Physician adherence to clinical guidelines in euthanasia and assisted suicide in the Netherlands: a qualitative study.

BACKGROUND: Euthanasia and assisted suicide laws in the Netherlands require physicians meet clinical guidelines when performing the practice to ensure death is peaceful and painless. Despite oversight by the regional review committees over each case, little research exists into the frequency of guideline deviation and the reasons for nonadherence. METHODS: Cases reported and reviewed between 2012 and 2017 that did not meet due medical care were analysed for thematic content. Semistructured interviews were conducted with 11 Dutch physicians on their experience with the clinical and pharmacological elements of euthanasia and assisted suicide, their interaction and comportment with the recommended guidelines, and reasons why guideline deviation might occur. Reported case reviews and interviews were used to obtain themes and subthemes to understand how and why deviations from clinical guidelines happened. RESULTS: Violations of due medical care were found in 42 (0.07%) of reported cases. The regional review committees found physicians in violation of due medical care mostly for inadequate confirmation of coma-induction and deviations from recommended drug dosages. Physicians reported that they rarely deviated from the guidelines, with the most common reasons being concern for the patient's family, concern over the drug efficacy, mistrust in the provided guidelines, or relying on the poor advice of pharmacists or hospital administrators. CONCLUSIONS: Deviations from the guidelines and violations of due medical care are rare, but should nonetheless be monitored and prevented. A few areas for improvement include skills training for physicians, consistency between review committee rulings, and further clarity on dosage recommendations.

The Feasibility and Effectiveness of Web-Based Advance Care Planning Programs: Scoping Review.

BACKGROUND: Advance care planning (ACP) is a process with the overall aim to enhance care in concordance with patients' preferences. Key elements of ACP are to enable persons to define goals and preferences for future medical treatment and care, to discuss these with family and health care professionals, and to document and review these if appropriate. ACP is usually conducted through personal conversations between a health care professional, a patient, and-if appropriate-family members. Although Web-based ACP programs have the potential to support patients in ACP, their effectiveness is unknown. OBJECTIVE: This study aimed to assess the feasibility and effectiveness of Web-based, interactive, and person-centered ACP programs. METHODS: We systematically searched for quantitative and qualitative studies evaluating Web-based, interactive, and person-centered ACP programs in seven databases including EMBASE, Web of Science, Cochrane Central and Google Scholar. Data on the characteristics of the ACP programs' content (using a predefined list of 10 key elements of ACP), feasibility, and effectiveness were extracted using a predesigned form. RESULTS: Of 3434 titles and abstracts, 27 studies met the inclusion criteria, evaluating 11 Web-based ACP programs-10 were developed in the United States and one in Ireland. Studied populations ranged from healthy adults to patients with serious conditions. Programs typically contained the exploration of goals and values (8 programs), exploration of preferences for treatment and care (11 programs), guidance for communication about these preferences with health care professionals or relatives (10 programs), and the possibility to generate a document in which preferences can be recorded (8 programs). Reportedly, participants were satisfied with the ACP programs (11/11 studies), considering them as easy to use (8/8 studies) and not burdensome (7/8 studies). Designs of 13 studies allowed evaluating the effectiveness of five programs. They showed that ACP programs significantly increased ACP knowledge (8/8 studies), improved communication between patients and their relatives or health care professionals (6/6 studies), increased ACP documentation (6/6 studies), and improved concordance between care as preferred by the patients and the decisions of clinicians and health care representatives (2/3 studies). CONCLUSIONS: Web-based, interactive, and person-centered ACP programs were mainly developed and evaluated in the United States. They contained the key elements of ACP, such as discussing and documenting goals and preferences for future care. As participants considered programs as easy to use and not burdensome, they appeared to be feasible. Among the 13 studies that measured the effectiveness of programs, improvement in ACP knowledge, communication, and documentation was reported. The concordance between preferred and received care is yet understudied. Studies with high-quality study designs in different health care settings are warranted to further establish the feasibility and effectiveness of Web-based ACP programs.

Experiences with and outcomes of Advance Care Planning in bereaved relatives of frail older patients: a mixed methods study.

