PURPOSE: The main aim of this study was to determine the prevalence of ethical dilemmas in the end-of-life process in advanced cancer patients.
METHODS: We carried out a multicenter, cross-sectional, observational, prospective study in a cohort of cancer patients whose life expectancy was = 6 months. We recorded sociodemographic characteristics, diagnosis of cancer, symptom burden, cognitive and functional status, emotional impact, and sociofamilial risk factors. The main outcome measure was the detection of ethical dilemmas, based on the following definition: conflict in decision-making during the end-of-life process that involves the need to choose between morally acceptable opposing options, where none is clearly preferable to another.
RESULTS: We included 324 patients (mean age, 69 years; 58% men). We identified 117 dilemmas in 90 patients (27.8%). The dilemmas detected were as follows: (a) conflicts of information (adaptive denial, conspiracy of silence, information exceeding patient's desired limit), 15.7%; (b) discrepancies in proportionality (discussion on futility, rejection of treatment, withdrawal of life support measures), 16.7%; (c) unrealistic expectations about the outcome of clinical trials, 2.5%; and (d) request for euthanasia or medically assisted suicide, 1.2%. We observed a greater prevalence of ethical dilemmas in men, in patients receiving active cancer treatment, and in patients with emotional distress (p < 0.05).
CONCLUSIONS: The prevalence of ethical dilemmas during the end-of-life process in cancer patients is relevant. Most dilemmas were associated directly or indirectly with respect for patient autonomy. In this context, the communication skills of the health professionals and advanced care planning take on a key role.
COVID-19 has truly affected most of the world over the past many months, perhaps more than any other event in recent history. In the wake of this pandemic are patients, family members, and various types of care providers, all of whom share different levels of moral distress. Moral conflict occurs in disputes when individuals or groups have differences over, or are unable to translate to each other, deeply held beliefs, knowledge, and values. Such conflicts can seriously affect healthcare providers and cause distress during disastrous situations such as pandemics when medical and human resources are stretched to the point of exhaustion. In the current pandemic, most hospitals and healthcare institutions in the United States have not allowed visitors to come to the hospitals to see their family or loved ones, even when the patient is dying. The moral conflict and moral distress (being constrained from doing what you think is right) among care providers when they see their patients dying alone can be unbearable and lead to ongoing grief and sadness. This paper will explore the concepts of moral distress and conflict among hospital staff and how a system-wide provider wellness programme can make a difference in healing and health.
Although one can argue that they do not represent a radical departure from existing practices, protocols for reverse triage certainly step beyond what is ordinarily done in medicine and healthcare. Nevertheless, there seems to be some degree of moral concern regarding the ethical legitimacy of practicing reverse triage in the context of a pandemic. Such concern can be taken as a reflection of the moral antipathy some exhibit towards current practices of withdrawing treatment—that is, when withdrawal of treatment is arguably in the best interests of patients—and a rejection of the purported normative insignificance of withholding and withdrawing. Given that the relevance of the psychological attitudes of some healthcare professionals to the moral assessment of withdrawing and withholding treatment continues to be debated, it would seem that some thought should be given to the introduction and implementation of reverse triage decisions in response to a pandemic. This brief paper will consider if provision should be made for healthcare professionals to conscientiously refuse to participate in reverse triage.
Community-based palliative care services and their integration with public health systems are of considerable contemporary interest. However, the conflicts that emerge in such a complex organizational field comprising multiple stakeholders with diverse interests remain under-examined. Our analysis of community-based palliative care in Kerala identifies four ‘logic conflicts’ that indicate competing frames of reference in an organizational field. These conflicts shape decision-making and coordination and manifest as: 1) professional versus community logics, 2) centralized versus decentralized governance logics, 3) generalist versus specialist care logics, 4) charity versus rights-based logics. We also identify two mechanisms – forming coalitions and fostering plurality – by which actors manage these conflicting logics. We discuss contributions to public health palliative care conversations and implications for nurturing and sustaining care communities.
Persons with dementia are at high risk for loss of decision-making ability due to increased cognitive decline as the disease progresses. Participation in advance care planning (ACP) discussions in the early stages of dementia is crucial for end-of-life (EoL) decision-making to ensure quality of EoL care. A lack of discussions about ACP and EoL care between persons with dementia and family caregivers (FCGs), can lead to decisional conflicts when persons with dementia are in the later stages of the disease. This study explored the effects of a family-centered ACP information intervention among persons with dementia and FCGs. The study was conducted in outpatient clinics in Taiwan. Participants were dyads (n = 40) consisting of persons diagnosed with mild cognitive impairment or mild dementia and their FCGs. A one-group, pretest-posttest, pre-experimental design was employed. The intervention was provided by an ACP-trained senior registered nurse and was guided by ACP manuals and family-centered strategies. Outcome data were collected with four structured questionnaires regarding knowledge of end-stage dementia treatment, knowledge of ACP, attitude towards ACP, and EoL decisional conflict about acceptance or refusal of cardiopulmonary resuscitation, ventilators, and tracheostomy. Paired t tests compared differences between pre-intervention data and 4-weeks' post-intervention data. The intervention resulted in significant improvements among persons with dementia and FCGs for knowledge of end-stage dementia treatment (p = .008 and p < .001, respectively), knowledge of ACP (both p < .001), and significant reductions in decisional conflicts (both p < .001). Scores for positive and negative attitude toward ACP did not change for persons with dementia; however, there was a reduction in negative attitude for FCGs (p = .001). Clinical care for persons with dementia should incorporate ACP interventions that provide knowledge about EoL dementia care using family-centered care strategies that facilitate regular and continuous communication between FCGs, persons with dementia, and medical personnel to reduce decisional conflicts for EoL care.
