OBJECTIVE: In 2015, a Chaplaincy Research Consortium generated a model of human spirituality in the palliative care context to further chaplaincy research. This article investigates the clinical fit of (a) the model's fundamental premise of universal human spirituality and (b) its 4 proposed stage descriptors (Discovery, Dialogue, Struggle, and Arrival).
METHOD: First, we collected qualitative data from an interdisciplinary palliative care focus group. Participants (n = 5) shared responses to the statement "the human spirit has essential commonalities across [ … ] groups and [ … ] attributes." Participants also shared vignettes of spiritual care, and 48 vignettes illustrating patients' spiritual journeys were subsequently taken from the transcript of that group. Second, we invited different mixed discipline palliative care professionals (n = 9) to individually card sort these vignettes to the model's 4 stage descriptors; we conducted pattern analysis on the results. We then administered a third step, convening six physicians to complete the card sort again, this time allowing designation of cards to one or two of the 4 stage descriptors.
RESULTS: Focus group participants were supportive of the model's all-encompassing definition of spirituality. The concept of "connectedness" was a shared focus for all participants, connectedness and spirituality appearing almost synonymous. Pattern analysis of assigned 48 vignettes to the 4 stages showed stronger consensus around Discovery and Arrival than Struggle and Dialogue. Results of the additional card sort suggested Struggle and Dialogue involve oscillation and are harder to think of as a steady state as distinct from processes associated with Discovery or Arrival.
SIGNIFICANCE OF RESULTS: "Connectedness" is a productive concept for modeling human spiritual experience near the end of life. As one healthcare professional said: "this connectedness piece is [ … ] what I always look for … " Although further work is needed to understand struggle and dialogue elements in peoples' spiritual journeys, discovery and arrival shared consensus among participants.
The concept of medical futility as an applied ethical framework has seen a rise and fall in its popularity over the last 30 years. It is a term used in relation to the assessment of a patient's health condition that is deemed untreatable, irreversible, and unresolvable. In four recent cases, Gard, Evans, Haastrup, and Raqeeb, the concept has been brought to the fore once again. These cases highlight a mounting tension between clinicians and families. Parental desires to see their child's treatment continued, while understandable, should not dominate treatment planning. This article analyses judicial interpretation of the factors which determine an assessment of futility and in doing so, argues that the role of medical futility in judicial decisions of this kind is gaining prominence and will continue to do so as scientific advancement blurs the limits of medicine even further.
PURPOSE: Monitoring and improving the quality of palliative and end-of-life cancer care remain pressing needs in the United States. Among existing measures that assess the quality of palliative and end-of-life care, many operationalize similar concepts. We identified existing palliative care process measures and synthesized these measures to aid stakeholder prioritization that will facilitate health system implementation in patients with advanced cancer.
METHODS: We reviewed MEDLINE/PubMed-indexed articles for process quality measures related to palliative and end-of-life care for patients with advanced cancer, supplemented by expert input. Measures were inductively grouped into "measure concepts" and higher-level groups.
RESULTS: Literature review identified 226 unique measures from 23 measure sources, which we grouped into 64 measure concepts within 12 groups. Groups were advance care planning (11 measure concepts), pain (7), dyspnea (9), palliative care-specific issues (6), other specific symptoms (17), comprehensive assessment (2), symptom assessment (1), hospice/palliative care referral (1), spiritual care (2), mental health (5), information provision (2), and culturally appropriate care (1).
CONCLUSION: Measure concepts covered the spectrum of care from acute symptom management to advance care planning and psychosocial needs, with variability in the number of measure concepts per group. This taxonomy of process quality measure concepts can be used by health systems seeking stakeholder input to prioritize targets for improving palliative and end-of-life care quality in patients with advanced cancer.
