BACKGROUND: Valuable information for planning future end-of-life care (EOLC) services and care facilities can be gained by studying trends in place of death (POD). Scarce data exist on the POD in small developing countries. This study aims to examine shifts in the POD of all persons dying between 1999 and 2010 in Trinidad and Tobago, to draw conclusions about changes in the distribution of POD over time and the possible implications for EOLC practice and policy.
METHODS: A population-level analysis of routinely collected death certificate data of the most recent available fully coded years at the time of the study-1999 to 2010. Observed proportions for the POD of all deaths were standardised according to the age, sex and cause of death distribution in 1999. Trends for a subgroup of persons who died from causes indicative of a palliative care (PC) need were also examined.
RESULTS: The proportion of deaths in government hospitals increased from 48.9% to 55.4% and decreased from 38.7% to 29.7% at private homes. There was little variation between observed and standardised rates. The decrease in home deaths was stronger when the PC subcategory was considered, most notably from cancer.
CONCLUSION: Internationally, the proportion of deaths at institutions is increasing. A national strategy on palliative and EOLC is needed to facilitate the increasing number of people who seek EOLC at government hospitals in Trinidad and Tobago, including an investigation into the reasons for the trend. Alternatives to accommodate out-of-hospital deaths can be considered.
Currently,Swiss Medical Weekly boasts a highly interesting and time-relevant contribution of Hug and colleagues, titled “Medical end-of-life decisions in the oldest old in Switzerland” which examines the differences between the oldest old and younger patients in terms of the frequency of various end-of-life decisions such as intensified alleviation of pain and other symptoms and, most notably, withholding and withdrawing life-sustaining treatments.
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BACKGROUND: COPD patients often use many medical resources, such as hospital admissions and medical imaging, inappropriately close to death. Palliative home care (PHC) could beneficially affect his.
AIM: To study the effect of use and timing of PHC on medical resource use and costs in the last 30 }days before death (DBD) for COPD.
METHODS: Retrospective study of all Belgian decedents in 2010-2015 with COPD and a primary cause of death being COPD or cardiovascular diseases. Odds ratios (OR) for medical resources were calculated between using and four PHC timing categories (>360; 360-181; 180-91; 90-31 DBD) versus not using. Confounders were socio-demographic, care intensity and disease severity variables.
RESULTS: Of the 58 527 decedents with COPD, 644 patients (1.1%) received PHC earlier than 30 DBD. Using PHC (versus not using) decreased the OR for hospitalisation (0.35), intensive care unit admission (0.16), specialist contacts (0.58), invasive ventilation (IV) (0.13), medical imaging including chest radiograph (0.34), sedatives (0.48) and hospital death (0.14). It increased the OR for home care (3.27), general practitioner contact (4.65), palliative care unit admission (2.61), non-IV (2.65), gastric tube (2.15), oxygen (2.22) and opioids (4.04) (p<0.001). Mean total healthcare costs were €1569 lower for using PHC. All PHC timing categories showed a benefit in medical resource use and costs. However, we observed the largest benefit in the category PHC 90-31 DBD.
CONCLUSION: Health policy and services should focus on increasing PHC access, while research should further explore early PHC initiation for COPD. Funding SBO IWT nr. 140009.
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.
BACKGROUND: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking.
AIM: To evaluate perceived psychological support in relation to end-of-life decisions of neonatologists and nurses working in Flemish neonatal intensive care units and to analyse whether or not this support is sufficient.
DESIGN/PARTICIPANTS: A self-administered questionnaire was sent to all neonatologists and neonatal nurses of all eight Flemish neonatal intensive care units (Belgium) in May 2017. The response rate was 63% (52/83) for neonatologists and 46% (250/527) for nurses. Respondents indicated their level of agreement (5-point Likert-type scale) with seven statements regarding psychological support.
