Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care.

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

The ethics of pet robots in dementia care settings: Care professionals' and organisational leaders' ethical intuitions.

Background: Pet robots are gaining momentum as a technology-based intervention to support the psychosocial wellbeing of people with dementia. Current research suggests that they can reduce agitation, improve mood and social engagement. The implementation of pet robots in care for persons with dementia raises several ethical debates. However, there is a paucity of empirical evidence to uncover care providers' ethical intuitions, defined as individuals' fundamental moral knowledge that are not underpinned by any specific propositions. Objectives: Explore care professionals' and organisational leaders' ethical intuitions before and when implementing pet robots in nursing homes for routine dementia care. Materials and methods: We undertook a secondary qualitative analysis of data generated from in-depth, semi-structured interviews with 22 care professionals and organisational leaders from eight nursing homes in Ireland. Data were analysed using reflexive thematic analysis. Ethical constructs derived from a comprehensive review of argument-based ethics literature were used to guide the deductive coding of concepts. An inductive approach was used to generate open codes not falling within the pre-existing concepts. Findings: Ethical intuitions for implementing pet robots manifested at three levels: an (1) individual-relational, (2) organisational and (3) societal level. At the individual-relational level, ethical intuitions involved supporting the autonomy of residents and care providers, using the robots to alleviate residents' social isolation, and the physical and psychosocial impacts associated with their use. Some care providers had differing sentiments about anthropomorphizing pet robots. At the organisational level, intuitions related to the use of pet robots to relieve care provision, changes to the organisational workflow, and varying extents of openness amongst care providers to use technological innovations. At the societal level, intuitions pertained conceptions of dementia care in nursing homes, and social justice relating to the affordability and availability of pet robots. Discrepancies between participants' ethical intuitions and existing philosophical arguments were uncovered. Conclusion: Care professionals and organisational leaders had different opinions on how pet robots are or should be implemented for residents with dementia. Future research should consider involving care practitioners, people with dementia, and their family members in the ethics dialogue to support the sustainable, ethical use of pet robots in practice.

Improved quality of care and reduced healthcare costs at the end-of-life among older people with dementia who received palliative home care: A nationwide propensity score-matched decedent cohort study.

BACKGROUND: While palliative home care is advocated for people with dementia, evidence of its effectiveness is lacking. AIM: To evaluate the effects of palliative home care on quality and costs of end-of-life care for older people with dementia. DESIGN: Decedent cohort study using linked nationwide administrative databases and propensity score matching. SETTING/PARTICIPANTS: All home-dwelling older people who died with dementia between 2010 and 2015 in Belgium (N = 23,670). EXPOSURE: Receiving palliative home care support for the first time between 360 and 15 days before death. RESULTS: Five thousand six hundred and thirty-seven (23.8%) received palliative home care support in the last 2 years of life, of whom 2918 received it for the first time between 360 and 15 days before death. Two thousand eight hundred and thirty-nine people who received support were matched to 2839 people who received usual care. After matching, those using palliative home care support, in the last 14 days of life, had lower risk of hospital admission (17.5% vs 50.5%; relative risk (RR) = 0.21), undergoing diagnostic testing (17.0% vs 53.6%; RR = 0.20) and receiving inappropriate medications, but were more likely to die at home (75.7% vs 32.6%; RR = 6.45) and to have primary care professional contacts (mean 11.7 vs mean 5.2), compared with those who did not. Further, they had lower mean total costs of care in the last 30 days of life (incremental cost:-€2129). CONCLUSIONS: Palliative home care use by home-dwelling older people with dementia is associated with improved quality and reduced costs of end-of-life care. Access remains low and should be increased.

Decreased costs and retained QoL due to the 'PACE Steps to Success' intervention in LTCFs: cost-effectiveness analysis of a randomized controlled trial.