Despite the increasing need for neonatal palliative care, it is not adequately implemented in practice. This analysis aimed to clarify the dimension of the neonatal palliative care concept to increase understanding of the concept to give more insight into clinical practice. Using dimensional analysis methodology, 46 English language papers from 2001-2018 were analyzed. The coding of the literature for the perspective, context, conditions, process, and consequences of the concept was completed. Five dimensions informed the conceptualization of this concept and interrelationships among their themes/sub-themes were presented in the matrix named, "improving quality of life and death". Within the family-centered care perspective and under different conditions/contexts through the processes of neonate's comfort and providing holistic care, the consequences of this care were improving quality of life/a good death. Family-centered care was the fundamental dimension and essential to achieving the consequences. The other dimensions of context, conditions, and processes were also affected by the family's needs, preferences, culture, and expectations. This analysis reinforces that neonatal palliative care is a multidimensional concept. To provide the standard of neonatal palliative care an integrated plan to get together many stakeholders including community, parents, clinical staff, policymakers, insurance authorities, health care systems, and education system is required. All NICUs should have neonatal palliative care-trained nurses and protocols with a family-centered care approach to focus on the quality of life of neonates with life-threatening conditions from diagnosis of disease to death. Regular training and educational courses on neonatal palliative care and family-centered care principles can make nurses more sensitive to their advocacy role.
Objective: Seriously ill adults with multiple chronic conditions (MCC) who receive palliative care may benefit from improved symptom burden, health care utilization and cost, caregiver stress, and quality of life. To guide research involving serious illness and MCC, palliative care can be integrated into a conceptual model to develop future research studies to improve care strategies and outcomes in this population.
Methods: The adapted conceptual model was developed based on a thorough review of the literature, in which current evidence and conceptual models related to serious illness, MCC, and palliative care were appraised. Factors contributing to patients’ needs, services received, and service-related variables were identified. Relevant patient outcomes and evidence gaps are also highlighted.
Results: Fifty-eight articles were synthesized to inform the development of an adapted conceptual model including serious illness, MCC, and palliative care. Concepts were organized into 4 main conceptual groups, including Factors Affecting Needs (sociodemographic and social determinants of health), Factors Affecting Services Received (health system; research, evidence base, dissemination, and health policy; community resources), Service-Related Variables (patient visits, service mix, quality of care, patient information, experience), and Outcomes (symptom burden, quality of life, function, advance care planning, goal-concordant care, utilization, cost, death, site of death, satisfaction).
Discussion: The adapted conceptual model integrates palliative care with serious illness and multiple chronic conditions. The model is intended to guide the development of research studies involving seriously ill adults with MCC and aid researchers in addressing relevant evidence gaps.
Fifteen years ago, Ruth Macklin shook the medical community with her claim in the BMJ that dignity is a useless concept. Her essay provoked a storm of reactions. What have we learned from the debate? In this article I analyse the responses to her essay and the following debate to investigate whether she was right that “[d]ignity is a useless concept in medical ethics and can be eliminated without any loss of content.” While some of the commentaries misconstrued her claim and argue against strawmen, others forcefully maintained that the concept of dignity has functions beyond “respect for persons and their autonomy.” One important point that came out of the debate is that dignity is a generic concept that covers more ground than “respect for persons or their autonomy.” In particular, dignity seems to have a wide range of protective functions as well as having reciprocal, relational, and social aspects. Dignity appears more attributional and norm-formative than respect for persons and autonomy. While the claim that dignity is unclear, vague, and can be used sloganistically seems highly relevant, it is argued that this vagueness fulfils important functions in ethics. Moreover, dismissing dignity because of its lack of clarity has implications for “respect for persons” and “autonomy,” which are also used vaguely and sloganistically. No doubt medical ethics should use as a clear concept as the context requires. Nonetheless, dignity still seems to be a widely used generic concept in ethical debates and doing as much ethical work as “respect for persons” or “respect for autonomy.” Therefore, the death of dignity seems to be greatly exaggerated.
