BACKGROUND: The attention of healthcare professionals is directed mainly towards the recipients of care and often insufficiently towards family carers. However, an effective collaboration between professionals and family carers is vital to provide quality palliative and end-of-life care. Such collaboration is under-studied in a palliative care context.
AIM: This study aimed to investigate how family carers of people who live at home with a life-limiting chronic illness experience and perceive collaboration with different healthcare professionals in the last phase of life.
DESIGN: Face-to-face semi-structured interviews were conducted with the primary family carers of people with a life-limiting chronic illness. Interpretative phenomenological analysis was used to analyse the data.
SETTING/PARTICIPANTS: A heterogeneous sample of 30 family carers of people with cancer, heart failure or dementia was recruited through a variety of care providers and services, in order to reflect the heterogeneity of caregiving in serious illness.
RESULTS: Five main themes emerged from interpretative phenomenological analysis that describe the quality of the collaboration between family carers and professionals: respecting family carers both as someone with care needs and as a member of the care team; the continuous availability and accessibility of healthcare professionals; the provision of information and communication including family carer issues; the coordination of care between all parties and contextual factors. The dominant experience by family carers was one of missed opportunities across these themes.
CONCLUSIONS: This qualitative study about the experiences and perceptions of family carers of people with a chronic life-limiting illness living at home regarding the collaboration with different healthcare providers in the last phase life, showed that family carers experience a lot of possibilities, but perceive missed opportunities as well, for healthcare professionals to effectively collaborate with them for palliative care.
OBJECTIVES: Advance care planning in young-onset dementia largely remains a blind spot within current literature. This study aimed to explore the engagement in and the conceptualization of advance care planning from the perspective of family caregivers of persons with young-onset dementia and to identify potential similarities and differences in this area between American and Belgian persons with young-onset dementia and their family caregivers.
DESIGN: An exploratory qualitative study.
SETTING AND PARTICIPANTS: We purposively sampled adult family caregivers of persons with young-onset dementia; our respondents were 13 American and 15 Belgian caregivers with varying familial relationships to the patient.
METHODS: We conducted 28 semi-structured interviews, using the same interview guide for American and Belgian respondents. Verbatim transcripts were analysed through the method of constant comparative analysis.
RESULTS: Important similarities between American and Belgian respondents were restricted knowledge of advance care planning, limited communication about advance directives, and their recommendation for professionals to timely initiate advance care planning. Major differences were attention paid to those end-of-life decisions depicted in the legislature of their respective countries, American caregivers placed higher emphasis on financial planning than their Belgian peers, and, in the case of consulting professionals for advance directives, American caregivers turned to lawyers, whereas Belgian caregivers relied on physicians.
CONCLUSIONS AND IMPLICATIONS: Specific nuances and challenges in terms of advance care planning in young-onset dementia arise from a particular societal and legal context on the one hand, and from patients' and caregivers' younger age on the other. Professionals' awareness of and responsiveness to these specificities could facilitate the advance care planning process. Based on our interpretation of results, several recommendations for practice and policy are made.
Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent.
Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers' preferences for how to ideally engage in the process with patients, family and professionals.
Design: A qualitative study was conducted: we analysed semi-structured interviews (n = 15) through the method of constant comparative analysis.
Setting/participants: We included Flemish family caregivers of persons with young-onset dementia.
Results: Plans for the future typically concerned non-medical affairs. Participants' limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients' cognitive competence. However, endorsement for advance care planning showed from respondent' preferences that it should be initiated timely, by a third party, and emphasize patients' remaining capacities. Finally, the need for information and high-quality care emerged.
onclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.
OBJECTIVES: To evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased.
METHODS: A cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers. Flemish family carers of people who had made use of specialised palliative care services at home or in hospital were contacted.
RESULTS: Of all primary family carers (response rate of 53.5% resulting in n=1504), 77.7% indicated they were asked frequently by professionals how they were feeling. Around 75% indicated they had been informed about specific end-of-life topics and around 90% felt sufficiently supported before and immediately after the death. Family carers of people who had died in a palliative care unit, compared with other types of specialised palliative care services, indicated having received more information, support and aftercare.