RESULTS: About 70% of neonatologists and nurses reported experiencing more stress than normal when confronted with an end-of-life decision; 86% of neonatologists feel supported by their colleagues when they make end-of-life decisions, 45% of nurses feel that the treating physician listens to their opinion when end-of-life decisions are made. About 60% of both neonatologists and nurses would like more psychological support offered by their department when confronted with end-of-life decisions, and 41% of neonatologists and 50% of nurses stated they did not have enough psychological support from their department when a patient died. Demographic groups did not differ in terms of perceived lack of sufficient support.
CONCLUSION: Even though neonatal intensive care unit colleagues generally support each other in difficult end-of-life decisions, the psychological support provided by their department is currently not sufficient. Professional ad hoc counselling or standard debriefings could substantially improve this perceived lack of support.
CONTEXT: Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating recommendations to aid future practice.
OBJECTIVES: This study aimed to identify barriers to and facilitators of the end-of-life decision-making process as perceived by neonatologists and nurses.
METHODS: We conducted semi-structured face-to-face interviews with 15 neonatologists and 15 neonatal nurses, recruited through four neonatal intensive care units in Flanders, Belgium. They were asked what factors had facilitated and complicated previous end-of-life decision-making processes. Two researchers independently analysed the data, using thematic content analysis to extract and summarize barriers and facilitators.
RESULTS: Barriers and facilitators were found at three distinct levels: the case-specific context (e.g. uncertainty of the diagnosis and specific characteristics of the child, the parents and the healthcare providers which make decision-making more difficult), the decision-making process (e.g. multidisciplinary consultations and advance care planning (ACP) which make decision-making easier), and the overarching structure (e.g. lack of privacy and complex legislation making decision-making more challenging).
CONCLUSIONS: Barriers and facilitators found in this study can lead to recommendations, some simpler to implement than others, to aid the complex end-of-life decision making process. Recommendations include establishing regular multidisciplinary meetings to include all healthcare providers and reduce unnecessary uncertainty, routinely implementing ACP in severely ill neonates to make important decisions beforehand, creating privacy for bad-news conversations with parents and reviewing the complex legal framework of perinatal end-of-life decision-making.
BACKGROUND: While early-integrated palliative home care (PHC) is believed to be beneficial for COPD patients, trials testing this hypothesis are rare and show inconclusive results.
AIM: To test feasibility, acceptability and preliminary effectiveness of early-integrated PHC for end-stage COPD.
METHOD: Testing a six-month early-integrated PHC pilot RCT given by PHC nurses for end-stage COPD with five components: (1) pre-inclusion COPD support training for PHC nurses; (2) monthly PHC visits; (3) leaflets on coping mechanisms; (4) a protocol on symptom management and support, a care and action plan; (5) integration of PHC and usual care through reporting and communication mechanisms. Patient-reported outcomes were assessed six-weekly. Participants and healthcare professionals involved were interviewed.
RESULTS: Of 70 eligible patients, 39 (56%) participated (20:19 intervention-control) and 64% completed the trial. A patient received on average 3.4 PHC visits, mainly for disease insight, symptom management and care planning. Nurses distributed all reports but hardly connected with health professionals except general practitioners (GPs); 8/10 interviewed patients referred to the psychosocial support, breathing exercises and care decisions as helpful. Some GPs criticised PHC being given too early but pulmonologists and PHC nurses did not. Effectiveness analysis showed no overall intervention effect for the outcomes, but between baseline and week 24 fewer hospitalisations in the control group (p=0.03) and a trend of higher perceived quality of care in the intervention group (p=0.06) was found. A clinically relevant difference was observed at week 24 for health-related quality of life in favour of the control group.
CONCLUSION: Our intervention on early-integrated PHC for end-stage COPD is feasible and accepted but did not yield the anticipated preliminary effectiveness. Before moving to a Phase III-trial, enhanced coordination of care, more GP involvement, more intensive training for PHC nurses in COPD support and revision of the trial design, e.g. of targeted outcomes in line with individual patient goals and care preferences should be improved.
