Challenges in recognizing and discussing changes in a resident's condition in the palliative phase: focus group discussions with nursing staff working in nursing homes about their experiences.

BACKGROUND: Most nursing home residents have complex care needs, require palliative care and eventually die in these facilities. Timely recognition of changes in a resident's condition is crucial for providing appropriate care. Observations by nursing staff play a significant role in identifying and interpreting these changes. METHODS: Focus group discussions were conducted with nursing staff from ten nursing homes in the Netherlands to explore their experiences and challenges in recognizing and discussing changes in a resident's condition. These discussions were analysed following the principles of thematic analysis. RESULTS: The analysis of the challenges nursing staff face in identifying and interpreting changes in a resident's condition, resulted in three themes. First, that recognizing changes is considered complex, because it requires specialized knowledge and skills that is generally not part of their education and must partly be learned in practice. This also depends on how familiar the nursing staff is with the resident. Furthermore, different people observe residents through different lenses, depending on their relation and experiences with residents. This could lead to disagreements about the resident's condition. Lastly, organizational structures such as the resources available to document and discuss a resident's condition and the hierarchy between nursing home professionals often hindered discussions and sharing observations. CONCLUSION: Nursing staff's experiences highlight the complexity of recognizing and discussing changes in nursing home residents' conditions. While supporting the observational skills of nursing staff is important, it is not enough to improve the quality of care for nursing home residents with palliative care needs. As nursing staff experiences challenges at different, interrelated levels, improving the process of recognizing and discussing changes in nursing home residents requires an integrated approach in which the organization strengthens the position of nursing staff. It is important that their observations become a valued and integrated and part of nursing home care.

Meaning-making following loss among bereaved spouses during the COVID-19 pandemic (the CO-LIVE study).

This study investigates how individuals construe, understand, and make sense of experiences during the first wave of the COVID-19 pandemic. Seventeen semi-structured interviews were conducted with bereaved spouses focusing on meaning attribution to the death of their partner. The interviewees were lacking adequate information, personalized care, and physical or emotional proximity; these challenges complicated their experience of a meaningful death of their partner. Concomitantly, many interviewees appreciated the exchange of experiences with others and any last moments together with their partner. Bereaved spouses actively sought valuable moments, during and after bereavement, that contributed to the perceived meaning.

Large differences in the organization of palliative care in nursing homes in six European countries: findings from the PACE cross-sectional study.

BACKGROUND: To be able to provide high-quality palliative care, there need to be a number of organizational structures available in the nursing homes. It is unclear to what extent such structures are actually present in nursing homes in Europe. We aim to examine structural indicators for quality of palliative care in nursing homes in Europe and to evaluate the differences in terms of availability of and access to palliative care, infrastructure for residents and families, multidisciplinary meetings and quality improvement initiatives. METHODS: A PACE cross-sectional study (2015) of nursing homes in Belgium, England, Finland, Italy, the Netherlands and Poland. Nursing homes (N = 322) were selected in each country via proportional stratified random sampling. Nursing home administrators (N = 305) filled in structured questionnaires on nursing home characteristics. Organization of palliative care was measured using 13 of the previously defined IMPACT structural indicators for quality of palliative care covering four domains: availability of and access to palliative care, infrastructure for residents and families, multidisciplinary meetings and quality improvement initiatives. We calculated structural indicator scores for each country and computed differences in indicator scores between the six countries. Pearson's Chi-square test was used to compute the p-value of each difference. RESULTS: The availability of specialist palliative care teams in nursing homes was limited (6.1-48.7%). In Finland, Poland and Italy, specialist advice was also less often available (35.6-46.9%). Up to 49% of the nursing homes did not provide a dedicated contact person who maintained regular contact with the resident and relatives. The 24/7 availability of opioids for all nursing home residents was low in Poland (37.5%). CONCLUSIONS: This study found a large heterogeneity between countries in the organization of palliative care in nursing homes, although a common challenge is ensuring sufficient structural access to specialist palliative care services. Policymakers and health and palliative care organizations can use these structural indicators to identify areas for improvement in the organization of palliative care.

