BACKGROUND: A recent randomized trial of bereaved family members of patients who died in an intensive care unit identified symptoms of depression and posttraumatic stress in recipients of semistructured condolence letters.
OBJECTIVES: To explore family member and clinician experiences with receiving or sending handwritten sympathy cards upon the death of patients involved in a personalized end-of-life intervention, the 3 Wishes Project.
METHODS: Interviews and focus groups were held with 171 family members and 222 clinicians at 4 centers to discuss their experiences with the 3 Wishes Project. Interview transcripts were searched to identify participants who discussed sympathy cards. Data related to sympathy cards were independently coded by 2 investigators through conventional content analysis.
RESULTS: Sympathy cards were discussed during 32 interviews (by 25 family members of 21 patients and by 11 clinicians) and 2 focus groups (8 other clinicians). Family members reported that personalized sympathy cards were a welcome surprise; they experienced them as a heartfelt act of compassion. Clinicians viewed cards as an opportunity to express shared humanity with families, reminding them that they and their loved one were not forgotten. Signing cards allowed clinicians to reminisce individually and collectively with colleagues. Family members and clinicians experienced sympathy cards as a meaningful continuation of care after a patient's death.
CONCLUSIONS: Inviting clinicians who cared for deceased patients to offer personalized, handwritten condolences to bereaved family members may cultivate sincere and individualized expressions of sympathy that bereaved families appreciate after the death of patients involved in the 3 Wishes Project.
AIMS AND OBJECTIVES: The aim was to explore how nurses experience compassionate care for patients with cancer and family caregivers in different phases of the palliative pathway.
BACKGROUND: Compassion is fundamental to palliative care and viewed as a cornerstone of high-quality care provision. Healthcare authorities emphasize that patients should have the opportunity to stay at home for as long as possible. There are, however, care deficiencies in the palliative pathway.
DESIGN: This study employed a qualitative design using focus groups and a hermeneutic approach.
METHODS: Four focus groups with three to seven female nurses in each group were conducted in Mid-Norway in 2018. Nurses' ages ranged from 28-60 years (mean age = 45 years), and they were recruited through purposive sampling (N = 21). Compassionate care was chosen as the theoretical framework. Reporting followed the COREQ guidelines.
RESULTS: Three themes expressing compassionate care related to different phases of the pathway were identified: (a) information and dialogue, (b) creating a space for dying and (c) family caregivers' acceptance of death.
CONCLUSIONS: This study showed that it was crucial to create a space for dying, characterized by trust, collaboration, good relationships, empathy, attention, silence, caution, slowness, symptom relief and the absence of noise and conflict.
RELEVANCE TO CLINICAL PRACTICE: The quality of compassion possessed by individual practitioners, as well as the overall design of the healthcare system, must be considered when creating compassionate care for patients and their family caregivers. Nursing educators and health authorities should pay attention to the development of compassion in education and practice. Further research should highlight patients' and family caregivers' experiences of compassionate care and determine how healthcare systems can support compassionate care.
Les mesures de confinement qui prévalent dans plus d'une centaine de pays touchés par la pandémie de COVID-19 ont bouleversé de manière tragique l'accompagnement des personnes en fin de vie et le processus de deuil de leurs proches aidants. Dans cet article, nous recensons les écrits sur le deuil et analysons les conséquences potentielles du contexte de pandémie sur l'expérience des individus endeuillés. Ensuite, nous explorons les modalités de soutien alternatives qui s'offrent aux personnes éprouvées par la perte d'un proche en raison de la pandémie. Puis, en nous appuyant sur la littérature répertoriée et sur le modèle des communautés compatissantes, nous présentons le projet "J'accompagne", dont la mission est de créer une communauté virtuelle de soutien autour des proches aidants et des endeuillés par la COVID-19.
