Background: Involving adults lacking capacity (ALC) in research on end of life care (EoLC) or serious illness is important, but often omitted. We aimed to develop evidence-based guidance on how best to include individuals with impaired capacity nearing the end of life in research, by identifying the challenges and solutions for processes of consent across the capacity spectrum.
Methods: Methods Of Researching End of Life Care_Capacity (MORECare_C) furthers the MORECare statement on research evaluating EoLC. We used simultaneous methods of systematic review and transparent expert consultation (TEC). The systematic review involved four electronic databases searches. The eligibility criteria identified studies involving adults with serious illness and impaired capacity, and methods for recruitment in research, implementing the research methods, and exploring public attitudes. The TEC involved stakeholder consultation to discuss and generate recommendations, and a Delphi survey and an expert ‘think-tank’ to explore consensus. We narratively synthesised the literature mapping processes of consent with recruitment outcomes, solutions, and challenges. We explored recommendation consensus using descriptive statistics. Synthesis of all the findings informed the guidance statement.
Results: Of the 5539 articles identified, 91 met eligibility. The studies encompassed people with dementia (27%) and in palliative care (18%). Seventy-five percent used observational designs. Studies on research methods (37 studies) focused on processes of proxy decision-making, advance consent, and deferred consent. Studies implementing research methods (30 studies) demonstrated the role of family members as both proxy decision-makers and supporting decision-making for the person with impaired capacity. The TEC involved 43 participants who generated 29 recommendations, with consensus that indicated. Key areas were the timeliness of the consent process and maximising an individual’s decisional capacity. The think-tank (n = 19) refined equivocal recommendations including supporting proxy decision-makers, training practitioners, and incorporating legislative frameworks.
Conclusions: The MORECare_C statement details 20 solutions to recruit ALC nearing the EoL in research. The statement provides much needed guidance to enrol individuals with serious illness in research. Key is involving family members early and designing study procedures to accommodate variable and changeable levels of capacity. The statement demonstrates the ethical imperative and processes of recruiting adults across the capacity spectrum in varying populations and settings.
One of the earliest controversies in the modern history of bioethics was known at the time as "the Hopkins Mongol case," involving an infant with Trisomy 21 and duodenal atresia whose parents declined to consent to surgery. Fluids and feeding were withheld, and the infant died of dehydration after 15 days. The child's short life had a profound impact on the author's career and that of several others and ultimately led to changes in the care of children and adults with disabilities and the way difficult end-of-life decisions are made in US hospitals today. It also contributed to the growth of the modern bioethics movement and scholarship focused on pediatric bioethics issues.
AIMS AND OBJECTIVES: The purpose of this study is to elucidate the attitudes and knowledge of nursing home (NH) staff involved in the decision-making process surrounding tube feeding for people with advanced dementia, and regarding palliative care and eating difficulties in this population.
BACKGROUND: Dementia's final stage is associated with eating difficulties. "Comfort feeding" is the approach endorsed by the American Geriatrics society for those with advanced dementia and eating difficulties. Despite this, tube feeding remains a persisting practice in NHs in Israel.
DESIGN: Qualitative descriptive study.
METHODS: 27 NH employees from different sectors employed by seven NHs in Northern Israel underwent semi-structured, face-to-face interviews. The COREQ checklist was used to aid with reporting and analysis of results.
RESULTS: In Israel, there is an emerging palliative care discourse in caring for people with advanced dementia living in the NH setting. However, many interviewed didn't demonstrate an accurate understanding of this term or of the term "comfort feeding". Several barriers toward implementation of palliative care were identified and include a lack of formal education regarding nutrition in advanced dementia, socio-economic factors and their association with the two types of NHs operating in Israel (those with exclusively private funding, and those reimbursed by the Ministry of Health).
CONCLUSIONS: Interviews with NH staff regarding eating difficulties in advanced dementia shed light on the palliative care discourse, which is in a liminal stage in many countries. The themes which emerged may help inform future recommendations regarding palliative care in general and more specifically in NH residents with advanced dementia, in countries where policy is still being developed and refined.
RELEVANCE TO CLINICAL PRACTICE: Understanding barriers toward implementation of a palliative approach and comfort feeding specifically could improve the care for people with advanced dementia in the NH setting.
BACKGROUND: Decision-making in end-stage dementia (ESD) is a complex process involving medical, social, legal and ethical issues. In ESD, the person suffers from severe cognitive problems leading to a loss of capacity to decide matters regarding health and end-of-life issues. The decisional responsibility is usually passed to clinicians and relatives who can face significant difficulty in making moral decisions, particularly in the presence of life-threatening swallowing problems.