BACKGROUND: The number of residents in long-term care facilities (LTCFs) in need of palliative care is growing in the Western world. Therefore, it is foreseen that significantly higher percentages of budgets will be spent on palliative care. However, cost-effectiveness analyses of palliative care interventions in these settings are lacking. Therefore, the objective of this paper was to assess the cost-effectiveness of the 'PACE Steps to Success' intervention. PACE (Palliative Care for Older People) is a 1-year palliative care programme aiming at integrating general palliative care into day-to-day routines in LTCFs, throughout seven EU countries. METHODS: A cluster RCT was conducted. LTCFs were randomly assigned to intervention or usual care. LTCFs reported deaths of residents, about whom questionnaires were filled in retrospectively about resource use and quality of the last month of life. A health care perspective was adopted. Direct medical costs, QALYs based on the EQ-5D-5L and costs per quality increase measured with the QOD-LTC were outcome measures. RESULTS: Although outcomes on the EQ-5D-5L remained the same, a significant increase on the QOD-LTC (3.19 points, p value 0.00) and significant cost-savings were achieved in the intervention group (€983.28, p value 0.020). The cost reduction mainly resulted from decreased hospitalization-related costs (€919.51, p value 0.018). CONCLUSIONS: Costs decreased and QoL was retained due to the PACE Steps to Success intervention. Significant cost savings and improvement in quality of end of life (care) as measured with the QOD-LTC were achieved. A clinically relevant difference of almost 3 nights shorter hospitalizations in favour of the intervention group was found. This indicates that timely palliative care in the LTCF setting can prevent lengthy hospitalizations while retaining QoL. In line with earlier findings, we conclude that integrating general palliative care into daily routine in LTCFs can be cost-effective. TRIAL REGISTRATION: ISRCTN14741671 .

Length of stay in long-term care facilities: a comparison of residents in six European countries. Results of the PACE cross-sectional study.

OBJECTIVES: This paper aims to investigate resident, facility and country characteristics associated with length of stay in long-term care facilities (LTCFs) across six European countries. SETTING: Data from a cross-sectional study of deceased residents, conducted in LTCFs in Belgium, England, Finland, Italy, the Netherlands and Poland. PARTICIPANTS: All residents aged 65 years and older at admission who died in a 3-month period residing in a proportional random sample of LTCFs were included. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was length of stay in days, calculated from date of admission and date of death. Resident, facility and country characteristics were included in a proportional hazards model. RESULTS: The proportion of deaths within 1 year of admission was 42% (range 32%-63%). Older age at admission (HR 1.04, 95% CI 1.03 to 1.06), being married/in a civil partnership at time of death (HR 1.47, 95% CI 1.13 to 1.89), having cancer at time of death (HR 1.60, 95% CI 1.22 to 2.10) and admission from a hospital (HR 1.84, 95% CI 1.43 to 2.37) or another LTCF (HR 1.81, 95% CI 1.37 to 2.40) were associated with shorter lengths of stay across all countries. Being female (HR 0.72, 95% CI 0.57 to 0.90) was associated with longer lengths of stay. CONCLUSIONS: Length of stay varied significantly between countries. Factors prior to LTCF admission, in particular the availability of resources that allow an older adult to remain living in the community, appear to influence length of stay. Further research is needed to explore the availability of long-term care in the community prior to admission and its influence on the trajectories of LTCF residents in Europe.

Are We Evolving Toward Greater and Earlier Use of Palliative Home Care Support? A Trend Analysis Using Population-Level Data From 2010 to 2015.

CONTEXT: The need for increased use and earlier initiation of palliative home care has been advocated by several international organizations. OBJECTIVES: To investigate time trends in the use and timing of initiating palliative home care support (PHCS). METHODS: We conducted an observational study using routinely collected population-level databases linked with health claims data for the entire population living at home that died of diseases indicative of palliative care needs in Belgium between 2010 and 2015 (n = 230,704). Trends and trends by cause of death and age were measured through changes over time in prevalence of use of PHCS. Rates were standardized for age, sex, and cause of death distribution in 2010. The median number of days before death when PHCS was initiated was calculated for each year. RESULTS: Uptake of PHCS increased from 31.7% to 34.9% between 2010 and 2015. Trends were similar in size for all groups, except for people who died of dementia (smallest increase with 1.9 percent point). The timing of initiating PHCS advanced from 41 to 46 days before death, with the smallest increase observed among people who died of dementia (+2.5 days). The proportion of people receiving PHCS only in the last week of life changed from 15.3% to 13.9%. CONCLUSION: This population-level study found a slight trend toward more and earlier initiation of PHCS between 2010 and 2015. However, uptake of PHCS remained below estimated needs in the population and the proportion of people receiving PHCS in their very late life remained stable over time.

Quality of primary palliative care for older people with mild and severe dementia: an international mortality follow-back study using quality indicators.

