When someone is terminally ill, it is often a very stressful time for the dying person and their family. It would not be unusual for intra-family conflict, involving one or more family members and even the dying person, to occur. However, this type of conflict has not been identified as an end-of-life issue needing to be noticed and addressed or prevented when possible. This lack of attention could be because it is not known how common or how impactful this type of conflict is. A scoping research literature review was conducted for available 2004–2019 evidence on the incidence or prevalence of intra-family conflict, factors contributing to it or causing it, and the outcomes or impact of it. A search for published peer-review articles identified 18 research reports for a scoping review. The 18 studies, all conducted in developed countries, revealed intra-family conflict is often present; and with a range of harmful effects for the dying person, the family as a whole or individual family members, and other persons and organizations. The identified factors contributing to or predisposing intra-family conflict were grouped into three categories: (a) family disagreements over curative treatment and/or end-of-life care and decisions, (b) previous family conflict and other family dynamic matters, and (c) the dying process itself. The evidence identified through this scoping review, although relatively minimal, should be useful for planning future research and for raising awareness of end-of-life intra-family conflict to improve social services and palliative programs or services.
It has historically been a crime in Canada to provide assistance to someone in ending their own life, however, this paradigm was inverted in 2015 when the Supreme Court of Canada (SCC) ruled that restrictions on this practice, within certain defined parameters, violated the right to life, liberty, and security of the person. Subsequently, recent legal and policy decisions have highlighted the issue of how to balance the rights of individuals to access MAiD with the rights of care providers to exercise conscience-based objections to participation in this process. We argue that there is significant harm and ethical hazard in disregarding individual and institutional rights to conscientious objection and since measures less coercive than the threat of regulatory or economic sanctions do exist, there should be no justification for such threats in Canada’s health care systems.
This case raises the difficult question of how to respond to patients who appear to lack decision-making capacity, yet retain limited communication that allows them to state a preference for life-sustaining treatment that conflicts with the choice of their surrogate. I argue that the patient’s preference should be honored, even though the patient lacks decision-making capacity, and the preference contradicts the wishes of the surrogate.
This paper argues that healthcare aims at the good of health, that this pursuit of the good necessitates conscience, and that conscience is required in every practical judgement, including clinical judgment. Conscientious objection in healthcare is usually restricted to a handful of controversial ends (e.g. abortion, euthanasia, contraception), yet the necessity of conscience in all clinical judgements implies the possibility of conscientious objection to means. The distinction between conscientious objection to means and ends is explored and its implications considered. Based on this, it is suggested that conscientious objection, whether to means or ends, occurs when a proposed course of action comes into irreconcilable conflict with the moral principle 'do no harm'. It is, therefore, concluded that conscientious objection in healthcare can be conceived as a requirement of the moral imperative to do no harm, the right to refuse to harm in regard to health.
In a commentary in the New England Journal of Medicine (NEJM) on a ruling of the Texas Supreme Court in Miller v. HCA, George Annas, the NEJM legal analyst, observed, “One bioethical issue is as intractable today as 30 years ago when the topic was first publicly discussed: the extent of parental authority to refuse life-sustaining medical treatment for an extremely premature infant”. The case involved the resuscitation of a 23-week 615 g infant over parental objections. It took years to resolve the case in the legal system. Nearly two decades later, we might inquire whether neonatologists and other critical care practitioners have greater comfort in dealing with the issue of parental objection?
BACKGROUND/OBJECTIVES: Physician Orders for Life-Sustaining Treatment (POLST) is recommended as a preferred practice for advance care planning with seriously ill patients. Decision aids can assist patients in advance care planning, but there are limited studies on their use for POLST decisions. We hypothesized that after viewing a POLST video, decision aid participants would demonstrate increased knowledge and satisfaction and decreased decisional conflict.
DESIGN: Pre-and postintervention with no control group.
SETTING/PARTICIPANTS: Fifty community-dwelling adults aged 65 and older asked to complete a POLST based on a hypothetical condition.
INTERVENTIONS: Video decision aid for Sections A and B of the POLST form.
MEASUREMENTS: Pre- and postintervention participant knowledge, decisional satisfaction, decisional conflict, and acceptability of video decision aid.
RESULTS: Use of the video decision aid increased knowledge scores from 11.24 ± 2.77 to 14.32 ± 2.89, P < .001, improved decisional satisfaction 10.14 ± 3.73 to 8.70 ± 3.00, P = .001, and decreased decisional conflict 12 ± 9.42 to 8.15 ± 9.13, P < .001. All participants reported that they were comfortable using the video decision aid, that they would recommend it to others, and that it clarified POLST decisions.