BACKGROUND: The number of centenarians in Europe is increasing; many face health impairments. Adult children often play a key role in their care, but there is a lack of research into what it means for these caregiving relatives to be confronted for many years with their parents' end of life (EOL), dying and death as well as their own advancing age.
AIM: This study aims to analyse the challenges of caregiving adult children regarding their parents' end of life and the related burdens and barriers they report.
MATERIAL AND METHODS: Semi-structured interviews were conducted with 13 caregivers following a theory-based and tested guideline. The computer-aided coding and evaluation followed the structured content analysis approach.
RESULTS: The analysis showed three main themes: 'Confronting EOL', 'Communicating about death and dying' and 'Assisting in the terminal phase'. The respondents commented on burdensome demands and concerns about the future. Further, a strong underlying presence of intra- and interpersonal conflicts relating to EOL became apparent.
DISCUSSION: The results indicate several potential burdens for centenarians' caregiving offspring. They are confronted with a double challenge resulting from the combination of their own advanced age and experiencing the burdens of their parents' very old age. Further, some participants struggled with their own unclear perspective on the future because of the relative but unclear proximity of the parent's death. Multiple conflicts and overlapping conflict dimensions emphasise the potential of the EOL topic to influence the well-being of family caregivers and care recipients.
LIMITATIONS: The convenience sample used for the study may cause limitations, for example, the fact that persons with a formally lower educational status are not represented.
CONCLUSION: The findings suggest that interventions designed for family-related care situations should include topics like 'Finiteness and grief', 'Communicating about dying and death' and 'Decisions and dispositions at EOL'.
INTRODUCTION: End-of-life care (EOLC) is necessary for patients who are not expected to live long. Nurses have positive attitudes toward EOLC, but they encounter difficulties in practice. That situation creates conflict, which can affect burnout. It is essential to manage nurses' conflict about their ability to practice EOLC by enhancing their individual strengths. Focusing on the role of self-compassion may help to prevent burnout related to the conflict about ability to practice EOLC.
OBJECTIVE: The study aim was to assess the mediating effect of self-compassion on the association between conflict about ability to practice EOLC and burnout.
METHODS: A correlational study was conducted with emergency department nurses who practiced EOLC. Self-report measures of conflict about ability to practice EOLC, burnout, and self-compassion were obtained.
RESULTS: Negative aspects of self-compassion mediated the relationship among conflict, emotional exhaustion, and depersonalization (burnout). Self-compassion did not mediate the association between conflict and reduced personal accomplishment (burnout).
CONCLUSIONS: Negative aspects of self-compassion mediated the relationship between conflict and burnout (excluding reduced personal accomplishment). To prevent burnout, it is necessary to screen for nurses with low self-compassion and to provide opportunities to change their cognitive recognition and disclose their conflicts.
OBJECTIVES: Family conflict and family functioning were regarded as changeable factors associated with complicated grief (CG) and major depressive disorder (MDD) in the bereaved families of patients with advanced cancer, although the evidence is limited. We explored the family functioning associated with CG and MDD developing either independently or co-morbidly in the bereaved families of patients with advanced cancer who died in palliative care units (PCUs).
METHODS: This study comprised a nationwide cross-sectional questionnaire survey of bereaved family members of cancer patients who died in Japanese PCUs participating in evaluation of the quality of end-of-life care.
RESULTS: A total of 529 questionnaires (69.2%) were returned, and we analyzed a total of 458 responses. A total of 14.2% of participants were considered as having CG, 22.5% as having moderate to severe depression, and 9.6% as having co-morbid symptoms. Multivariate logistic regression analysis revealed that many family members insulted or yelled at one another (odd ratio (OR): 2.99, p=0.046; OR:2.57, p=0.033), and conflict regarding what is meant by a good death (OR:3.60, p=0.026; OR:4.06, p=0.004) was significantly positively associated with CG, MDD, and co-morbid symptom.
CONCLUSIONS: Specific family conflicts may increase the incidence of CG, MDD, and co-morbid symptoms in the bereaved families of patients with advanced cancer. Our results may encourage health care providers to approach discussions about end-of-life issue with the patient and their family in advance, especially focusing on what is considered a good death for the patient, which may prevent or resolve the family conflict.
The Voluntary Assisted Dying Act 2017 (Vic) came into effect in Victoria on 19 June 2019. We present the case of an inpatient death under the voluntary assisted dying Act in our health service and describe a short case history followed by a discussion examining two relevant topics related to voluntary assisted dying and palliative care: conscientious objection and the complexity of palliative care involvement.
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?
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.
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.
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.