealed, data collectors were blinded, and treatment fidelity was monitored. Outcome measures included 6 preferred and received LSTs, QoL, anxiety symptoms, and depressive symptoms. Intervention effectiveness was evaluated by intention-to-treat analysis.
RESULTS: Participants providing data had died through December 2017. The 2 study arms did not differ significantly in concordance between the 6 preferred and received LSTs examined (odds ratios, 0.966 [95% CI, 0.653-1.428] and 1.107 [95% CI, 0.690-1.775]). Participants who received the ACP intervention had significantly fewer anxiety symptoms (β, -0.583; 95% CI, -0.977 to -0.189; P= .004) and depressive symptoms (ß, -0.533; 95% CI, -1.036 to -0.030; P= .038) compared with those in the control arm, but QoL did not differ.
CONCLUSIONS: Our ACP intervention facilitated participants' psychological adjustment to the end-of-life (EoL) care decision-making process, but neither improved QoL nor facilitated EoL care honoring their wishes. The inability of our intervention to improve concordance may have been due to the family power to override patients' wishes in deeply Confucian doctrine-influenced societies such as Taiwan. Nevertheless, our findings reassure healthcare professionals that such an ACP intervention does not harm but improves the psychological well-being of terminally ill patients with cancer, thereby encouraging physicians to discuss EoL care preferences with patients and involve family caregivers in EoL care decision-making to eventually lead to patient value-concordant EoL cancer care.
This paper argues that existing English and Welsh mental health legislation (The Mental Health Act 1983 (MHA)) should be changed to make provision for advance decision-making (ADM) within statute and makes detailed recommendations as to what should constitute this statutory provision. The recommendations seek to enable a culture change in relation to written statements made with capacity such that they are developed within mental health services and involve joint working on mental health requests as well as potential refusals. In formulating our recommendations, we consider the historical background of ADM, similarities and differences between physical and mental health, a taxonomy of ADM, the evidence base for mental health ADM, the ethics of ADM, the necessity for statutory ADM and the possibility of capacity based ‘fusion’ law on ADM. It is argued that the introduction of mental health ADM into the MHA will provide clarity within what has become a confusing area and will enable and promote the development and realisation of ADM as a form of self-determination. The paper originated as a report commissioned by, and submitted to, the UK Government's 2018 Independent Review of the Mental Health Act 1983.
BACKGROUND: Family members do not have an official position in the practice of euthanasia and physician assisted suicide (EAS) in the Netherlands according to statutory regulations and related guidelines. However, recent empirical findings on the influence of family members on EAS decision-making raise practical and ethical questions. Therefore, the aim of this review is to explore how family members are involved in the Dutch practice of EAS according to empirical research, and to map out themes that could serve as a starting point for further empirical and ethical inquiry.
METHODS: A systematic mixed studies review was performed. The databases Pubmed, Embase, PsycInfo, and Emcare were searched to identify empirical studies describing any aspect of the involvement of family members before, during and after EAS in the Netherlands from 1980 till 2018. Thematic analysis was chosen as method to synthesize the quantitative and qualitative studies.
RESULTS: Sixty-six studies were identified. Only 14 studies had family members themselves as study participants. Four themes emerged from the thematic analysis. 1) Family-related reasons (not) to request EAS. 2) Roles and responsibilities of family members during EAS decision-making and performance. 3) Families' experiences and grief after EAS. 4) Family and 'the good euthanasia death' according to Dutch physicians.
CONCLUSION: Family members seem to be active participants in EAS decision-making, which goes hand in hand with ambivalent feelings and experiences. Considerations about family members and the social context appear to be very important for patients and physicians when they request or grant a request for EAS. Although further empirical research is needed to assess the depth and generalizability of the results, this review provides a new perspective on EAS decision-making and challenges the Dutch ethical-legal framework of EAS. Euthanasia decision-making is typically framed in the patient-physician dyad, while a patient-physician-family triad seems more appropriate to describe what happens in clinical practice. This perspective raises questions about the interpretation of autonomy, the origins of suffering underlying requests for EAS, and the responsibilities of physicians during EAS decision-making.
