Bregje D. Onwuteaka-Philipsen

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

BACKGROUNDnDeath thoughts and wishes occur frequently among older people. In different European countries estimates of 10%-20% have been found.nnnAIMSnTo determine the prevalence and associated factors of death thoughts and wishes among older people in The Netherlands.nnnMETHODSnIn The Netherlands 1794 people (58-98 years) were interviewed in 2005/2006 (Longitudinal Aging Study Amsterdam).nnnRESULTSn81.3% 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.nnnCONCLUSIONSnPractical 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.

Primary Care Patients Hastening Death by Voluntarily Stopping Eating and Drinking

PURPOSE Little is known about the role family physicians play when a patient deliberately hastens death by voluntarily stopping eating and drinking (VSED). The purpose of this study was to gain more insight for family physicians when confronted with patients who wish to hasten death by VSED. We aimed to describe physicians’ involvement in VSED, to describe characteristics and motives of their patients, and to describe the process of VSED in terms of duration, as well as common symptoms in the last 3 days of life. METHODS We undertook a survey of a random national sample of 1,100 family physicians (response rate 72%), and 500 of these physicians received questions about their last patient who hastened death by VSED. RESULTS Of the 978 eligible physicians, 708 responded (72.4%); 46% had cared for a patient who hastened death by VSED. Of the 500 physicians who received the additional questions, 440 were eligible and 285 (64.8%) responded; they described 99 cases of VSED. Seventy percent of these patients were aged older than 80 years, 76% had severe disease (27% with cancer), and 77% were dependent on others for everyday care. Frequent reasons for the patients’ death wish were somatic (79%), existential (77%), and dependence (58%). Median time until death was 7 days, and the most common symptoms before death were pain, fatigue, impaired cognitive functioning, and thirst or dry throat. Family physicians were involved in 62% of cases. CONCLUSIONS Patients who hasten death by VSED are mostly in poor health. It is not unlikely for family physicians to be confronted with VSED. They can play an important role in caring for these patients and their proxies by informing them of VSED and by providing support and symptom management during VSED.

Euthanasia requests and cancer types in the Netherlands:is there a relationship?

PURPOSEnCancer patients have generally requested for euthanasia and assisted suicide (EAS) more frequently than others. However, different terminal cancers are accompanied by different clinical courses. This study seeks to explore the relationship, if any, between EAS requesters and cancer types, as relates to the provision of end-of-life care in the Netherlands.nnnMETHODSnStandardized questionnaires were retrospectively sent to all general practitioners (GPs) in 10 of 23 GP-districts in the Netherlands. Of the 3614 respondents (60%), 1442 could describe a most recent EAS request from a cancer patient.nnnRESULTSnCompared to all home cancer deaths, lung, pancreas, stomach oesophagus, lip-mouth-throat cancers and melanomas occur more frequently in the group of cancer patients who requested for EAS; while prostate, haemo-lymphatic, urinary tract, bladder and uterus cancer occur relatively less frequently. Vomiting, shortness of breath and anxiousness were symptoms positively associated, and old age was negatively associated with cancers in which patients relatively frequently request for EAS.nnnCONCLUSIONnThere are differences in the extent to which patients with different cancer types request for EAS. Although shortness of breath, vomiting and anxiousness are associated with cancer types in which patients relatively frequently request for EAS, most symptoms are not associated with this. Possibly a common pathway, including more existential concerns, is important in the last stages of life.

The views of homeless people and healthcare professionals on palliative care and the desirability of setting up a consultation service: a focus group study.