Alongside increasing rates of dementia diagnoses worldwide, efforts to seek alternative end-of-life options also increase. While the concept of assisted dying remains controversial, the discussion around its provision for people with dementia raises even more sensitivity. In this study, we explored how the practice of assisted dying for people with dementia is conceptualized and understood using the shared narratives of online contributors. An observational netnography over 20 months was carried out within five open Facebook communities. Thematic analysis was conducted on 1,007 online comments about assisted dying and dementia. Results reflected four central themes and five subthemes: understanding dementia; understanding assisted dying laws; caregivers’ feelings; and moral/personal dilemmas. Findings reveal that the majority of communities’ contributors fear developing dementia. They support the provision of advance euthanasia directives—written by competent patients—to prevent unnecessary suffering, and protect patients’ wishes and freedom of choice when decision-making competency is lost.
Background: Family caregivers of advanced cancer patients are at risk for developing mental disorders. Despite this risk, the majority seem to adapt well, and throughout the caregiving period, their trajectory is characterised by healthy functioning. However, GPs struggle with making timely assessments of caregivers at risk for mental dysfunction, since they often fail to seek medical help for themselves and the appropriate research about resilience in cancer caregivers is scarce. Moreover, research is hampered by the lack of a universal definition or theoretical framework.
Aim: To propose a comprehensive definition and framework for further research in family caregiving for advanced cancer patients.
Method: Inspired by the hermeneutic methodology, reviews and concept analyses on resilience following a potentially traumatic event were searched and analysed. Conforming to the hermeneutic methodology, article collection from PubMed, EMBASE, CINAHL, and PsycInfo was followed by analysis and was stopped when saturation was reached. Elements consistently arising from the definitions of resilience were listed and the theoretical frameworks were compared.
Results: The APA definition: ‘resilience is the process of adapting well in the face of adversity, trauma or threats’ and Bonanno’s framework ‘temporal elements of resilience’ are proposed.
Conclusion: There is a need for studies on resilience in caregivers of advanced cancer patients. Resilience is context-dependent, hence, study results cannot be transferred as such from one clinical situation to another. Furthermore, conceptual ambiguities hinder the interpretation and comparison of study results. For further research on resilience in caregivers of advanced cancer patients, we suggest the APA definition of resilience and Bonanno’s framework.
Palliative care improves communication, symptom control, and support for patients and their families, resulting in an improved quality of life and survival outcomes. The concept of palliative care has been evolving over time; traditionally limited to an oncology population, palliative care is now recommended for all patients living with serious or life-limiting illness. Palliative care can be used to anticipate, prevent, and manage physical, psychological, social, and spiritual suffering and can be delivered in any care setting to optimize quality of life of patients, families, and care providers.
In 2017 and 2018, the English courts were asked to decide whether continued life-sustaining treatment was in the best interests of three infants: Charlie Gard, Alfie Evans and Isaiah Haastrup. Each infant had sustained catastrophic, irrecoverable brain damage. Dignity played an important role in the best interests assessments reached by the Family division of the High Court in each case. Multiple conceptions of dignity circulate, with potentially conflicting implications for infants such as Charlie, Alfie and Isaiah. The judgements do not explicate the conceptions of dignity upon which they rely. This article reconstructs the conceptions of dignity invoked in these judgements, finding that a broadly Kantian, agential conception dominates, under which human dignity requires the prospect of agency. This conception is situated within the broader body of thought on dignity, and the potentially adverse implications of applying the reconstructed conception in best interests assessments for infants with severely restricted consciousness are discussed.
BACKGROUND: First defined in 2002 by Catlin and Carter, neonatal palliative care (NPC) is a relatively new model of care in neonatal pediatrics, first appearing in the medical literature in the early 1980s.
PURPOSE: The purpose of this article is to suggest a conceptual definition of NPC that encompasses all the essential concepts as a way of moving NPC forward by having a consistent approach.
METHODS: Following a review of the NPC literature, a thematic analysis as a method for identifying, analyzing, and interpreting patterns of meaning in the definitions ("themes") within the literature was undertaken.
FINDINGS: The major themes identified included philosophies of care, support, culture and spirituality, the team, and clinical management.
IMPLICATIONS FOR RESEARCH: At the heart of NPC is the primacy of maintaining quality of life, while providing ethical and humane care that supports a "good death." The extensive elements presented in this article are considered essential to a comprehensive and conceptual definition of NPC proposed here.
BACKGROUND: Emotional preparedness for death (hereafter called death preparedness) and prognostic awareness (PA), a distinct but related concept, each contributes to patients' practical, psychological, and interpersonal preparation for death. However, the distinction between these two concepts has never been investigated.
OBJECTIVE: To evaluate the distinction between death preparedness and accurate PA by examining their agreement over cancer patients' last year and the similarity of their predictors.
METHODS: For this secondary analysis of a longitudinal study of death preparedness for 277 cancer patients, agreement between death preparedness and accurate PA was evaluated by percentages and kappa coefficients, and predictors of the two outcomes were evaluated by multivariate logistic regression models with the generalized estimating equation.
RESULTS: Levels of agreement between reported death preparedness and accurate PA increased slightly (42.44%-52.85%) from 181-365 to 1-30 days before death, with kappa values from -0.190 (-0.319, -0.061) to -0.006 (-0.106, 0.093), indicating poor agreement. Participants who were male, older, reported financial sufficiency, had fewer distressing symptoms, and perceived higher levels of social support were more likely to report death preparedness. Participants who were female, had greater than high-school educational attainment, and endured higher levels of functional dependence were more likely to report accurate PA.
CONCLUSION: The distinction between death preparedness and accurate PA was supported by their poor agreement, lack of reciprocal associations, and two different sets of predictors. Healthcare professionals should not only cultivate cancer patients' accurate PA, but also facilitate emotional preparation for death to achieve a good death and improve end-of-life-care quality.
What does it mean to be vulnerable? Vulnerable groups of people are those that are disproportionally exposed to risk, but who is included in these groups can change dynamically. A person not considered vulnerable at the outset of a pandemic can become vulnerable depending on the policy response. The risks of sudden loss of income or access to social support have consequences that are difficult to estimate and constitute a challenge in identifying all those who might become vulnerable. Certainly, amid the COVID-19 pandemic, vulnerable groups are not only elderly people, those with ill health and comorbidities, or homeless or underhoused people, but also people from a gradient of socioeconomic groups that might struggle to cope financially, mentally, or physically with the crisis.
We read with interest the Editorial about redefining vulnerability in the era of coronavirus disease 2019 (COVID-19). The Editors recognise underserved and marginalised populations enduring the COVID-19 pandemic, and that the category of vulnerable individuals or groups is not fixed but evolves in response to policies that might create or reinforce vulnerability. When we ask what being vulnerable means, are we also creating the spaces needed to question what it means to be made vulnerable?
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.
Les étudiants infirmiers rédigent généralement des mémoires de fin d’études (MFE) à partir de situations vécues lors des stages. C’est une occasion pour nombre d’entre eux de développer des concepts dans le domaine des soins palliatifs. La notion de soins palliatifs ne recouvre pas seulement les unités spécialisées. Elle permet de considérer de multiple aspect de la prise en charge des patients (enfants, adolescents, adultes, personnes âgées, en situation de handicap…) ou tout simplement de l’accompagnement jusqu’à la mort, avec la réalité médicale et sociale que cela comporte (douleurs, émotions, relations avec les aidants…). La recherche documentaire est paramédicale et complexe. Elle suppose une interaction ancrée dans les problématiques informationnelles. Afin de contribuer au raisonnement des apprenants, les documentalistes participent à l’élaboration d’une logique méthodologique pour apporter des éléments constructifs des soins palliatifs dans les MFE. Des concepts incontournables peuvent être utilisés pour créer du sens entre la situation d’appel, la "question de départ", le cadre de références théoriques et l’enquête de terrain.
OBJECTIVE: To validate conceptual and operational definitions of Symptom control (1608) indicators for patients with cardiac diseases in palliative care.