OBJECTIVE: To investigate whether less invasive methods of autopsy would be acceptable to bereaved parents and likely to increase uptake.
DESIGN: Mixed methods study.
SETTING: Bereaved parents recruited prospectively across seven hospitals in England and retrospectively through four parent support organisations.
SAMPLE: Eight hundred and fifty-nine surveys and 20 interviews with bereaved parents.
METHODS: Cross-sectional survey and qualitative semi-structured telephone interviews.
MAIN OUTCOME MEASURES: Likely uptake, preferences, factors impacting decision-making, views on different autopsy methods.
RESULTS: Overall, 90.5% of participants indicated that they would consent to some form of less invasive autopsy [either minimally invasive autopsy (MIA), non-invasive autopsy (NIA) or both]; 53.8% would consent to standard autopsy, 74.3% to MIA and 77.3% to NIA. Regarding parental preferences, 45.5% preferred MIA, 30.8% preferred NIA and 14.3% preferred standard autopsy. Participants who indicated they would decline standard autopsy but would consent to a less invasive option were significantly more likely to have a lower educational level (odds ratio 0.49; 95% CI 0.35-0.70; P = 0.000062). Qualitative findings suggest that parents value NIA because of the lack of any incision and MIA is considered a good compromise as it enables tissue sampling while easing the parental burden associated with consenting to standard autopsy.
CONCLUSION: Less invasive methods of autopsy are acceptable alternatives for bereaved parents, and if offered, are likely to increase uptake and improve parental experience. Further health economic, validation and implementation studies are now required to assess the viability of offering these in routine widespread clinical care.
Questions related to end-of-life decision making are common in clinical ethics and may be exceedingly difficult. Chief among these are the provision of cardiopulmonary resuscitation (CPR) and do-not-resuscitate orders (DNRs). To better address such questions, clarity is needed on the values of medical ethics that underlie CPR and the relevant moral framework for making treatment decisions. An informed consent model is insufficient to provide justification for CPR. Instead, ethical justification for CPR rests on the rule of rescue and on substituted interest judgments. Patients' known wishes and values are relevant, particularly in protecting them from unwanted CPR. Clinicians should rescue patients with the means at their disposal, as a prima facie moral imperative, unless there are compelling reasons to refrain. We present a moral framework for making decisions regarding CPR and DNR.
La décision médicale partagée est un processus complexe, notamment concernant l’arrêt des traitements spécifiques en oncologie. D’une part, le patient, plus vulnérable du fait d’une maladie avancée, et ses proches, redoutent cette interruption. D’autre part, l’oncologue dispose de plus en plus de possibilités thérapeutiques grâce aux avancées médicales réalisées ces dernières années. Une étude prospective observationnelle a été menée en oncologie. Elle s’est intéressée aux motifs faisant émerger le questionnement, au degré de concordance entre les différents interlocuteurs (équipe de soins palliatifs, oncologue, patients et proches) et à la décision finalement prise.
Le processus décisionnel en établissement d’hébergement pour personnes âgées dépendantes est complexe. Au regard de la prévalence des troubles cognitifs et de l’importance du rôle des aidants, il suppose de passer d’un choix personnel à une décision partagée. Le cadre juridique, bien que favorable, reste sous-exploité et pourrait être amélioré.
What matters at the end of life (EOL) among the older population in Denmark is poorly investigated. We used focus groups and in-depth interviews, to identify perspectives within the EOL, along with what influences resuscitation, decision making, and other treatment preferences. We included eligible participants aged =65 years in the Region of Southern Denmark. Five focus groups and nine in-depth interviews were conducted, in total 31 participants. We found a general willingness to discuss EOL, and experiences of the process of dying were present among all participants. Three themes emerged during the analysis: (a) Being independent is crucial for the future, (b) Handling and talking about the EOL, and (c) Conditions in Everyday Life are Significant. Life experiences seemed to affect the degree of reflection of EOL and the decision-making process. Knowing your population of interest is crucial, when developing an approach or using an advance care plan from another setting.
