The liminal space palliative care volunteers occupy and their roles within it : a qualitative study

Objectives Volunteers have an important place in palliative care (PC), positively influencing quality of care for seriously ill people and those close to them and providing a link to the community. However, it is not well understood where volunteers fit into PC provision or how to support them adequately. We therefore chose to describe volunteer roles across care settings through the perspective of those closely involved in the care of terminally ill people. Methods A qualitative study was conducted using both focus groups with volunteers, nurses, psychologists and family physicians and individual semistructured interviews with patients and family caregivers. Participants were recruited from hospital, home, day care and live-in services. Results 79 people participated in the study. Two volunteer roles were identified. The first was 'being there' for the dying person. Volunteers represent a more approachable face of care, focused on psychological, social and existential care and building relationships. The second was the 'liaison' role. Volunteers occupy a liminal space between the professional and the family domain, through which they notice and communicate patient needs missed by other caregivers. Patient-volunteer matching was a facilitator for role performance; barriers were lack of communication opportunities with professional caregivers and lack of volunteer coordination. Conclusion Volunteers complement professional caregivers by (1) occupying a unique space between professionals, family and patients and fulfilling a liaison function and (2) being a unique face of care for patients. Healthcare services and policy can support volunteer role performance by ensuring frequent communication opportunities and volunteer coordination

Nationwide survey to evaluate the decision-making process in euthanasia requests in Belgium : do specifically trained 2nd physicians improve quality of consultation?

Background: Following the 2002 enactment of the Belgian law on euthanasia, which requires the consultation of an independent second physician before proceeding with euthanasia, the Life End Information Forum (LEIF) was founded which provides specifically trained physicians who can act as mandatory consultants in euthanasia requests. This study assesses quality of consultations in Flanders and Brussels and compares these between LEIF and non-LEIF consultants. Methods: A questionnaire was sent in 2009 to a random sample of 3,006 physicians in Belgium from specialties likely involved in the care of dying patients. Several questions about the last euthanasia request of one of their patients were asked. As LEIF serves the Flemish speaking community (i.e. region of Flanders and the bilingual Brussels Capital Region) and no similar counterpart is present in Wallonia, analyses were limited to Flemish speaking physicians in Flanders and Brussels. Results: Response was 34%. Of the 244 physicians who indicated having received a euthanasia request seventy percent consulted a second physician in their last request; in 30% this was with a LEIF physician. Compared to non-LEIF physicians, LEIF physicians were more often not a colleague (69% vs 42%) and not a co-attending physician (89% vs 66%). They tended to more often discuss the request with the attending physician (100% vs 95%) and with the family (76% vs 69%), and also more frequently helped the attending physician with performing euthanasia (44% vs 24%). No significant differences were found in the extent to which they talked to the patient (96% vs 93%) and examined the patient file (94% vs 97%). Conclusion: In cases of explicit euthanasia requests in Belgium, the consultation procedure of another physician by the attending physician is not optimal and can be improved. Training and putting at disposal consultants through forums such as LEIF seems able to improve this situation. Adding stipulations in the law about the necessary competencies and tasks of consulting physicians may additionally incite improvement. Irrespective of whether euthanasia is a legal practice within a country, similar services may prove useful to also improve quality of consultations in various other difficult end-of-life decision-making situations

Establishing specialized health services for professional consultation in euthanasia: experiences in the Netherlands and Belgium

<p>Abstract</p> <p>Background</p> <p>The Netherlands, Belgium, and Luxembourg have adopted laws decriminalizing euthanasia under strict conditions of prudent practice. These laws stipulate, among other things, that the attending physician should consult an independent colleague to judge whether the substantive criteria of due care have been met. In this context initiatives were taken in the Netherlands and Belgium to establish specialized services providing such consultants: Support and Consultation for Euthanasia in the Netherlands (SCEN) and Life End Information Forum (LEIF) in Belgium. The aim of this study is to describe and compare these initiatives.</p> <p>Methods</p> <p>We studied and compared relevant documents concerning the Dutch and Belgian consultation service (e.g. articles of bye-laws, inventories of activities, training books, consultation protocols).</p> <p>Results</p> <p>In both countries, the consultation services are delivered by trained physicians who can be consulted in cases of a request for euthanasia and who offer support and information to attending physicians. The context in which the two organisations were founded, as well as the way they are organised and regulated, is different in each country. By providing information on all end-of-life care matters, the Belgian LEIF seems to have a broader consultation role than the Dutch SCEN. SCEN on the other hand has a longer history, is more regulated and organised on a larger scale and receives more government funding than LEIF. The number of training hours for physicians is equal. However, SCEN-training puts more emphasis on the consultation report, whereas LEIF-training primarily emphasizes the ethical framework of end-of-life decisions.</p> <p>Conclusion</p> <p>In case of a request for euthanasia, in the Netherlands as well as in Belgium similar consultation services by independent qualified physicians have been developed. In countries where legalising physician-assisted death is being contemplated, the development of such a consultation provision could also be considered in order to safeguard the practice of euthanasia (as it can provide safeguards to adequate performance of euthanasia and assisted suicide).</p

Volunteer involvement in the organisation of palliative care : a survey study of the healthcare system in Flanders and Dutch-speaking Brussels, Belgium

