Personal dignity in the terminally ill from the perspective of caregivers : a survey among trained volunteers and physicians

Background: Although dignity is increasingly considered a goal of palliative care, little research has evaluated the understanding of dignity at the end of life from a caregiver's perspective. Objective: The study objective was to investigate and compare the views of trained volunteers and SCEN physicians on maintaining dignity for patients reaching the end of life. Design: The study is a survey questionnaire study. Subjects: Subjects were two groups of caregivers involved in care for dying patients: trained volunteers (n=236) and end-of-life consultants (SCEN physicians; n=427). Measurements: Measurement was done via the Dutch version of the 22-item Patient Dignity Inventory on symptoms and experiences that have been shown to influence the sense of dignity in terminally ill patients. Respondents were asked to rate on a five-point scale the extent to which they considered the items as influential on dignity in terminally ill patients, and as problematic in practice in maintaining dignity for patients in the last phase of life. Results: Overall, volunteers indicated items more frequently as influential to dignity and as problematic in maintaining dignity at the end of life, compared to SCEN physicians. Volunteers gave significantly higher ratings than SCEN physicians to most of the social items, and to half of the psychological and existential items. Conclusions: It seems that SCEN physicians consider the physical aspects of suffering to be most influential and problematic in practice in preserving dignity, while volunteers think psychosocial aspects are most important in preserving dignity at the end of life. These findings suggest that the role and responsibilities of caregivers involved in care for terminally ill patients affect the factors that they think influence dignity

A qualitative exploration of the collaborative working between palliative care and geriatric medicine : Barriers and facilitators from a European perspective

Background: With an increasing number of people dying in old age, collaboration between palliative care and geriatric medicine is increasingly being advocated in order to promote better health and health care for the increasing number of older people. The aim of this study is to identify barriers and facilitators and good practice examples of collaboration and integration between palliative care and geriatric medicine from a European perspective. Methods: Four semi-structured group interviews were undertaken with 32 participants from 18 countries worldwide. Participants were both clinicians (geriatricians, GPs, palliative care specialists) and academic researchers. The interviews were transcribed and independent analyses performed by two researchers who then reached consensus. Results: Limited knowledge and understanding of what the other discipline offers, a lack of common practice and a lack of communication between disciplines and settings were considered as barriers for collaboration between palliative care and geriatric medicine. Multidisciplinary team working, integration, strong leadership and recognition of both disciplines as specialties were considered as facilitators of collaborative working. Whilst there are instances of close clinical working between disciplines, examples of strategic collaboration in education and policy were more limited. Conclusions: Improving knowledge about its principles and acquainting basic palliative care skills appears mandatory for geriatricians and other health care professionals. In addition, establishing more academic chairs is seen as a priority in order to develop more education and development at the intersection of palliative care and geriatric medicine

Analysis of the construct of dignity and content validity of the patient dignity inventory

<p>Abstract</p> <p>Background</p> <p>Maintaining dignity, the quality of being worthy of esteem or respect, is considered as a goal of palliative care. The aim of this study was to analyse the construct of personal dignity and to assess the content validity of the Patient Dignity Inventory (PDI) in people with an advance directive in the Netherlands.</p> <p>Methods</p> <p>Data were collected within the framework of an advance directives cohort study. This cohort study is aiming to get a better insight into how decisions are made at the end of life with regard to advance directives in the Netherlands. One half of the cohort (n = 2404) received an open-ended question concerning factors relevant to dignity. Content labels were assigned to issues mentioned in the responses to the open-ended question. The other half of the cohort (n = 2537) received a written questionnaire including the PDI. The relevance and comprehensiveness of the PDI items were assessed with the COSMIN checklist ('COnsensus-based Standards for the selection of health status Measurement INstruments').</p> <p>Results</p> <p>The majority of the PDI items were found to be relevant for the construct to be measured, the study population, and the purpose of the study but the items were not completely comprehensive. The responses to the open-ended question indicated that communication and care-related aspects were also important for dignity.</p> <p>Conclusions</p> <p>This study demonstrated that the PDI items were relevant for people with an advance directive in the Netherlands. The comprehensiveness of the items can be improved by including items concerning communication and care.</p

A randomised controlled pilot and feasibility study of music therapy for improving the quality of life of hospice inpatients.

BACKGROUND: Evidence about the effectiveness of music therapy for improving the quality of life of palliative care patients is positive but weak in terms of risk of bias. METHODS: This study aimed to determine the feasibility of a randomised controlled trial to evaluate the effectiveness of music therapy for improving the quality of life of hospice inpatients, as measured by the McGill Quality of Life questionnaire. Objectives included recruitment of 52 participants over 12 months and provision of data to support the calculation of the required sample size for a definitive randomised trial, taking into account the retention rates of recruited participants; and evaluation of the viability of the intervention and the acceptability of the assessment tool. The design was a single-centre, researcher-blinded randomised pilot and feasibility study involving two parallel groups. Participants were recruited from one inpatient hospice unit in Northern Ireland. Eligibility criteria were an Eastern Cooperative Oncology Group performance status of two or lower and an Abbreviated Mental Test score of seven or more. Consenting patients were randomly allocated to the intervention or control group using a 1:1 allocation ratio. The intervention group received up to six individual music therapy sessions over 3 weeks in addition to usual care. The control group received usual care only. RESULTS: Fifty one participants were recruited over 12 months. Twenty five were allocated to the intervention group and 26 to the control group. Seventy one percent of participants were lost to follow up by week 3, the proposed primary endpoint. The primary endpoint was moved from week 3, when 71% were lost to follow up to week 1, when 33% were lost. The McGill Quality of Life questionnaire was generally acceptable to participants. In order to detect a small to moderate effect size of 0.3, a fully powered study would require the recruitment of 698 participants. CONCLUSIONS: A Phase III randomised controlled trial to evaluate the effectiveness of music therapy in improving the quality of life of hospice inpatients is feasible. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02791048 . Registered 6 June 2016

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 55years 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 3-6months (coefficient=14.66; 95% confidence interval=0.97-28.35) or more than 6months (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

Awareness of dementia by family carers of nursing home residents dying with dementia: a post-death study

Background: High-quality palliative care for people with dementia should be patient-centered, family-focused, and include well-informed and shared decision-making, as affirmed in a recent white paper on dementia from the European Association for Palliative Care. Aim: To describe how often family carers of nursing home residents who died with dementia are aware that their relative has dementia, and study resident, family carer, and care characteristics associated with awareness. Design: Post-death study using random cluster sampling. Setting/participants: Structured questionnaires were completed by family carers, nursing staff, and general practitioners of deceased nursing home residents with dementia in Flanders, Belgium (2010). Results: Of 190 residents who died with dementia, 53.2% of family carers responded. In 28% of cases, family carers indicated they were unaware their relative had dementia. Awareness by family carers was related to more advanced stages of dementia 1 month before death (odds ratio = 5.4), with 48% of family carers being unaware when dementia was mild and 20% unaware when dementia was advanced. The longer the onset of dementia after admission to a nursing home, the less likely family carers were aware (odds ratio = 0.94). Conclusion: Family carers are often unaware that their relative has dementia, that is, in one-fourth of cases of dementia and one-fifth of advanced dementia, posing considerable challenges for optimal care provision and end-of-life decision-making. Considering that family carers of residents who develop dementia later after admission to a nursing home are less likely to be aware, there is room for improving communication strategies toward family carers of nursing home residents