Gwenda Albers

Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.

BACKGROUND Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally. METHODS A telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying. RESULTS Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal). CONCLUSIONS At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

Evaluation of quality-of-life measures for use in palliative care: A systematic review

Purpose: In this literature review we evaluated the feasibility and clinimetric quality of quality-of-life (QoL) measurement instruments suitable for use in palliative care. Methods: We conducted a systematic literature review to identify instruments measuring (at least one domain of) QoL. We selected articles that present data on patients receiving palliative care and at least one measurement property. A checklist was used to describe the characteristics of the instruments, and a widely accepted rating list was used to evaluate the clinimetric aspects. Results: 29 instruments were identified and evaluated, most of which were targeted at palliative patients in general. None of the instruments demonstrated satisfactory results for all measurement properties. Fourteen instruments received positive ratings for construct validity. Thirteen instruments were tested for reliability, but only two were tested adequately and had positive results (ICC>0.70). Responsiveness was not tested adequately for any of the instruments. Very few of the studies provided information on the interpretation of the scores. Overall, the MQOL, followed by the QUAL-E and the QODD, received the best ratings for their measurement properties. Conclusions: Many measurement instruments were identified, but most had not yet been adequately evaluated. The evaluation of existing instruments with good content validity should have priority over the development of new instruments.

Content and Spiritual Items of Quality-of-Life Instruments Appropriate for Use in Palliative Care: A Review

Despite the importance of palliative care and quality of life (QoL) as an outcome measure, little research evaluated the QoL instruments that are used in end-of-life situations. We evaluated the content of and domains measured by QoL instruments that are suitable for use in palliative care and how the domain of spirituality was operationalized in these instruments. We conducted two literature reviews. One identified the domains that are most important for the QoL of incurably ill patients and resulted in a framework of QoL domains. The other review identified 29 instruments measuring (at least one domain of) QoL that are appropriate for use in palliative care. Most of the instruments covered only one or two QoL domains, and none of the instruments covered all QoL domains included in the framework. Among the 29 instruments, 15 included items on spirituality. We also categorized the spirituality items contained in the instruments into the spirituality aspects in the framework. Most spirituality items concerned the meaning or purpose of life. This study provides information about the domains included in QoL instruments that are suitable for use in palliative care and provides insights into the differences in content, which can be helpful when choosing an instrument for use in palliative care.

Does Health Status Affect Perceptions of Factors Influencing Dignity at the End of Life

CONTEXT More people are surviving into old age, and chronic diseases tend to become more common with age. Ill health and disability can lead to concerns about loss of personal dignity. OBJECTIVES To investigate whether health status affects the perceptions of factors influencing personal dignity at the end of life, and the relationship between those perceptions and sociodemographic characteristics. METHODS A subsample (n=2282) of a large advance directives cohort study was used. Three different health status groups (good, moderate, and poor) were defined based on the Euroqol-5D and a question on whether they had an illness. For each health status group, we calculated the percentage of respondents who indicated the extent to which the items of the Patient Dignity Inventory would influence their dignity as (very) large. Logistic regression analyses were used to investigate the associations between the perceptions of factors influencing personal dignity and sociodemographics. RESULTS The percentage of respondents who indicated the factors as having a (very) large influence on dignity at the end of life were not significantly different for the three health status groups, except for three physical items on symptoms, roles, and routines. Those items were significantly more influential on dignity for people with a poor health status. Gender, old age, having a partner, and having a belief or religion that is important to ones life were associated with an understanding of factors influential to dignity. CONCLUSION Health status seems only to affect the perceptions of physical factors maintaining dignity at the end of life. This might suggest that the understanding of dignity will not substantially change as health status changes and may support starting advance care planning early.

The burden of caring for people with dementia at the end of life in nursing homes: a postdeath study among nursing staff.

AIMS To investigate how often nursing staff perceive caring for nursing home residents with dementia at the end of life as an emotional and/or physical burden, and to identify associated factors. DESIGN Postdeath study conducted in 2010 in Flanders, Belgium. Nursing homes were selected through random clustersampling. METHODS All residents who died with dementia in a three-month period were identified, and a structured questionnaire was completed by the nurse mostly involved. Nursing staff were asked to indicate how they perceived burden of caregiving for this resident on 10-point scale. RESULTS Sixty-nine out of 120 nursing homes (response rate 58%) participated in the study. In 37% and 32% of cases, respectively, the nursing staff reported that they perceived themselves as experiencing a high emotional and physical burden. In cases where the resident had capacity for medical decision making during the last week of life and where the nurse had spoken with a relative about wishes for medical end-of-life treatments, they were more likely to report an emotional burden. A physical burden was more likely to be reported where the resident had decubitus ulcers or had developed pneumonia. CONCLUSION In one-third of cases, nursing staff experienced a high emotional and/or physical burden. While experiencing a physical burden seems to be related to the poorer clinical status of the resident, an emotional burden was more likely to be related to greater and closer contact with the resident or a relative and to the nurse being involved in the process of care and decision making in the last phase of life. IMPLICATIONS FOR PRACTICE This study highlights the need to support nursing home staff in providing compassionate end-of-life care for people with dementia and suggests that both the physical and emotional burdens in staff should be monitored regularly to achieve optimal working.

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 caregivers 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.

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.

Nursing staff and euthanasia in the Netherlands. A nation-wide survey on attitudes and involvement in decision making and the performance of euthanasia.

OBJECTIVES To give insight into Dutch nursing staffs attitudes and involvement regarding euthanasia. METHODS The sample was recruited from a nation-wide existent research panel of registered nurses and certified nursing assistants. Descriptive analyses and multivariate logistic regression analyses were performed. RESULTS 587 respondents (response of 65%) completed the questionnaire. The majority (83%) state that physicians have to discuss the decision about euthanasia with the nurses involved. Besides, 69% state that a physician should discuss a euthanasia request with nurses who have regular contact with a patient. Nursing staff who have religious or other beliefs that they consider important for their attitude towards end-of-life decisions, and staff working in a hospital or home care, are most likely to have this opinion. Being present during the euthanasia is quite unusual: only a small group (7%) report that this has ever been the case in their entire working life. Seven% (incorrectly) think they are allowed to administer the lethal drugs. CONCLUSION The majority want to be involved in decision-making processes about euthanasia. Not all are aware that they are not legally allowed to administer the lethal drugs. PRACTICE IMPLICATIONS Nursing staff should be informed of relevant existing legislation and professional guidelines.

Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe

Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. Methods: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. Conclusions: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.

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

BackgroundWith 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.MethodsFour 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.ResultsLimited 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.ConclusionsImproving 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.