CONCLUSIONS: Participants endorsed the use of a POLST video decision aid, which increased their knowledge of POLST form options and satisfaction with their decisions, and decreased their decisional conflict in POLST completion. This pilot study provides preliminary support for the use of video decision aids for POLST decision-making. Future research should evaluate a decision aid for the entire POLST form and identify patient preferences for implementing POLST decision aids into clinical practice.
Delivery of end-of-life care has gained prominence in the UK, driven by a focus upon the importance of patient choice. In practice choice is influenced by several factors, including the guidance and conduct of healthcare professionals, their different understandings of what constitutes 'a good death', and contested ideas of who is best placed to deliver this. We argue that the attempt to elicit and respond to patient choice is shaped in practice by a struggle between distinct 'institutional logics'. Drawing on qualitative data from a two-part study, we examine the tensions between different professional and organisational logics in the delivery of end-of-life care. Three broad clusters of logics are identified: finance, patient choice and professional authority. We find that the logic of finance shapes the meaning and practice of 'choice', intersecting with the logic of professional authority in order to shape choices that are in the 'best interest' of the patient. Different groups might be able to draw upon alternative forms of professionalism, and through these enact different versions of choice. However, this can resemble a struggle for ownership of patients at the end of life, and therefore, reinforce a conventional script of professional authority.
The literature on conscientious objection in medicine presents two key problems that remain unresolved: (a) Which conscientious objections in medicine are justified, if it is not feasible for individual medical practitioners to conclusively demonstrate the genuineness or reasonableness of their objections (“the justification problem”)? (b) How does one respect both medical practitioners’ claims of conscience and patients’ interests, without leaving practitioners complicit in perceived or actual wrongdoing (“the complicity problem”)? My aim in this paper is to offer a new framework for conscientious objections in medicine, which, by bringing medical professionals’ conscientious objection into the public realm, solves the justification and complicity problems. In particular, I will argue that: (a) an “Uber Conscientious Objection in Medicine Committee” (“UCOM Committee”)—which includes representatives from the medical community and from other professions, as well as from various religions and from the patient population—should assess various well-known conscientious objections in medicine in terms of public reason and decide which conscientious objections should be permitted, without hearing out individual conscientious objectors; (b) medical practitioners should advertise their (UCOM Committee preapproved) conscientious objections, ahead of time, in an online database that would be easily accessible to the public, without being required, in most cases, to refer patients to non-objecting practitioners.
This paper follows on from a brief debate about the role of conscientious objection in healthcare, where the issue arose as to whether conscientious objection is (or can) be a tool of resistance against systemic injustice. The paper contributes to this debate by highlighting that some authors generally opposed to conscientious objection in healthcare have shown some support to this idea. Perhaps if there is one area in which all can agree, it is that in healthcare conscientious objection should be allowed so as to prevent cases of systemic injustice.
Background: There is no evidence on effectiveness of Advance care planning (ACP) among heart failure (HF) patients. We examined the effect of an ACP program in facilitating EOL care consistent with HF patients’ preferences (primary aim), and on their decisional conflict, discussion with surrogates, illness understanding, anxiety, depression and quality of life (secondary aims).
Methods: We randomized 282 HF patients to receive ACP (n=93) or usual care (control arm, n=189). Primary outcomes were assessed among deceased (n=89) and secondary outcomes from baseline and 6 follow-ups conducted every 4 months.
Results: Deceased patients in ACP arm were no more likely than those in control arm to have wishes followed for EOL treatments (ACP: 35%, Control: 44%; p=0.47), or place of death (ACP: 52%, Control: 51%; p-value=1.00). A higher proportion in ACP arm had wishes followed for cardiopulmonary resuscitation (ACP: 83%, Control: 62%; p=0.12). At first follow-up, ACP patients had lower decisional conflict (ß=-10.8, p <0.01) and were more likely to discuss preferences with surrogates (ß=1.3, p=0.04). ACP did not influence other outcomes.
Conclusion: This trial did not confirm that our ACP program was effective in facilitating EOL care consistent with their preferences. The program led to short-term improvements in the decision-making.
Background: Shared decision-making at end of life (eol) requires discussions about goals of care and prioritization of length of life compared with quality of life. The purpose of the present study was to describe patient and oncologist discordance with respect to goals of care and to explore possible predictors of discordance.
Methods: Patients with metastatic cancer and their oncologists completed an interview at study enrolment and every 3 months thereafter until the death of the patient or the end of the study period (15 months). All interviewees used a 100-point visual analog scale to represent their current goals of care, with quality of life (scored as 0) and survival (scored as 100) serving as anchors. Discordance was defined as an absolute difference between patient and oncologist goals of care of 40 points or more.