BACKGROUND: Advance Care Planning (ACP) may prepare relatives of frail older patients for future decision-making. OBJECTIVE: to investigate (1) how bereaved relatives of frail older patients experience ACP conversations and (2) whether ACP has an effect on relatives' preparation for decision-making and on their levels of anxiety and depression. DESIGN: cluster randomised controlled trial. SETTING: residential care homes in the Netherlands and community setting. SUBJECTS: bereaved relatives of care home residents and community-dwelling frail older patients. METHODS: we randomised 16 residential care homes to either the intervention group, where patient-participants were offered facilitated ACP, or the control group (n = 201), where they received 'care as usual'. If patient-participants died, we approached relatives for an interview. We asked relatives who had attended ACP conversations for their experience with ACP (open-ended questions). Furthermore, we compared relatives' preparation levels for decision-making and levels of anxiety and depression (HADS) between groups. This trial was registered (NTR4454). RESULTS: we conducted interviews with 39/51 (76%) bereaved relatives (intervention group: n = 20, control group: n = 19). Relatives appreciated the ACP conversations. A few considered ACP redundant since they were already aware of the patients' preferences. Nine of 10 relatives in the intervention group felt adequately prepared for decision-making as compared to 5 of 11 relatives in the control group (P = 0.03). Relatives' levels of anxiety and depression did not differ significantly between groups. CONCLUSIONS: in our study, bereaved relatives of frail older patients appreciated ACP. ACP positively affected preparedness for decision-making. It did not significantly affect levels of anxiety or depression.

Low patient activation levels in frail older adults: a cross-sectional study.

BACKGROUND: Frail older adults are increasingly expected to self-manage their health and healthcare. We assessed the extent to which this group is able to take up this responsibility by measuring their level of activation as patients (i.e. their knowledge, skills and confidence to self-manage their health and healthcare). Further, we studied which characteristics of older adults were associated with patient activation. METHODS: In this cross-sectional study 200 frail, competent adults (median age 87 years) participated. Participants were community-dwelling adults who received home care and residents of care homes. Data were collected via personal interviews in participants' homes. The main outcome measure was patient activation assessed by the short version of the Patient Activation Measure (PAM-13; range: 0-100). The PAM distinguishes four levels of increasing activation with level 1 indicating poor patient activation and level 4 adequate patient activation. Other studied variables were: multimorbidity, type of residency, frailty (Tilburg Frailty Index), mental competence (Mini Mental State Examination), health-related quality of life (SF-12), satisfaction with healthcare (subscale Patient Satisfaction Questionnaire) and personal characteristics (age, gender, marital status, educational level). Regression analyses were performed to investigate which variables were associated with patient activation. RESULTS: Participants had a median PAM score of 51. Thirty-nine percent had level 1 activation, 31% level 2, 26% level 3 and 5% level 4. Fifty-nine percent of community dwelling adults had level 1 or 2 activation versus 81% of care home residents (p = 0.007). Mental competence (Effect: 0.52, CI: 0.03-1.01, p = 0.04) and health-related quality of life (Effect: 0.15, CI: 0.01-0.30, p = 0.04 for physical health; Effect: 0.20, CI: 0.07-0.34, p = 0.003 for mental health) were positively associated with patient activation. Frailty (Effect: -1.06, CI: -1.75 - -0.36, p = 0.003) was negatively associated with patient activation. CONCLUSIONS: The majority of this frail and very old study population, especially those with a lower health-related quality of life, may be unable to self-manage their health and healthcare to the level expected from them. The increasing population of frail older adults may need help in managing their health and healthcare.

Admissions to inpatient care facilities in the last year of life of community-dwelling older people in Europe.

Background: In the last year of life, many older people rather avoid admissions to inpatient care facilities. We describe and compare such admissions in the last year of life of 5092 community-dwelling older people in 15 European countries (+Israel). Methods: Proxy-respondents of the older people, who participated in the longitudinal SHARE study, reported on admissions to inpatient care facilities (hospital, nursing home or hospice) during the last year of their life. Multivariable regression analyses assessed associations between hospitalizations and personal/contextual characteristics. Results: The proportion of people who had been admitted at least once to an inpatient care facility in the last year of life ranged from 54% (France) to 76% (Austria, Israel, Slovenia). Admissions mostly concerned hospitalizations. Multivariable analyses showed that especially Austrians, Israelis and Poles had higher chances of being hospitalized. Further, hospitalizations were more likely for those being ill for 6 months or more (OR:1.67, CI:1.39-2.01), and less likely for persons aged 80+ (OR:0.54, CI:0.39-0.74; compared with 48-65 years), females (OR:0.74, CI:0.63-0.89) and those dying of cardiovascular diseases (OR:0.66, CI:0.51-0.86; compared with those dying of cancer). Conclusions: Although healthcare policies increasingly stress the importance that people reside at home as long as possible, admissions to inpatient care facilities in the last year of life are relatively common across all countries. Furthermore, we found a striking variation concerning the proportion of admissions across countries which cannot only be explained by patient needs. It suggests that such admissions are at least partly driven by system-level or cultural factors.

A cluster randomized controlled trial on the effects and costs of advance care planning in elderly care: study protocol.

BACKGROUND: Currently, health care and medical decision-making at the end of life for older people are often insufficiently patient-centred. In this trial we study the effects of Advance Care Planning (ACP), a formalised process of timely communication about care preferences at the end of life, for frail older people. METHODS/DESIGN: We will conduct a cluster randomised controlled trial among older people residing in care homes or receiving home care in the Netherlands. The intervention group will receive the ACP program Respecting Choices® in addition to usual care. The control group will receive usual care only. Participants in both groups will fill out questionnaires at baseline and after 12 months. We hypothesize that ACP will lead to better patient activation in medical decision making and quality of life, while reducing the number of medical interventions and thus health care costs. Multivariate analysis will be used to compare differences between the intervention group and the control group at baseline and to compare differences in changes after 12 months following the inclusion. DISCUSSION: Our study can contribute to more understanding of the effects of ACP on patient activation and quality of life in frail older people. Further, we will gain insight in the costs and cost-effectiveness of ACP. This study will facilitate ACP policy for older people in the Netherlands. TRIAL REGISTRATION: Nederlands Trial Register: NTR4454.

Classification of end-of-life decisions by Dutch physicians: findings from a cross-sectional survey.

BACKGROUND: At the end of patients' lives, physicians sometimes provide medication with the explicit intention to hasten death. Physicians' assessment of such acts varies. We studied which characteristics are associated with physicians' classification of these acts. METHODS: This study concerns a secondary analysis of a nationwide study on the practice of medical decision-making at the end of life. In 2015, attending physicians of a sample of deceased people (n=9,351) received a questionnaire about end-of-life care and decision-making. The response rate was 78%. We studied 851 cases in which physicians reported that the patient had died as a result of medication they had provided with the explicit intention to hasten death. Chi-square tests and logistic regression analyses were performed. RESULTS: If medication had been provided with the explicit intention to hasten death at the explicit request of the patient, physicians considered "euthanasia", "assisted suicide" or "ending of life" the most appropriate term for their course of action in 82% of all cases, while 17% of physicians chose the term "palliative or terminal sedation". Physicians' classification of their act as "euthanasia", "assisted suicide" or "ending of life" was less likely when patients had a short (1-7 days) or very short (max. 24 hours) life expectancy. Furthermore, such classification was less likely when their act had involved the use of other medication than muscle relaxants. The limited number of cases in which patients had been provided with medication without an explicit patient request were never classified as "euthanasia", "assisted suicide" or "ending of life". CONCLUSIONS: Physicians rarely classify the provision of medication with the explicit intention of hastening death as "euthanasia", "assisted suicide" or "ending of life" when patients are in the dying phase and when they provide other medication than muscle relaxants. In these cases, acts are mostly classified as "palliative or terminal sedation". This suggests that the legal distinction between euthanasia and palliative care may not always be clear in clinical practice.

Advance Care Planning in Frail Older Adults: A Cluster Randomized Controlled Trial.