METHOD: Definitions were established through a literature review and were validated by consensus among expert nurses. Two rounds of the Delphi method and a meeting with experts were carried out in order to validate the definitions for the indicators and for the magnitude of response for each indicator.
RESULTS: Conceptual and operational definitions for Symptom control (1608) indicators and for the magnitude of response for each indicator were validated.
CONCLUSIONS: All conceptual and operational definitions of 11 indicators of the nursing outcome Symptom control (1608) were validated by experts. Content and clinical validation studies remain necessary to verify the capacity of the indicators to measure the effectiveness of nursing interventions in clinical practice and research.
The goal of this paper is to introduce the false hope harms (FHH) argument, as a new concept in healthcare. The FHH argument embodies a conglomerate of specific harms that have not convinced providers to stop endorsing false hope. In this paper, it is submitted that the healthcare profession has an obligation to avoid collaborating or participating in, propagating or augmenting false hope in medicine. Although hope serves important functions-it can be 'therapeutic' and important for patients' 'self-identity as active agents'- the presentation of false hope along the hope continuum entails a misconstrued balancing act. By not speaking up against unrealistic patient and family requests-including some requests for rights to try, resuscitative efforts in terminally ill patients, or other demands for non-beneficial treatments-healthcare providers precipitate harms, i.e., the FHH. These harms arise on both individual and communal levels and cannot be ignored. The goal of this paper is not to offer a definition of false hope, because the phenomenon of false hope is too complex for any simple definition. Instead, this paper seeks to make four points while outlining the FHH argument: consumer medicine and false hope are connected; providers and patients are very vulnerable in the system of consumer medicine; providers have a responsibility to stand up against false hope; and how the FHH argument could perhaps offer a footing to resist giving in to false hope.
AIM: To develop a simultaneous, evolutionary concept analysis of moral distress and moral uncertainty in the context of medical assistance in dying (MAiD).
BACKGROUND: Moral distress is well represented in nursing literature but disagreement persists in how the concept is defined and understood. Moral uncertainty has not been investigated in-depth. Further definition and conceptual clarity is required to understand these concepts within the context of MAiD.
DESIGN: Simultaneous concept analysis.
DATA SOURCES: Cumulative Index of Nursing and Allied Health Literature, Google Scholar, and PubMed databases were searched for articles in English. The final sample consisted of 44 documents published from 1984 to 2019.
METHOD: An adapted combination of Rodgers's Evolutionary Model and Haase et al's Simultaneous Concept Analysis method.
RESULTS: Despite the significant overlap, moral distress and moral uncertainty have subtle distinguishing differences. Attributes of moral distress in the context of MAiD focus on knowing the right course of action but being unable to act, especially when conflict or suffering occurs. Attributes of moral uncertainty center on an inability to decide on which course of action to take or knowing what outcome is preferable.
CONCLUSION: More research is required to bring further clarity to these concepts and develop interventions to support nurses who receive requests for or participate in MAiD.
Ce numéro comprend les articles suivants : brain death at fifty: exploring consensus, controversy, and contexts ; would a reasonable person now accept the 1968 Harvard brain death report? A short history of brain death ; a path not taken: beecher, brain death, and the aims of medicine ; Beecher dépassé: fifty years of determining death, legally ; a conceptual justification for brain death ; brain death: a conclusion in search of a justification ; conceptual issues in DCDD donor death determination ; DCDD ddonors are not dead ; uncontrolled DCD: when should we stop trying to save the patient and focus on saving the organs? ; a defense of the dead donor rule ; the dead donor rule as policy indoctrination ; the public's right to accurate and transparent information about brain death and organ transplantation ; brain death and the law: hard cases and legal challenges ; rethinking brain death as a legal fiction: is the terminology the problem? ; respecting choice in definitions of death ; imposing death: religious witness on brain death ; death: an evolving, normative concept ; lessons from the case of Jahi McMath ; the case of Jahi McMath: a neurologist's view ; revisiting death: implicit bias and the case of Jahi MMath.