BACKGROUND: Considering social cognitive theory and current literature about successful advance care planning in nursing homes, sufficient knowledge and self-efficacy are important preconditions for staff to be able to carry out advance care planning in practice.
AIM: Exploring to what extent nurses' knowledge about and self-efficacy is associated with their engagement in advance care planning in nursing homes.
DESIGN: Survey study as part of a baseline measurement of a randomised controlled cluster trial (NCT03521206).
SETTING/PARTICIPANTS: Nurses in a purposive sample of 14 nursing homes in Belgium.
METHODS: A survey was distributed among nurses, evaluating knowledge (11 true/false items), self-efficacy (12 roles and tasks on 10-point Likert-type scale) and six advance care planning practices (yes/no), ranging from performing advance care planning conversations to completing advance directives.
RESULTS: A total of 196 nurses participated (66% response rate). While knowledge was not significantly associated with advance care planning practices, self-efficacy was. One unit's increase in self-efficacy was statistically associated with an estimated 32% increase in the number of practices having carried out.
CONCLUSIONS: Nurses' engagement in advance care planning practices is mainly associated with their self-efficacy rather than their knowledge. Further research is necessary to improve the evidence regarding the causal relationship between constructs. However, these results suggest that educational programmes that focus solely on knowledge might not lead to increasing uptake of advance care planning in nurses.
BACKGROUND: With a growing nursing home population suffering from chronic progressive illnesses and evolving patterns of comorbidities, end-of-life communication takes on a critical role to enable healthcare professionals to gather information about the resident's wishes for care at the end-of-life and organise the care plan accordingly.
AIM: To explore nurses' perspective about the process by which end-of-life communication impacts on the goal of end-of-life care in nursing home residents.
DESIGN: A qualitative descriptive research design based on thematic analysis was performed. Fourteen nurses involved in the care of residents during their last week of life were recruited across 13 Italian nursing homes and accounted for 34 semi-structured interviews. A combined approach of analysis that incorporated a data-driven inductive approach and a theory-driven one was adopted.
RESULTS: Twelve themes described how end-of-life communication may contribute to adjust the care plan in nursing home according to the nurses' perspective. Five antecedents (i.e. life crisis or transitions, patient-centered environment, arising the question of possible dying, quality of relationships and culture of care) influenced the establishment and quality of communication, and five attributes depicted the characteristics and potential mechanisms of end-of-life communication (i.e. healthcare professional-resident and healthcare professional-family carers communication, knowledge of family carers' preferences, knowledge of residents' preferences, family carers and residents understanding, and shared decision-making), while curative-oriented and palliative-oriented care goals emerged as consequences.
CONCLUSION: This study provides insight into the nursing perspective of end-of-life communication between healthcare professionals and bereaved family carers of nursing home residents. Several factors influenced the occurrence and quality of end-of-life communication, which contributed to the transition towards palliative-oriented care by using and improving knowledge about family cares' and resident's preferences for end-of-life care, promoting family carers and residents understanding about prognosis and treatments available, and fostering shared decision-making.
BACKGROUND: In Switzerland as in many countries, steady trend is observed in nursing homes to promote writing of advanced directives (ADs). Implementation of ADs reflects the rise in public concern for the persons' right to self-determination and informed decision. The issue of end-of-life conditions is particularly acute in situations with dementia. This article investigates how ADs interventions in nursing homes strive simultaneously to behave in line with the principles of care ethics and with the intention to respond to legally binding instructions. Healthcare to dying residents with dementia in nursing homes is interpreted in light of the Regulation theory.
METHODS: Nursing home palliative care reference nurses were contacted through questionnaire. One hundred twenty-one addresses were reached, 69 responses were collected, giving a response rate of 57%. In order to deepen the understanding, 10 semi-directive interviews were conducted in 10 different nursing facilities with 12 palliative nurses.
RESULTS: Presently, Swiss nursing homes are lacking a model of AD suitable to people with dementia. The study sheds light on dissimilarities in the purpose assigned to ADs' procedure in the different facilities. Discrepancies in end-of-life care practices reveal more the influence of structural and organisational devices specific to each setting than conflicting views on end-of-life care principles. We analyse the interpretation of the Law and its implementation in the participating NHs as compromises that could be accounted for as a form of social regulation.
