Motivations, aims and communication around advance directives A mixed-methods study into the perspective of their owners and the influence of a current illness

AbstractObjectiveWhat are motivations of owners of an advance directive (AD) to draft an AD, what do they aim for with their AD and do they communicate about their AD?MethodsWritten questionnaires were sent to a cohort of people owning different types of ADs (n=5768). A purposive sample of people suffering from an illness was selected from the cohort for an in-depth interview (n=29).ResultsAbout half of our population had no direct motivation to draft their AD. Most mentioned motivation for the other half was an illness of a family member or friend. Many different and specific aims for drafting an AD were mentioned. An often mentioned more general aim in people with different ADs was to prevent unnecessary lengthening of life or treatment (14–16%). Most respondents communicated about having an AD with close-ones (63–88%) and with their GP (65–79%). In the interviews people gave vivid examples of experiences of what they hoped to prevent at the end of life. Some mentioned difficulties foreseeing the future and gave examples of response shift.ConclusionADs can give directions to caregivers about what people want at the end of life.Practice implicationsADs have to be discussed in detail by their owners and caregivers, since owners often have specific aims with their AD

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

Current wishes to die; characteristics of middle-aged and older Dutch adults who are ready to give up on life:a cross-sectional study

BACKGROUND: Literature shows that middle-aged and older adults sometimes experience a wish to die. Reasons for these wishes may be complex and involve multiple factors. One important question is to what extent people with a wish to die have medically classifiable conditions. AIM: (1) Estimate the prevalence of a current wish to die among middle-aged and older adults in The Netherlands; (2) explore which factors within domains of vulnerability (physical, cognitive, social and psychological) are associated with a current wish to die; (3) assess how many middle-aged and older adults with a current wish to die do not have a medically classifiable condition and/or an accumulation of age-related health problems. METHODS: Data of 2015/16 from the Longitudinal Aging Study Amsterdam were used for this cross-sectional study (1563 Dutch middle-aged and older adults aged between 57 and 99 years), obtained through structured medical interviews and self-reported questionnaires. Three experienced physicians assessed whether the participants with a current wish to die could be classified as having a medically classifiable condition and/or an accumulation of age-related health problems. RESULTS: N = 62 participants (4.0%) had a current wish to die. Having a current wish to die was associated with multiple characteristics across four domains of vulnerability, among which: self-perceived health, problems with memory, self-perceived quality of life and meaningfulness of life. Fifty-four participants with a current wish to die were assessed with having a medically classifiable condition, of which one was also assessed with having an accumulation of age-related health problems. Six people were assessed to have neither, and for two people it was unclear. CONCLUSION: A small minority of middle-aged and older adults in the Netherlands have a current wish to die. Most of them can be classified with a medical condition and one person with an accumulation of age-related health problems. Furthermore, the findings show that having a current wish to die is multi-faceted. There is still a need for more knowledge, such as insight in to what extent suffering stemming from the medical classifiable disease contributes to the development of the wish to die

Caregivers' understanding of dementia predicts patients' comfort at death: a prospective observational study

Background: Patients with dementia frequently do not receive adequate palliative care which may relate to poor understanding of the natural course of dementia. We hypothesized that understanding that dementia is a progressive and terminal disease is fundamental to a focus on comfort in dementia, and examined how family and professional caregivers' understanding of the nature of the disease was associated with patients' comfort during the dying process. Methods: We enrolled 372 nursing home patients from 28 facilities in The Netherlands in a prospective observational study (2007 to 2010). We studied both the families and the physicians (73) of 161 patients. Understanding referred to families' comprehension of complications, prognosis, having been counseled on these, and perception of dementia as "a disease you can die from" (5-point agreement scale) at baseline. Physicians reported on this perception, prognosis and having counseled on this. Staff-assessed comfort with the End-of-Life in Dementia - Comfort Assessment in Dying (EOLD-CAD) scale. Associations between understanding and comfort were assessed with generalized estimating equations, structural equation modeling, and mediator analyses. Results: A family's perception of dementia as "a disease you can die from" predicted higher patient comfort during the dying process (adjusted coefficient -0.8, 95% confidence interval (CI): -1.5; -0.06 point increment disagreement). Family and physician combined perceptions (-0.9, CI: -1.5; -0.2; 9-point scale) were also predictive, including in less advanced dementia. Forty-three percent of the families perceived dementia as a disease you can die from (agreed completely, partly); 94% of physicians did. The association between combined perception and higher comfort was mediated by the families' reporting of a good relationship with the patient and physicians' perception that good care was provided in the last week. Conclusions: Awareness of the terminal nature of dementia may improve patient comfort at the end of life. Educating families on the nature of dementia may be an important part of advance care planning