OBJECTIVES: To describe and compare euthanasia and physician-assisted suicide (EAS) practice in Flanders, Belgium (BE), the Netherlands (NL) and Switzerland (CH).
METHODS: Mortality follow-back surveys among attending physicians of a random sample of death certificates.
RESULTS: We studied 349 EAS deaths in BE (4.6% of all deaths), 851 in NL (4.6% of all deaths) and 65 in CH (1.4% of all deaths). People who died by EAS were mostly aged 65 or older (BE: 81%, NL: 77% and CH: 71%) and were mostly diagnosed with cancer (BE: 57% and NL: 66%). Home was the most common place of death in NL (79%), while in BE and CH, more variation was found regarding to place of death. The decision to perform EAS was more frequently discussed with a colleague physician in BE (93%) and NL (90%) than in CH (60%).
CONCLUSIONS: EAS practice characteristics vary considerably in the studied countries with legal EAS. In addition to the legal context, cultural factors as well as the manner in which legislation is implemented play a role in how EAS legislation translates into practice.
BACKGROUND: Medical Assistance in Dying, also known as euthanasia or assisted suicide, is expanding internationally. Canada is the first country to permit Nurse Practitioners to provide euthanasia. These developments highlight the need for nurses to reflect upon the moral and ethical issues that euthanasia presents for nursing practice.
PURPOSE: The purpose of this article is to provide a narrative review of the ethical arguments surrounding euthanasia in relationship to nursing practice.
METHODS: Systematic search and narrative review. Nine electronic databases were searched using vocabulary developed from a stage 1 search of Medline and CINAHL. Articles that analysed a focused ethical question related to euthanasia in the context of nursing practice were included. Articles were synthesized to provide an overview of the literature of nursing ethics and euthanasia.
ETHICAL CONSIDERATIONS: This review was conducted as per established scientific guidelines. We have tried to be fair and respectful to the authors discussed.
FINDINGS: Forty-three articles were identified and arranged inductively into four themes: arguments from the nature of nursing; arguments from ethical principles, concepts and theories; arguments for moral consistency; and arguments from the nature of the social good. Key considerations included nursing's moral ontology, the nurse-patient relationship, potential impact on the profession, ethical principles and theories, moral culpability for acts versus omissions, the role of intention and the nature of the society in which euthanasia would be enacted. In many cases, the same assumptions, values, principles and theories were used to argue both for and against euthanasia.
DISCUSSION: The review identified a relative paucity of literature in light of the expansion of euthanasia internationally. However, the literature provided a fulsome range of positions for nurses to consider as they reflect on their own participation in euthanasia. Many of the arguments reviewed were not nursing-specific, but rather are relevant across healthcare disciplines. Arguments explicitly grounded within the nature of nursing and nurse-patient relationships warrant further exploration.
Context: Governments intend to meet resource constraints in professional palliative care by stimulating informal care, including volunteerism. However, little is known about current volunteer-professional collaboration. Such insights are relevant for future policy development regarding volunteer efficiency, quality of care and the capacity of volunteer care to support healthcare services and professionals.
Objectives: To explore what constitutes volunteer-professional collaboration around palliative care.
Methods: A qualitative study was conducted using semi-structured focus groups with volunteers, nurses, psychologists and family physicians and semi-structured interviews with people with serious illnesses and with family carers. Participants were recruited from hospital, home-care, day-care and live-in services in Flanders, Belgium. Interviews and focus groups were audio-recorded, transcribed verbatim and analysed employing a phenomenological approach. Two researchers coded independently in NVIVO 11 and reached a definitive coding scheme by comparing their resulting conceptual schemes.
Results: Seventy-nine people participated in the study. Volunteers collaborate mostly with nurses, less with psychologists but not with physicians. Volunteer-professional collaboration entails mutual information-sharing regarding patient conditions and coordination of care provision, while nurses and psychologists provide emotional and functional support for volunteers. Lack of access to nurses, of leadership and of patient-information sharing guidelines were the most prominent barriers to collaboration.
