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Purpose: Routinely assessing quality of life (QoL) of patients with cancer is crucial for improving patient-centred cancer care. However, little is known about whether or how cancer centres assess QoL for clinical practice or for research purposes. Therefore, our study aimed to investigate if QoL data is collected and if so, how and for what purposes. Method: We conducted a cross-sectional survey study among 32 cancer centres in Europe and Canada. Centre representatives identified the most suitable persons within their cancer ward and/or palliative care ward to complete an online survey. Descriptive statistics were used to summarise the information on QoL assessment and documentation. Results: There were 20 (62.5%) responding cancer centres. In total, 30 questionnaires were completed, of which 13 were completed for cancer wards and 17 for PC wards. We found that 23.1% and 38.5% of the cancer wards routinely assessed QoL among inpatients and outpatients with cancer, respectively, whereas, in palliative care wards, 53% assessed QoL for outpatients with cancer and 70.6% for the inpatients. Wide variabilities were observed between the cancer centres in how, how often, when and which instruments they used to assess QoL. Conclusion: A sizable proportion of the cancer wards, especially, and PC wards apparently does not routinely assess patients’ QoL, and we found wide variabilities between the cancer centres in how they do it. To promote routine assessment of patients’ QoL, we proposed several actions, such as addressing barriers to implementing patient-reported outcome measures through innovative e-Health platforms.

Physicians have been subject to increasing external control to improve their medical practice, and scholars have theorized extensively about their opposition to such control. However, little empirical attention has been paid to the views and reasoning that lie behind this opposition. An in-depth understanding is necessary for enhancing the effectiveness and efficiency of external controls, and continuous deep sedation until death (CDS) is an interesting case in this regard. This study aims to explore how physicians frame control measures for CDS. We conducted 47 semi-structured interviews with Belgian physicians in 2019. A qualitative framing analysis was performed to analyze their views and reasoning. This study reveals that physicians approach CDS practice and control measures with different emphases. Controlling by mechanisms of professional self-regulation and state governance are put forward as appropriate means to improve CDS practice. Policymakers should take into consideration physicians’ frames to develop sound control measures.

As previous research has paid little attention to environmental factors affecting the practice of continuous deep sedation until death (CDS), we aimed to explore these using physicians’ experiences and perceptions. We performed an interpretative thematic analysis of primary data from a qualitative interview study conducted from February to May 2019 in Belgium with 47 physicians. Structural factors were identified: the lack of professional and/or technical support in monitoring sedated patients; the use of guidelines in team contexts; the time constraints for treating individual patients and work pressure; the structural knowledge gap in medical education; the legal context for assisted dying; and the lack of a clear legal context for CDS. Cultural factors were identified: the moral reservations of care teams and/or institutions towards CDS; the presence of a palliative care culture within care teams and institutions; the culture of fear of making clinical errors regarding CDS among a group of physicians; the professional stigma of performing assisted dying among some of the physician population; the different understandings of CDS in medical and policy fields; and the societal taboo around suffering at the end of life and natural death. To conclude, improving CDS practice requires a whole-system approach considering environmental factors.

Background and Objectives While decision making about and performance of continuous sedation involve many challenges, they appear to be particularly pervasive in nursing homes. This study aims to identify barriers to the decision making and performance of continuous sedation until death in Flemish nursing homes as experienced by the health care professionals involved. Research Design and Methods Ten focus groups were held with 71 health care professionals including 16 palliative care physicians, 42 general practitioners, and 13 nursing home staff. Discussions were transcribed verbatim and analyzed using a constant comparative approach. Results Perceived barriers concerned factors prior to and during sedation and were classified according to three types: (a) personal barriers related to knowledge and skills including the lack of clarity on what continuous sedation should be used for (linguistic ambiguity) and when and how it should be used (practical ambiguity); (b) relational barriers concerning communication and collaboration both between health care professionals and with family; (c) organizational barriers related to the organization of care in nursing homes where, for example, there is no on-site physician, or where the recommended medication is not always available. Discussion and Implications The findings suggest there are considerable challenges for sound decision making about and performance of continuous sedation until death in nursing homes. There is a need for multicomponent initiatives that provide guidance in the context of the complexity of a resident’s medical situation, the family, and the specific organization of care, which would have the potential to facilitate and improve the decision-making process and performance of continuous sedation in nursing homes.