Aim: The aim of the study is to assess which factors are associated with self-efficacy for making these decisions in surrogates of end-stage kidney disease patients.
Materials and Methods: Cross-sectional study conducted in the hemodialysis clinic of a private hospital in Mexico City. A total of 124 surrogates of patients in hemodialysis were included in the study. Self-efficacy for decision-making was assessed with the Family Decision-Making Self-Efficacy Scale. As factors related to decision-making self-efficacy, sociodemographic data, health information, and professional help received for dealing with end-of-life issues were assessed in both patients and surrogates. Functional status and advanced directives of the patient as well as prior experience in decision-making of the surrogates were also included. Logistic regression models were used to establish the associations.
Results: The mean age of participants was 49.4 years (standard deviation: 14). Factors associated to decision-making self-efficacy were awareness of the surrogate about the terminal disease of the patient (P < 0.001), prior conversation between the surrogate and the patient about end-of-life preferences (P = 0.037), time between the patient was told dialysis was required and accepting it inferior to 1 month (P = 0.016), and visual impairment of the patient (0.040).
Conclusions: This study provides information of which factors are associated with self-effectiveness in surrogates of terminally ill renal patients so that strategies based on these considerations might be implemented in the future.
OBJECTIVE: To compare perceptions of various aspects of palliative care for doctors and nurses; and examine factors contributing to perceived quality palliative care in intensive care units (ICUs).
DESIGN: A cross-sectional survey study conducted from November to December 2013. Questionnaires used were Knowledge, Attitudinal and Experiential Survey on Advance Directives (ADs), Clarke's Quality of Palliative Care and Nurses' Participation in the end-of-life (EOL) decision-making process.
SETTING: Seven adult medical and surgical ICUs at a medical center in Northern Taiwan.
PARTICIPANTS: In total, 172 doctors and nurses who worked in adult ICU for more than 3 months.
MAIN OUTCOME MEASURES: Nurses' and doctors' perception of quality palliative care.
RESULTS: Nurses provided better care than doctors in symptom management, comfort care and spiritual care; their participation in EOL decision-making was the sole modifiable contributor to perceived quality palliative care in ICUs (ß = 0.24, P < 0.01). Both doctors and nurses had positive attitudes towards ADs (mean = 4.05/10; standard deviation [SD] = 1.38) while their knowledge of ADs was poor (mean = 29.72/40; SD = 3.00). More than half of nurses currently participated in EOL decision-making and over 80% of doctors and nurses agreed both parties should engage in EOL decision-making process. Majority of doctors (83.9%) reckoned nurses agreed with their EOL decisions while a significant percentage (40%) of nurses were uncertain about doctors’ decisions ( 2 = 12.07, P < 0.01).
CONCLUSIONS: Nurses' participation in EOL decision-making and strengthening spiritual care are imperative to rendering quality palliative care in ICUs. Potential disagreements arose during EOL decision-making between doctors and nurses; and insufficient knowledge of ADs should be addressed.
Although shared decision-making is a standard in medical care, unilateral decisions through process-based conflict resolution policies have been defended in certain cases. In patients who do not stand to receive proportional clinical benefits, the harms involved in interventions such as cardiopulmonary resuscitation seem to run contrary to the principle of non-maleficence, and provision of such interventions may cause clinicians significant moral distress. However, because the application of these policies involves taking choices out of the domain of shared decision-making, they face important ethical and legal problems, including a recent challenge to their constitutionality. In light of these concerns, we suggest a re-conceptualization of informed non-dissent as an alternative approach in cases where the application of process-based policies is being considered. This clinician-directed communication model still preserves what is valuable in such policies and salvages professional integrity, while minimising ethical and legal challenges.
PROBLEM: Little is known about how parents perceive their role or the role of health care providers (HCPs) during end-of-life decision making (EOL DM) in the context of the pediatric intensive care unit (PICU).
ELIGIBILITY CRITERIA: The authors searched CINAHL, PubMed, Ovid Medline, Web of Science, Social Science Database, PsycINFO, and Google scholar for English language studies performed in the United States related to parental perception of parental or HCP roles in EOL DM in the PICU since 2008.