Background: measuring the quality of primary palliative care for older people with dementia in different countries is important to identify areas where improvements can be made. Objective: using quality indicators (QIs), we systematically investigated the overall quality of primary palliative care for older people with dementia in three different countries. Design/setting: a mortality follow-back survey through nation- and region-wide representative Sentinel Networks of General Practitioners (GPs) in Belgium, Italy and Spain. GPs registered all patient deaths in their practice. We applied a set of nine QIs developed through literature review and expert consensus. Subjects: patients aged 65 or older, who died non-suddenly with mild or severe dementia as judged by GPs (n = 874). Results: findings showed significantly different QI scores between Belgium and Italy for regular pain measurement (mild dementia: BE = 44%, IT = 12%, SP = 50% | severe dementia: BE = 41%, IT = 9%, SP = 47%), acceptance of approaching death (mild: BE = 59%, IT = 48%, SP = 33% | severe: BE = 41%, IT = 21%, SP = 20%), patient-GP communication about illness (mild: BE = 42%, IT = 6%, SP = 20%) and involvement of specialised palliative services (mild: BE = 60%, IT = 20%, SP = 77%). The scores in Belgium differed from Italy and Spain for patient-GP communication about medical treatments (mild: BE = 34%, IT = 12%, SP = 4%) and repeated multidisciplinary consultations (mild: BE = 39%, IT = 5%, SP = 8% | severe: BE = 36%, IT = 10%, SP = 8%). The scores for relative-GP communication, patient death outside hospitals and bereavement counselling did not differ between countries. Conclusion: while the countries studied differed considerably in the overall quality of primary palliative care, they have similarities in room for improvement, in particular, pain measurement and prevention of avoidable hospitalisations.

Integrating palliative care in long-term care facilities across Europe (PACE): protocol of a cluster randomized controlled trial of the 'PACE Steps to Success' intervention in seven countries.

BACKGROUND: Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-effectiveness of the 'PACE Steps to Success' palliative care intervention for older people in long-term care facilities, and 2) assess the implementation process and identify facilitators and barriers for implementation in different countries. METHODS: We will conduct a multi-facility cluster randomised controlled trial in Belgium, Finland, Italy, the Netherlands, Poland, Switzerland and England. In total, 72 facilities will be randomized to receive the 'Pace Steps to Success intervention' or to 'care as usual'. Primary outcome at resident level: quality of dying (CAD-EOLD); and at staff level: staff knowledge of palliative care (Palliative Care Survey). SECONDARY OUTCOMES: resident's quality of end-of-life care, staff self-efficacy, self-perceived educational needs, and opinions on palliative care. Economic outcomes: direct costs and quality-adjusted life years (QALYs). Measurements are performed at baseline and after the intervention. For the resident-level outcomes, facilities report all deaths of residents in and outside the facilities over a previous four-month period and structured questionnaires are sent to (1) the administrator, (2) staff member most involved in care (3) treating general practitioner, and (4) a relative. For the staff-level outcomes, all staff who are working in the facilities are asked to complete a structured questionnaire. A process evaluation will run alongside the effectiveness evaluation in the intervention group using the RE-AIM framework. DISCUSSION: The lack of high quality trials in palliative care has been recognized throughout the field of palliative care research. This cross-national cluster RCT designed to evaluate the impact of the palliative care intervention for long-term care facilities 'PACE Steps to Success' in seven countries, will provide important evidence concerning the effectiveness as well as the preconditions for optimal implementation of palliative care in nursing homes, and this within different health care systems. TRIAL REGISTRATION: The study is registered at www.isrctn.com - ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) Registration date: July 30, 2015.

The use of Quality-Adjusted Life Years in cost-effectiveness analyses in palliative care: Mapping the debate through an integrative review.

BACKGROUND: In cost-effectiveness analyses in healthcare, Quality-Adjusted Life Years are often used as outcome measure of effectiveness. However, there is an ongoing debate concerning the appropriateness of its use for decision-making in palliative care. AIM: To systematically map pros and cons of using the Quality-Adjusted Life Year to inform decisions on resource allocation among palliative care interventions, as brought forward in the debate, and to discuss the Quality-Adjusted Life Year's value for palliative care. DESIGN: The integrative review method of Whittemore and Knafl was followed. Theoretical arguments and empirical findings were mapped. DATA SOURCES: A literature search was conducted in PubMed, EMBASE, and CINAHL, in which MeSH (Medical Subject Headings) terms were Palliative Care, Cost-Benefit Analysis, Quality of Life, and Quality-Adjusted Life Years. FINDINGS: Three themes regarding the pros and cons were identified: (1) restrictions in life years gained, (2) conceptualization of quality of life and its measurement, including suggestions to adapt this, and (3) valuation and additivity of time, referring to changing valuation of time. The debate is recognized in empirical studies, but alternatives not yet applied. CONCLUSION: The Quality-Adjusted Life Year might be more valuable for palliative care if specific issues are taken into account. Despite restrictions in life years gained, Quality-Adjusted Life Years can be achieved in palliative care. However, in measuring quality of life, we recommend to-in addition to the EQ-5D- make use of quality of life or capability instruments specifically for palliative care. Also, we suggest exploring the possibility of integrating valuation of time in a non-linear way in the Quality-Adjusted Life Year.