In medical practice, physicians are often faced with tough ethical and moral dilemmas, one such example is the reoccurring conflict between a patient’s hope and the truth. This paper explores two ethical dilemmas centered on compassion and the reduction of suffering: truth-telling with terminal patients and the clinical use of placebos. In each case the disclosure of truthful information could interfere with hope and suffering relief.
Background: There is little concrete guidance on how to train current and future healthcare providers (HCPs) in the core competency of compassion. This study was undertaken using Straussian grounded theory to address the question: “What are healthcare providers’ perspectives on training current and future HCPs in compassion?”
Methods: Fifty-seven HCPs working in palliative care participated in this study, beginning with focus groups with frontline HCPs (n = 35), followed by one-on-one interviews with HCPs who were considered by their peers to be skilled in providing compassion (n = 15, three of whom also participated in the initial focus groups), and end of study focus groups with study participants (n = 5) and knowledge users (n = 10).
Results: Study participants largely agreed that compassionate behaviours can be taught, and these behaviours are distinct from the emotional response of compassion. They noted that while learners can develop greater compassion through training, their ability to do so varies depending on the innate qualities they possess prior to training. Participants identified three facets of an effective compassion training program: self-awareness, experiential learning and effective and affective communication skills. Participants also noted that healthcare faculties, facilities and organizations play an important role in creating compassionate practice settings and sustaining HCPs in their delivery of compassion.
Conclusions: Providing compassion has become a core expectation of healthcare and a hallmark of quality palliative care. This study provides guidance on the importance, core components and teaching methods of compassion training from the perspectives of those who aim to provide it—Healthcare Providers—serving as a foundation for future evidence based educational interventions.
Compassion is deemed a "basic social emotion" (Nussbaum) and decreed a National Health Service core value-yet, what does 'compassion' really mean? Moreover, why is it so important, how can we deliver it best and how do we measure achievement here? This essay will argue that compassion stands apart from other forms of interpersonal engagement as a deeply human recognition of another's suffering which inherently motivates action to do something about this. There are two inextricable elements here: the role of suffering, and the resultant call to action it motivates.The role of compassion pivots on suffering, and thus, our interpretation of suffering and what we consider its upstream cause: the problem to be fixed. Palliative medicine here stands apart, priding itself on the holistic care of what is important to the patient; thus, the symptoms problematic to the patient are the problem, rather than the underlying cause per se.Compassion drives motivation to act; medicine equips us with the tools by which we can respond to this. Thus, compassion has been described as a 'calling' to healthcare for many who join the profession, and perhaps it is when these tools seem to fail that compassion fatigue takes hold. Though this is beyond the scope of this essay, compassion fatigue is considered a form of burnout directly related to the experiences of a caregiver. Thus, compassion is central, and its outcomes stem first from our perspective of the issue at hand and second from our ability to drive change. The ability to recognise suffering in another and be motivated to help has relevance far beyond work in palliative medicine; perhaps this form of interpersonal engagement extends to humanity itself.
Background: The 3 Wishes Project is a semistructured program that improves the quality of care for patients dying in the intensive care unit by eliciting and implementing wishes. This simple intervention honors the legacy of patients and eases family grief, forging human connections between family members and clinicians.
Aim: To examine how the 3 Wishes Project enables collective patterns of compassion between patients, families, clinicians, and managerial leaders in the intensive care unit.
Design: Using a qualitative descriptive approach, interviews and focus groups were used to collect data from family members of dying patients, clinicians, and institutional leaders. Unconstrained directed qualitative content analysis was performed using Organizational Compassion as the analytic framework.
Setting/participants: Four North American intensive care units, participants were 74 family members of dying patients, 72 frontline clinicians, and 20 managerial leaders.
Results: The policies and processes of the 3 Wishes Project exemplify organizational compassion by supporting individuals in the intensive care unit to collectively notice, feel, and respond to suffering. As an intervention that enables and empowers clinicians to engage in acts of kindness to enhance end-of-life care, the 3 Wishes Project is particularly well situated to encourage collective responses to suffering and promote compassion between patients, family members, and clinicians.
Conclusions: Examining the 3 Wishes Project through the lens of organizational compassion reveals the potential of this program to cultivate the capacity for people to collectively notice, feel, and respond to suffering. Our data document multidirectional demonstrations of compassion between clinicians and family members, forging the type of human connections that may foster resilience.
Hospice volunteers are a high-risk group for anxiety and depression owing to their frequent exposure to patients at the end of life and their subsequent deaths. Resilience is known to be a powerful factor that affects the occurrence of anxiety and depression; however, research on this subject is scarce. We investigated the relationship of resilience with anxiety or depression in hospice volunteers. A total of 145 volunteers were included in the analysis. Participants completed self-reported scales, including the Korean version of the Connor-Davidson Resilience Scale, the State-Trait Anxiety Inventory, Patient Health Questionnaire-9, and the Professional Quality of Life Scale version 5. Pearson correlation coefficients were analyzed to identify the relationship of compassion satisfaction and compassion fatigue with anxiety or depression. A PROCESS macro mediation analysis was used to investigate the mediation effects of compassion satisfaction and compassion fatigue on the relationship between resilience and anxiety or depression. There were significant associations of compassion satisfaction and compassion fatigue with anxiety and depression. The relationship between resilience and anxiety/depression was mediated by compassion fatigue, which had indirect effects on anxiety and depression. Efforts to reduce compassion fatigue and increase resilience could help prevent anxiety and depression in hospice volunteers.
Background: Despite the body of literature regarding the varying definition of compassion, there appears a lack of literature pertaining to the meaning of compassion from the perspective of health care professionals working in palliative care settings.
Objective: The study aimed to explore how health care professionals working in palliative care settings view and/or understand the construct of compassion.
Methods: A qualitative approach using semistructured interviews was used. Interviews were conducted with eighteen health care professionals working in pediatric, adult, and aged palliative care settings. Interviews transcripts were thematically analyzed.
Results: Thematic analysis identified four main interrelated themes and supplementary subthemes. Health care professionals working in palliative care settings identified their perception of the (1) meaning of compassion, (2) importance of providing compassionate care, (3) barriers to providing compassionate care, and (4) facilitating compassionate care.
Conclusions: This study presents a novel understanding of the components of compassion from the perspective of health care professionals working in palliative care. While there is need for future research, important areas of improvement include increased resourcing, reducing time pressures, and education within palliative care settings. This will enable the fostering of compassionate care to patients, as well as enhanced well-being both professionally and personally for health care providers delivering such care.
BACKGROUND, AIM, AND HYPOTHESIS: This randomized controlled trial aimed to compare the impact of a physician's attire on the perceptions of patients with cancer of compassion, professionalism, and physician preference. Our hypothesis was that patients would perceive the physician with formal attire as more compassionate than the physician wearing casual attire.
MATERIALS AND METHODS: One hundred five adult follow-up patients with advanced cancer were randomized to watch two standardized, 3-minute video vignettes with the same script, depicting a routine physician-patient clinic encounter. Videos included a physician in formal attire with tie and buttoned-up white coat and casual attire without a tie or white coat. Actors, patients, and investigators were all blinded to the purpose and videos watched, respectively. After each video, patients completed validated questionnaires rating their perception of physician compassion, professionalism, and their overall preference for the physician.
RESULTS: There were no significant differences between formal and casual attire for compassion (median [interquartile range], 25 [10-31] vs. 20 [8-27]; p = .31) and professionalism (17 [13-21] vs. 18 [14-22]; p = .42). Thirty percent of patients preferred formal attire, 31% preferred casual attire, and 38% had no preference. Subgroup analysis did not show statistically significant differences among different cohorts of age, sex, marital status, and education level.
CONCLUSION: Doctors' attire did not affect the perceptions of patients with cancer of physician's level of compassion and professionalism, nor did it influence the patients' preference for their doctor or their trust and confidence in the doctor's ability to provide care. There is a need for more studies in this area of communications skills.