SAMPLE: Eleven studies of parents and health care providers (HCPs) of critically ill children in the PICU and/or receiving inpatient pediatric palliative care, and bereaved parents of PICU patients.
RESULTS: Most parents reported belief that EOL DM is within the domain of parental role, a minority felt it was a physician's responsibility. Parental EOL DM is rooted more firmly in emotion and perception and a desire to be a 'good parent' to a child at EOL in the way they see fit than HCP recommendations or 'medical facts'. Parents need HCPs to treat them as allies, communicate well, and be trustworthy.
CONCLUSIONS: Role conflict may exist between parents and HCPs who are prioritizing different attributes of the parental role. The role of the nurse in support of parental role in the PICU is not well-elucidated in the extant literature.
IMPLICATIONS: Future research should focus on what parents need from HCPs, especially nurses, to support their parental role, and factors that facilitate the development of trust and good communication.
Family members are often involved in medical decision-making on behalf of a nursing home resident. Prospect theory provides a framework for understanding how people weigh decisions. In the current study, prospect theory concepts are used to build understanding about how family members weigh medical decisions for an NH resident diagnosed with cancer. This is a secondary analysis of qualitative interview data from 24 family members of nursing home residents. Prospect theory concepts of gain, loss, risk, and reference point were used deductively in qualitative content analysis. Themes were developed by comparing content related to these four concepts, across the transcripts from the 24 participants. Three themes comprise the main findings, including "Don't prolong this," "A good ending is a gain," and "Experience can facilitate seeing the big picture." Prospect theory concepts applied to decisions faced by family members were useful in building an understanding of what participants considered as gains, losses, risks, and reference points. Many participants framed the medical decisions within the larger context of the resident's life and concluded that jeopardizing the chance for a peaceful dying process was too high a risk. Medical interventions were selected or avoided because of the impact on a comfortable dying process; considered a gain. Advance care planning discussions and goals of care discussions can benefit by directly addressing what residents/patients, families, and health practitioners consider outcomes worth pursuing and avoiding.
OBJECTIVE: To identify factors related to decisional conflict among surrogate decision makers for home medical care (HMC) patients.
DESIGN: Prospective Cohort Study.
SETTING/SUBJECTS: For older patients receiving HMC from four different primary care clinics in Japan from January 2016 to June 2017, we studied the family member with the main potential for surrogate decision making.
MEASUREMENTS: At the baseline, surrogates filled out a baseline questionnaire on their characteristics and decision readiness, while the attending doctors provided information about the patients' characteristics. Patient-and-surrogate pairs were tracked for up to six months after the baseline or for three months in the case of death, hospitalization, or admittance to a nursing home. After this tracking, surrogates filled out a follow-up questionnaire on their decision-making experiences, including decisional conflict.
RESULTS: Of the original 159 patient-and-surrogate pairs, 121 (76.1%) responded to the follow-up questionnaire. During the follow-up period, 32 patients (26.4% of the patients followed up) died and 69 (57.0%) experienced decision making. Among surrogates who made decisions, the mean score of decisional conflict was 36.2 (standard deviation 14.7), and 43.5% were above the threshold relating to decision delay. Anticipatory guidance and discussion on the patient's care goals at the beginning of HMC were the two variables significantly associated with less decisional conflict of surrogates.
CONCLUSIONS: Families felt less conflict with surrogate decision making if they had participated in previous discussions with doctors regarding the patients' care goals. Early-stage anticipatory guidance and discussion are a good opportunity for families to prepare for surrogate decision making.
The process of advance care planning in dementia is far from straightforward; as dementia progresses, the ability to consider future thoughts and actions becomes compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position where they need to inform, or directly make, decisions on behalf of the person with dementia. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care.
AIMS: Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver's role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts.
METHODS: Qualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach.
FINDINGS: Caregivers averaged 56 years and were mostly female (95%), white (85%), and the patient's partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported "fair" or "poor" health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients' upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient's treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing "what if" scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers.
CONCLUSIONS: These findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers.