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.
Confrontés à des soins exigeants, parfois vitaux, quelle place reste-t-il pour la réflexivité et la considération de ce qui resiste en soi. La sensation d'une mise en impasse, vécue seul ou à plusieurs, peut alors traverser tous les acteurs. Dans ce contexte, un travail de conflictualité appellerait une déconstruction patiente pour chaque acteur, dans la sécurité d'un partenariat soignant-soigné et un exercice interdisciplinaire.
La conflictualité présente au sein de toute relation humaine et donc dans toute relation de soin occupe nécessairement une place aussi prépondérante dans la recherche en sciences humaines et sociales. La psychologie clinique, qui vise à donner du sens à ces divers conflits, afin non pas de les faire taire à tout prix mais bien de permettre leur expressivité, se doit aussi de s'interroger sur les conflits qu'elle porte en elle-même.
Plus que le conflit, ce qui peut être problématique, voire destructeur, c'est son mode de résolution et surtout le cadre dans lequel celui-ci se déroule. Si l'environnement est dédié à la défiance, le conflit peut être problématique. En revanche, si c'est la confiance qui prédomine alors les différents interactants savent qu'il se situe dans un cadre bienveillant et, dès lors, si les arguments échangés sont bien à discuter, ils ne portent pas en eux de charge délétère.
This case study illustrates the complex role that a physician's conscience can play in end-of-life care. We examine a case from Vermont in which a terminally ill patient requests aid-in-dying from her primary care physician under the state's "Patient Choice and Control at End of Life" Act (Act 39). The physician feels conflicted: she is opposed to prescribing death-hastening medication but does not want to abandon her patient. Much of the medical ethics literature on conscience focuses on whether health care professionals should be permitted to abstain from providing morally contested medical services. Our analysis highlights the interplay of conflicting values that inform the physician's engagement with aid-in-dying, demonstrating that the issue is often more nuanced than the question of whether or not a physician can (or should) opt out.
An unexplored aspect of conflicts and conflict resolution in the ICU at EOL is the role of advocacy in both medicine and law.
GOAL: Qualitative study to explore perspectives of SDM/patient lawyers on issues of advocacy at EOL to better understand conflicts and resolution processes.
METHODS: Purposive sampling with criterion and snowball techniques were used to recruit 11 experienced lawyers for semi-structured interviews. Interviews explored respondents' beliefs, views, and experiences with conflicts; were audio-recorded, coded inductively and iteratively following interpretive analysis. Recurring themes were identified using NVivo Qualitative Software.
RESULTS: We interviewed 11 participants and achieved conceptual saturation. Participants identified insufficient advocacy and overaggressive advocacy as major contributors to the initiation of ICU conflicts and the inhibition of resolution processes before and after the legal system is engaged. These breakdowns in advocacy contribute to challenges when conflicts arise, leading to prolongation of conflict-resolution processes and to outcomes that sometimes reflect the goals of legal advocacy rather than patient-centred goals.
CONCLUSION: This study explores legal perspective of conflict at EOL and how these perspectives can be used to inform the development of better approaches to conflict resolution.
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.
End-of-life caregiving is a highly stressful experience often fraught with conflict and tension. However, little is known about the ways family conflict manifests for informal caregivers of home hospice patients (IHCs). Framed by relational dialectics theory, the purpose of this study was to provide nurses and other health care professionals with an empirical understanding of how IHCs experience family conflict and tensions associated with caregiving. A second aim was to determine what strategies IHCs use to manage these family conflicts. Data used in this qualitative secondary analysis were originally collected as part of a randomized clinical trial of an IHC support intervention. Based on thematic analysis of data from 25 IHCs who reported family conflict, a conceptual model of caregiver resilience was developed from the themes and categories that emerged during the coding stage. Autonomy was identified as a central tension. IHCs used several strategies to address family conflict including communication, formal support, and emotional self-care.
OBJECTIVES: To develop and validate a values clarification tool, the Short Graphic Values History Tool (GVHT), designed to support person-centred decision making during serious illness.
