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Context: Metastatic lung cancer is an incurable disease that results in a high burden of symptoms, a poor quality of life, and an expected prognosis of less than one year after diagnosis. Treatment shortly before death may result in potential burdensome and inappropriate hospital admissions and hospital deaths. Dying at home is, at a population level, considered a quality for good end-of-life care.Objectives: We examined what percentage of patients with metastatic lung cancer died inside the hospital and if hospital death, or other characteristics of the patient, oncologist or health care, were associated with treatment in the last month of life.Methods: This retrospective cohort study evaluated the medical records of 1322 patients with metastatic lung cancer who received care at one of 10 hospitals across The Netherlands and died between 1/6/2013 and 31/7/2015. Demographic and clinical characteristics were obtained from the medical records.Results: In total, 18% of the patients died during a hospital admission. This percentage was higher for patients who received chemotherapy (42%) or targeted therapy with tyrosine kinase inhibitors (25%) in the last month of life. Patients younger than 60 years of age, patients who received chemotherapy in the last month of life, and patients in whom tyrosine kinase inhibitors were started in the last month of life were more likely to die inside the hospital.Conclusion: In The Netherlands, fewer than one in five patients with metastatic lung cancer died in the hospital and in-hospital death was associated with the relatively late use of chemotherapy or targeted therapy. Careful selection of patients for disease-modifying therapy might enhance the opportunity for patients to die at their preferred place. [ABSTRACT FROM AUTHOR]

Abstract: 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 one''s 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. [Copyright &y& Elsevier]

Context: Advance care planning (ACP) becomes more relevant with deteriorating health or increasing age. People might be more inclined to engage in ACP as they feel that they are approaching end of life. The perception of approaching end of life could be quantified as subjective remaining life expectancy (SRLE).Objectives: First, to describe the prevalence of ACP with health care providers or written directives ("formal engagement in ACP") and ACP with loved-ones ("informal engagement in ACP") among older persons in the general population in The Netherlands. Second, to assess the association between SRLE and engagement in ACP.Methods: Cross-sectional study using data from the Longitudinal Aging Study Amsterdam (LASA) measurement wave of 2015-2016. Participants (n = 1585) were aged ≥ 57 years.Results: Median age was 69.4 years (IQR: 64.1-76.7), and median SRLE 25.9 years (17.7-36.0). Formal engagement in ACP was present in 32.6%, informal without formal engagement in 45.8%, and 21.6% was not engaged in ACP. For respondents with SRLE < 25 years, there was a nonstatistically significant association between SRLE and engagement in ACP (aOR: 0.97; 95% CI: 0.93-1.01; P= .088), and a statistically significant, small association with formal vs. informal engagement in ACP (aOR: 0.96; 0.93-0.99; P= .009). For respondents with SRLE ≥ 25 years there was no association between SRLE and engagement in ACP.Conclusion: The perception of approaching end of life is associated with higher prevalence of formal engagement in ACP, but only for those with SRLE < 25 years. For clinicians, asking patients after their SRLE might serve as a starting point to explore readiness for ACP. [ABSTRACT FROM AUTHOR]

Lack of public knowledge of palliative care may be a barrier to timely use of palliative care and hinder engagement in advance care planning (ACP). Little research has been conducted on (the relationship between) awareness and actual knowledge of palliative care. To determine awareness and actual knowledge of palliative care and explore factors that contribute to knowledge of palliative care among older people. A cross-sectional study in a representative sample of 1242 Dutch people (≥ 65 years; response 93.2%) on whether they had heard of palliative care and knowledge statements about palliative care. The majority had heard of the term palliative care (90.1%), and 47.1% reported to know (quite) exactly what it means. Most knew palliative care is not only for people with cancer (73.9%) and is not only provided in hospice facilities (60.6%). A minority knew palliative care can be provided alongside life-prolonging treatment (29.8%) and is not only for people who have a few weeks left to live (23.5%). Experience with palliative care through family, friends and/or acquaintances (range ORs: 1.35–3.39 for the four statements), higher education (ORs: 2.09–4.81), being female (ORs: 1.56–1.91), and higher income (OR: 1.93) were positively associated with one or more statements, while increasing age (ORs: 0.52–0.66) was negatively associated. Knowledge of palliative care is limited, stressing the need for population-wide interventions, including information meetings. Attention should be paid to timely attention for palliative care needs. This might stimulate ACP and raise public knowledge of (im) possibilities of palliative care. [ABSTRACT FROM AUTHOR]