Context : There are few international studies about the continuous use of sedatives (CUS) in the last days of life. Objectives : We aim to describe the experiences and opinions regarding CUS of physicians caring for terminally ill patients in seven countries. Methods : Questionnaire study about practices and experiences with CUS in the last days of life among physicians caring for terminally ill patients in Belgium (N=175), Germany (N=546), Italy (N=214), Japan (N=513), the Netherlands (N=829), United Kingdom (N=114) and Singapore (N=21). Results : The overall response rate was 22%. Of the respondents, 88-99% reported that they had clinical experience of CUS in the last 12 months. More than 90% of respondents indicated that they mostly used midazolam for sedation. The use of sedatives to relieve suffering in the last days of life was considered acceptable in cases of physical suffering (87-99%). This percentage was lower but still substantial in cases of psycho-existential suffering in the absence of physical symptoms (45-88%). These percentages were lower when the prognosis was at least several weeks (22- 66% for physical suffering and 5-42% for psycho-existential suffering). Of the respondents, 10% or less agreed with the statement that CUS is unnecessary because suffering can be alleviated with other measures. A substantial proportion (41-95%) agreed with the statement that a competent patient with severe suffering has the right to demand the use of sedatives in the last days of life. Conclusion : Many respondents in our study considered CUS acceptable for the relief of physical and psycho-existential suffering in the last days of life. The acceptability was lower regarding CUS for psycho-existential suffering and regarding CUS for patients with a longer life expectancy. Funding : Ministry of Education, Culture, Sports, Science and Technology, Japan Key message : This questionnaire study among physicians caring for terminally ill patients showed that many considered the continuous use of sedatives acceptable to relieve physical and psycho-existential suffering in the last days of life. Respondents’ regarded the practice as less acceptable in patients with a longer life expectancy.

Objectives Challenges inherent in the practice of continuous palliative sedation until death appear to be particularly pervasive in nursing homes. We aimed to develop a protocol to improve the quality of the practice in Belgian nursing homes. Methods The development of the protocol was based on the Medical Research Council Framework and made use of the findings of a systematic review of existing improvement initiatives and focus groups with 71 health care professionals [palliative care physicians, general practitioners (GPs), and nursing home staff] identifying perceived barriers to the use of continuous palliative sedation until death in nursing homes. The protocol was then reviewed and refined by another 70 health care professionals (palliative care physicians, geriatricians, GPs, and nursing home staff) through 10 expert panels. Results The final protocol was signed off by expert panels after 2 consultation rounds in which the remaining issues were ironed out. The protocol encompassed 7 sequential steps and is primarily focused on clarification of the medical and social situation, communication with all care providers involved and with the resident and/or relatives, the organization of care, the actual performance of continuous sedation, and the supporting of relatives and care providers during and after the procedure. Although consistent with existing guidelines, our protocol describes more comprehensively recommendations about coordination and collaboration practices in nursing homes as well as specific matters such as how to communicate with fellow residents and give them the opportunity to say goodbye in some way to the person who is dying. Conclusions and Implications This study succeeded in developing a practice protocol for continuous palliative sedation until death adapted to the specific context of nursing homes. Before implementing it, future research should focus on developing profound implementation strategies and on thoroughly evaluating its effectiveness.

Background: Extensive debate surrounds the practice of continuous sedation until death within end-of-life care. Aim: To provide insight into existing initiatives to support the practice of continuous sedation until death and assess their feasibility and effectiveness. Design: Systematic review and narrative synthesis, registered on PROSPERO (CRD42020149630). Data sources: Records were searched through MEDLINE, EMBASE, CENTRAL, CINAHL, and Web of Science from inception to April 16 2020. Peer-reviewed studies reporting original data on initiatives to support the practice of continuous sedation were included for review. Results: Twenty-one studies met the criteria and were included. Initiatives were focused on assessment tools of consciousness and discomfort (9), the use of guidelines and protocols (8), and expert consultation (3). All initiatives were reported as useful, acceptable, and feasible. Studies on the use of monitoring devices showed that a small proportion of patients were found to be awake, despite the patient being unresponsive according to the observer-based sedation scales. However, the wide range of values of these monitoring devices for comfortable and adequately sedated patients seems to hamper its overall implementation in daily clinical practice. Physicians reported changes in practice conform to guideline recommendations but the shift was modest at best. Expert consultation was regarded as supportive when sufficient expertise is lacking and helpful in avoiding possibly unnecessary sedations. Conclusions: The reviewed initiatives may contribute to improvement of continuous sedation until death, though their evidence base is rather limited. More insight is needed into their feasibility, preconditions for effective implementation and impact in actual practice.