AIM: This study aimed to understand the decision-making processes of clinical teams and relatives in addressing life-threatening swallowing difficulties in ESD in long-term care in Malta.
METHOD: The study followed a qualitative approach where six case studies, involving six different teams and relatives of six different patients, were interviewed retrospectively to understand their decision-making in connection with the management of swallowing difficulties in ESD. Data were collected through semistructured interviews with each stakeholder. All data were transcribed and subjected to thematic analysis.
RESULTS: Four themes were identified: the vulnerability of patients in dementia decision-making; the difficult role of relatives in decision-making; the decisional conflict between aggressive care through tube feeding versus oral comfort feeding; a consensus-building decision-making process as ideal to facilitate agreement and respect for patient's dignity.
CONCLUSION: Decision-making to manage swallowing difficulties in ESD is a challenging process, which involves an interpretation of personal values, beliefs, patient preferences, care needs and clinical practice. Better communication between clinicians and relatives in dementia helps promote agreement between stakeholders leading to a care plan that respects the dignity of patients at their end of life.
Dementia patients in the moderate-late stage of the disease can, and often do, express different preferences than they did at the onset of their condition. The received view in the philosophical literature argues that advance directives which prioritize the patient's preferences at onset ought to be given decisive moral weight in medical decision-making. Clinical practice, on the other hand, favors giving moral weight to the preferences expressed by dementia patients after onset. The purpose of this article is to show that the received view in the philosophical literature is inadequate and is out of touch with real clinical practice. I argue that having dementia is a cognitive transformative experience and that preference changes which result from this are legitimate and ought to be given moral weight in medical decision-making. This argument ought to encourage us to reduce our confidence in the moral weight of advance directives for dementia patients.
OBJECTIVE: In Belgium, people with an incurable psychiatric disorder can file a request for euthanasia claiming unbearable psychic suffering. For the request to be accepted, it has to meet stringent legal criteria. One of the requirements is that the patient possesses decision-making capacity. The patient's decision-making capacity is assessed by physicians.The objective of our study is to provide insight in the assessment of decision-making capacity in the context of euthanasia for patients with psychic suffering caused by a psychiatric disorder.
METHOD: Twenty-two semistructured interviews with psychiatrists and neurologists were analysed with NVivo, a qualitative analysis software to code and organise transcribed data.
RESULTS: Different views and approaches regarding decision-making capacity in the context of euthanasia emerged from the data. Most of the physicians have some knowledge of the cognitive ability approach on decision-making capacity. According to this approach, four abilities constitute decision-making capacity: communication, understanding, appreciation and reasoning. We observed differences in the way these abilities are valued in relation to competence. Some physicians take additional elements into consideration when assessing decision-making capacity. Physicians acquired their knowledge on the subject in many different ways. Most of the physicians reported that decision-making capacity was not part of their training.
CONCLUSION: We conclude that physicians assess decision-making capacity in different ways and that personal values and beliefs influence their approach. As such, a common approach in assessing the decision-making capacity of a patient among the interviewed physicians is lacking. Less arbitrariness could be obtained by consistently implementing the cognitive ability approach.
Medical practitioners are confronted daily with decisions about patients' capacity to consent to interventions. To address some of the pertinent issues with these assessments, the end-of-life decision-making capacity of a 72-year-old female with treatment-resistant schizophrenia and terminal cancer is discussed, as are the role of the treating clinician and the importance of health-related values. There is a recommendation that the focus of these assessments can rather be on practical outcomes, especially when capacity issues arise. This implies that the decision-making capacity of the patient is only practically important when the treatment team is willing to proceed against the patient's wishes. This shifts the focus from a potentially difficult assessment to the simpler question of whether the patient's capacity will change the treatment approach. Clinicians should attend to any possible underlying issues, instead of focusing strictly on capacity. Compared to the general populations people with serious mental illness (SMI) have higher rates of physical illness and die at a younger age, but they do not commonly access palliative care services. Conversations about end-of-life care can occur without fear that a person's psychiatric symptoms or related vulnerabilities will undermine the process. More research about palliative care and advance care planning for people with SMI is needed. This is even more urgent in light of the coronavirus disease-2019 (COVID-19) pandemic, and South African health services should consider recommendations that advanced care planning should be routinely implemented. These recommendations should not only focus on the general population and should include patients with SMI.
BACKGROUND/OBJECTIVES: Specialty palliative care for hospitalized patients with dementia is widely recommended and may improve outcomes, yet rates of consultation remain low. We sought to describe hospitalists' decision-making regarding palliative care consultation for patients with dementia.
DESIGN: Descriptive qualitative study.