CONTEXTnPalliative care for homeless people is often given late, if at all. Professionals in both palliative care and shelter care are often insufficiently equipped to provide this complex care.nnnOBJECTIVESnTo provide insights into the palliative care experiences of professionals and homeless people, including barriers and facilitators to care, and to investigate whether a consultative function can help improve palliative care for homeless people.nnnMETHODSnSix focus groups were included; four with professionals (nxa0=xa019) and two with severely ill homeless people (nxa0=xa015). Professionals were sampled purposively in organizations providing (palliative) care to the homeless. Homeless people were recruited by opportunity sampling.nnnRESULTSnPalliative care for homeless people is especially complex and differs substantially from regular palliative care. It differs greatly among professionals, institutions, and cities. Homeless people get less autonomy than they would like. Homeless people and professionals have different perceptions of the care provided. Trusting relationships between professionals and homeless people is essential and easily accessible, and flexible care is needed. Consultation, in particular involving exchange of expertise between professionals, can provide added value to professionals. Homeless people consider consultation primarily as an opportunity to train professionals to show more understanding, provide tailored palliative care, and enhance professional collaboration. The local situation, characteristics of a consultant, and role of a consultant in providing information and education must be considered when developing the consultation process.nnnCONCLUSIONnConsultation can play an important role in improving palliative care by linking disciplines, providing support to professionals and appropriate palliative care to homeless people.

Medische beslissingen rond het levenseinde

SamenvattingInleiding Sinds 1990 wordt in Nederland vijfjaarlijks onderzoek gedaan naar de frequentie en belangrijkste kenmerken van medische beslissingen rond het levenseinde. Wij onderzochten de praktijk van euthanasie en andere medische beslissingen rond het levenseinde over een periode van 25 jaar.Methode We trokken een steekproef uit de doodsoorzakenregistratie van het Centraal Bureau voor de Statistiek voor sterfgevallen in de periode augustus tot en met november 2015. De arts die betrokken was bij een sterfgeval stuurden we een vragenlijst.Resultaten Het onderzoek liet zien dat in 2015 het overlijden in 58% van de sterfgevallen was voorafgegaan door een medische beslissing rond het levenseinde. Meestal ging het daarbij om intensivering van symptoombestrijding of beslissingen om af te zien van levensverlengende behandeling. De frequentie van euthanasie steeg van 1,7% in 1990 tot 4,5% in 2015. De frequentie van continue diepe sedatie is ook duidelijk toegenomen, van 8,2% in 2005 tot 12,3% in 2010 en 18,3% in 2015. Levensbeëindiging op verzoek werd in alle onderzoeksjaren in het overgrote deel van de gevallen uitgevoerd door de huisarts. Het responspercentage was 78% en we hebben informatie gekregen over 7661 sterfgevallen.Conclusie In 2015 ging het overlijden in 58% van de sterfgevallen vooraf door een medische beslissing rond het levenseinde. Meestal ging het daarbij om intensivering van symptoombestrijding of beslissingen om af te zien van levensverlengende behandeling.

Care avoidance among homeless people and access to care: an interview study among spiritual caregivers, street pastors, homeless outreach workers and formerly homeless people

BackgroundBecause of their poor health and social vulnerability, homeless people require specific care. However, due to care avoidance, homeless people are often not involved in care. This study aims to get insights into reasons for and kinds of care avoidance among homeless people and to provide suggestions to reach this target group.MethodsSemi-structured individual interviews were conducted among street pastors (nu2009=u20099), spiritual caregivers (nu2009=u20099), homeless outreach workers (nu2009=u20097) and formerly homeless people (nu2009=u20093). Participants were recruited by purposive sampling in the four major cities in the Netherlands (Amsterdam, Utrecht, Rotterdam, The Hague). The verbatim transcripts were analysed using thematic analysis.ResultsThe term care avoidance was perceived as stigmatizing. Care avoidance is found to be related to characteristics of the homeless person (e.g. having complex problems, other priorities) as well as of the system (e.g. complex system, conditions and requirements of organizations). The person-related characteristics suggestions to involve homeless persons include tailoring care and building relationships, which might even be prioritised over starting care interventions. Setting limits on behaviour without rejecting the person, and an attitude reflecting humanity, dignity and equality were also important factors in making care more accessible and lasting. As regards system-related characteristics, the suggestions include clear information and communication to homeless people who avoid care as being crucial in order to make care more accessible. Other suggestions include quiet and less busy shelters, a non-threatening attitude and treatment by professionals, self-reflection by professionals and finally a change of policy and legislation regarding available time.ConclusionsReasons for care avoidance can be found in the interplay between both the individual and the system; measures to reduce care avoidance should be taken at both levels. These measures are centred on lowering the barriers to care inter alia by incorporating building trust and understanding into the care provided.