CONCLUSION: Dementia accentuates the uncertainty inherent to end-of-life trajectories. The implementation of standardised procedures aimed at collecting the wishes of the person deprived of his or her discernment is source of dissonances with regard to the multiple interests involved in these care situations. In this context, the drafting of ADs during end-of-life care in NH correspond to new normative constraints requiring new collective regulation actions.
Purpose: We studied the prevalence of medications of questionable benefit in the last 6 months of life among older nursing home residents with and without dementia in Germany.
Methods: a retrospective cohort study was conducted on claims data from 67,328 deceased nursing home residents aged 65+ years who were admitted between 2010 and 2014. We analyzed prescription regimens of medications of questionable benefit in the 180–91-day period and the 90-day period prior to death for residents with dementia (n = 29,052) and without dementia (n = 38,276). Factors associated with new prescriptions of medications of questionable benefit prior to death were analyzed using logistic regression models among all nursing home residents and stratified by dementia.
Results: A higher proportion of nursing home residents with dementia were prescribed at least one medication of questionable benefit in the 180–91-day (29.6%) and 90-day (26.8%) periods prior to death, compared with residents without dementia (180–91 days, 22.8%; 90 days, 20.1%). Lipid-lowering agents were the most commonly prescribed medications. New prescriptions of medications of questionable benefit were more common among residents with dementia (9.8% vs. 8.7%). When excluding anti-dementia medication, new prescriptions of these medications were more common among residents without dementia (6.4% vs. 8.0%). The presence of dementia (odds ratio [OR] 1.40, 95% confidence interval [95%CI] 1.32–1.48) and excessive polypharmacy were associated with new prescriptions of medications of questionable benefit prior to death (OR 4.74, 95%CI 4.15–5.42).
Conclusion: even when accounting for anti-dementia prescriptions, the prevalence of nursing home residents with dementia receiving medications of questionable benefit is considerable and may require further attention.
Background: A substantial number of older adults die in residential aged care facilities, yet little is known about the characteristics of and how best to optimise medication use in the last year of life.
Aim: The aim of this review was to map characteristics of medication use in aged care residents during the last year of life in order to examine key concepts related to medication safety and draw implications for further research and service provision.
Design: A scoping review following Arskey and O’Malley’s framework was conducted using a targeted keyword search, followed by assessments of eligibility based on title and content of abstracts and full papers. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, the scoping review protocol was prospectively registered to the Open Science Framework on 27 November 2018.
Data Sources: We searched MEDLINE, EMBASE, AMED, CINAHL and Cochrane databases to identify peer-reviewed studies published between 1937 and 2018, written in English and looking at medication use in individuals living in aged care facilities within their last year of life.
Results: A total of 30 papers were reviewed. Five key overarching themes were derived from the analysis process: (1) access to medicines at the end of life, (2) categorisation and classes: medicines and populations, (3) polypharmacy and total medication numbers, (4) use of symptomatic versus preventive medications and (5) ‘inappropriate’ medications.
Conclusion: Number of prescriptions or blunt categorisations of medications to assess their appropriateness are unlikely to be sufficient to promote well-being and medication safety for older people in residential aged care in the final stages of life.
Background: There is insufficient high-quality evidence to suggest that palliative care education can impact care home settings.
Aims: To identify, appraise and synthesise all available evidence on the barriers and facilitators to providing palliative care education in residential and nursing care homes and to generate recommendations to increase the effectiveness of future palliative care education programmes in care homes.
Methods: A rapid review searching CINAHL, Medline and ProQuest. One author screened full-text articles for inclusion. Any uncertainties were discussed with a second author.
Findings: Twenty-two articles were included in the full review. Analysis of the included articles revealed the following overlapping themes: structural systems; cultural and personal issues; and knowledge translation issues with interaction.
Conclusion: Addressing the barriers and facilitators when designing palliative care education programmes for care homes will lead to more successful outcomes.
Un jeune garçon qui a des difficultés scolaires (DYS) apprend que son grand-père, atteint de la maladie d'Alzheimer, va être placé en maison de retraite. Il décrit le passé d'explorateur de son grand-père puis décide avec son camarade de classe, un garçon émigré d'Irak, de sauver son grand-père en partant à la recherche de la grand-mère disparue.