Results: The study enrolled 378 patients and 11 oncologists. At baseline, 24% discordance was observed, and for patients who survived, discordance was 24% at their last interview. For patients who died, discordance was 28% at the last interview before death, with discordance having been 70% at enrolment. Dissatisfaction with eol care was reported by 23% of the caregivers for patients with discordance at baseline and by 8% of the caregivers for patients who had no discordance (p = 0.049; f = 0.20).
Conclusions: The data indicate the presence of significant ongoing oncologist–patient discordance with respect to goals of care. Early use of a simple visual analog scale to assess goals of care can inform the oncologist about the patient’s goals and lead to delivery of care that is aligned with patient goals.
Les relations avec les autres sont complexes et potentiellement conflictuelles en fonction de la place ou du rôle qu'il va nous être donné de jouer dans telle ou telle circonstance. Du fait de schémas comportementaux et affectifs chargés en émotion, il est difficle pour la raison d'arriver à faire la part des choses. De plus, la raison, même lorsqu'elle analyse et tente de discerner objectivement se retrouve vite impuissante pour comprendre les situations paradoxales.
La confiance est un concept qui illustre parfaitement, toute l'emprise émotionnelle de l'être humain et tous les vains mais non nécesaires efforts de la raison à cerner la réalité d'une situation. Nous avons isolé quelques qualités "supérieures" qui permettent de sentir ce qu'est la confiance et ainsi de trouver la voie d'une relation pacifiée avec l'autre en dépit de l'hostilité du contexte. Il s'agit notamment de la réciprocité, de la spontanéité, d'une sincère humilité mais aussi de la considération de l'unicité de chaque personne.
Background: Medical Assistance in Dying (MAID) in Canada came into effect in 2016 with the passing of Bill C-14. As patient interest and requests for MAID continue to evolve in Canada, it is important to understand the attitudes of future providers and the factors that may influence their participation. Attitudes towards physician hastened death (PHD) in general and the specific provision of MAID (e.g., causing death by lethal prescription or injection) are unknown among Canadian residents. This study examined residents’ attitudes towards PHD and MAID, and identified factors (e.g., demographics, clinical exposure to death and dying) that may influence their decision to participate in PHD and provide MAID.
Methods: A cross-sectional survey was adapted from prior established surveys on MAID to reflect the Canadian setting. All Canadian family medicine programs were invited to participate. The survey was distributed between December 2016 and April 2017. Analysis of the results included descriptive statistics to characterize the survey participants and multivariable logistic regressions to identify factors that may influence residents’ attitudes towards PHD and MAID.
Results: Overall, 247 residents from 6 family medicine training programs in Canada participated (response rate of 27%). While residents were most willing to participate in treatment withdrawal (52%), active participation in PHD (41%) and MAID by prescription of a lethal drug (31%) and lethal injection (24%) were less acceptable. Logistic regressions identified religion as a consistent and significant factor impacting residents’ willingness to participate in PHD and MAID. Residents who were not strictly practicing a religion were more likely to be willing to participate in PHD (OR = 17.38, p < 0.001) and MAID (lethal drug OR = 10.55, p < 0.01, lethal injection OR = 8.54, p < 0.05). Increased clinical exposure to death and dying crudely correlated with increased willingness to participate in PHD and MAID, but when examined in multivariable models, only a few activities (e.g., declaring death, completing a death certificate) had a statistically significant association. Other significant factors included the residents’ sex and location of training.
Conclusions: Residents are hesitant to provide MAID themselves, with religious faith being a major factor impacting their decision.
Conscientious objection has become a divisive topic in recent bioethics publications. Discussion has tended to frame the issue in terms of the rights of the healthcare professional versus the rights of the patient. However, a rights-based approach neglects the relational nature of conscience, and the impact that violating one's conscience has on the care one provides. Using medical assistance in dying as a case study, we suggest that what has been lacking in the discussion of conscientious objection thus far is a recognition and prioritising of the relational nature of ethical decision-making in healthcare and the negative consequences of moral distress that occur when healthcare professionals find themselves in situations in which they feel they cannot provide what they consider to be excellent care. We propose that policies that respect the relational conscience could benefit our healthcare institutions by minimising the negative impact of moral distress, improving communication among team members and fostering a culture of ethical awareness. Constructive responses to moral distress including relational cultivation of moral resilience are urged.
Contrary to expectations of joint decision-making, a substantial minority of older married couples report only one spouse possessing an advance directive. Using Health and Retirement Study data, the authors examined advance directive discordance among heterosexual married couples in which at least one spouse had completed an advance directive. It was predicted that spouses who differed in age, self-rated health, or race/ethnicity would be more apt to adopt individualistic as opposed to relational motivational stances, resulting in higher odds of nonmatching advance directive status. Heterogamy did not account for discordance, but couples in which one or both spouses attended some college were more likely to report advance directive concordance. In contrast, couples in which one or both spouses were non-White were more likely to display advance directive discordance. Study results raise concerns about the effectiveness and reach of advance care planning promotion efforts among low-education and non-White older married adults.