Supplemental material, sj-docx-1-pmj-10.1177_0269216321996990 for A systematic review of quality improvement initiatives for continuous sedation until death by Lenzo Robijn, Luc Deliens, Anne-Lore Scherrens, Nele S Pauwels, Peter Pype, Judith Rietjens and Kenneth Chambaere in Palliative Medicine

ObjectivesTo explore intercountry and intracountry differences in physician opinions about continuous use of sedatives (CUS), and factors associated with their approval of CUS.SettingsSecondary analysis of a questionnaire study.ParticipantsPalliative care physicians in Germany (N=273), Italy (N=198), Japan (N=334) and the UK (N=111).Primary and secondary outcome measuresPhysician approval for CUS in four situations, intention and treatment goal, how to use sedatives and beliefs about CUS.ResultsThere were no significant intercountry or intracountry differences in the degree of agreement with statements that (1) CUS is not necessary as suffering can always be relieved with other measures (mostly disagree); (2) intention of CUS is to alleviate suffering and (3) shortening the dying process is not intended. However, there were significant intercountry differences in agreement with statements that (1) CUS is acceptable for patients with longer survival or psychoexistential suffering; (2) decrease in consciousness is intended and (3) choice of neuroleptics or opioids. Acceptability of CUS for patients with longer survival or psychoexistential suffering and whether decrease in consciousness is intended also showed wide intracountry differences. Also, the proportion of physicians who agreed versus disagreed with the statement that CUS may not alleviate suffering adequately even in unresponsive patients, was approximately equal. Regression analyses revealed that both physician-related and country-related factors were independently associated with physicians’ approval of CUS.ConclusionVariations in use of sedatives is due to both physician- and country-related factors, but palliative care physicians consistently agree on the value of sedatives to aid symptom control. Future research should focus on (1) whether sedatives should be used in patients with longer survival or with primarily psychoexistential suffering, (2) understanding physicians’ intentions and treatment goals, (3) efficacy of different drugs and (4) understanding the actual experiences of patients receiving CUS.

Objectives Palliative sedation is a highly debated medical practice, particularly regarding its proper use in end-of-life care. Worldwide, guidelines are used to standardise care and regulate this practice. In this review, we identify and compare national/regional clinical practice guidelines on palliative sedation against the European Association for Palliative Care (EAPC) palliative sedation Framework and assess the developmental quality of these guidelines using the Appraisal Guideline Research and Evaluation (AGREE II) instrument. Methods Using the PRISMA criteria, we searched multiple databases (PubMed, CancerLit, CINAHL, Cochrane Library, NHS Evidence and Google Scholar) for relevant guidelines, and selected those written in English, Dutch and Italian; published between January 2000 and March 2016. Results Of 264 hits, 13 guidelines—Belgium, Canada (3), Ireland, Italy, Japan, the Netherlands, Norway, Spain, Europe, and USA (2) were selected. 8 contained at least 9/10 recommendations published in the EAPC Framework; 9 recommended ‘pre-emptive discussion of the potential role of sedation in end-of-life care’; 9 recommended ‘nutrition/hydration while performing sedation’ and 8 acknowledged the need to ‘care for the medical team’. There were striking differences in terminologies used and in life expectancy preceding the practice. Selected guidelines were conceptually similar, comparing closely to the EAPC Framework recommendations, albeit with notable variations. Conclusions Based on AGREE II, 3 guidelines achieved top scores and could therefore be recommended for use in this context. Also, domains ‘scope and purpose’ and ‘editorial independence’ ranked highest and lowest, respectively—underscoring the importance of good reportage at the developmental stage.