METHODS: The development phase included input from experts and laypersons and assessed acceptability with patients/family members. In the validation phase, we recruited additional participants into a before-after study. Our primary validation hypothesis was that the tool would reduce scores on the Decisional Conflict Scale (DCS) at 1-2 weeks of follow-up. Our secondary validation hypotheses were that the tool would improve values clarity (reduce scores) more than other DCS subscales and increase engagement in advance care planning (ACP) processes related to identification and discussion of one's values.
RESULTS: In the development phase, the tool received positive overall ratings from 22 patients/family members in hospital (mean score 4.3; 1=very poor; 5=very good) and family practice (mean score 4.5) settings. In the validation phase, we enrolled 157 patients (mean age 71.8 years) from family practice, cancer clinic and hospital settings. After tool completion, decisional conflict decreased (-6.7 points, 95% CI -11.1 to -2.3, p=0.003; 0–100 scale; N=100), with the most improvement seen in the values clarity subscale (-10.0 points, 95% CI -17.3 to -2.7, p=0.008; N=100), and the ACP-Values process score increased (+0.4 points, 95% CI 0.2 to 0.6, p=0.001; 1–5 scale; N=61).
CONCLUSIONS: The Short GVHT is acceptable to end users and has some measure of validity. Further study to evaluate its impact on decision making during serious illness is warranted.
INTRODUCTION: Data-based research has rarely addressed advance directives (ADs) in community-dwelling Korean cancer survivors. The purpose of this study was to examine the relationship between AD treatment choices and decisional conflicts among low-income, home-based cancer management recipients.
METHOD: This study uses a cross-sectional, correlational design. The cancer survivors completed the questionnaires (Korean-Advance Directive model and Decisional Conflict Scale).
RESULTS: Among the 103 participants (average age 67.92 years), 56.3% had solid cancer. Hospice care was the most desired (68.9%), followed by hemodialysis (18.4%), cardiopulmonary resuscitation/ventilation support (15.5% for each), and chemotherapy (12.6%). Patients who were older, unmarried, unemployed, or underweight/obese; lived alone; or had lower education experienced greater decisional conflicts. In the multivariate analyses, no hospice preference was associated with greater decisional conflicts ( t = -2.63, p = .01).
DISCUSSION: Early integration of AD discussion with the nurse-led, home-based service for this vulnerable population could serve as a liaison for quality and continuity of cancer survivorship care.
How providers of end-of-life care perceive spirituality both within themselves and for others can directly impact their ability to provide spiritual care to patients and families. Uncertainty about spirituality can contribute to the awkwardness of spiritual care. Spiritual uncertainty includes the questions, worries, and doubts people have about the meaning, beliefs, connections, self-transcendence, and value that comprise spirituality. This article reports qualitative findings from a mixed-methods study that sought to understand spiritual uncertainty among hospice providers. Data were collected from 28 hospice team members (nurses, physicians, social workers, and expressive therapist) using focus groups, reflective journals, and one-on-one interviews. An overarching theme emerged that described the tensions perceived by providers caring for hospice patients. Those tensions were further categorized as being interpersonal, intrapersonal, and transpersonal in nature. The identification of tension as a source of strain for providers delivering spiritual care is necessary to the development of future interventions that can assist providers and patients navigating end-of-life spirituality.
In an era when healthcare has become increasingly complex and patient expectations are higher than ever before, we can find the decision-making process for patients, potentially at the end of their lives, increasingly difficult. In the shift from paternalism to patient choice, we can struggle to know what to do when faced with a patient, their family, or both requesting or demanding inadvisable, inappropriate, or futile treatments. It can feel as if we are being asked to subject patients to intrusions and interventions that 'just feel wrong'. In this article, we aim to look at how ethical frameworks, legal statute, case law, and professional guidance, as they apply in the UK, interact when we make these decisions, and we discuss some of the conflicts and challenges that such guidance pose.