Conclusion: Volunteers are in the front line of palliative care provision and therefore collaborate intensely with nurses, particularly in dedicated palliative care services. However, collaboration with other professionals is limited. The presence and availability of nurses was found to be crucial for volunteers, both for support and to achieve integration through collaboration.
Background: Since Belgium legalised euthanasia, the number of performed euthanasia cases for psychological suffering in psychiatric patients has significantly increased, as well as the number of media reports on controversial cases. This has prompted several healthcare organisations and committees to develop policies on the management of these requests.
Method: Five recent initiatives that offer guidance on euthanasia requests by psychiatric patients in Flanders were analysed: the protocol of Ghent University Hospital and advisory texts of the Flemish Federation of Psychiatry, the Brothers of Charity, the Belgian Advisory Committee on Bioethics, and Zorgnet-Icuro. These were examined via critical point-by-point reflection, focusing on all legal due care criteria in order to identify: 1) proposed measures to operationalise the evaluation of the legal criteria; 2) suggestions of additional safeguards going beyond these criteria; and 3) remaining fields of tension.
Results: The initiatives are well in keeping with the legal requirements but are often more stringent. Additional safeguards that are formulated include the need for at least two positive advices from at least two psychiatrists; an a priori evaluation system; and a two-track approach, focusing simultaneously on the assessment of the patient's euthanasia request and on that person's continuing treatment. Although the initiatives are similar in intent, some differences in approach were found, reflecting different ethical stances towards euthanasia and an emphasis on practical clinical assessment versus broad ethical reflection.
Conclusions: All initiatives offer useful guidance for the management of euthanasia requests by psychiatric patients. By providing information on, and proper operationalisations of, the legal due care criteria, these initiatives are important instruments to prevent potential abuses. Apart from the additional safeguards suggested, the importance of a decision-making policy that includes many actors (e.g. the patient's relatives and other care providers) and of good aftercare for the bereaved are rightly stressed. Shortcomings of the initiatives relate to the aftercare of patients whose euthanasia request is rejected, and to uncertainty regarding the way in which attending physicians should manage negative or conflicting advices, or patients' suicide threats in case of refusal. Given the scarcity of data on how thoroughly and uniformly requests are handled in practice, it is unclear to what extent the recommendations made in these guidelines are currently being implemented.
.Objectives: Low/middle-income countries, particularly Small Island Developing States, face many challenges including providing good palliative care and choice in place of care and death, but evidence of the circumstances of dying to inform policy is often lacking. This study explores where people die in Trinidad and Tobago and examines and describes the factors associated with place of death.
Methods: A population-level analysis of routinely collected death certificate and supplementary health data where the unit of analysis was the recorded death. We followed the Reporting of Studies Conducted Using Observational Routinely Collected Health Data reporting guidelines, an extension of Strengthening the Reporting of Observational Studies in Epidemiology, on a deidentified data set on decedents (n=10 221) extracted from International Statistical Classification of Diseases version 10 coded death records for the most recent available year, 2010.
Results: Of all deaths, 55.4% occurred in a government hospital and 29.7% in a private home; 65.3% occurred in people aged 60 years and older. Cardiovascular disease (23.6%), malignancies (15.5%) and diabetes mellitus (14.7%) accounted for over half of all deaths. Dying at home becomes more likely with increasing age (70–89 years (OR 1.91, 95% CI 1.73 to 2.10) and 90–highest (OR 3.63, 95% CI 3.08 to 4.27)), and less likely for people with malignancies (OR 0.85, 95% CI 0.74 to 0.97), cerebrovascular disease (OR 0.61, 95% CI 0.51 to 0.72) and respiratory disease (OR 0.74, 95% CI 0.59 to 0.91).