Ageing populations increasingly face chronic and terminal illnesses, emphasising the importance of palliative care and quality of life for terminally ill people. Facing resource constraints in professional healthcare, some governments expect informal caregivers like volunteers to assume a greater share of care provision. We know volunteers are present in palliative care and perform many roles, ranging from administration to providing companionship. However, we do not know how involved they are in the organisation of care and how healthcare organisations appraise their involvement. To address this, we provide an extensive description of the involvement of volunteers who provide direct patient palliative care across the Flemish healthcare system in Belgium. We conducted a cross-sectional postal survey of 342 healthcare organisations in Flanders and Brussels in 2016, including full-population samples of palliative care units, palliative day care centres, palliative home-care teams, medical oncology departments, sitting services, community home-care services, and a random sample of nursing homes. Volunteer involvement was measured using Sallnow and Paul's power-sharing model, which describes five hierarchical levels of engagement, ranging from being informed about the organisation of care to autonomy over certain aspects of care provision. Response was obtained for 254 (79%) organisations. Volunteers were often informed about and consulted regarding the organisation of care, but healthcare organisations did not wish for more autonomous forms of volunteer involvement. Three clusters of volunteer involvement were found: "strong involvement" (31.5%), "restricted involvement" (44%), and "uninvolved" (24.5%). Degree of involvement was found to be positively associated with volunteer training (p < 0.001) and performance of practical (p < 0.001) and psychosocial care tasks (p < 0.001). Dedicated palliative care services displayed a strong degree of volunteer involvement, contrary to generalist palliative care services, suggesting volunteers have a more important position in dedicated palliative care services. A link is found between volunteer involvement, training, and task performance

The involvement of volunteers in palliative care and their collaboration with healthcare professionals : a cross-sectional volunteer survey across the Flemish healthcare system (Belgium)

Volunteers occupy a specific space in the delivery of palliative care (PC), addressing specific aspects of care and providing a link between professional healthcare providers and informal care. Engaging and empowering these volunteers can be an important strategy to deliver more integrated and comprehensive PC. Insights into current actual volunteer involvement and collaboration across different healthcare services providing generalist and specialist PC is lacking. This study aims to describe volunteers' involvement in the organisation of PC, collaboration with professionals and how they evaluate this. A cross-sectional postal survey of volunteers was conducted between June and November 2018 using a written questionnaire. A two-step disproportionately stratified cluster randomised sample of 2,273 registered volunteers was taken from different strata of healthcare organisations providing care for people with serious illnesses in the Flemish healthcare system (Belgium). Overall response was 35% (15%-60% for individual strata). About 67% of volunteers were often to always informed about the organisation of patient care and 48% felt the organisation often to always takes their opinion into account, while a minority report having decision rights (18%) or autonomy (24%). For some, their organisation failed to inform (17%), consult (27%), take into account their opinion (21%), give them decision rights (20%) or autonomy (16%) over certain aspects of patient care provision often enough. Overall, volunteer-professional collaboration was low, and mostly limited to information sharing. Dedicated PC volunteers collaborated extensively with nurses, often involving task coordination (46%). Ambiguity regarding tasks, agreements and/or rules (15%) and lack of information exchange (14%) were the most cited barriers to volunteer-professional collaboration. Many volunteers were open to stronger involvement in the organisation of care in PC services. Collaboration with professionals seemed lacking in width and depth. Particularly, nursing home volunteers indicated a desire and large potential for more involved and collaborative roles in PC provision

Palliative care volunteerism across the healthcare system : a survey study

Background: Volunteers fulfil several roles in supporting terminally ill people and their relatives and can positively influence quality of care. Healthcare in many countries faces resource constraints and some governments now expect communities to provide an increasing proportion of palliative care. However, systematic insights into volunteer presence, tasks and training and organisational challenges for volunteerism are lacking. Aim: Describe organised volunteerism in palliative direct patient care across the Flemish healthcare system (Belgium). Design: A cross-sectional postal survey using a self-developed questionnaire was conducted with 342 healthcare organisations. Setting/participants: The study included full population samples of palliative care units, palliative day-care centres, palliative home care teams, medical oncology departments, sitting services, community home care services and a random sample of nursing homes. Results: Responses were obtained for 254 (79%) organisations; 80% have volunteers providing direct patient care. Psychosocial, signalling and existential care tasks were the most prevalent volunteer tasks. The most cited organisational barriers were finding suitable (84%) and new (80%) volunteers; 33% of organisations offered obligatory training (75% dedicated palliative care, 12% nursing homes). Differences in volunteer use were associated with training needs and prevalence of organisational barriers. Conclusion: Results suggest potential for larger volunteer contingents. The necessity of volunteer support and training and organisational coordination of recruitment efforts is emphasised. Organisations are encouraged to invest in adequate volunteer support and training. The potential of shared frameworks for recruitment and training of volunteers is discussed. Future research should study volunteerism at the volunteer level to contrast with organisational data

772263_supp_mat_Questionnaire_general_version_(English) – Supplemental material for Palliative care volunteerism across the healthcare system: A survey study

<p>Supplemental material, 772263_supp_mat_Questionnaire_general_version_(English) for Palliative care volunteerism across the healthcare system: A survey study by Steven Vanderstichelen, Dirk Houttekier, Joachim Cohen, Yanna Van Wesemael, Luc Deliens and Kenneth Chambaere in Palliative Medicine</p