Tinne Smets

Comparing Palliative Care in Care Homes Across Europe (PACE): Protocol of a Cross-sectional Study of Deceased Residents in 6 EU Countries

OBJECTIVESnAlthough a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Cross-country representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare 6 countries in terms of (1) resident outcomes, quality and costs of palliative and end-of-life care; and (2) palliative care structures and staff knowledge and attitudes toward palliative care. We also aim to explore country, facility, staff, patient, and care characteristics related to better outcomes at resident level.nnnDESIGN AND METHODSnTo obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland, and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous 3-month period. For each case, structured questionnaires, including validated instruments, are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (general practitioner or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and sociodemographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at the facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes.nnnCONCLUSIONnConsidering the growing challenges associated with aging in all European countries, there is an urgent need to build a robust international comparative evidence base that can inform the development of policies to target improved palliative care in care homes. By describing this research protocol, we hope to inform international research in care homes on how to perform representative end-of-life care research in these settings and better understand which systems are associated with better outcomes.

Preconditions for successful advance care planning in nursing homes : a systematic review

OBJECTIVESnThere is growing evidence of the potential effectiveness of advance care planning. Yet important knowledge gaps remain regarding the preconditions for successful implementation of advance care planning in the nursing home setting. We aim to identify the preconditions related to successful advance care planning in the nursing home setting. By specifying those, we would be able to make well-founded choices for the future design and planning of advance care planning intervention programs.nnnDESIGNnA systematic review.nnnDATA SOURCESnPubMed, PsycINFO, EMBASE and CINAHL.nnnREVIEW METHODSnTwo authors independently screened publications. One author assessed methodological quality and extracted textual data, which was double-checked for a random sample. We extracted textual data and used thematic synthesis to identify preconditions, defined as requirements, conditions and elements necessary to achieve the desired outcome of advance care planning, i.e. attaining concordance between residents preferences and actual care or treatment received at the end of life.nnnMAIN FINDINGSnBased on 38 publications, we identified 17 preconditions at five different levels: resident, family, health-care professional, facility and community. Most preconditions were situated on multiple levels but the majority addressed professionals and the nursing home itself. We summarized preconditions in five domains: to have sufficient knowledge and skills, to be willing and able to participate in advance care planning, to have good relationships, to have an administrative system in place, and contextual factors supporting advance care planning within the nursing home.nnnCONCLUSIONnThere are multiple preconditions related to successfully implementing advance care planning in the complex nursing home setting that operate at micro, meso and macro level. Future interventions need to address these multiple domains and levels in a whole-system approach in order to be better implementable and more sustainable, while simultaneously target the important role of the health-care professional and the facility itself.

Prescription and Deprescription of Medication During the Last 48 Hours of Life: Multicenter Study in 23 Acute Geriatric Wards in Flanders, Belgium.

CONTEXTnPalliative care for the older person is often limited, resulting in poor quality of dying. Pharmacological management can be one of the components to achieve better symptom control.nnnOBJECTIVESnTo describe the anticipatory prescription of medication for symptomatic treatment and the deprescription of potentially inappropriate medication during the last days of life.nnnMETHODSnThis was a cross-sectional descriptive study between October 1, 2012 and September 30, 2013 in 23 acute geriatric wards in Flanders, Belgium. Structured after-death questionnaires were filled out by the treating geriatrician for patients hospitalized for more than 48xa0hours before dying.nnnRESULTSnAnticipatory prescription of medication was present in 65.4% of cases, 45.5% of the cases was prescribed morphine, 15.5% benzodiazepines, and 13.8% scopolamine hydrobromide. A deprescription of potentially inappropriate medication was noted in 67.9% of cases. The likelihood of anticipatory prescription was significantly higher in cases where death was expected (odds ratio [OR] 19; 95% CI 9-40; Pxa0<xa00.0001) and significantly lower where dementia was present (OR 0.35; 95% CI 0.16-0.74; Pxa0<xa00.006). The likelihood of deprescription was higher in cases where death was expected (OR 20; 95% CI 10-43; Pxa0<xa00.0001) and in cases of patients dying from an oncological disease compared with those dying from frailty or dementia (OR 7.0; 95% CI 1.1-45.6, Pxa0=xa00.042).nnnCONCLUSIONnAnticipatory prescription of medication and deprescription of medication at the end of life in acute geriatric wards could be further optimized. A well-developed intervention to guide health care staff in patient-centered pharmacological management in the last days of life seems to be needed.