SETTING: Seven hospitals within a national nonprofit health system.
PARTICIPANTS: Hospitalist physicians.
MEASUREMENTS: Individual semistructured interviews. We used thematic analysis to explore factors that influence hospitalists' decision to consult palliative care for patients with dementia.
RESULTS: A total of 171 hospitalists were eligible to participate, and 28 (16%) were interviewed; 17 (61%) were male, 16 (57%) were white, and 18 (64%) were in practice less than 10 years. Overall, hospitalists' decisions to consult palliative care for patients with dementia were influenced by multiple factors across four themes: patient, family caregiver, hospitalist, and organization. Consultation was typically only considered for patients with advanced disease, particularly those receiving aggressive care or with family communication needs (navigating conflicts around goals of care and improving disease and prognostic understanding). Hospitalists' limited time and, for some, a lack of confidence in palliative care skills were strong drivers of consultation. Palliative care needs notwithstanding, most hospitalists would not request consultation if they perceived families would be resistant to it or had limited availability or involvement in caregiving. Additional barriers to referral at the organization level included a hospital culture that conflated palliative and end-of-life care and busy palliative care teams at some hospitals.
CONCLUSION: Hospitalists described a complex consultation decision process for involving palliative care specialists in the care of patients with dementia. Systematic identification of hospitalized patients with dementia most likely to benefit from palliative care consultation and strategies to overcome modifiable family and organization barriers are needed.
BACKGROUND: Facing the relentless worsening of their condition, ALS patients are required to make decisions on treatments and end-of-life care. A cognitive impairment showed to be a negative prognostic factor in ALS patients, perhaps affecting the ability to make informed decisions. Notwithstanding its crucial role, the capacity to consent to treatment (CCT) has never been evaluated in these patients.
OBJECTIVES: To assess the CCT in an ALS cohort in comparison to a control group, and to study the effects of demographic and clinical variables on this high-level cognitive function.
METHODS: 102 ALS patients and 106 healthy controls (HC) were enrolled. CCT was assessed using the MacArthur Competence Assessment Tool for Treatment (MAC-CAT-T) and the performance was classified into the three CCT outcomes (full credit, partial credit, no credit). Cognitive and psychological variables were assessed by MMSE, phonemic fluencies, Frontal System Behavioural Scale (FrSBe), and ALS Depression Inventory (ADI). Clinical and demographic variables were analyzed as possible predictors of the MAC-CAT-T outcomes. After a 1-year follow-up, CCT and neuropsychological assessments were repeated.
RESULTS: Most ALS patients (i.e., from 75 to 83% according to the different sub-items) retain full CCT. However, a subpopulation of the ALS patients showed a reduced CCT with respect to the HC. Age, education, phonemic fluency, and depression appeared related to the CCT outcomes. After 1 year, only the reasoning items worsened.
CONCLUSIONS: This is a preliminary report suggesting that the large majority of ALS patients can retain full ability to choose between treatment options. However, demographic and neuropsychological variables may affect CCT, pointing to the need for special attention to the consent disclosure in this disease.
End-of-life decision-making is an important area of research, and few sociological studies have considered family grief in light of end-of-life decision-making in the hospital. Drawing on in-depth interviews with family members in the intensive care unit (ICU) during an end-of-life hospitalization and into their bereavement period up to six months after the death of the patient, this article examines bereaved family members' experiences of grief by examining three aspects from the end-of-life hospitalization and decision-making in the ICU that informed their subsequent bereavement experiences. First, this article explores how the process of advance care planning (ACP) shaped family experiences of grief, by demonstrating that even prior informal conversations around end-of-life care outside of having an advance directive in the hospital was beneficial for family members both during the hospitalization and afterwards in bereavement. Second, clinicians' compassionate caring for both patients and families through the "little things" or small gestures were important to families during the end-of-life hospitalization and afterwards in bereavement. Third, the transition time in the hospital before the patient's death facilitated family experiences of grief by providing a sense of support and meaning in bereavement. The findings have implications for clinicians who provide end-of-life care by highlighting salient aspects from the hospitalization that may shape family grief following the patient's death. Most importantly, the notion that ACP as a social process may be a "gift" to families during end-of-life decision-making and carry through into bereavement can serve as a motivator to engage patients in ACP.
OBJECTIVES: Family carers (FCs) of nursing home (NH) residents are best placed to notice deteriorations that signal impending death in their relative, which can open a conversation with healthcare professionals (HCPs) about adjusting the care plan. We explored contributors to bereaved FCs' decision to transition towards palliative-oriented care for their relatives in NHs.