OBJECTIVES: To determine the effectiveness of advance care planning (ACP) in frail older adults. DESIGN: Cluster randomized controlled trial. SETTING: Residential care homes in the Netherlands (N=16). PARTICIPANTS: Care home residents and community-dwelling adults receiving home care (N=201; n=101 intervention; n=100 control). Participants were 75 years and older, frail, and capable of consenting to participation. INTERVENTION: Adjusted Respecting Choices ACP program. MEASUREMENTS: The primary outcome was change in patient activation (Patient Activation Measure, PAM-13) between baseline and 12-month follow-up. Secondary outcomes included change in quality of life (SF-12), advance directive (AD) completion, and surrogate decision-maker appointment. Use of medical care in the 12 months after inclusion was also assessed. Multilevel analyses were performed, controlling for clustering effects and differences in demographics. RESULTS: Seventy-seven intervention participants and 83 controls completed the follow-up assessment. There were no statistically significant differences between the intervention (-0.26±11.2) and control group (-1.43±10.6) in change scores of the PAM (p=.43) or the SF-12. Of intervention group participants, 93% completed an AD, and 94% appointed a decision-maker. Of control participants, 34% completed an AD, and 67% appointed a decision-maker (p<.001). No differences in the use of medical care were found. CONCLUSIONS: ACP did not increase levels of patient activation or quality of life but did increase completion of ADs and appointment of surrogate decision-makers. It did not affect use of medical care.

Assessment of verbal and visuospatial working memory in mild cognitive impairment and Alzheimer's dementia.

In addition to episodic memory impairment, working memory may also be compromised in mild cognitive impairment (MCI) or Alzheimer's dementia (AD), but standard verbal and visuospatial span tasks do not always detect impairments. OBJECTIVE: To examine whether more complex verbal and visuospatial working memory tasks result in more reliable impairment detection. METHODS: The Digit Span (forward, backward and sequencing), Spatial Span (forward and backward) and Spatial Addition test from the Wechsler batteries were administered to MCI and AD patients and performance compared to healthy older adult controls. RESULTS: Results showed that both the MCI and AD patients had impaired performance on the Spatial Addition test. Both groups also had impaired performance on all three Digit Span conditions, but no differences were found between forward and backward conditions in any of the groups. The sequencing condition differed from the backward condition only in the AD group. Spatial Span performance was impaired in AD group patients but not in MCI patients. CONCLUSION: Working memory deficits are evident in MCI and AD even on standard neuropsychological tests. However, available tests may not detect subtle impairments, especially in MCI. Novel paradigms tapping the episodic buffer component of working memory may be useful in the assessment of working memory deficits, but such instruments are not yet available for clinical assessment.

Além do comprometimento da memória episódica, a memória de trabalho (ou memória operacional) também pode ser afetada no comprometimento cognitivo leve (CCL) ou na demência de Alzheimer (DA), mas as tarefas padrão de extensão verbal e de extensão visuoespacial nem sempre detectam deficiências. OBJETIVO: Investigar se tarefas mais complexas de memória de trabalho verbais e visuoespaciais são mais confiáveis para detectar comprometimento. MÉTODOS: Os testes de extensão de dígitos (em ordem direta, inversa e sequencial), extensão espacial (ordem direta e inversa), e o teste de adição espacial das baterias Wechsler foram administradas a pacientes com CCL e DA e o desempenho foi comparado aos de controles idosos saudáveis. RESULTADOS: Os resultados mostraram que tanto pacientes com CCL ou DA tiveram prejuízo no desempenho no teste adição espacial. Tanto os pacientes com CCL como os de DA também tiveram desempenho prejudicado em todos os três testes de extensão de dígitos, mas não foram encontradas diferenças entre a ordem direta e inversa em qualquer dos grupos. A condição sequencial diferia da condição inversa apenas no grupo DA. O desempenho no teste de extensão espacial foi comprometido em pacientes do grupo DA, mas não em pacientes com CCL. CONCLUSÃO: Os déficits de memória de trabalho são evidentes no CCL e DA, mesmo em testes neuropsicológicos padrão. No entanto, os testes disponíveis podem não detectar deficiências sutis, especialmente no CCL. Novos paradigmas que utilizem o componente retentor episódico da memória de trabalho pode ser útil na avaliação dos déficits de memória de trabalho, mas esses instrumentos ainda não estão disponíveis para avaliação clínica.