Although long-term care (LTC) home staff of nurses and personal support workers spend the most time providing direct care, their role in end of life decision-making for residents with dementia has largely been unacknowledged. Staff's perceptions of their role play a significant part in how they support people with dementia and family care partners. The purpose of this study was to examine LTC home staff's perspectives of their role in end of life decision-making for LTC home residents with dementia. For this interpretive descriptive study, 21 semi-structured interviews were conducted in two urban LTC homes with nine personal support worker (PSWs), eight registered practical nurses (RPNs), and four registered nurses (RNs). Additionally, a focus group was conducted, consisting of each a PSW, RPN, and RN. A voice-centred relational analysis was used to situate LTC home staff's perspectives within broader social contexts. Findings suggest that little has changed in LTC homes in the last 50 years. Rooted in dichotomies between medical and social care paradigms, ideologies of rationality and professionalism created tensions, hierarchical roles, and staff's minimal involvement in decision-making. A relational approach is needed to account for the interdependency of care and the relationships that LTC home staff have with residents, family care partners, and the sociopolitical environment.
OBJECTIVES: We examined how caregivers who had cared for a relative at end of life (EoL) wished to be cared for in the event that they experienced advanced dementia or physical disability in the future, and what factors influenced their preferences for EoL care.
METHODS: In this mixed-methods study, 83 participants, recruited from multiple sources in Israel, were interviewed concerning socio-demographic factors, health status, past experience with EoL, preference for extension of life vs. quality of life (QoL), willingness to be dependent on others, and preferences for EoL care.
RESULTS: In case of advanced dementia, 58% preferred euthanasia or suicide; around a third chose those for physical disability. Care by family members was the least desired form of care in the advanced dementia scenario, although more desirable than institutional care in the physical disability scenario. QoL was rated as the highest factor impacting preferences for EoL care. Men demonstrated a higher preference than women for extension of life over QoL.
CONCLUSION: Our study points to the need for society to consider solutions to the request of participants to reject the type of EoL experienced by their relatives. Those solutions include investing in improving the quality of life at the end of life, and offering alternatives such as euthanasia, which a large proportion of our participants found ethically and medically appropriate within the current system of care in the event of severe physical disability, and more so in the event of advanced dementia.
Most long-term care (LTC) residents are of age >65 years and have multiple chronic health conditions affecting their cognitive and physical functioning. Although some individuals in nursing homes return home after receiving therapy services, most will remain in a LTC facility until their deaths. This article seeks to provide guidance on how to assess and effectively select treatment for delirium, behavioral and psychological symptoms for patients with dementia, and address other common challenges such as advanced care planning, decision-making capacity, and artificial hydration at the end of life. To do so, we draw upon a team of physicians with training in various backgrounds such as geriatrics, palliative medicine, neurology, and psychiatry to shed light on those important topics in the following "Top 10" tips.
Adequate interprofessional collaboration is essential to provide high quality palliative dementia care across different settings. Within interprofessional collaboration, nurses are the frontline healthcare professionals (HCPs), who interact closely with people with dementia, their loved ones, and other HCPs. A survey was conducted to explore the needs of nurses regarding interprofessional collaboration in home care (HC) organisations, nursing homes (NHs) and during NH admissions. The survey identified the perceived quality of and preferred needs regarding interprofessional collaboration. In total, 384 participants (53.9% home care nurses) completed the survey. The most frequently reported collaboration needs in HC organisations and NH were optimal communication content e.g. information transfer and short communication lines (being able to easily contact other disciplines), and coordination e.g. one contact person, and clear task division and responsibilities). During NH admissions, it was important to create transparency about agreements concerning end-of-life wishes, optimize nurse-to-nurse handover during NH admissions (through performing visits prior to admissions, and receiving practical information on how to guide relatives), and improve coordination (e.g. one contact person). In conclusion, the key collaboration needs were organising central coordination, establishing optimal communication, and creating transparency on end-of-life care agreements.
Objectives: To develop a staff training intervention for agitation in people with severe dementia, reaching end-of-life, residing in nursing homes (NHs), test feasibility, acceptability, and whether a trial is warranted.
Design: Feasibility study with pre- and post-intervention data collection, qualitative interviews, and focus groups.
Setting: Three NHs in South East England with dementia units, diverse in terms of size, ownership status, and location.
Participants: Residents with a dementia diagnosis or scoring =2 on the Noticeable Problems Checklist, rated as “severe” on Clinical Dementia Rating Scale, family carers, and staff (healthcare assistants and nurses).
Intervention: Manualized training, delivered by nonclinical psychology graduates focusing on agitation in severe dementia, underpinned by a palliative care framework.
Measurements: Main outcomes were feasibility of recruitment, data collection, follow-up, and intervention acceptability. We collected resident, family carer, and staff demographics. Staff provided data on resident’s agitation, pain, quality of life, and service receipt. Staff reported their sense of competence in dementia care. Family carers reported on satisfaction with end-of-life care. In qualitative interviews, we explored staff and family carers’ views on the intervention.
Results: The target three NHs participated: 28 (49%) residents, 53 (74%) staff, and 11 (85%) family carers who were eligible to participate consented. Eight-four percent of staff attended =3 sessions, and we achieved 93% follow-up. We were able to complete quantitative interviews. Staff and family carers reported the intervention and delivery were acceptable and helpful.
Conclusions: The intervention was feasible and acceptable indicating a larger trial for effectiveness may be warranted.
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.
OBJECTIVES: Nursing homes (NHs) are critical end-of-life (EOL) care settings for 70% of Americans dying with Alzheimer's disease/related dementias (ADRD). Whether EOL care/outcomes vary by NH/market characteristics for this population is unknown but essential information for improving NH EOL care/outcomes. Our objectives were to examine variations in EOL care/outcomes among decedents with ADRD and identify associations with NH/market characteristics.
OUTCOMES: Place-of-death (hospital/NH), presence of pressure ulcers, potentially avoidable hospitalizations (PAHs), and hospice use at EOL. Key covariates were ownership, staffing, presence of Alzheimer's units, and market competition.
SETTING AND PARTICIPANTS: Long-stay NH residents with ADRD, age 65 + years of age, who died in 2017 (N = 191,435; 14,618 NHs) in NHs or hospitals shortly after NH discharge.
METHODS: National Medicare claims, Minimum Data Set, public datasets. Descriptive analyses and multivariable logistic regressions.
RESULTS: As ADRD severity increased, adjusted rates of in-hospital deaths and PAHs decreased (17.0% to 6.3%; 11.2% to 7.0%); adjusted rates of dying with pressure ulcers and hospice use increased (8.2% to 13.5%; 24.5% to 40.7%). Decedents with moderate and severe ADRD had 16% and 13% higher likelihoods of in-hospital deaths in for-profit NHs. In NHs with Alzheimer's units, likelihoods of in-hospital deaths, dying with pressure ulcers, and PAHs were significantly lower. As ADRD severity increased, higher licensed nurse staffing was associated with 14%-27% lower likelihoods of PAHs. Increased NH market competition was associated with higher likelihood of hospice use, and lower likelihood of in-hospital deaths among decedents with moderate ADRD.
CONCLUSIONS AND IMPLICATIONS: Decedents with ADRD in NHs that were nonprofit, had Alzheimer's units, higher licensed nurse staffing, and in more competitive markets, had better EOL care/outcomes. Modifications to state Medicaid NH payments may promote better EOL care/outcomes for this population. Future research to understand NH care practices associated with presence of Alzheimer's units is warranted to identify mechanisms possibly promoting higher-quality EOL care.
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.