Dignity of informal caregivers of migrant patients in the last phase of life: a qualitative study.

BACKGROUND: A key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients. METHODS: Twenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically. RESULTS: The dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients' dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient's wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient's preferences and help preserve the patient's dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver's dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient's dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life. CONCLUSION: The dignity of migrant patients' informal caregivers in the last phase of a patient's life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role.

The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study.

BACKGROUND: The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers' efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects. METHODS: We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation. RESULTS: Researchers' efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers' efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies. CONCLUSION: Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.

A dignified last phase of life for patients with a migration background: A qualitative study.

BACKGROUND: Preserving personal dignity is an important part of palliative care. Generally, autonomy, independency and not being a burden to others are emphasised for preserving dignity. Dignity has not been studied yet from the perspective of the growing group of patients with a migration background living in Western countries. AIM: To gain insight into (1) what patients - and their relatives - with a Turkish, Moroccan or Surinamese background, living in the Netherlands, in their last phase of life find important aspects of dignity, and (2) how care professionals can preserve and strengthen the dignity of these patients. DESIGN: Qualitative thematic analysis of semi-structured interviews. PARTICIPANTS: A total of 23 patients and 21 relatives with a Turkish, Moroccan or Surinamese background were interviewed. RESULTS: For respondents dignity encompassed surrender to God's or Allah's will and meaningful relationships with others, rather than preserving autonomy. Surrender to God or Allah meant accepting the illness, the situation and performing religious practice. A meaningful relationship meant being assisted or cared for by family members and maintaining a social role. Professionals could preserve dignity by showing respect and attention; guaranteeing physical integrity, hygiene and self-direction; and indirect communication about diagnoses and prognoses. CONCLUSIONS: Religion and appropriate involvement of family members are important aspects of dignity in the last phase of life, in addition to autonomy and independency. Care professionals need to take these factors into account in order to provide person-centred care.

How to help researchers in palliative care improve responsiveness to migrants and other underrepresented populations: developing and testing a self-assessment instrument.

BACKGROUND: European migrant populations are aging and will increasingly be in need of palliative and end of life care. However, migrant patients are often underrepresented in palliative care research populations. This poses a number of drawbacks, such as the inability to generalize findings or check the appropriateness of care innovations amongst migrant patients. The aim of this study was to develop a self-assessment instrument to help palliative care researchers assess and find ways to improve their projects' diversity responsiveness in light of the aging migrant population, and determine whether in addition to older migrants other groups should be included in the instrument's focus. METHODS: After developing a concept instrument based on the standards for equity in healthcare for migrants and other vulnerable groups, literature review and interviews with palliative care researchers, we conducted a Delphi study to establish the content of the self-assessment instrument and used think aloud methods in a study involving seven projects for usability testing of the self-assessment instrument. RESULTS: A Delphi panel of 22 experts responded to a questionnaire consisting of 3 items concerning the target group and 30 items on diversity responsiveness measures. Using an a priori set consensus rate of 75% to include items in the self-assessment instrument, experts reached consensus on 25 out of 30 items on diversity responsiveness measures. Findings furthermore indicate that underserved groups in palliative care other than migrant patients should be included in the instrument's focus. This was stressed by both the experts involved in the Delphi study and the researchers engaged in usability testing. Usability testing additionally provided insights into learnability, error-rate, satisfaction and applicability of the instrument, which were used to revise the self-assessment instrument. CONCLUSIONS: The final self-assessment instrument includes a list of 23 diversity responsiveness measures to be taken at varying stages of a project, and targets all groups at risk of being underrepresented. This instrument can be used in palliative care research to assess diversity responsiveness of projects and instigate action for improvement.

Consensus on treatment for residents in long-term care facilities: perspectives from relatives and care staff in the PACE cross-sectional study in 6 European countries.