Background: Increased awareness of the clinical course of nursing home residents with advanced dementia and advance care planning (ACP) has become the cornerstone of good palliative care.
Objective: The aim of our study is to describe changes in ACP in the form of physician treatment orders (PTOs), symptom prevalence and possible burdensome interventions among nursing home (NH) residents who died between 2004–2009 and 2010–2013
Methods: Retrospective study
Results: The number of PTOs regarding forgoing antibiotics or parenteral antibiotics, forgoing artificial nutrition or hydration or forgoing hospitalisation doubled between 2004–2009 and 2010–2013 (38.1% vs. 64.9%, p < 0.001; 40.0% vs. 81.7%, p < 0.001; 28.1% vs. 69.5%, p < 0.001, respectively). PTOs were also done significantly earlier in 2010–2013 than in 2004–2009. The prevalence of distressing symptoms and possible burdensome interventions remained unchanged, although the prevalence of consistency with the PTOs was high.
Conclusion: Despite the increased number of PTOs, this had little effect on symptom prevalence and possible burdensome interventions experienced by NH residents in the last days of life.
Objectives: We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia.
Methods: Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, the Netherlands, Poland, and England. Nursing staff reported clinical events and assessed comfort. The nursing staff or physician assessed the presence of dementia; severity was determined using two highly discriminatory staff-reported instruments.
Results: The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia, and 419 without dementia (N = 1197). Across the three groups, pneumonia occurred in 24 to 27% of residents. Febrile episodes (unrelated to pneumonia) occurred in 39% of residents with advanced dementia, 34% in residents with other stages of dementia and 28% in residents without dementia (P = .03). Intake problems occurred in 74% of residents with advanced dementia, 55% in residents with other stages of dementia, and 48% in residents without dementia (P < .001). Overall, these three clinical events were inversely associated with comfort. Less comfort was observed in all resident groups who had pneumonia (advanced dementia, P = .04; other stages of dementia, P = .04; without dementia, P < .001). Among residents with intake problems, less comfort was observed only in those with other stages of dementia (P < .001) and without dementia (P = .003), while the presence and severity of dementia moderated this association (P = .03). Developing “other clinical events” was not associated with comfort.
Conclusions: Discomfort was observed in dying residents who developed major clinical events, especially pneumonia, which was not specific to advanced dementia. It is crucial to identify and address the clinical events potentially associated with discomfort in dying residents with and without dementia.
Religion and culture play important roles in influencing end-of-life communication among the elderly. However, little is known about end-of-life communication among elderly nursing home residents. A qualitative study involving a sample of 13 elderly residents of a non- government nursing home in the north of Peninsular Malaysia was conducted to investigate residents' attitudes and ideas about their end-of-life preferences. Thematic analysis was performed to identify major themes emerging from the interviews. This study found that elderly residents actively avoided end-of-life communication, but that their cultural and religious beliefs remained of paramount importance. It is hoped that these findings will provide a platform upon which to improve current nursing home care in Malaysia.
BACKGROUND AND OBJECTIVES: Transitioning to a nursing home (NH) is a major life event for 1.4 million NH residents in the United States. Most post-acute NH admissions plan for rehabilitation and discharge home, but with nearly 70% of NH residents being palliative care (PC) eligible, many evolve into long-term placements secondary to poor health and associated decline in function and/or cognition. This article describes the perceptions of NH PC-eligible residents and families transitioning to life in a NH.
METHODS: Residents at 3 NHs in Northern California (N = 228) were screened for PC eligibility. A convenience sample of PC-eligible residents and their family members (n = 28) participated in qualitative interviews that explored the experience of living as a NH resident with serious illness. Data were analyzed using grounded theory methodology.
RESULTS: Our study provides insights into the experiences of transitioning to a NH from the perspectives of PC-eligible residents and their families. These data describe how PC-eligible residents and their families experienced disempowerment as they perceived being left out of decisions to go to a NH, loss of autonomy once at the NH, dealt with the realization that they would not be going home, and described perceived barriers to going home.
DISCUSSION AND IMPLICATIONS: The inclusive and person-centered model of care that PC provides naturally empowers residents and family members. Adequate provision of PC services, together with changes in policy related to NH culture and benefit management, could improve the experience of transitioning to a nursing home.