Clinical trial identification number. NCT03168763
IMPLICATIONS FOR PRACTICE: The significance of physician attire as a means of nonverbal communication has not been well characterized. It is an important element to consider, as patient preferences vary geographically, are influenced by cultural beliefs, and may vary based on particular care settings. Previous studies consisted of nonblinded surveys and found increasing confidence in physicians wearing a professional white coat. Unfortunately, there are no randomized controlled trials, to the authors' knowledge, to confirm the survey findings. In this randomized, blinded clinical trial the researchers found that physician's attire did not affect patients' perception of the physician's level of compassion and professionalism. Attire also did not influence the patients' preferences for their doctor or their trust and confidence in the doctor's ability to provide care.
BACKGROUND: Although compassionate care is considered a cornerstone of quality palliative care, there is a paucity of valid and reliable measures to study, assess, and evaluate how patients experience compassion/compassionate care in their care.
OBJECTIVE: The aim was to develop a patient-reported compassion measure for use in research and clinical practice with established content-related validity evidence for the items, question stems, and response scale.
METHODS: Content validation for an initial 109 items was conducted through a two-round modified Delphi technique, followed by cognitive interviews with patients. A panel of international Subject Matter Experts (SMEs) and a Patient Advisory Group (PAG) assessed the items for their relevancy to their associated domain of compassion, yielding an Item-level Content Validity Index (I-CVI), which was used to determine content modifications. The SMEs and the PAG also provided narrative feedback on the clarity, flow, and wording of the instructions, questions, and response scale, with items being modified accordingly. Cognitive interviews were conducted with 16 patients to further assess the clarity, comprehensibility, and readability of each item within the revised item pool.
RESULTS: The first round of the Delphi review produced an overall CVI of 72% among SMEs and 80% among the PAG for the 109 items. Delphi panelists then reviewed a revised measure containing 84 items, generating an overall CVI of 84% for SMEs and 86% for the PAG. Sixty-eight items underwent further testing via cognitive interviews with patients, resulting in an additional 14 items being removed.
CONCLUSIONS: Having established this initial validity evidence, further testing to assess internal consistency, test-retest reliability, factor structure, and relationships to other variables is required to produce the first valid, reliable, and clinically informed patient-reported measure of compassion.
BACKGROUND: Compassion fatigue refers to the emotional and physical exhaustion felt by professionals in caring roles, whereas compassion satisfaction encompasses the positive aspects of helping others. Levels of compassion satisfaction and fatigue have been found to be inconsistent in palliative care professionals, which could have serious implications for patients, professionals and organisations.
OBJECTIVES: This study explored the experiences of clinical psychologists working in palliative care, all worked with adults with cancer, to gain an understanding of the impact this work has on their self and how they manage this.
METHODS: A qualitative approach was taken, using semi-structured interviews and interpretative phenomenological analysis.
RESULTS: Three superordinate themes were identified: commitment, existential impact on the self and the oracle. The participants' experiences were characterised by the relationship between themselves and their patients, the influence of working in palliative services on their world view and the impact of organisational changes. Differences between working as a clinical psychologist in palliative care versus non-palliative settings were considered.
CONCLUSIONS: Professionals working in palliative care should be supported to reflect on their experiences of compassion and resilience, and services should provide resources that facilitate staff to practice positive self-care to maintain their well-being.
Ce n'est pas le suicide, la rationalité ou la liberté dont il serait parfois l'expression, qui est ici mon objet, mais l'appréciation de la nature de l'aide apportée à quiconque réclame assistance au suicide. Il s'agit bien de l'assistance au suicide et non de l'euthanasie, car ces deux situations, qui présentent des similitudes, doivent être différenciées : fournir à une personne les moyens de se supprimer n'est pas la supprimer. Dans le cas du suicide assisté, le tiers n'occupe pas la même place que dans l'euthanasie puisqu'il met à disposition le produit toxique destiné à être absorbé par le patient au lieu de pratiquer lui-même l'injection létale. Lors d'un geste euthanasique, un tiers est nécessairement présent et c'est lui qui met fin aux jours de la personne. Ce n'est pas le cas du suicide assisté où le tiers peut être absent.
Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs.
Objective: the goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers ("parents") across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions, as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting.
Methods: This was a qualitative study utilizing semistructured interviews of bereaved parents of children who were enrolled in a pediatric HBHPC program at the three sites from 2012 to 2016 and parents of children who were currently enrolled in these programs for at least a year.
Results: Parent-prioritized thematic codes mapped to 9 of the 10 provider-prioritized domains of quality HBHPC; none mapped to the domain "Ethical and Legal Aspects of Care." Although most of the provider-prioritized domains are pertinent to parents, parents defined these domains differently, deepening our understanding and perspective of quality within each domain. An 11th domain, Compassionate Care, was created and defined based on emergent themes.
Conclusions: Parent/caregiver-prioritized domains of quality in pediatric HBHPC map closely to provider-prioritized domains, but parents define these domains differently. Parents also prioritize Compassionate Care as a new domain of quality in pediatric HBHPC. Measuring the quality of care provided in HBHPC programs through this broader perspective should enable the selection of measures which are truly patient- and family-centered.
A death with dignity is influenced by the quality of care offered to patients. The objective of this study was to identify, through the firsthand experiences and insights of family caregivers, the key elements related to the care offered to patients with a terminal illness at the end of life. This multicenter qualitative study was based on the paradigm of hermeneutic phenomenology. Participants were relatives of patients with terminal illness who had been identified as primary caregivers. Five discussion groups and 41 in-depth interviews were organized with a total of 81 participants. The content of the interviews was analyzed based on the methods developed by Giorgi (J Phenom Psychol 1997;28(2):235-260). The results indicate the existence of 3 dimensions: the caregiver’s suffering, compassion satisfaction with the care provided, and the support of health care professionals. Understanding the experiences of family members providing end-of-life care allows improved care and provides dignity in death. Health and social systems must provide comprehensive assistance covering the different aspects of needed care. Health professionals occupy a privileged position in the care of these patients and their families.
Background: The 3 Wishes Project (3WP) is an end-of-life program that aims to honor the dignity of dying patients by creating meaningful patient- and family-centered memories while promoting humanistic interprofessional care.
Objective: To determine whether this palliative intervention could be successfully implemented-defined as demonstrating value, transferability, affordability, and sustainability-beyond the intensive care unit in which it was created.
Design: Mixed-methods formative program evaluation. (ClinicalTrials.gov: NCT04147169).
Setting: 4 North American intensive care units.
Participants: Dying patients, their families, clinicians, hospital managers, and administrators.
Intervention: Wishes from dying patients, family members, and clinicians were elicited and implemented.
Measurements: Patient characteristics and processes of care; the number, type, and cost of each wish; and semistructured interviews and focus groups with family members, clinicians, and managers.
Results: A total of 730 patients were enrolled, and 3407 wishes were elicited. Qualitative data were gathered from 75 family members, 72 clinicians, and 20 managers or hospital administrators. Value included intentional comforting of families as they honored the lives and legacies of their loved ones while inspiring compassionate clinical care. Factors promoting transferability included family appreciation and a collaborative intensive care unit culture committed to dignity-conserving end-of-life care. Staff participation evolved from passive support to professional agency. Program initiation required minimal investment for reusable materials; thereafter, the mean cost was $5.19 (SD, $17.14) per wish. Sustainability was demonstrated by the continuation of 3WP at each site after study completion.
Limitation: This descriptive formative evaluation describes tertiary care center-specific experiences rather than aiming for generalizability to all jurisdictions.
Conclusion: The 3WP is a transferrable, affordable, and sustainable program that provides value to dying patients, their families, clinicians, and institutions.