Improving comfort around dying in elderly people: a cluster randomised controlled trial

BACKGROUNDnOver 50% of elderly people die in acute hospital settings, where the quality of end-of-life care is often suboptimum. We aimed to assess the effectiveness of the Care Programme for the Last Days of Life (CAREFuL) at improving comfort and quality of care in the dying phase in elderly people.nnnMETHODSnWe did a cluster randomised controlled trial in acute geriatric wards in ten hospitals in Flemish Region, Belgium, between Oct 1, 2012, and March 31, 2015. Hospitals were randomly assigned to implementation of CAREFuL (CAREFuL group) or to standard care (control group) using a random number generator. Patients and families were masked to interventaion allocation; hospital staff were unmasked. CAREFuL comprised a care guide for the last days of life, training, supportive documentation, and an implementation guide. Primary outcomes were comfort around dying, measured with the End-of-Life in Dementia-Comfort Assessment in Dying (CAD-EOLD), and symptom management, measured with the End-of-Life in Dementia-Symptom Management (SM-EOLD), by nurses and family carers. Analyses were by intention to treat. This trial is registered with ClinicalTrials.gov, number NCT01890239.nnnFINDINGSn451 (11%) of 4241 beds in ten hospitals were included in the analyses. Five hospitals were randomly assigned to standard health care practice and five to the CAREFuL programme; 118 patients in the control group and 164 in the CAREFuL group were eligible for assessment. Assessments were done for 132 (80%) of 164 patients in the CAREFuL group and 109 (92%) of 118 in the control group by nurses, and 48 (29%) in the CAREFuL group and 23 (19%) in the control group by family carers. Implementation of CAREFuL compared with control significantly improved nurse-assessed comfort (CAD-EOLD baseline-adjusted mean difference 4·30, 95% CI 2·07-6·53; p<0·0001). No significant differences were noted for the CAD-EOLD assessed by family carers (baseline-adjusted mean difference -0·62, 95% CI -6·07 to 4·82; p=0·82) or the SM-EOLD assessed by nurses (-0·41, -1·86 to 1·05; p=0·58) or by family carers (-0·59, -3·75 to 2·57; p=0·71).nnnINTERPRETATIONnAlthough a continuous monitoring of the programme is warranted, these results suggest that implementation of CAREFuL might improve care during the last days of life for patients in acute geriatric hospital wards.nnnFUNDINGnThe Flemish Government Agency for Innovation by Science and Technology and the Belgian Cancer Society Kom Op Tegen Kanker.

Factors associated with the goal of treatment in the last week of life in old compared to very old patients: a population-based death certificate survey

BackgroundLittle is known about the type of care older people of different ages receive at the end of life. The goal of treatment is an important parameter of the quality of end-of-life care. This study aims to provide an evaluation of the main goal of treatment in the last week of life of people aged 86 and older compared with those between 75 and 85 and to examine how treatment goals are associated with age.MethodsPopulation- based cross sectional survey in Flanders, Belgium. A stratified random sample of death certificates was drawn of people who died between 1 June and 30 November 2007. The effective study sample included 3,623 deaths (response rate: 58.4%). Non-sudden deaths of patients aged 75xa0years and older were selected (Nu2009=u20091681). Main outcome was the main goal of treatment in the last week of life (palliative care or life-prolonging/curative treatment).ResultsIn patients older than 75, the main goal of treatment in the last week was in the majority of cases palliative care (77.9%). Patients between 75 and 85 more often received life-prolonging/curative treatment than older patients (26.6% vs. 15.8%). Most patient and health care characteristics are similarly related to the main goal of treatment in both age groups. The patient’s age was independently related to having comfort care as the main goal of treatment. The main goal of treatment was also independently associated with the patient’s sex, cause and place of death and the time already in treatment.ConclusionAge is independently related to the main goal of treatment in the last week of life with people over 85 being more likely to receive palliative care and less likely to receive curative/life-prolonging treatment compared with those aged 75–85. This difference could be due to the patient’s wishes but could also be the result of the attitudes of care givers towards the treatment of older people.

Advance care planning for nursing home residents with dementia: policy vs. practice

AIMSnThe aims of this study were: to evaluate the advance care planning policy for people with dementia in nursing homes; to gain insight in the involvement of residents with dementia and their families in advance care planning, and in the relationship between the policy and the actual practice of advance care planning.nnnBACKGROUNDnThrough advance care planning, nursing home residents with dementia are involved in care decisions, anticipating their reduced decision-making capacity. However, advance care planning is rarely realized for this group. Prevalence and outcomes have been researched, but hardly any research has focused on the involvement of residents/families in advance care planning.nnnDESIGNnObservational cross-sectional study in 20 nursing homes.nnnMETHODSnThe ACP audit assessed the views of the nursing homes staff on the advance care planning policy. In addition, individual conversations were analysed with ACP criteria (realization of advance care planning) and the OPTION instrument (involvement of residents/families).nnnDATA COLLECTIONnJune 2013-September 2013.nnnRESULTSnNursing homes generally met three quarters of the pre-defined criteria for advance care planning policy. In almost half of the conversations, advance care planning was explained and discussed substantively. Generally, healthcare professionals only managed to involve residents/families on a baseline skill level. There were no statistically significant correlations between policy and practice.nnnCONCLUSIONnThe evaluations of the policy were promising, but the actual practice needs improvement. Future assessment of both policy and practice is recommended. Further research should focus on communication interventions for implementing advance care planning in the daily practice.