The aim of this study was to compare the symptomatology, palliative care outcomes, therapeutic procedures, diagnostic tests, and pharmacological treatments for people with dementia (PWD) and without dementia (PW/OD) admitted to Spanish nursing homes.
DESIGN: This was a cross-sectional study which is part of a long-term prospective follow-up of elderly people performed in nursing homes to measure end-of-life care processes.
PARTICIPANTS: 107 nursing home patients with advanced or terminal chronic diseases were selected according to the criteria of the Palliative Care Spanish Society.
SETTING: Two trained nurses from each nursing home were responsible for participant selection and data collection. They must have treated the residents and had a minimum seniority of 6 months in the nursing home.
MEASUREMENTS: Sociodemographic data; Edmonton Symptom Assessment Scale; Palliative Care Outcome Scale; and prevalence of diagnostic tests, pharmacological treatments, and therapeutic procedures were evaluated.
RESULTS: Pain, fatigue, and nausea were found to be significantly higher in the nondementia group and insomnia, poor appetite, and drowsiness were significantly higher in the dementia group. Patient anxiety, support, feeling that life was worth living, self-worth, and practical matters management were higher in the nondementia group. Regarding drugs, use of corticoids was higher in the nondementia group, while use of anxiolytics was higher in the dementia group. Diagnostic procedures such as urine analysis and X-ray were higher in the dementia group.
CONCLUSIONS: Differences in symptom perception, diagnostic tests, and pharmacological procedures were found between patients with and without dementia. Specific diagnostic tools need to be developed for patients with dementia.
AIMS: New Zealanders dying in public hospitals or hospices are increasingly being discharged and admitted-to-die in aged residential care (ARC) facilities as hospitals and hospices struggle to meet demand. This study sought to investigate how care is delivered to patients admitted-to-die in an ARC facility.
METHODS: A mixed-methods case study including a clinical notes review of seven patients who died in one ARC facility within three months of admission and a focus group with ARC facility staff and visiting professionals from other organisations.
RESULTS: The clinical notes review showed a high burden of palliative care symptoms that constituted specialist palliative care, provided by ARC staff plus professionals from other organisations. Focus group data showed those involved were willing, but expressed significant concern about lack of structure and funding.
CONCLUSIONS: As our increasing and aging population reaches end-of-life, New Zealand hospitals/hospices will not be able to provide ongoing specialist palliative care and admission-to-die in ARC facilities may be a viable alternative. However, ARC facilities are not set up or staffed to provide specialist palliative care of those admitted-to-die. A specific model of care that is funded appropriately is required.
OBJECTIVES: We investigated trends in end-of-life hospitalizations among nursing home residents (NHR) over 10 years and looked at differences between age groups and sexes as well as the length of terminal hospital stays.
STUDY DESIGN: Retrospective cohort study based on health insurance claims data of the AOK Bremen/Bremerhaven. All NHR aged 65 years or more who died between 2006 and 2015 were included.
MAIN OUTCOME MEASURES: We assessed the proportions of decedents who were in hospital on the day of death and during the last 3, 7, 14 and 30 days of life, stratified by two-year periods. Multiple logistic regressions were conducted to study changes over time, adjusting for covariates.
RESULTS: A total of 10,781 decedents were included (mean age 86.1 years, 72.1 % females). Overall, 29.2 % died in hospital, with a slight decrease from 30.3 % in 2006-2007 to 28.3 % in 2014-2015 (OR 0.86; 95 % CI 0.75-0.98). Of the 3150 terminal hospitalizations, 35.5 % lasted up to 3 days and the mean length of stay decreased from 9.0 (2006-2007) to 7.5 days (2014-2015). When looking at the last 7, 14 and 30 days of life, no changes over time were found. Male sex and younger age were associated with a higher chance of end-of-life hospitalization in almost all analyses.
CONCLUSIONS: End-of-life hospitalizations of NHR are common in Germany. There has been a small decrease during recent years in the proportion of in-hospital deaths, but not of hospitalizations during the last 7, 14 and 30 days of life. This might be explained by shorter durations of hospital stays.
BACKGROUND: Infections are common occurrences at end of life that are associated with high rates of morbidity and mortality among frail elderly individuals. The problem of infections in nursing homes has led to a subsequent overuse and misuse of antibiotics in this already-frail population. Improving palliative care in nursing homes has been proposed as a key strategy to reduce the use of antibiotics.