Conclusion: Place of death is influenced by age, sex, race/ethnicity, underlying cause of death and urbanisation. There is inequality between ethnic groups regarding place of care and death; availability, affordability and access to end-of-life care in different settings require attention.
BACKGROUND: Referral to specialized palliative care services (SPCS) occurs often late in the illness trajectory but may differ across cancer types. We examined differences between cancer types in the use and timing of referral to specialized palliative care services (SPCS) and in the reasons for non-referral.
METHODS: We conducted a population-based mortality follow-back survey among physicians who certified a representative sample of deaths in Flanders, Belgium. We focused only on sampled death cases of cancer (n = 2392). The questionnaire asked about the use of the existing types of SPCS and the timing of referral to these services.
RESULTS: Response rate was 58% (1394/2392). Patients who died from breast, respiratory, head and neck, genitourinary or gastrointestinal cancer had higher chances of using SPCS compared to hematologic cancer patients. The most prevalent reason for non-referral was that regular care sufficiently addressed palliative and supportive care needs (51%). This differed significantly between cancer types ranging from 77,8% for breast cancer and 42.1% for hematologic cancer. A second prevalent reason for not using SPCS was that it was not meaningful (enough) (23.9%), particularly for hematologic malignancies (35,1%) and only in 5.3% for breast cancer.
CONCLUSION: Differences in referral across different types of cancer were found. Referral is more often delayed or not initiated for patients with hematologic cancer, possibly due to differences in illness trajectory. An influencing reason is that physicians perceive palliative care as not meaningful or not meaningful enough for these patients which may be linked to the uncertainty in the disease trajectory of hematologic malignancies.
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.
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.
BACKGROUND: Research suggests that palliative home care should be integrated early into standard care for end-stage COPD patients. Patients also express the wish to be cared for and to die at home. However, a practice model for early integration of palliative home care (PHC) into standard care for end-stage COPD has not been fully developed.
AIM: To develop an intervention for early integration of PHC into standard care for end-stage COPD patients.
METHODS: We conducted a Phase 0-I study according to the Medical Research Council Framework for the development of complex interventions. Phase 0 aimed to identify the inclusion criteria and key components of the intervention by way of an explorative literature search of interventions, expert consultations, and seven focus groups with general practitioners and community nurses on perceived barriers to and facilitators of early integrated PHC for COPD. In Phase 1, the intervention, its inclusion criteria and its components were developed and further refined by an expert panel and two expert opinions.
RESULTS: Phase 0 resulted in identification of inclusion criteria and components from existing interventions, and barriers to and facilitators of early integration of PHC for end-stage COPD. Based on these findings, a nurse-led intervention was developed in Phase I consisting of training for PHC nurses in symptom recognition and physical therapy exercises for end-stage COPD, regular visits by PHC nurses at the patients' homes, two information leaflets on self-management, a semi-structured protocol and follow-up plan to record the outcomes of the home visits, and integration of care by enabling collaboration and communication between home and hospital-based professional caregivers.
CONCLUSION: This Phase 0-I trial succeeded in developing a complex intervention for early integration of PHC for end-stage COPD. The use of three methods in Phase 0 gave reliable data on which to base inclusion criteria and components of the intervention. The preliminary effectiveness, feasibility and acceptability of the intervention will be subsequently tested in a Phase II study.
CONTEXT: According to guideline recommendations, barbiturates and neuromuscular relaxants are the recommended drugs for euthanasia.
OBJECTIVES: To describe changes over time in drugs used to perform euthanasia and differences in case characteristics according to the drugs used.
METHODS: Repeated population-based mortality follow-back study among physicians attending a large representative sample of deaths in 1998, 2007 and 2013 in Flanders, Belgium.