CONCLUSIONS: Family carers evaluate the professional assistance provided more positively when death occurred in a palliative care unit. Policy changes might be needed to reach the same level of care across all specialised palliative care services.
OBJECTIVES: Recent studies have shown that the early provision of palliative care (PC) integrated into oncology in the hospital has beneficial effects on the quality of life of people who are dying and their family caregivers. However, a model to integrate palliative home care (PHC) early in oncology care is lacking. Therefore, our aim is to develop the Early Palliative Home care Embedded in Cancer Treatment (EPHECT) intervention.
METHODS: We conducted a phase 0-1 study according to the Medical Research Council framework. Phase 0 consisted of a literature search on existing models for early integrated PC, and focus groups with PHC teams to investigate experiences with being introduced earlier. In phase 1, we developed a complex intervention to support the early integration of PHC in oncology care, based on the results of phase 0. The intervention components were reviewed and refined by professional caregivers and stakeholders.
RESULTS: Phase 0 resulted in components underpinning existing interventions. Based on this information, we developed an intervention in phase 1 consisting of: (1) information sessions for involved professionals, (2) general practitioner as coordinator of care, (3) regular and tailored home consultations by the PHC team, (4) a semistructured conversation guide to facilitate consultations, and (5) interprofessional and transmural collaboration.
CONCLUSION: Taking into account the experiences of the PHC teams with being involved earlier and the components underpinning successful interventions, the EPHECT intervention for the home setting was developed. The feasibility and acceptability of the intervention will be tested in a phase II study.
OBJECTIVES: Palliative care is still often involved late in the disease trajectory. Recently, some studies have explored the barriers to early integration of PC in the hospital setting. Because palliative care home care (PHC) is organised differently compared with PC in a hospital setting, the identification of barriers to the early integration of PHC is needed.
METHODS: Six focus groups were held with PHC teams in Flanders, Belgium. Discussions were transcribed verbatim and analysed using constant comparative analysis.
RESULTS: Our findings confirm many barriers found in previous studies, such as the lack of financial resources and the perception of PC as terminal care. Oncologists' lack of knowledge about the content and role of PC is also confirmed. Furthermore, professional caregivers working in the home context are lacking information on oncology therapies necessary to provide optimal PC. A barrier for the home context is the discontinuity of care, as a result of a lack of communicational structure and a lack of central coordination.
CONCLUSION: The results contribute to a better understanding of the factors hindering the provision of PHC alongside oncology care. For the home context, transmural discontinuity of care seems to be an important additional barrier.
BACKGROUND: To date, no randomised controlled trials on the integration of specialised palliative home care into oncology care have been identified. Information on whether existing models of integrated care are applicable to the home care system and how working procedures and skills of the palliative care teams might require adaptation is missing.
AIM: To gain insight into differences between early and late involvement and the effect on existing working procedures and skills as perceived by palliative home care teams.
DESIGN: Qualitative study - focus group interviews.
SETTING/PARTICIPANTS: Six palliative home care teams in Flanders, Belgium. Participants included physicians, nurses and psychologists.
RESULTS: Differences were found concerning (1) reasons for initiation, (2) planning of care process, (3) focus on future goals versus problems, (4) opportunity to provide holistic care, (5) empowerment of patients and (6) empowerment of professional caregivers. A shift from a medical approach to a more holistic approach is the most noticeable. Being involved earlier also results in a more structured follow-up and in empowering the patient to be part of the decision-making process. Early involvement creates the need for transmural collaboration, which leads to the teams taking on more supporting and coordinating tasks.
DISCUSSION: Being involved earlier leads to different tasks and working procedures and to the need for transmural collaboration. Future research might focus on the development of an intervention model for the early integration of palliative home care into oncology care. To develop this model, components of existing models might need to be adapted or extended.