AIM: The aim of this study was to describe the current status of how nursing homes integrates palliative care and infection management at end of life across the nation.
DESIGN: This is a cross-sectional survey of nationally representative US nursing homes.
SETTING/PARTICIPANTS: Between November 2017 and October 2018, a survey was conducted with a nationally representative random sample of nursing homes and 892 surveys were completed (49% response rate). The weighted study sample represented 15,381 nursing homes across the nation.
RESULTS: Most nursing homes engaged in care plan documentation on what is important to residents (90.43%) and discussed spiritual needs of terminally ill residents (89.50%). In the event of aspiration pneumonia in terminally ill residents, 59.43% of nursing homes responded that resident would be transferred to the hospital. In suspected urinary tract infection among terminally ill residents, 66.62% of nursing homes responded that the resident will be treated with antibiotics.
CONCLUSION: The study found wide variations in nursing home palliative care practices, particularly for timing of end-of-life care discussions, and suboptimal care reported for antibiotic usage. Further education for nursing home staff on appropriate antibiotic usage and best practices to integrate infection management in palliative care at the end of life is needed.
The aim of the study is to evaluate the intensity of symptoms, and any treatment and therapeutic procedures received by advanced chronic patients in nursing homes. A multi-centre prospective study was conducted in six nursing homes for five months. A nurse trainer selected palliative care patients from whom the sample was randomly selected for inclusion. The Edmonton Symptoms Assessment Scale, therapeutic procedures, and treatment were evaluated. Parametric and non-parametric tests were used to evaluate month-to-month differences and differences between those who died and those who did not. A total of 107 residents were evaluated. At the end of the follow-up, 39 had (34.6%) died. All symptoms (p < 0.050) increased in intensity in the last week of life. Symptoms were more intense in those who had died at follow-up (p < 0.05). The use of aerosol sprays (p = 0.008), oxygen therapy (p < 0.001), opioids (p < 0.001), antibiotics (p = 0.004), and bronchodilators (p = 0.003) increased in the last week of life. Peripheral venous catheters (p = 0.022), corticoids (p = 0.007), antiemetics (p < 0.001), and antidepressants (p < 0.05) were used more in the patients who died. In conclusion, the use of therapeutic procedures (such as urinary catheters, peripheral venous catheter placement, and enteral feeding) and drugs (such as antibiotics, anxiolytics, and new antidepressant prescriptions) should be carefully considered in this clinical setting.
OBJECTIVES; To evaluate the prevalence and factors associated with statin pharmacotherapy in long-stay nursing home residents with life-limiting illness.
SETTING: US Medicare- and Medicaid-certified nursing home facilities.
PARTICIPANTS: Long-stay nursing home resident Medicare fee-for-service beneficiaries aged 65 years or older with life-limiting illness (n = 424 212).
MEASUREMENTS: Prevalent statin use was estimated as any low-moderate intensity (daily dose low-density lipoprotein-cholesterol [LDL-C] reduction <30%-50%) and high-intensity (daily dose LDL-C reduction >50%) use via Medicare Part D claims for a prescription supply on September 30, 2016, with a 90-day look-back period. Life-limiting illness was operationally defined to capture those near the end of life using evidence-based criteria to identify progressive terminal conditions or limited prognoses (<6 mo). Poisson models provided estimates of adjusted prevalence ratios and 95% confidence intervals for resident factors.
RESULTS: A total of 34% of residents with life-limiting illness were prescribed statins (65--75 y = 44.0%, high intensity = 11.1%; >75 y = 31.1%, high intensity = 5.4%). Prevalence of statins varied by life-limiting illness definition. Of those with a prognosis of less than 6 months, 23% of the 65 to 75 and 12% of the older than 75 age groups were on statins. Factors positively associated with statin use included minority race or ethnicity, use of more than five concurrent medications, and atherosclerotic cardiovascular disease or risk factors.
CONCLUSION: Despite having a life-limiting illness, more than one-third of clinically compromised long-stay nursing home residents remain on statins. Although recent national guidelines have expanded indications for statins, the benefit of continued therapy in an advanced age population near the end of life is questionable. Efforts to deprescribe statins in the nursing home setting may be warranted.