Differences in out-of-pocket costs of healthcare in the last year of life of older people in 13 European countries.

BACKGROUND: Research on the costs of healthcare provision has so far focused on insurer costs rather than out-of-pocket costs. Out-of-pocket costs may be important to patients making medical decisions. AIM: To investigate the self-reported out-of-pocket costs associated with healthcare in the last year of life of older adults in Europe. DESIGN: A post-death survey, part of the Survey of Health, Ageing, and Retirement in Europe, completed by proxy respondents in four waves from 2005 to 2012. SETTING/PARTICIPANTS: Proxy respondents for 2501 deceased adults of 55 years or over. Data from 13 European countries and four waves from 2005 to 2012 were used. RESULTS: The proportion of people with out-of-pocket costs ranged from 21% to 96% in different European Union countries. Out-of-pocket costs ranged from 2% to 25% of median household income. Secondary and institutional care was most often the largest contributor to out-of-pocket costs, with care received in a care home being the most expensive type of care in 11 of 13 countries. Multilevel analyses showed that limitations in more than two activities of daily living (coefficient = 6.47, 95% confidence interval = 1.81-11.14) and a total hospitalization time of 3-6 months (coefficient = 14.66; 95% confidence interval = 0.97-28.35) or more than 6 months (coefficient = 31.01; 95% confidence interval = 11.98-50.15) were associated with higher out-of-pocket costs. In total, 24% of the variance on a country level remained unexplained. CONCLUSION: Variation in out-of-pocket costs for healthcare in the last year of life between European countries indicates that countries face different challenges in making healthcare in the last year of life affordable for all.

Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries.

BACKGROUND: Studying where people die across countries can serve as an evidence base for health policy on end-of-life care. This study describes the place of death of people who died from diseases indicative of palliative care need in 14 countries, the association of place of death with cause of death, sociodemographic and healthcare availability characteristics in each country and the extent to which these characteristics explain country differences in the place of death. METHODS: Death certificate data for all deaths in 2008 (age ≥1 year) in Belgium, Canada, the Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (Andalusia), the USA and Wales caused by cancer, heart/renal/liver failure, chronic obstructive pulmonary disease, diseases of the nervous system or HIV/AIDS were linked with national or regional healthcare statistics (N=2,220,997). RESULTS: 13% (Canada) to 53% (Mexico) of people died at home and 25% (the Netherlands) to 85% (South Korea) died in hospital. The strength and direction of associations between home death and cause of death, sociodemographic and healthcare availability factors differed between countries. Differences between countries in home versus hospital death were only partly explained by differences in these factors. CONCLUSIONS: The large differences between countries in and beyond Europe in the place of death of people in potential need of palliative care are not entirely attributable to sociodemographic characteristics, cause of death or availability of healthcare resources, which suggests that countries' palliative and end-of-life care policies may influence where people die.

How to implement quality indicators successfully in palliative care services: perceptions of team members about facilitators of and barriers to implementation.

PURPOSE: There is an increasing demand for the use of quality indicators in palliative care. With previous research about implementation in this field lacking, we aimed to evaluate the barriers to and facilitators of implementation. METHODS: Three focus group interviews were organized with 21 caregivers from 18 different specialized palliative care services in Belgium. Four had already worked with the indicators during a pilot study. The focus group discussions were transcribed verbatim and analyzed using the thematic framework approach. RESULTS: The caregivers anticipated that a positive attitude by the team towards quality improvement, the presence of a good leader, and the possible link between quality indicators and reimbursement might facilitate the implementation of quality indicators in specialized palliative care services. Other facilitators concerned the presence of a need to demonstrate quality of care, to perform improvement actions, and to learn from other caregivers and services in the field. A negative attitude by caregivers towards quality measurement and a lack of skills, time, and staff were mentioned as barriers to successful implementation. CONCLUSION: Palliative caregivers anticipate a number of opportunities and problems when implementing quality indicators. These relate to the attitudes of the team regarding quality measurement; the attitudes, knowledge, and skills of the individual caregivers within the team; and the organizational context and the economic and political context. Training in the advantages of quality indicators and how to use them is indispensable, as are structural changes in the policy concerning palliative care, in order to progress towards systematic quality monitoring.

Burden on family carers and care-related financial strain at the end of life: a cross-national population-based study.