METHODS: This qualitative descriptive study used a phenomenological design. Thirty-two bereaved FCs across 13 Italian NHs completed semi-structured interviews. Additional data were collected on NH referrals to palliative care services (PCS) in the 6 months before study start and treatments provided in the last week of life. Content analysis with a combined inductive and deductive approach was applied to identify codes and fit them into an a priori framework. When codes did not fit, they were grouped into new categories, which were finally gathered into themes.
RESULTS: FCs reported four types of "trigger events" that made them doubt that their relative would recover: (1) physical deterioration (e.g., stopping eating/walking or swallowing problems); (2) social confirmation (e.g., confirming their relative's condition with friends); (3) multiple hospitalizations; and (4) external indicators (e.g., medical examinations by external consultants). A "resident-centered environment" helped FCs recognize trigger events and "raise awareness of the possibility of death"; however, the "need for reassurance" was pivotal to a "gradual transition towards palliative-oriented care". When participants did not recognize the trigger event, their relative continued to receive curative-oriented care. NHs that referred residents to PCS discussed palliative-oriented care more frequently with FCs, had a lower nurse-to-resident and nurse aide-to-resident ratio, and administered more palliative-oriented care.
SIGNIFICANCE OF RESULTS: Trigger events represent an opportunity to discuss residents' prognosis and are the starting point for a gradual transition towards palliative-oriented care. Adequate staffing, teamwork, and communication between FCs and healthcare professionals contribute to a sensitive, timely shift in care goals.
BACKGROUND: Increasing age is accompanied by a greater need for medical decisions, due in part to age-related increases in chronic disease and disability. In later life, medical decisions about end-of-life care in particular are likely. However, a significant percentage of these decisions are made by surrogate decision-makers. "Surrogates" are most often instructed to use the substituted judgment standard and make decisions that patients would choose if they were able. Whether surrogates make decisions that adequately match patients' preferences is a concern. Surrogates are generally poor predictors of patient preferences (Shalowitz et al., 2006). However, no critical review of this literature has yet been published.
METHOD: A critical review was conducted to summarise and provide a methodological critique of 25 studies.
RESULTS: These studies generally concur that patient-surrogate agreement on medical decisions is poor. However, this conclusion is qualified by inconsistencies in methodological quality and the potentially limited generalisability of these findings.
CONCLUSIONS: Clinical research incorporating standardised hypothetical decision-making protocols, as well as triangulated data collection methods, would bolster confidence in future findings. Investigations prioritising the surrogate decision-making process, rather than solely the decisional outcome, could better identify ways to improve the decision-making process for incapacitated patients.
OBJECTIVE: The objective of this scoping review is to explore the empirical evidence on the range of treatment decisions made by adult Muslims at the end of life.
INTRODUCTION: Relief of pain and suffering is a human right; however, ethnic, racial, and religious minorities do not receive optimum end-of-life care. Several factors have been identified as impacting on the decision-making of minority populations. These patients have been found to access palliative care to a lesser degree, receive inadequate pain management, prefer aggressive care, and die in a place other than their place of preference. Muslims remain an under-represented community in end-of-life studies, with little known about their care preferences and decisions in their final stage of life.
INCLUSION CRITERIA: This review will include studies whose participants are adults (= 18 years) facing end-of-life decision-making who identify as Muslim while residing in a non-Muslim-majority country. The participants may be healthy volunteers with a view on the subject, or patients and their caregivers facing end-of-life decision-making. Quantitative and qualitative studies will be included, with the exclusion of theoretical and opinion-based articles.
METHODS: The three-step search strategy for the proposed scoping review will follow JBI methodology. Databases to be searched include MEDLINE via OvidSP, PsycINFO via OvidSP, Embase via OvidSP, Scopus (Elsevier), CINAHL via EBSCO, and ProQuest Dissertations and Theses Global. Studies in English published since database inception will be considered. The results will be extracted and charted by two independent reviewers. Data will be presented in tabular form and a narrative summary provided.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
BACKGROUND: Family caregivers of patients on prolonged mechanical ventilation (PMV) may encounter challenges concerning medical decision-making besides witnessing patient suffering. Palliative care (PC) should be a good support for both patients and caregivers; however, for PMV families, PC is not always a choice through long companion time. This qualitative study clarifies family caregivers' burden of assisting patients on PMV and evaluates the need for PC information and support.
METHODS: Interviews were caregivers of patients on ventilator support for more than 60 days in five hospitals of the Taipei City Hospital System. Based on phenomenology, this study was conducted by using a semistructured questionnaire comprising three questions: (I) what was the most crucial moment of deciding to intubate? (II) how would you describe the quality of life of your ventilator-dependent family member? (III) what type of assistance do you expect from the PC team for your ventilator-dependent family member?