This exploratory study examined general practitioners' (GPs) perspectives on delivering end-of-life care in the New Zealand residential aged care context. A general inductive approach to the data collected from semi-structured interviews with 17 GPs from 15 different New Zealand general practices was taken. Findings examine: (1) GPs' life experience; (2) the GP relationship with the facilities and provision of end-of-life care; (3) the GP interaction with families of dying residents; and (4) GP relationship with hospice. The nature of the GP relationship with the facility influenced GP involvement in end-of-life care in aged care facilities, with GPs not always able to direct a facility's end-of-life care decisions for specific residents. GP participation in end-of-life care was constrained by GP time availability and the costs to the facilities for that time. GPs reported seldom using hospice services for residents, but did use the reputation (cachet) associated with hospice practices to provide an authoritative buffer for their end-of-life clinical decisions when talking with families and residents. GP training in end-of-life care, especially for those with dementia, was reported as ad hoc and done through informal mentoring between GPs.
OBJECTIVES: Many older adults with limited life expectancy and/or advanced dementia (LLE/AD) are potentially overtreated for diabetes and may benefit from deintensification. Our aim was to examine the incidence and predictors of diabetes medication deintensification in older Veterans with LLE/AD who were potentially overtreated at admission to Veterans Affairs (VA) nursing homes (community living centers [CLCs]).
DESIGN: Retrospective cohort study using linked VA and Medicare clinical/administrative data and Minimum Data Set assessments.
SETTING: VA CLCs.
PARTICIPANTS: A total of 6960 Veterans with diabetes and LLE/AD admitted to VA CLCs in fiscal years 2009 to 2015 with hemoglobin (Hb)A1c measured within 90 days of admission.
MEASUREMENTS: We evaluated treatment deintensification (discontinuation or dose reduction for a consecutive 7-day period) among residents who were potentially overtreated (HbA1c =7.5% and receiving hypoglycemic medications). Competing risk models assessed 90-day cumulative incidence of deintensification.
RESULTS: More than 40% (n = 3056) of Veteran CLC residents with diabetes were potentially overtreated. The cumulative incidence of deintensification at 90 days was 45.5%. Higher baseline HbA1c values were associated with a lower likelihood of deintensification (e.g., HbA1c 7.0-7.5% vs <6.0%; adjusted risk ratio [aRR] = .57; 95% confidence interval [CI] = .50-.66). Compared with non-sulfonylurea oral agents (e.g., metformin), other treatment regimens were more likely to be deintensified (aRR = 1.31-1.88), except for basal insulin (aRR = .59; 95% CI = .52-.66). The only resident factor associated with increased likelihood of deintensification was documented end-of-life status (aRR = 1.12; 95% CI = 1.01-1.25). Admission from home/assisted living (aRR = .85; 95% CI = .75-.96), obesity (aRR = .88; 95% CI = .78-.99), and peripheral vascular disease (aRR = .90; 95% CI = .81-.99) were associated with decreased likelihood of deintensification.
CONCLUSION: Deintensification of treatment regimens occurred in less than one-half of potentially overtreated Veterans and was more strongly associated with low HbA1c values and use of medications with high risk for hypoglycemia, rather than other resident characteristics.
BACKGROUND: Care home residents are increasingly frail with complex health and social care needs. Their transfer to hospital at the end-of-life can be associated with unwanted interventions and distress. However, hospitals do enable provision of care that some residents wish to receive. We aimed to explore the factors that influence hospital admission of care home residents who then died in hospital.
METHODS: This study combined in-depth case note review of care home residents dying in two Scottish teaching hospitals during a 6-month period and semi-structured interviews with a purposive sample of 26 care home staff and two relatives.
RESULTS: During the 6-month period, 109 care home residents died in hospital. Most admissions occurred out-of-hours (69%) and most were due to a sudden event or acute change in clinical condition (72%). Length of stay in hospital before death was short, with 42% of deaths occurring within 3 days. Anticipatory Care Planning (ACP) regarding hospital admission was documented in 44%.Care home staff wanted to care for residents who were dying; however, uncertain trajectories of decline, acute events, challenges of ACP, relationship with family and lack of external support impeded this.
CONCLUSIONS: Managing acute changes on the background of uncertain trajectories is challenging in care homes. Enhanced support is required to improve and embed ACP in care homes and to provide rapid, 24 hours-a-day support to manage difficult symptoms and acute changes.