BACKGROUND: In long-term care facilities often many care providers are involved, which could make it difficult to reach consensus in care. This may harm the relation between care providers and can complicate care. This study aimed to describe and compare in six European countries the degree of consensus among everyone involved in care decisions, from the perspective of relatives and care staff. Another aim was to assess which factors are associated with reporting that full consensus was reached, from the perspective of care staff and relatives. METHODS: In Belgium, England, Finland, Italy, the Netherlands and Poland a random sample of representative long-term care facilities reported all deaths of residents in the previous three months (n = 1707). This study included residents about whom care staff (n = 1284) and relatives (n = 790) indicated in questionnaires the degree of consensus among all involved in the decision or care process. To account for clustering on facility level, Generalized Estimating Equations were conducted to analyse the degree of consensus across countries and factors associated with full consensus. RESULTS: Relatives indicated full consensus in more than half of the residents in all countries (NL 57.9% - EN 68%), except in Finland (40.7%). Care staff reported full consensus in 59.5% of residents in Finland to 86.1% of residents in England. Relatives more likely reported full consensus when: the resident was more comfortable or talked about treatment preferences, a care provider explained what palliative care is, family-physician communication was well perceived, their relation to the resident was other than child (compared to spouse/partner) or if they lived in Poland or Belgium (compared to Finland). Care staff more often indicated full consensus when they rated a higher comfort level of the resident, or if they lived in Italy, the Netherland, Poland or England (compared to Finland). CONCLUSIONS: In most countries the frequency of full consensus among all involved in care decisions was relatively high. Across countries care staff indicated full consensus more often and no consensus less often than relatives. Advance care planning, comfort and good communication between relatives and care professionals could play a role in achieving full consensus.

Care staff's self-efficacy regarding end-of-life communication in the long-term care setting: Results of the PACE cross-sectional study in six European countries.

BACKGROUND: An important part of palliative care is discussing preferences at end of life, however such conversations may not often occur. Care staff with greater self-efficacy towards end-of-life communication are probably more likely to have such discussions, however, there is a lack of research on self-efficacy towards end-of-life discussions among long-term care staff in Europe and related factors. OBJECTIVES: Firstly, to describe and compare the self-efficacy level of long-term care staff regarding end-of-life communication across six countries; secondly, to analyse characteristics of staff and facilities which are associated to self-efficacy towards end-of-life communication. DESIGN: Cross-sectional survey. SETTINGS: Long-term care facilities in Belgium, England, Finland, Italy, the Netherlands and Poland (n = 290). PARTICIPANTS: Nurses and care assistants (n = 1680) completed a self-efficacy scale and were included in the analyses. METHODS: Care staff rated their self-efficacy (confidence in their own ability) on a scale of 0 (cannot do at all) to 7 -(certain can do) of the 8-item communication subscale of the Self-efficacy in End-of-Life Care survey. Staff characteristics included age, gender, professional role, education level, training in palliative care and years working in direct care. Facility characteristics included facility type and availability of palliative care guidelines, palliative care team and palliative care advice. Analyses were conducted using Generalized Estimating Equations, to account for clustering of data at facility level. RESULTS: Thde proportion of staff with a mean self-efficacy score >5 was highest in the Netherlands (76.4%), ranged between 55.9% and 60.0% in Belgium, Poland, England and Finland and was lowest in Italy (29.6%). Higher levels of self-efficacy (>5) were associated with: staff over 50 years of age (OR 1.86 95% CI[1.30-2.65]); nurses (compared to care assistants) (1.75 [1.20-2.54]); completion of higher secondary or tertiary education (respectively 2.22 [1.53-3.21] and 3.11 [2.05-4.71]; formal palliative care training (1.71 [1.32-2.21]); working in direct care for over 10 years (1.53 [1.14-2.05]); working in a facility with care provided by onsite nurses and care assistants and offsite physicians (1.86 [1.30-2.65]); and working in a facility where guidelines for palliative care were available (1.39 [1.03-1.88]). CONCLUSION: Self-efficacy towards end-of-life communication was most often low in Italy and most often high in the Netherlands. In all countries, low self-efficacy was found relatively often for discussion of prognosis. Palliative care education and guidelines for palliative care could improve the self-efficacy of care staff.

Physician Visits and Recognition of Residents' Terminal Phase in Long-Term Care Facilities: Findings From the PACE Cross-Sectional Study in 6 EU Countries.

OBJECTIVES: To describe the relation between physician visits and physicians' recognition of a resident's terminal phase in long-term care facilities (LTCFs) in Belgium, England, Finland, Italy, the Netherlands, and Poland. DESIGN: In each country, a cross-sectional study was conducted across representative samples of LTCFs. Participating LTCFs reported all deaths of residents in the previous 3 months, and structured questionnaires were sent to several proxy respondents including the treating physician. SETTING AND PARTICIPANTS: 1094 residents in 239 LTCFs, about whom 505 physicians returned the questionnaire. MEASURES: Number of physician visits, the resident's main treatment goal, whether physicians recognized the resident's terminal phase and expected the resident's death, and resident and physician characteristics. RESULTS: The number of physician visits to residents varied widely between countries, ranging from a median of 15 visits in the last 3 months of life in Poland to 5 in England, and from 4 visits in the last week of life in the Netherlands to 1 in England. Among all countries, physicians from Poland and Italy were least inclined to recognize that the resident was in the terminal phase (63.0% in Poland compared to 80.3% in the Netherlands), and residents in these countries had palliation as main treatment goal the least (31.8% in Italy compared to 92.6% in the Netherlands). Overall however, there were positive associations between the number of physician visits and the recognition of the resident's terminal phase and between the number of physician visits and the resident having palliation as main treatment goal in the last week of life. CONCLUSIONS AND IMPLICATIONS: This study suggests that LTCFs should be encouraged to work collaboratively with physicians to involve them as much as possible in caring for their residents. Joint working will facilitate the recognition of a resident's terminal phase and the timely provision of palliative care.

Decision support systems for incurable non-small cell lung cancer: a systematic review.

BACKGROUND: Individually tailored cancer treatment is essential to ensure optimal treatment and resource use. Treatments for incurable metastatic non-small cell lung cancer (NSCLC) are evolving rapidly, and decision support systems (DSS) for this patient population have been developed to balance benefits and harms for decision-making. The aim of this systematic review was to inventory DSS for stage IIIB/IV NSCLC patients. METHODS: A systematic literature search was performed in Pubmed, Embase and the Cochrane Library. DSS were described extensively, including their predictors, model performances (i.e., discriminative ability and calibration), levels of validation and user friendliness. RESULTS: The systematic search yielded 3531 articles. In total, 67 articles were included after additional reference tracking. The 39 identified DSS aim to predict overall survival and/or progression-free survival, but give no information about toxicity or cost-effectiveness. Various predictors were incorporated, such as performance status, serum and inflammatory markers, and patient and tumor characteristics. Some DSS were developed for the entire incurable NSCLC population, whereas others were specifically for patients with brain or spinal metastases. Few DSS had been validated externally using recent clinical data, and the discrimination and calibration were often poor. CONCLUSIONS: Many DSS have been developed for incurable NSCLC patients, but DSS are still lacking that are up-to-date with a good model performance, while covering the entire treatment spectrum. Future DSS should incorporate genetic and biological markers based on state-of-the-art evidence, and compare multiple treatment options to estimate survival, toxicity and cost-effectiveness.

[Appropriate care in the last phase of life]. / Passende zorg in de laatste levensfase.

OBJECTIVE: To identify the types of care that patients and relatives perceive as appropriate or inappropriate in the last phase of life. DESIGN: Questionnaire survey. METHOD: By means of an internet questionnaire with open questions, we asked patients and relatives about their experiences of care in the last phase of life and if they found it appropriate or inappropriate, and why. We recruited via e-mails, Twitter, Facebook, newsletters and links on homepages of patient organisations. Members of a Dutch large organisation for older people (Unie KBO) received the questionnaire on paper. RESULTS: Forty-five patients and 547 relatives described received one or more cases. We found 429 cases of appropriate care and 309 different cases of inappropriate care. We identified five common dimensions of appropriate and inappropriate care, i.e., supportive care, treatment decisions, location of care, following the patient's wishes and communication. In the cases of appropriate care, all five dimensions were regularly mentioned; supportive care being most-frequently mentioned. In cases of inappropriate care, the dimensions treatment decisions, supportive care and communication were most often mentioned. Descriptions of appropriate care more frequently concerned patients with cancer, and descriptions of inappropriate care more frequently concerned patients with other somatic conditions or psychiatric conditions. Nurses or carers and general practitioners were more often mentioned in descriptions of appropriate care, and medical specialists more often mentioned in descriptions of inappropriate care. CONCLUSION: Appropriate care appears to be a wide-ranging term covering supportive care, treatment decisions, communication, following the patient's wishes, and the location where care is provided. Inappropriate treatment decisions and communication problems are the main threats to appropriate care in the last phase of life.

Palliative care in mental health facilities from the perspective of nurses: a mixed-methods study.

WHAT IS KNOWN ON THE SUBJECT?: Nurses play an important role in monitoring and supporting patients and their relatives at the end of life. To date, there is a lack of recent empirical research on the experiences of psychiatric nurses in providing palliative care to psychiatric patients who suffer from life-threatening physical co-morbidity. The limited literature available indicates that palliative care for psychiatric patients needs to be improved. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This explorative study is unique in offering an insight into current palliative care practice for psychiatric patients and showed that one in three nurses working in Dutch mental health facilities is involved in palliative care provision. Important elements of palliative care, i.e.: care domains, multidisciplinary approach, early recognition and family care are recognized by nurses. Moreover, in palliative care for psychiatric patients there is more attention for psychosocial and spiritual care compared to palliative care for patients without psychiatric disorders. Patient characteristics and little attention for palliative care within mental health facilities were found to hamper timely and adequate palliative care provision by nurses. WHAT ARE THE IMPLICATIONS FOR RESEARCH AND PRACTICE?: Educating psychiatric nurses about palliative care and close collaboration between physical and mental health care are crucial to address the palliative care needs of this vulnerable patient group. Since mental health care is increasingly provided ambulatory, the development of palliative care for psychiatric patients outside mental health facilities should be closely monitored. ABSTRACT: Introduction Recent empirical research on palliative care for psychiatric patients is lacking. Aim The aim of this study was to explore nurses' experiences with and identify barriers to providing palliative care to psychiatric patients in Dutch mental health facilities. Methods Mixed-methods; 137 nurses working in Dutch mental health facilities completed a survey. Nine participated in in-depth interviews. Results Thirty-six percent of nurses had experience with providing palliative care to psychiatric patients with physical co-morbidity in the past 2 years. Of all patients, 63% received physical care before death, 46% psychosocial care and 33% spiritual care. In 91% of all cases, care was provided by multidisciplinary teams. Patient characteristics and little attention to palliative care were barriers for timely and adequate palliative care. Discussion In palliative care for psychiatric patients, there is more attention for psychosocial and spiritual care compared to palliative care for patients without psychiatric disorders. Yet there are barriers to adequate palliative care provision. Implications for practice Educating psychiatric nurses about palliative care and close collaboration between physical and mental health care are crucial to address the palliative care needs of psychiatric patients. Since mental health care is increasingly provided ambulatory, palliative care for psychiatric patients outside mental health facilities should be closely monitored.

International study of the place of death of people with cancer: a population-level comparison of 14 countries across 4 continents using death certificate data.

BACKGROUND: Where people die can influence a number of indicators of the quality of dying. We aimed to describe the place of death of people with cancer and its associations with clinical, socio-demographic and healthcare supply characteristics in 14 countries. METHODS: Cross-sectional study using death certificate data for all deaths from cancer (ICD-10 codes C00-C97) in 2008 in Belgium, Canada, Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (2010), USA (2007) and Wales (N=1,355,910). Multivariable logistic regression analyses evaluated factors associated with home death within countries and differences across countries. RESULTS: Between 12% (South Korea) and 57% (Mexico) of cancer deaths occurred at home; between 26% (Netherlands, New Zealand) and 87% (South Korea) occurred in hospital. The large between-country differences in home or hospital deaths were partly explained by differences in availability of hospital- and long-term care beds and general practitioners. Haematologic rather than solid cancer (odds ratios (ORs) 1.29-3.17) and being married rather than divorced (ORs 1.17-2.54) were most consistently associated with home death across countries. CONCLUSIONS: A large country variation in the place of death can partly be explained by countries' healthcare resources. Country-specific choices regarding the organisation of end-of-life cancer care likely explain an additional part. These findings indicate the further challenge to evaluate how different specific policies can influence place of death patterns.

Do guidelines on euthanasia and physician-assisted suicide in Dutch hospitals and nursing homes reflect the law? A content analysis.

To describe the content of practice guidelines on euthanasia and assisted suicide (EAS) and to compare differences between settings and guidelines developed before or after enactment of the euthanasia law in 2002 by means of a content analysis. Most guidelines stated that the attending physician is responsible for the decision to grant or refuse an EAS request. Due care criteria were described in the majority of guidelines, but aspects relevant for assessing these criteria were not always described. Half of the guidelines described the role of the nurse in the performance of euthanasia. Compared with hospital guidelines, nursing home guidelines were more often stricter than the law in excluding patients with dementia (30% vs 4%) and incompetent patients (25% vs 4%). As from 2002, the guidelines were less strict in categorically excluding patients groups (32% vs 64%) and in particular incompetent patients (10% vs 29%). Healthcare institutions should accurately state the boundaries of the law, also when they prefer to set stricter boundaries for their own institution. Only then can guidelines provide adequate support for physicians and nurses in the difficult EAS decision-making process.

[Older people who are 'weary of life': their expectations for the future and perceived hopelessness]. / Ouderen die 'klaar met leven' zijn: Toekomstverwachtingen en ervaren uitzichtloosheid.

There has been a debate for over a decade in The Netherlands about whether physicians should be allowed to provide assistance with suicide to older people who are 'weary of life'. Actual knowledge about these older people is missing in this debate. The purpose of this article is to explore and discuss the expectations older people who are 'weary of life' have of their future, and to what extent they perceive their suffering as hopeless. In this qualitative study, 31 older people who were 'weary of life' were interviewed. The results of this study show that most respondents who were 'weary of life' did not plan to end their life within a short time frame. The burden to their loved ones played a large role in their decision in addition to the awareness of still having reasons to live. Most respondents tried not to think too much about the future, and hoped death would come soon. Most respondents could not name a condition that would diminish their wish to die, that they also found desirable and feasible. The results of this study suggest that people who develop thoughts about death do so when they give up finding solutions to improve their situation.

Understanding why older people develop a wish to die: a qualitative interview study.

BACKGROUND: Quantitative studies in several European countries showed that 10-20% of older people have or have had a wish to die. AIMS: To improve our understanding of why some older people develop a wish to die. METHODS: In-depth interviews with people with a wish to die (n = 31) were carried out. Through open coding and inductive analysis, we developed a conceptual framework to describe the development of death wishes. Respondents were selected from two cohort studies. RESULTS: The wish to die had either been triggered suddenly after traumatic life events or had developed gradually after a life full of adversity, as a consequence of aging or illness, or after recurring depression. The respondents were in a situation they considered unacceptable, yet they felt they had no control to change their situation and thus progressively "gave up" trying. Recurring themes included being widowed, feeling lonely, being a victim, being dependent, and wanting to be useful. Developing thoughts about death as a positive thing or a release from problems seemed to them like a way to reclaim control. CONCLUSIONS: People who wish to die originally develop thoughts about death as a positive solution to life events or to an adverse situation, and eventually reach a balance of the wish to live and to die.

Wishes to die in older people: a quantitative study of prevalence and associated factors.

BACKGROUND: Death thoughts and wishes occur frequently among older people. In different European countries estimates of 10%-20% have been found. AIMS: To determine the prevalence and associated factors of death thoughts and wishes among older people in The Netherlands. METHODS: In The Netherlands 1794 people (58-98 years) were interviewed in 2005/2006 (Longitudinal Aging Study Amsterdam). RESULTS: 81.3% reported never having death thoughts/wishes; 15.3% reported having had such thoughts/wishes; 3.4% reported currently having a wish to die and/or a weakened wish to continue living. Of those with a current wish to die, 67% had depressive symptoms (vs. 32% of people with death thoughts/wishes ever and 9% of people who never had had death thoughts/wishes), and 20% suffered from a depressive disorder (vs. 5% if death thoughts/wishes ever; 0.3% if never death thoughts/wishes). In a multivariate analysis, a current wish to die was associated with having depressive symptoms, a depressive disorder, lower perceived mastery, financial problems, loneliness, small network, involuntary urine loss, being divorced, and having a speech impediment. CONCLUSIONS: Practical implications for health-care professionals are that they should be aware that in certain situations older people are more likely to develop a wish to die, and that a wish to die does not necessarily mean that someone has a depressive disorder. Nevertheless, it should serve as a trigger to investigate and to treat depression if present.

Recruiting end-of-life cancer patients in the Netherlands for a study on suffering and euthanasia requests.

BACKGROUND: In the Netherlands, GPs performed euthanasia or physician-assisted suicide (EAS) in ∼1 of 10 end-of-life cancer patients in their care. Of all explicit requests for EAS directed at GPs, ∼44% resulted in EAS. However, the suffering of patients who do and do not request EAS has never been studied. An important barrier for such research is the low prevalence of end-of-life cancer patients per practice (on average two/year). We studied whether it is possible to recruit end-of-life cancer patients, following-up for requests for EAS (if any), in an interview study in general practice, whether selection occurred and which were the threats and opportunities to recruitment. Our target was to recruit at least 50 patients. METHODS: Characteristics of all eligible patients were monitored. RESULTS: One in every three eligible patients were recruited by 44 GPs in a 3-year inclusion period, resulting in 64 patients in the interview study with follow-up until death. The prevalence of explicit requests for EAS was higher (27%; P = 0.026) in the interview sample, and the presence of a depressed mood according to the GP was lower (5%; P = 0.013) than in the sample with eligible but not participating patients. CONCLUSIONS: Recruitment of slightly more than the minimal target number of end-of-life cancer patients in this study in general practice was realized. Monitoring of all eligible patients permitted to evaluate the selection which occurred. Recruitment through GPs who were direct professional colleagues of one of the researchers was a positive recruitment factor.

Depression and explicit requests for euthanasia in end-of-life cancer patients in primary care in the Netherlands: a longitudinal, prospective study.

BACKGROUND: In the Netherlands, many (45%) cancer patients die at home, in the care of GPs. About 1 out of 10 end-of-life cancer deaths is hastened by GPs through euthanasia or physician-assisted suicide. However, the relationship between depression and requests for euthanasia has never been prospectively studied directly in primary care. OBJECTIVE: This study aimed to assess the prevalence of depression in end-of-life cancer patients requesting euthanasia in primary care, as well as to assess the relationship between depression and requesting euthanasia. METHODS: Primary care patients with incurable cancer and an estimated life expectancy of half a year or shorter were interviewed every 2 months, using standardized psychometric instruments. Also, non-recruited eligible patients were monitored. RESULTS: Out of 258 eligible patients, 76 patients were recruited, of whom 64 patients were followed up until death. Of these, 27% (n = 17) explicitly requested euthanasia. One patient suffered from major depression. According to the depression subscale of the Hospital Anxiety and Depression Scale, 47% of the patients who explicitly requested euthanasia versus 28% of those without an euthanasia request suffered from a depressed mood at inclusion; the difference was not significant (P = 0.2). Corresponding figures for the last interview before death were 40% and 41% (P = 0.6). CONCLUSIONS: Major depression was not a major factor in explicit requests for euthanasia in end-of-life cancer patients in primary care. Further depressed mood was not associated with explicitly requesting euthanasia in this patient group, although statistical underpower cannot be ruled out in this small sample.