Primary Funding Source: Greenwall Foundation.
Les justifications apportées à la dépénalisation de l’euthanasie ou du suicide assisté mettent en jeu au moins trois concepts éthiques : la dignité, la liberté et la compassion. Après quelques brèves considérations à propos de l’usage de la dignité et de la liberté dans les débats présents, nous examinerons la pertinence d’un appel à la compassion en essayant de donner à cette notion une cohérence qui souvent lui fait défaut.
OBJECTIVES: Psychosocial interventions that mitigate psychosocial distress in cancer patients are important. The primary aim of this study was to examine the feasibility and acceptability of an adaptation of the Mindful Self-Compassion (MSC) program among adult cancer patients. A secondary aim was to examine pre-post-program changes in psychosocial wellbeing.
METHOD: The research design was a feasibility and acceptability study, with an examination of pre- to post-intervention changes in psychosocial measures. A study information pack was posted to 173 adult cancer patients 6 months-5 years post-diagnosis, with an invitation to attend an eight-week group-based adaptation of the MSC program.
RESULTS: Thirty-two (19%) consented to the program, with 30 commencing. Twenty-seven completed the program (mean age: 62.93 years, SD 14.04; 17 [63%] female), attending a mean 6.93 (SD 1.11) group sessions. There were no significant differences in medico-demographic factors between program-completers and those who did not consent. However, there was a trend toward shorter time since diagnosis in the program-completers group. Program-completers rated the program highly regarding content, relevance to the concerns of cancer patients, and the likelihood of recommending the program to other cancer patients. Sixty-three percent perceived that their mental wellbeing had improved from pre- to post-program; none perceived a deterioration in mental wellbeing. Small-to-medium effects were observed for depressive symptoms, fear of cancer recurrence, stress, loneliness, body image satisfaction, mindfulness, and self-compassion.
SIGNIFICANCE OF RESULTS: The MSC program appears feasible and acceptable to adults diagnosed with non-advanced cancer. The preliminary estimates of effect sizes in this sample suggest that participation in the program was associated with improvements in psychosocial wellbeing. Collectively, these findings suggest that there may be value in conducting an adequately powered randomized controlled trial to determine the efficacy of the MSC program in enhancing the psychosocial wellbeing of cancer patients.
BACKGROUND: Preserving terminally ill patients' dignity and well-being through dignified and holistic care has become the overarching goal in palliative care services. However, dignity is a multifaceted concept with a wide range of interpretations under different cultural contexts.
AIM: The aim of this review is to understand the variations in subjective interpretations and constitutions of dignity in palliative or end-of-life care via an integrative worldview.
DESIGN: This systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline and used SPIDER tool to screen for appropriate and relevant articles for analysis.
DATA SOURCES: Four major databases were searched including CINAHL, ERIC, Medline, and PsycARTICLES between 2009 and 2018. Forty-eight qualitative studies that examined dignity from the perspectives of patients, family caregivers, and health-care professionals were selected for full text data analysis using thematic synthesis.
RESULTS: Analysis of the various concepts of dignity revealed 18 themes that were further categorized into 7 conceptual categories: (1) self-determination, (2) existential liberty, (3) relational connectedness, (4) caregiving revitalization, (5) mindful humanity, (6) patient-family care, and (7) sustainable culture. These 7 categories span across individual, familial, and institutional dimensions, forming a new Dynamic Reciprocity of Dignity model.
CONCLUSIONS: The Dynamic Reciprocity of Dignity model highlights the importance of adopting a systemic lens to address dignity-related needs and concerns at the end of life, while providing insights on how compassionate care and self-compassion can serve as the foundation of dignified care, which in turn serve as a buffer against patients' existential suffering as well as caregivers' burnout and fatigue. Recommendations for clinical practice and future research directions are discussed.
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child’s death. However, there is a dearth of research on these families’ direct, qualitative experiences with health-care providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child’s terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants’ perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored.