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.
This article studies forgiveness and reconciliation (F/R) in patients with cancer. It focuses on the end of life, when family conflicts resurface and unfinished business challenges patients and causes spiritual distress. Forgiveness and reconciliation may intensify patient-family relationships and facilitate peace of mind and peaceful death. Existing forgiveness models and interventions focus on coping in life, yet no study has examined F/R processes until death. Our mixed-method exploratory study hypothesized that F/R processes occur in phases, repeatedly, and are spurred by approaching death. Three interdisciplinary units at a major Swiss hospital observed 50 dying patients with cancer experiencing severe conflicts with relatives, themselves, and/or with fate/God. Participant observation was combined with interpretative phenomenological analysis and descriptive statistical analysis. A semi-structured observation protocol was developed based on a 5-phase model. The protocol included space for notes (emotions, interventions, effects on dying processes). It was assessed by 20 professionals for 1 year. Analysis was supported by international interdisciplinary experts. We found that conflicts were complex and involved relational, biographical, and spiritual layers. In 62% of patients, F/R processes occurred repeatedly. Many patients died after finding F/R (22 within 48 hours). Patients indicated that imminent death, a mediating third party, acceptance, and experiences of hope motivated them to seek F/R. Although deep relationships may support F/R processes, our limited data on near-death experience/spiritual experiences restrict interpretation. Forgiveness and reconciliation processes oscillate between 5 phases: denial, crisis, experience of hope, decision, and finding F/R. Understanding F/R processes, empathy, hope, and a neutral third party may support patients in seeking forgiveness.
Context: Providing patient care at the end of a patient's life is a humbling and sacred experience for both patient and provider. Without a truthful and meaningful conversation about end-of-life care preferences, the care that is delivered may not be the care that the patient prefers.
bjectives: Determine if there is a relationship between level of training, confidence, and presence of decisional conflict in making an accurate prognosis for 2 standardized cases. Additionally, we evaluated the correctness of the prognosis as measured against survival outcomes for patients with similar diagnoses.
Methods: Decisional conflict was measured with the SURE tool, a validated 4-item tool that has been used in assessing for the presence of decisional conflict.
Results: Following analysis of data, it was found that providers with no decisional conflict were much more likely to be attendings with more than 5 years' experience. Providers were more conflicted overall when confronted with a case with a more grave prognosis. It was determined that providers with a lower level of training were more likely to have decisional conflict.
Conclusions: Provider confidence increases and decisional conflict decreases as one increases their level of training. However, the degree in which the provider is correct in their prognosis does not change as one increases their level of training. These findings have broad implications on patients, providers, and the health-care system.
Ever since medical assistance in dying (MAID) became legal in Canada in 2016, controversy has enveloped the refusal by many faith-based institutions to allow this service on their premises. In a recent article in this journal, Philip and Joshua Shadd have proposed 'changing the conversation' on this issue, reframing it as an exercise not of conscience but of an institutional right of self-governance. This reframing, they claim, will serve to show how health-care institutions may be justified in refusing to provide MAID on moral or religious grounds. I argue that it will not make it easier to justify institutional refusal, and is likely to make it harder.
BACKGROUND: Under Quebec's Act respecting end-of-life care, physicians may refuse to provide medical aid in dying because of personal convictions, also called conscientious objections. Before legalisation, the results of our survey showed that the majority of physicians were in favour of medical aid in dying (76%), but one-third (28%) were not prepared to perform it. After 18 months of legalisation, physicians were refusing far more frequently than the pre-Act survey had anticipated.
AIM: To explore the conscientious objections stated by physicians so as to understand why some of them refuse to get involved in their patients' medical aid in dying requests.
DESIGN/PARTICIPANTS: An exploratory qualitative study based on semi-structured interviews with 22 physicians who expressed a refusal after they received a request for medical aid in dying. Thematic descriptive analysis was used to analyse physicians' motives for their conscientious objections and the reasons behind it.
RESULTS: The majority of physicians who refused to participate did not oppose medical aid in dying. The reason most often cited is not based on moral and religious grounds. Rather, the emotional burden related to this act and the fear of psychological repercussions were the most expressed motivations for not participating in medical aid in dying.
CONCLUSION: The originality of this research is based on what the actual perception is of doing medical aid in dying as opposed to merely a conceptual assent. Further explorations are required in order to support policy decisions such as access to better emotional supports for providers and interdisciplinary support.
With the advent of legalized medical assistance in dying [MAiD] in Canada in 2016, nursing is facing intriguing new ethical and theoretical challenges. Among them is the concept of conscientious objection, which was built into the legislation as a safeguard to protect the rights of healthcare workers who feel they cannot participate in something that feels morally or ethically wrong. In this paper, we consider the ethical complexity that characterizes nurses' participation in MAiD and propose strategies to support nurses' moral reflection and imagination as they seek to make sense of their decision to participate or not. Deconstructing the multiple and sometimes conflicting ethical and professional obligations inherent in nursing in such a context, we consider ways in which nurses can sustain their role as critically reflective moral agents within a context of a relational practice, serving the diverse needs of patients, families, and communities, as Canadian society continues to evolve within this new way of engaging with matters of living and dying.
Les soins palliatifs ont le grand mérite d’avoir remis à l’honneur l’usage des conflits. La raison la plus évidente en est que les soins palliatifs confrontent chacun à la finitude de l’existence, au fait d’être mortel et à l’incertitude. Les soins palliatifs dans la médecine moderne, technico-scientifique, présentent une différence notable par rapport à l’accompagnement des mourants que nous connaissions à travers les écrits des philosophes, des historiens, des romanciers, des médecins, des religions. Cette différence réside dans l’idée que nous aurions acquis, maintenant, de décider de l’heure de la mort, de pouvoir en repousser l’heure ou de l’avancer. C’est en partie vrai et faux. La médecine technico-scientifique a, certes, doté l’homme d’un certain pouvoir mais aussi d’une grande illusion. Repousser l’heure de la mort renvoie au mythe de l’immortalité et de la croyance qu’un jour peut-être nous ne mourrons plus. Avancer l’heure de la mort renvoie à la question de notre toute-puissance, du suicide et du suicide assisté et avec cela la plus difficile des questions philosophiques (Camus, 1942).
Le fait est que, dans les années 1980, la prise de conscience des médecins de réanimation d’adultes et d’enfants, du fait que plus de la moitié des décès en réanimation était liée à une décision humaine, a obligé chaque soignant à affronter cette question de l’éthique de la décision et de sa responsabilité. Pendant plusieurs années, cette question avait fait l’objet d’une sorte d’omerta…
Production défensive qui permet de relâcher les tensions, l'humour permet au groupe de fonctionner autour de l'angoisse de mort commune. Elle limite ainsi l'émergence de conflits en permettant de dire autrement ce qui ne peut être entendu. L'humour a cette particularité de modifier la forme sans changer le fond. Ainsi la parole circule, les rires fusent, et les conflits pulsionnels trouvent une réponse acceptable laissant entendre l'angoisse et sa résolution au détour d'une tournure humoristique.
L'entrée en institution d'un sujet exige de ce dernier ainsi que sa famille et ses proches d'accorder un peu de confiance pour se laisser accompagner dans les soins par les soignants. Accorder sa confiance ne se fait pas sans heurts, maladresses, malentendus, conflits qui donnent cependant aux soignants et aux résidents la possibilité de trouver des points d'aménagements, des stratégies à mettre en oeuvre où chacun trouverait sa place. Passer par le conflit permet de dialectiser et d'envisager une issue, une résolution. Cependant nous sommes au coeur d'une époque où le conflit n'est parfois qu'apparence, un bruit sourd, réduit à des positions univoques, des certitudes exprimées qui empêchent la dialectique, même inconfortable, de s'installer.
Nous ne sommes pas épargnés par la rencontre de ce phénomène dans nos EHPAD et au travers de ces deux exemples cliniques, il s'agit de rendre compte du barrage fait au conflit.
Le conflit psychique se manifeste lorsque des exigences internes contraires s'opposent comme celles des pulsions de vie et des pulsions de mort. Les soins palliatifs, tissés de contradictions, de forces qui s'affrontent et d'ambivalences multiples, ne peuvent échapper au conflit. Si leur nécessité n'est plus à démontrer, la confrontation à la détresse que la déchéance, le sentiment d'indignité et l'approche de la mort génèrent reste profondément problématique.