Background: Involving patients in decision-making is considered to be particularly appropriate towards the end of life. Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. Aim: To describe the decision-making process preceding continuous sedation until death with particular attention to the involvement of the person who is dying. Design: Qualitative case studies using interviews. Setting/participants: Interviews with 26 physicians, 30 nurses and 24 relatives caring for 24 patients with cancer who received continuous sedation until death in Belgium, the United Kingdom and the Netherlands. Results: We distinguished four stages of decision-making: initiation, information exchange, deliberation and the decision to start continuous sedation until death. There was wide variation in the role the patient had in the decision-making process. At one end of the spectrum (mostly in the United Kingdom), the physician discussed the possible use of sedation with the patient, but took the decision themselves. At the other end (mostly in Belgium and the Netherlands), the patient initiated the conversation and the physician’s role was largely limited to evaluating if and when the medical criteria were met. Conclusion: Decision-making about continuous sedation until death goes through four stages and the involvement of the patient in the decision-making varies. Acknowledging the potential sensitivity of raising the issue of end-of-life sedation, we recommend building into clinical practice regular opportunities to discuss the goals and preferences of the person who is dying for their future medical treatment and care.

Background: It is necessary to understand behaviours that contribute to improvement in the quality of end-of-life care; use of behavioural theories allows identification of factors underlying end-of-life care behaviour, but little is known about the extent to which, and in what manner, these theories are used in an end-of-life care research context. Aim: To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined. Design: We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009). Data sources: The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories. Results: We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies – 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative – for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning. Conclusion: In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.

Background Continuous deep sedation until death is a highly debated medical practice, particularly regarding its potential to hasten death and its proper use in end-of-life care. A thorough analysis of important trends in this practice is needed to identify potentially problematic developments. This study aims to examine trends in the prevalence and practice characteristics of continuous deep sedation until death in Flanders, Belgium between 2007 and 2013, and to study variation on physicians’ degree of palliative training. Methods Population-based death certificate study in 2007 and 2013 in Flanders, Belgium. Reporting physicians received questionnaires about medical practices preceding the patient’s death. Patient characteristics, clinical characteristics (drugs used, duration, artificial nutrition/hydration, intention and consent), and palliative care training of attending physician were recorded. We posed the following question regarding continuous deep sedation: ‘Was the patient continuously and deeply sedated or kept in a coma until death by the use of one or more drugs’. Results After the initial rise of continuous deep sedation to 14.5% in 2007 (95%CI 13.1%-15.9%), its use decreased to 12.0% in 2013 (95%CI 10.9%-13.2%). Compared with 2007, in 2013 opioids were less often used as sole drug and the decision to use continuous deep sedation was more often preceded by patient request. Compared to non-experts, palliative care experts more often used benzodiazepines and less often opioids, withheld artificial nutrition/hydration more often and performed sedation more often after a request from or with the consent of the patient or family. Conclusion Worldwide, this study is the first to show a decrease in the prevalence of continuous deep sedation. Despite positive changes in performance and decision-making towards more compliance with due care requirements, there is still room for improvement in the use of recommended drugs and in the involvement of patients and relatives in the decision-making process.

Objectives To describe the prevalence and characteristics of end-of-life decisions in individuals dying with dementia in Belgium. Design Retrospective mail survey. Setting Brussels and Flanders, Belgium. Participants Physicians certifying a large random sample of deaths (n = 8,627). Measurements End-of-life decision-making in individuals dying with dementia (n = 361) was compared through bivariate and multivariable analyses with decision-making in individuals dying from cancer (n = 1,276) as reference group. Results Response rate was 54.7%. The intense pain and symptoms of individuals with dementia was alleviated less often than those of individuals with cancer (odds ratio (OR) = 0.50, P