RESULTS: Twenty-one caregivers of patients on PMV in five hospitals of the Taipei City Hospital System agreed to participate in face-to-face interviews. The identified themes, including stressful decision-making, companion pain/discomfort, and unwillingness to accept PC, elucidated the difficulties experienced by caregivers when providing care.
CONCLUSIONS: Understanding family caregivers' experiences can enable physicians to improve communication with them, encourage the PC team to support them during surrogate decision-making for patients on PMV during critical moments, and enhance the overall PC service.
BACKGROUND: Population aging has increased the prevalence of surrogate decision making in healthcare settings. However, little is known about factors contributing to the decision to become a surrogate and the surrogate medical decision-making process in general. We investigated how intrapersonal and social-contextual factors predicted two components of the surrogate decision-making process: individuals' willingness to serve as a surrogate and their tendency to select various end-of-life treatments, including mechanical ventilation and palliative care options.
METHOD: An online sample (N = 172) of adults made hypothetical surrogate decisions about end-of-life treatments on behalf of an imagined person of their choice, such as a parent or spouse. Using self-report measures, we investigated key correlates of willingness to serve as surrogate (e.g., decision-making confidence, willingness to collaborate with healthcare providers) and choice of end-of-life treatments.
RESULTS: Viewing service as a surrogate as a more typical practice in healthcare was associated with greater willingness to serve. Greater decision-making confidence, greater willingness to collaborate with patients' physicians, and viewing intensive, life-sustaining end-of-life treatments (e.g., mechanical ventilation) as more widely accepted were associated with choosing more intensive end-of-life treatments.
SIGNIFICANCE OF RESULTS: The current study's consideration of both intrapersonal and social-contextual factors advances knowledge of two key aspects of surrogate decision making - the initial decision to serve as surrogate, and the surrogate's selection of various end-of-life treatment interventions. Providers can use information about the role of these factors to engage with surrogates in a manner that better facilitates their decision making. For instance, providers can be sensitive to potential cultural differences in surrogate decision-making tendencies or employing decision aids that bolster surrogates' confidence in their decisions.
The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making.
Specialist palliative care services (SPCS) have a vital role to play in the global coronavirus disease 2019 pandemic. Core expertise in complex symptom management, decision making in uncertainty, advocacy and education, and ensuring a compassionate response are essential, and SPCS are well positioned to take a proactive approach in crisis management planning. SPCS resource capacity is likely to be overwhelmed, and consideration needs to be given to empowering and supporting high-quality primary palliative care in all care locations. Our local SPCS have developed a Palliative Care Pandemic Pack to disseminate succinct and specific information, guidance, and resources designed to enable the rapid upskilling of nonspecialist clinicians needing to provide palliative care. It may be a useful tool for our SPCS colleagues to adapt as we face this global challenge collaboratively.
BACKGROUND/OBJECTIVES: To explore the opinion of the Dutch general public and of physicians regarding euthanasia in patients with advanced dementia.
DESIGN: A cross-sectional survey.
SETTING: The Netherlands.
PARTICIPANTS: Random samples of 1,965 citizens (response = 1,965/2,641 [75%]) and 1,147 physicians (response = 1,147/2,232 [51%]).
MEASUREMENTS: The general public was asked to what extent they agreed with the statement "I think that people with dementia should be eligible for euthanasia, even if they no longer understand what is happening (if they have previously asked for it)." Physicians were asked whether they were of the opinion that performing euthanasia is conceivable in patients with advanced dementia, on the basis of a written advance directive, in the absence of severe comorbidities. Multivariable logistic regression was performed to identify factors associated with the acceptance of euthanasia.
RESULTS: A total of 60% of the general public agreed that people with advanced dementia should be eligible for euthanasia. Factors associated with a positive attitude toward euthanasia were being female, age between 40 and 69 years, and higher educational level. Considering religion important was associated with lower acceptance. The percentage of physicians who considered it acceptable to perform euthanasia in people with advanced dementia was 24% for general practitioners, 23% for clinical specialists, and 8% for nursing home physicians. Having ever performed euthanasia before was positively associated with physicians considering euthanasia conceivable. Being female, having religious beliefs, and being a nursing home physician were negatively associated with regarding performing euthanasia as conceivable.
CONCLUSION: There is a discrepancy between public acceptance of euthanasia in patients with advanced dementia and physicians' conceivability of performing euthanasia in these patients. This discrepancy may cause tensions in daily practice because patients' and families' expectations may not be met. It urges patients, families, and physicians to discuss mutual expectations in these complex situations in a comprehensive and timely manner.