Improving end-of-life care in acute geriatric hospital wards using the Care Programme for the Last Days of Life: study protocol for a phase 3 cluster randomized controlled trial

BackgroundThe Care Programme for the Last Days of Life has been developed to improve the quality of end-of-life care in acute geriatric hospital wards. The programme is based on existing end-of-life care programmes but modeled to the acute geriatric care setting. There is a lack of evidence of the effectiveness of end-of-life care programmes and the effects that may be achieved in patients dying in an acute geriatric hospital setting are unknown. The aim of this paper is to describe the research protocol of a cluster randomized controlled trial to evaluate the effects of the Care Programme for the Last Days of Life.Methods and designA cluster randomized controlled trial will be conducted. Ten hospitals with one or more acute geriatric wards will conduct a one-year baseline assessment during which care will be provided as usual. For each patient dying in the ward, a questionnaire will be filled in by a nurse, a physician and a family carer. At the end of the baseline assessment hospitals will be randomized to receive intervention (implementation of the Care Programme) or no intervention. Subsequently, the Care Programme will be implemented in the intervention hospitals over a six-month period. A one-year post-intervention assessment will be performed immediately after the baseline assessment in the control hospitals and after the implementation period in the intervention hospitals. Primary outcomes are symptom frequency and symptom burden of patients in the last 48xa0hours of life.DiscussionThis will be the first cluster randomized controlled trial to evaluate the effect of the Care Programme for the Last Days of Life for the acute geriatric hospital setting. The results will enable us to evaluate whether implementation of the Care Programme has positive effects on end-of-life care during the last days of life in this patient population and which components of the Care Programme contribute to improving the quality of end-of-life care.Trial registrationClinicalTrials.gov Identifier: NCT01890239. Registered June 24th, 2013.

Advance care planning for nursing home residents with dementia: Influence of ‘we DECide’ on policy and practice

OBJECTIVESn(1) To pilot we DECide in terms of influence on advance care planning policy and practice in nursing home dementia care units. (2) To investigate barriers and facilitators for implementing we DECide.nnnMETHODSnThis was a pre-test-post-test study in 18 nursing homes. Measurements included: compliance with best practice of advance care planning policy (ACP-audit); advance care planning practice (ACP criteria: degree to which advance care planning was discussed, and OPTION scale: degree of involvement of residents and families in conversations).nnnRESULTSnAdvance care planning policy was significantly more compliant with best practice after we DECide; policy in the control group was not. Advance care planning was not discussed more frequently, nor were residents and families involved to a higher degree in conversations after we DECide. Barriers to realizing advance care planning included staffs limited responsibilities; facilitators included support by management staff, and involvement of the whole organization.nnnCONCLUSIONnWe DECide had a positive influence on advance care planning policy. Daily practice, however, did not change. Future studies should pay more attention to long-term implementation strategies.nnnPRACTICE IMPLICATIONSnLong-term implementation of advance care planning requires involvement of the whole organization and a continuing support system for health care professionals.

Applying Quality Indicators For Administrative Databases To Evaluate End-Of-Life Care For Cancer Patients In Belgium

End-of-life cancer care has been criticized as frequently inappropriate and aggressive. Providing appropriate care to people with cancer is a public health priority. Quality indicators are considered a valid way to evaluate the appropriateness of end-of-life cancer care within a health care system. We conducted a population-level retrospective observational study of all cancer decedents in Belgium in 2012 to assess end-of-life care and risk factors for exposure to care. We linked eight full-population databases on health care use, cancer diagnoses, and demographic and socioeconomic variables. We used analysis of variance to examine factors associated with exposure to appropriate or inappropriate end-of-life cancer care. Of the 26,464 people in Belgium who died from cancer in 2012, 47xa0percent received specialist palliative care, and 30xa0percent died at home. In the last thirty days of life, 17xa0percent received chemotherapy, and 66xa0percent received diagnostic testing. For 17xa0percent, palliative care was initiated only in the last fourteen days of life. Our results suggest a need to focus policy on reducing aggressive and inappropriate care at the end of life and an opportunity to increase the proportion of people who receive specialist palliative care and die at home.

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

BackgroundSeveral 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.MethodsWe 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.DiscussionThe 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 registrationThe study is registered at www.isrctn.com – ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) Registration date: July 30, 2015.