To the Editor: Patients nearing death often experience distressing symptoms that cannot be alleviated by conventional treatments. In these situations palliative sedation, i.e. the use of sedative drugs to relieve intolerable and refractory distress by reducing the patient’s consciousness, can be an option of last resort [1]. In their recent publication, Koper et al. [2] provided an important contribution to the palliative sedation literature uncovering a variety of arguments in favour of and against expert consultation before resorting to palliative sedation. Although consultation with specialist palliative care services can be regarded as supportive and helpful when physicians lack expertise, the authors found that Dutch physicians had both practical and theoretical objections against the European Association for Palliative Care (EAPC) recommendations on obligatory consultation [3]. We do not wish to dispute here whether expert consultation should be mandatory or not. Instead, we would like to focus on two aspects that we believe are underexposed in the study of Koper et al. and where some caution is required when interpreting results. First of all, a number of physicians in the study emphasised that palliative sedation, as opposed to euthanasia, is a normal medical treatment. The aim of palliative sedation is not to shorten life and therefore, societal control mechanisms like mandatory expert consultation were said to be redundant. Moreover, mandatory consultation might make palliative sedation look procedurally similar to euthanasia or at least morally equivalent to it [4]. However, palliative sedation is a broad concept that covers many forms of sedation which can range frommild sedation to the more controversial continuous deep sedation. Some commentators argue that continuous sedation undeniably can be a far-reaching procedure which may not only reduce the experience of suffering, but can completely remove a patient’s ability to have any experiences at all [5, 6], leading to the view that palliative sedation at the end of life is not always a normal end-of-life practice. Obviously, only grave, proportionate reasons can justify such a far-reaching intervention and palliative sedation should therefore always be used only as a ‘last’ resort option [7]. Recent data from the UK [8], The Netherlands [9] and Belgium [10], however, clearly show that the incidence of palliative sedation in all three countries is remarkably high and one might wonder whether frequencies up to 12.3 % (of all patients who died) in the Netherlands are compatible with a last resort option. Research from de Graeff [11] reveals that in 41 % (47 out of 113) of the cases where the palliative consultation team was consulted on palliative sedation, a negative advice was given, mostly due to the availability of alternative treatments. These results suggest that sedation may sometimes be performed unwarrantedly and may thus be questionable both on ethical grounds and in relation to the many guidelines, including the Royal Dutch Medical Association (RDMA) guideline [12]. In short, palliative sedation certainly cannot generally be labelled as an ordinary medical act and should be decided upon with the necessary caution. There is a need for revision of the concept of palliative sedation as normal medical practice [4]. Second, although Koper et al. suggests there is little support amongst Dutch physicians for the EAPC recommendations on L. Robijn (*) :K. Raus : L. Deliens : S. Sterckx :K. Chambaere End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Laarbeeklaan 103, 1090 Brussels, Belgium e-mail: Lenzo.Robijn@vub.ac.be

Medical end-of-life decisions, including physiciansisted death, are known to occur in several countries an der Heide et al., 2003). Preserving the quality of e patient’s remaining life and alleviating their suffering ve become important goals of end-of-life care and, in me instances, hastening death at the request of a patient ay be an acceptable outcome. Following the Netherlands, lgium became the second country worldwide in 2002 to alise euthanasia under strict conditions of careful actice (Deliens and van der Wal, 2003) and Luxembourg came the third country to do so in 2009. Euthanasia is e administration of lethal drugs at the explicit request of e patient. Regarding nurses’ involvement, the Belgian thanasia law stipulates that only physicians and not rses are allowed to perform euthanasia, and only after nsultation of the nursing team directly involved in the tient’s care. In contrast, in two similar population-based rveys conducted in Belgium in 1998 and in 2001 (Deliens al., 2000; Van der Heide et al., 2003) physicians ikingly reported that nurses were quite often involved administering lethal drugs, not only in euthanasia but o in administering such drugs without explicit patient quest. We repeated the survey allowing us to investigate w well physicians followed the stipulations of the euthanasia law and how often they involved nurses in physician-assisted dying (Bilsen et al., 2009). We conducted a death certificate study in Flanders, the Dutch-speaking part of Belgium, with about 55,000 deaths per year. We drew a 20% random sample of all deaths occurring between June 1st and November 30th in 2007, and mailed each of the 6927 certifying physicians an anonymous questionnaire about physician-assisted dying. Concerning nurses’ involvement in physician-assisted dying, we asked whether physicians had previously discussed the decision with a nurse, and whether a nurse had administered the lifeending drugs. Comparisons were only made with the 1998 study because the 2001 study fell in the midst of a very tumultuous period of political and public debate concerning legalisation of euthanasia in our country (Bilsen et al., 2009). Ethical approval for this study was received from the Ethical Review Boards of the Vrije Universiteit Brussel and Ghent University. Detailed information about the study methodology can be found elsewhere (Chambaere et al., 2008). The response rate was 58.4%. In Flanders 2007, euthanasia or physician-assisted suicide occurred in 0.2%, 1.7% and 4.2% of all deaths in respectively nursing homes, hospitals, and at home. The attending physician discussed this decision with nurses in all such cases in nursing homes, in 58.6% of cases in hospitals, and 44.4% of cases at home. A nurse administered the lethal drugs in none of the euthanasia cases in nursing homes, in 43.4% of cases in hospitals, and in 13.5% of cases at home. Administering lifeending drugs without the patient’s explicit request occurred in 1.0%, 2.4% and 1.4% of all deaths in respectively nursing homes, hospitals, and at home. In 62.5% of all these cases in nursing homes, in 41.9% of cases in hospitals and in 16.7% of cases at home this practice was discussed with nurses. A nurse administered the lethal drugs, nearly exclusively opioids (not in table), in respectively 25.0%, 61.4% and 27.3% of these cases. Physicians’ consultation rate of a nurse for R T I C L E I N F O