The opportunity for a critically ill patient to be an organ donor depends on a complex interplay of factors (the Donation Process), one of which is the treating medical team's perspective of the importance and priority of donation during end-of-life care. Medical providers frequently are hesitant to administer treatments to preserve organ function in patients whose death is imminent for fear of invoking a conflict of interest. The basis of the perceived conflict is that organ donation is a process done for the sole benefit of organ transplant recipients and not for the donor, and therefore care directed toward donation prior to death is not for the donor patient's benefit. In this report, it is argued that the Donation Process is indeed a patient-centered process for the potential organ donor, and that organ donation serves the donor's best interests. In addition, key elements of the Donation Process are described.
With mounting empirical evidence that interpersonal closeness and conflict with the deceased prior to death are significant predictors of grief reactions following loss, accurate empirical examination of these two constructs is of high importance. Despite the utility of the Quality of Relationships Inventory (QRI) in numerous domains of research, the original instrument was not constructed with a predeath, mourner–decedent relationship in mind. Therefore, this study clarified the factor structure of a modified QRI focusing on major dimensions of the predeath relationship with the deceased—dynamics that could have strong implications for the survivor’s bereavement trajectory. An exploratory factor analysis of 386 bereaved adults revealed two salient factors, deemed closeness and conflict. These results suggest that the modified bereavement version of the QRI, designated the Quality of Relationships Inventory–Bereavement version, is well positioned to advance research in thanatology, with possible limitations noted in the range of relationships to which it is applicable.
BACKGROUND: Controversies arise over abortion, assisted dying and conscientious objection (CO) in healthcare. The purpose of the study was to examine the relationship between attitudes towards these bioethical dilemmas, and secularity and religiosity.
METHOD: Data were drawn from a 2017 web-based survey of a representative sample of 1615 Norwegian adults. Latent moderated structural equations modelling was used to develop a model of the relationship between attitudes.
RESULTS: The resulting model indicates that support for abortion rights is associated with pro-secular attitudes and is a main "driver" for support for assisted dying and opposition to conscientious objection.
CONCLUSIONS: This finding should be regarded as a hypothesis which ought to be tested in other populations. If the relationship is robust and reproduced elsewhere, there are important consequences for CO advocates who would then have an interest in disentangling the debate about CO from abortion; and for health systems who ought to consider carefully how a sound policy on CO can safeguard both patient trust in the services and the moral integrity of professionals. It is suggested that if religiosity wanes and pro-secular and pro-abortion attitudes become more widespread, support for CO might decline, putting into question whether present policies of toleration of conscientious refusals will remain acceptable to the majority.
Doctors are required to notify Child Protective Services (CPS) if parents do not provide appropriate medical care for their children. But criteria for reporting medical neglect are vague. Which treatments properly fall within the realm of shared decision-making in which parents can decide whether to accept doctors' recommendations? Which treatments are so clearly in the child's interest that it would be neglectful to refuse them? When to report medical neglect concerns to CPS may be controversial. It would seem inhumane to allow a child to suffer because of parental refusal to administer proper analgesia. In this ethics rounds, we present a case of an adolescent with chronic pain who is terminally ill. Her parents were not adherent to recommended analgesia regimens. Her palliative care team had to decide whether to report the case to CPS.
Saving lives is the first priority in emergency departments. However, it is important to provide end-of-life care (EOLC) for patients and their families in these departments when the patient's life cannot be saved. Existing work reporting the obstacles and difficulties of nursing practice has found that the perceptions of nurses who provide EOLC include distress and conflict. The primary aims of this study were (i) to clarify the structure of the conflict experienced by nurses providing EOLC in emergency departments and (ii) to explore factors influencing this experience of conflict. A questionnaire survey was conducted among nurses working in emergency departments in Japan. The participants were sampled using a random sampling design. In total, 290 (55.3%) nurses responded to the survey and 288 (55.0%) responses were usable for the analysis. Seven components comprising 31 items were identified: (1) conflict about ability to practice EOLC; (2) conflict about relationships with the medical team; (3) conflict about the environment for EOLC; (4) conflict about decision making; (5) conflict about family nursing; (6) conflict about patients' pain; and (7) conflict about medical limitations. The nurses' individual backgrounds and support systems were found to influence their experience of conflict. To support nurses providing EOLC in emergency departments, we need to understand the conflict they experience, including how their backgrounds affect this experience, and construct a system that incorporates support from the specialized field of EOLC.