Objective: Deaths from chronic illness are often preceded by a potentially life-shortening end-of-life decision (ELD). Involving family in these ELDs may have psychosocial benefits for them and the dying person. This study aims to examine how often ELDs are discussed with relatives of the dying person and which characteristics determine their involvement in those ELDs.
Methods: A questionnaire survey was conducted in 2013 among physicians attending a large, stratified and representative sample of deaths (n = 6188) in Flanders.
Results: In 72.3% of ELDs preceding death, family of the dying person were involved.
Discussion: of an ELD with family members was more likely when the decision was also discussed with the dying person, the ELD was made with the explicit intention to shorten life, specialized palliative care was provided or death occurred in an ICU.
Conclusions: Involving family in end-of-life decision making appears to be related to the type of formal care services involved, communication with the dying person and the motives behind the decision.
Practice implications: Our findings suggest a need to further expand a palliative care approach with a focus on both the dying person and their family within and across a variety of health care services.
Background: Research about advance care planning (ACP) has often targeted those with serious illness and limited prognosis, thereby not addressing the preferences of healthy adults or adults with a stable condition.
Aims: (i) To describe to what extent patients aged 50 and older who are relatively stable or in good health are thinking about the end of life (EOL) and willing to discuss this with their family physician (FP) and (ii) to explore whether patients and FPs indicate the same topics as triggers for ACP discussions in family practice.
Methods: A cross-sectional study was conducted in a diverse sample of 289 patients aged =50 years in family practice in Flanders, Belgium. Subsequently, semi-structured interviews were conducted with patients (n = 5) and FPs (n = 5) to explore their preferences and views on ACP in family practice.
Results: The majority (69.8%) of patients had thought about the EOL and would appreciate it if their FP would initiate a conversation about this (75.9%). The qualitative interviews revealed that when thinking about the EOL, a number of themes captured the thoughts of people according to both patients and FPs: (i) becoming care dependent, (ii) physical and mental deterioration, (iii) dying alone and (iv) having paperwork in order. However, on the basis of patients' ideas and FPs' experiences in practice, a difference was noticed between them when it comes to identifying the themes as triggers for initiating ACP discussions.
Conclusion: Although patients are willing to discuss the EOL with their FPs, patients and FPs identified different themes as triggers to initiate discussions about the EOL. The variation in triggers could lead to missed opportunities to engage in ACP in a timely manner.
BACKGROUND: Patients with dementia form an increasing proportion of those entering hospice care. Little is known about the types of hospices serving patients with dementia and the patterns of hospice use, including timing of hospice disenrollment between patients with and without dementia.
OBJECTIVES: To characterize the hospices that serve patients with dementia, to compare patterns of hospice disenrollment for patients with dementia and without dementia, and to evaluate patient-level and hospice-level characteristics associated with hospice disenrollment.
METHODS: We used data from a longitudinal cohort study (2008-2011) of Medicare beneficiaries (n = 149,814) newly enrolled in a national random sample of hospices (n = 577) from the National Hospice Survey and followed until death (84% response rate).
RESULTS: A total of 7328 patients (4.9%) had a primary diagnosis of dementia. Hospices caring for patients with dementia were more likely to be for-profit, larger sized, provide care for more than 5 years, and serve a large (>30%) percentage of nursing home patients. Patients with dementia were less likely to disenroll from hospice in conjunction with an acute hospitalization or emergency department visit and more likely to disenroll from hospice after long enrollment periods (more than 165 days) as compared with patients without dementia. No significant difference was found between patients with and without dementia for disenrollment after shorter enrollment periods (less than 165 days). In the multivariable analyses, patients were more likely to be disenrolled after 165 days if they were served by smaller hospices and hospices that served a small percentage of nursing home patients.
CONCLUSION: Patients with dementia are significantly more likely to be disenrolled from hospice following a long enrollment period compared with patients without dementia. As the number of individuals with dementia choosing hospice care continues to grow, it is critical to address potential barriers to the provision of quality palliative care for this population near the end of life.