To the Editor Dr Siegel and colleagues1 commented on the recent approval of the Belgian Act on Euthanasia to allow euthanasia for chronically ill children. We would like to enrich this commentary with findings from research in the Netherlands, a country where the law, since 2002, allows euthanasia for patients who are at least 12 years old, provided that a number of specific criteria are met.

End-of-life sedation, though increasingly prevalent and widespread, remains a highly debated medical practice in the context of palliative medicine. This qualitative study aims to look more specifically at how health care workers justify their use of continuous sedation until death and which factors they report as playing a part in the decision-making process. In-depth interviews were held with 28 physicians and 22 nurses of 27 cancer patients in Belgium who had received continuous sedation until death in hospitals, palliative care units or at home. Our findings indicate that medical decision-making for continuous sedation is not only based on clinical indications but also related to morally complex issues such as the social context and the personal characteristics and preferences of individual patient and their relatives. The complex role of non-clinical factors in palliative sedation decision-making needs to be further studied to assess which medically or ethically relevant arguments are underlying daily clinical practice. Finally, our findings suggest that in some cases continuous sedation was resorted to as an alternative option at the end of life when euthanasia, a legally regulated option in Belgium, was no longer practically possible.

Recent organiseerde de onderzoeksgroep Zorg rond het Levenseinde (Vrije Universiteit Brussel & Universiteit Gent) twee congressen in het teken van ‘Palliatieve zorg als onderdeel van Public Health (of volksgezondheid)’ en ‘Informele zorgverlening in de palliatieve zorg in Vlaanderen’. In dit artikel formuleren we de belangrijkste bevindingen en aanbevelingen voor beleid en praktijk vanuit het perspectief van twee aanzienlijke verschuivingen die gaande zijn. Palliatieve zorg verandert van instellingsgebonden zorg naar meer gedifferentieerde zorg doorheen de samenleving, waarbij er een belangrijke rol is weggelegd voor het groeiende aandeel informele zorgverleners (mantelzorgers en vrijwilligers). Daarnaast is palliatieve zorg niet langer enkel en alleen aanbodgestuurde zorg maar steeds meer en vaker vraaggestuurd en patiëntgericht. Binnen deze verschuiving zijn mensen met palliatieve zorgnoden niet langer passieve ontvangers van zorg, maar geëmancipeerde zorgpartners die inspraak eisen en betrokken horen te worden bij zowel de zorgorganisatie alsook het onderzoek hieromtrent. Denk hierbij aan ‘zorgzame samenlevingen’, actieonderzoek en projecten met aandacht voor kwetsbare groepen. Vermaatschappelijking van de zorg moet gedreven worden door lokale gemeenschappen (inclusief buren, vrijwilligers en mantelzorgers), ondersteund door de professionele zorg door middel van inspraak en samenwerking, en met aandacht voor toegankelijkheid van de zorg.