Are care staff equipped for end-of-life communication? : a cross-sectional study in long-term care facilities to identify determinants of self-efficacy

Background: End-of-life conversations are rarely initiated by care staff in long-term care facilities. A possible explanation is care staff's lack of self-efficacy in such conversations. Research into the determinants of self-efficacy for nurses and care assistants in end-of-life communication is scarce and self-efficacy might differ between care staff of mental health facilities, nursing homes, and care homes. This study aimed to explore differences between care staff in mental health facilities, nursing homes, and care homes with regard to knowledge about palliative care, time pressure, and self-efficacy in end-of-life communication, as well as aiming to identify determinants of high self-efficacy in end-of-life communication. Methods: Two cross-sectional Dutch studies, one in mental health facilities and one in nursing and care homes (PACE study). Nurses and care assistants were invited to complete a questionnaire in 2015. Multivariable logistic regression analyses were performed to identify determinants of high self-efficacy. Results: Five hundred forty one nurses and care assistants completed a survey; 137 worked in mental health facilities, 172 in nursing homes, and 232 in care homes. Care staff at mental health facilities were the most knowledgeable about the World Health Organization's definition of palliative care: 76% answered 4-5 out of 5 items correctly compared to 38% of nursing home staff and 40% of care home staff (p 36, female, with formal palliative care training, and knowledge of the palliative care definition. Conclusion: Mental healthcare staff knew more about palliative care and had higher self-efficacy in end-of-life communication compared to nursing and care home staff. Educating care staff about providing palliative care and training them in it might improve end-of-life communication in these facilities

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

Case management in primary palliative care is associated more strongly with organisational than with patient characteristics: results from a cross-sectional prospective study

Background: Case managers have been introduced in Dutch primary palliative care; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner and home care nurses. This study aims to describe support and investigate what characteristics of patients and the organizational setting are related to the number of contacts and to the number of times topics are discussed between the case manager and patients and/or informal carers. Methods: Prospective study following cancer patients (n = 662) receiving support from a palliative care case manager in Dutch primary care, using registration forms filled out by the case manager after contact with the patient and/or informal carer. In backward linear regression, the association was studied between patient or organizational characteristics and the number of contacts and the number of times conversation topics were discussed. Results: Organizational characteristics add more to explained variability in data than patient characteristics. Case managers provide support in a flexible manner with regard to the number, mode, persons present, and duration of contacts. Support covered all domains of palliative care, with most attention given to physical complaints, life expectancy and psychological aspects. Conclusions: Support offered by the case managers is prompted by characteristics of the organization for which they work. This is contradictory to the idea of patient centered care highly valued in palliative care

Burden for family carers at the end of life : a mixed-method study of the perspectives of family carers and GPs

Background: Since many patients spend most of the time at home at the end of life, this may affect the burden for family carers and constitute a risk factor for the patients' hospitalisation. This study aimed to explore family carers' burden in the final three months of the patient's life, from the perspective of both carers and general practitioners (GPs), and to assess whether family burden, as defined by the GP, is associated with hospitalisation. Methods: A cross-sectional nationwide survey among GPs and family carers was performed. Participants were 194 GPs and 74 family carers of patients who died non-suddenly. Additionally, in-depth interviews were conducted with 18 family carers. For the quantitative analyses descriptive statistics, weighted Kappa and multivariate logistic regression analysis was performed. For the qualitative part thematic analysis was conducted. Results: The proportion of family carers experiencing a fairly heavy or severe burden increased significantly from 32% (second and third months before death) to 66% (one week before death). Most carers (95%) felt an emotional burden and 29% felt a physical burden in the final week. Three-quarters of carers did not perceive their burden as a problem because caring often felt rewarding. No significant association was found between the characteristics of family caregivers or professional care and the degree of family caregiver burden. Also, there was no significant evidence that patients of family carers for whom the GP assessed a fairly heavy to severe burden, were more likely to be hospitalised. Conclusions: The different overall assessment of family carers' burden between GPs and family carers and the increasing emotional and physical burden of family carers towards the end constitute relevant information for GPs that will help them understand and anticipate carers' personal needs