BACKGROUND: The rising number of deaths from cancer and other life-limiting illnesses is accompanied by a growing number of family carers who provide long-lasting care, including end-of-life care. This population-based epidemiological study aimed to describe and compare in four European countries the prevalence of and factors associated with physical or emotional overburden and difficulties in covering care-related costs among family carers of people at the end of life. METHODS: A cross-national retrospective study was conducted via nationwide representative sentinel networks of general practitioners (GPs). Using a standardized form, GPs in Belgium, The Netherlands, Italy and Spain recorded information on the last 3 months of life of every deceased adult practice patient (1 January 2009-31 December 2010). Sudden deaths were excluded. RESULTS: We studied 4466 deaths. GPs judged family carers of 28% (Belgium), 30% (The Netherlands), 35% (Spain) and 71% (Italy) of patients as physically/emotionally overburdened (P < 0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P < 0.001). Patients <85 years of age (Belgium, Italy) had higher odds of having physically/emotionally overburdened family carers and financial burden. Death from non-malignant illness (vs. cancer) (Belgium and Italy) and dying at home compared with other locations (The Netherlands and Italy) were associated with higher odds of difficulties in covering care-related costs. CONCLUSION: In all countries studied, and particularly in Italy, GPs observed a considerable extent of physical/emotional overburden as well as difficulties in covering care-related costs among family carers of people at the end of life. Implications for health- and social care policies are discussed.

The perception of patients' rights among Belgian population.

The aim of this study was to explore the knowledge and perception of specific patients' rights and the problems experienced with their fulfilment among the Belgian population. Participants were recruited through patient association groups and health insurance companies. They completed an Internet-based questionnaire with 20 questions concerning patients' rights. In total, 309 persons completed all questions. The mean age of participants was 46 years (SD = 15), 58% of them were women. Participants judged patients' rights concerning the end of life (88%), affordable health care (87%) and information about health status (85%) as the most important issues. Participants particularly showed concern about their legal rights for care offered in the patients' own language (21%), euthanasia (15%) and affordable health care (14%). The most important problems experienced so far were related to care offered in the patients' own language (12%), affordable health care (11%) and access to their medical file (7%).

Dying at home in Belgium: a descriptive GP interview study.

BACKGROUND: While increasing attention is being paid to enabling terminal patients to remain at home until death, limited information is available on the circumstances in which people at home actually die. Therefore this study aims to describe patient characteristics, functional and cognitive status and physical and psychological symptom burden in the last three months of life among Belgian patients dying at home, according to their GPs. METHODS: In 2005, a nationwide and retrospective interview study with GPs took place on people dying at home in Belgium as reported by Sentinel Network of GPs in Belgium. GPs registered all deaths (patients aged 1 year or more) weekly and were interviewed about all patients dying non-suddenly at home, using face-to-face structured interviews. RESULTS: Interviews were obtained on 205 patients (90% response rate). Between the second and third month before death, 55% were fully invalid or limited in self-care. In the last week of life, almost all were fully invalid. Fifty four percent were unconscious at some point during the last week; 46% were fully conscious. Most frequently reported symptoms were lack of energy, lack of appetite and feeling drowsy. Conditions most difficult for GPs to manage were shortness of breath, lack of energy and pain. CONCLUSIONS: Many people dying at home under the care of their GPs in Belgium function relatively well until the last week of life and cognitive status seems to be preserved until the end in many cases. However, symptoms which GPs find difficult to control still manifest in many patients in the final week of life.

Is individual educational level related to end-of-life care use? Results from a nationwide retrospective cohort study in Belgium.

BACKGROUND: Educational level has repeatedly been identified as an important determinant of access to health care, but little is known about its influence on end-of-life care use. OBJECTIVES: To examine the relationship between individual educational attainment and end-of-life care use and to assess the importance of individual educational attainment in explaining differential end-of-life care use. RESEARCH DESIGN: A retrospective cohort study via a nationwide sentinel network of general practitioners (GPs; SENTI-MELC Study) provided data on end-of-life care utilization. Multilevel analysis was used to model the association between educational level and health care use, adjusting for individual and contextual confounders based upon Andersen's behavioral model of health services use. SUBJECTS: A Belgian nationwide representative sample of people who died not suddenly in 2005-2007. RESULTS: In comparison to their less educated counterparts, higher educated people equally often had a palliative treatment goal but more often used multidisciplinary palliative care services (odds ratios [OR] for lower secondary education 1.28 [1.04-1.59] and for higher [secondary] education: 1.31 [1.02-1.68]), moved between care settings more frequently (OR: 1.68 [1.13-2.48] for lower secondary education and 1.51 [0.93-2.48] for higher [secondary] education) and had more contacts with the GP in the final 3 months of life. CONCLUSIONS: Less well-educated people appear to be disadvantaged in terms of access to specialist palliative care services, and GP contacts at the end of life, suggesting a need for empowerment of less well-educated terminally ill people regarding specialist palliative and general end-of-life care use.