RESULTS: In 1998 we identified 25 euthanasia cases (1.2% of all deaths), 142 cases in 2007 (2.0% of all deaths), and 349 cases in 2013 (4.6% of all deaths). Use of recommended drugs to perform euthanasia increased from 11.9% of euthanasia cases in 1998 to 55.3% in 2007 and 66.8% in 2013 (P<.001). In 2013, cases with recommended drugs compared to non-recommended drugs more often involved requests expressed both orally and in writing (86.8%/14.1%, P<.001), consultation with colleague physicians (93.8%/69.1%, P<.001), and administration in the presence of another physician (98.3%/54.3%, P<.001), and were more often self-labelled by physicians as euthanasia (95.5%/0.9%, P<.001) and reported to the euthanasia review committee (92.3%/3.8%, P<.001). Between 2007 and 2013, physicians consistently labelled cases in which non-recommended drugs were used as palliative sedation (72.8%/78.4%, P=.791) or alleviation of pain and symptoms (13.2%/15.0%, P>.999).
CONCLUSION: Physicians in Flanders are increasingly using the recommended drugs for euthanasia. This suggests that guidelines and training regarding the conduct and pharmacological aspects of euthanasia have had important effects on the practice of euthanasia. However, the declining but persisting use of non-recommended drugs requires further attention. Guidelines and training regarding the conduct and pharmacological aspects of euthanasia may have had important effects on the practice of euthanasia. The declining but persisting use of non-recommended drugs requires further attention.
BACKGROUND: The death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the foetal-infantile period (> 22 weeks of gestation – 1 year) including both neonates and stillborns, are non-existent. However, important information is missed when decisions made before birth are overlooked. Our study protocol addresses this knowledge gap.
METHODS: First, a new and encompassing framework was constructed to conceptualise ELDs in the foetal-infantile period. Next, a population mortality follow-back survey in Flanders (Belgium) was set up with physicians who certified all death certificates of stillbirths from 22 weeks of gestation onwards, and infants under the age of a year. Two largely similar questionnaires (stillbirths and neonates) were developed, pilot tested and validated, both including questions on ELDs and their preceding decision-making processes. Each death requires a postal questionnaire to be sent to the certifying physician. Anonymity of the child, parents and physician is ensured by a rigorous mailing procedure involving a lawyer as intermediary between death certificate authorities, physicians and researchers. Approval by medical societies, ethics and privacy commissions has been obtained.
DISCUSSION: This research protocol is the first to study ELDs over the entire foetal-infantile period on a population level. Based on representative samples of deaths and stillbirths and applying a trustworthy anonymity procedure, the research protocol can be used in other countries, irrespective of legal frameworks around perinatal end-of-life decision-making.
Early integration of palliative home care (PHC) might positively affect people with chronic obstructive pulmonary disease (COPD). However, PHC as a holistic approach is not well integrated in clinical practice at the end-stage COPD. General practitioners (GPs) and community nurses (CNs) are highly involved in primary and home care and could provide valuable perspectives about barriers to and facilitators for early integrated PHC in end-stage COPD. Three focus groups were organised with GPs (n = 28) and four with CNs (n = 28), transcribed verbatim and comparatively analysed. Barriers were related to the unpredictability of COPD, a lack of disease insight and resistance towards care of the patient, lack of cooperation and experience with PHC for professional caregivers, lack of education about early integrated PHC, insufficient continuity of care from hospital to home, and lack of communication about PHC between professional caregivers and with end-stage COPD patients. Facilitators were the use of trigger moments for early integrating PHC, such as after a hospital admission or when an end-stage COPD patient becomes oxygen-dependent or housebound, positive attitudes towards PHC in informal caregivers, more focus on early integration of PHC in professional caregivers’ education, implementing advance care planning in healthcare and PHC systems, and enhancing communication about care and PHC. The results provide insights for clinical practice and the development of key components for successful practice in a phase 0–2 Early Integration of PHC for end-stage COPD (EPIC) trial, such as improving care integration, patients’ disease insight and training PHC nurses in care for end-stage COPD.
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.