Abstract: Research has demonstrated a greater understanding of the needs of terminally ill patients and their families, but it also has been found that the palliative care is not optimal. Because of a lack of quality indicators in palliative care, the quality of the care is often not assessed. The aim of this systematic review was to give an overview of published quality indicators for palliative care in all patient groups and settings, to determine whether these quality indicators cover all domains of palliative care, to describe the different types of quality indicators, and to determine the methodological characteristics of the quality indicators. Relevant studies were identified by searching computerized databases up to December 2007. Publications describing the development process or characteristics of quality indicators for palliative care were selected by two reviewers independently. An additional selection criterion was that numerators and denominators were either defined or could be deduced from the descriptions. The data extraction involved the general description and type of the quality indicator, target population, and applicable setting. We identified 650 publications, of which 16 met the inclusion criteria. These publications described eight sets of quality indicators. These sets contained 142 overlapping quality indicators, covering all but one domain (cultural aspects) of palliative care. Most quality indicators referred to the outcomes or processes of palliative care. The methodological characteristics of the quality indicators varied considerably. We conclude that a substantial number of quality indicators for palliative care are available, but most have not been described in detail. More detailed methodological specifications are needed to accurately monitor the quality of palliative care. [Copyright &y& Elsevier]

Abstract: Context: There is much debate about euthanasia within the context of palliative care. The six criteria of careful practice for lawful euthanasia in The Netherlands aim to safeguard the euthanasia practice against abuse and a disregard of palliative treatment alternatives. Those criteria need to be evaluated by the treating physician as well as an independent euthanasia consultant. Objectives: To investigate 1) whether and how palliative treatment alternatives come up during or preceding euthanasia consultations and 2) how the availability of possible palliative treatment alternatives are assessed by the independent consultant. Methods: We interviewed 14 euthanasia consultants and 12 physicians who had requested a euthanasia consultation. We transcribed and analyzed the interviews and held consensus meetings about the interpretation. Results: Treating physicians generally discuss the whole range of treatment options with the patient before the euthanasia consultation. Consultants actively start thinking about and proposing palliative treatment alternatives after consultations, when they have concluded that the criteria for careful practice have not been met. During the consultation, they take into account various aspects while assessing the criterion concerning the availability of reasonable alternatives, and they clearly distinguish between euthanasia and continuous deep sedation. Most consultants said that it was necessary to verify which forms of palliative care had previously been discussed. Advice concerning palliative care seemed to be related to the timing of the consultation (“early” or “late”). Euthanasia consultants were sometimes unsure whether or not to advise about palliative care, considering it not their task or inappropriate in view of the previous discussions. Conclusion: Two different roles of a euthanasia consultant were identified: a limited one, restricted to the evaluation of the criteria for careful practice, and a broad one, extended to actively providing advice about palliative care. Further medical and ethical debate is needed to determine consultants’ most appropriate role. [Copyright &y& Elsevier]

Context: To provide high-quality palliative care to nursing home residents, staff need to understand the basic principles of palliative care.Objectives: To evaluate the extent of agreement with the basic principles of palliative care of nurses and care assistants working in nursing homes in five European countries and to identify correlates.Methods: This is a cross-sectional study in 214 homes in Belgium, England, Italy, the Netherlands, and Poland. Agreement with basic principles of palliative care was measured with the Rotterdam MOVE2PC. We calculated percentages and odds ratios of agreement and an overall score between 0 (no agreement) and 5 (total agreement).Results: Most staff in all countries agreed that palliative care involves more than pain treatment (58% Poland to 82% Belgium) and includes spiritual care (62% Italy to 76% Belgium) and care for family or relatives (56% Italy to 92% Belgium). Between 51% (the Netherlands) and 64% (Belgium) correctly disagreed that palliative care should start in the last week of life and 24% (Belgium) to 53% (Poland) agreed that palliative care and intensive life-prolonging treatment can be combined. The overall agreement score ranged between 1.82 (Italy) and 3.36 (England). Older staff (0.26; 95% confidence interval [CI]: 0.09-0.43, P = 0.003), nurses (0.59; 95% CI: 0.43-0.75, P < 0.001), and staff who had undertaken palliative care training scored higher (0.21; 95% CI: 0.08-0.34, P = 0.002).Conclusions: The level of agreement of nursing home staff with basic principles of palliative care was only moderate and differed between countries. Efforts to improve the understanding of basic palliative care are needed. [ABSTRACT FROM AUTHOR]

Abstract: Context: In some countries (the United States in particular), quality indicators for palliative care have already been developed. However, these quality indicators often cover one specific setting or target group, for example, palliative cancer care or palliative home care. Objectives: This article describes the development and initial testing of a set of quality indicators for palliative care, applicable for all settings in which palliative care is being provided for adult patients in The Netherlands. Methods and Results: In the first phase of the project, an inventory was made of existing relevant quality indicators. Most quality indicators focused on the process or outcome of palliative care, and quality indicators for the structure of palliative care were rare. Most of the existing quality indicators fall within the domain of physical care, and very few concern the social and spirituals domains of palliative care. In the second phase, a new draft set of quality indicators was developed. In addition to the previous inventory of existing indicators, interviews with patients, relatives, and caregivers provided input for the development of the draft set. Drafts of the set were tested among experts. In the third phase, the feasibility and usability of a draft set was established in 14 Dutch care organizations providing palliative care. Conclusion: As a result of these phases, a set of quality indicators for palliative care has been developed, consisting of 33 indicators for palliative patient care and 10 indicators for support for relatives before and/or after the patient’s death. [Copyright &y& Elsevier]