This dissertation provided population-based insights in the use and timing of palliative home care for end-stage COPD in Belgium and tested the applicability of a model of early-integrated palliative home care for end-stage COPD in the Flemish health care setting.
[Extrait résumé éditeur]
The present doctoral thesis focuses on evaluating the use, trends in use, factors that influence use, and the impact of using policy measures to support patients and informal caregivers to provide palliative care in the home or community setting in Belgium. Using full-population administrative databases containing information on all decedents in Belgium between 2010 and 2015, we provided insights into these patterns that allow formulating points of improvement, identification of focal groups for policy, but also allow evaluating the societal impact of the measures in tems of quality and costs of care.
[Extrait résumé éditeur]
Hospice patients die in various settings, including at home with family caregivers. Hospice offers a time-of-death visit to provide support and confirm death, a requirement in some states but not all. Few studies have been conducted among home hospice families exploring their experiences without a time-of-death visit. To better understand the family’s experience regarding the time of death of their loved one, we conducted an exploratory study using a hermeneutic phenomenological approach. Home hospice families who had experienced a death within the last 6 to 13 months and had not received a time-of-death visit were recruited. Seven interviews were conducted, and data were analyzed using an emergent thematic approach. Major themes included caregiver’s previous experience with death, caregiver support, final hours, and reasons for not selecting a time-of-death visit. Results showed families did well without a time-of-death visit when strong social support was present and conveyed the importance of allowing personal choice. Further research is needed to identify families in need of time-of-death visits and targeted support needs and to inform practice and policy guidelines.
AIMS AND OBJECTIVES: To explore the advantages and disadvantages of using video consultations, as experienced by specialized palliative care healthcare professionals, who are involved in palliative care at home.
BACKGROUND: One challenge in the work of specialized palliative care teams, is the substantial resources used in terms of time and transport to and from the patient's home. Video consultations may be a solution for real-time specialized palliative home-care.
DESIGNS: Hermeneutic, post phenomenology.
METHODS: An explorative qualitative study utilizing data from field notes of an autobiographical diary, participant observations and semi-structured interviews with healthcare professionals. The COREQ guideline was used for reporting the study. See Supplementary File 1. The data collection took place in patients' homes, and at the Department of Oncology, Odense University Hospital, Denmark.
RESULTS: Eight participants (n=8); five community nurses and three specialized palliative care team members - a head physician, a physiotherapist and a nurse - participated in the study. The healthcare professionals' knowledge was based on n=82 video consultations with 11 patients. The range of video consultations was 3-18 per patient. The use of tablets in video consultations facilitated direct palliative care and led the community nurses and the specialized palliative care team nurse to co-operate. Potential barriers against using video consultations are the discussions about personal, and private issues regarding the illness, while family members are present.
CONCLUSIONS: Video consultations in specialized palliative home care are feasible, and the technology can facilitate multidisciplinary participation and cooperation among healthcare professionals. The continuous use of video consultations over time may increase the quality of specialized palliative home-care.
RELEVANCE TO CLINICAL PRACTICE: The use of video consultations can provide direct specialized palliative care over distance involving healthcare professionals, patients and their relatives.
BACKGROUND: In research on co-creation in nursing, a caring manner can be used to create opportunities whereby the patient's quality of life can be increased in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. To promote quality of life, nurses must be sensitive to patients' and their relatives' needs in care encounters. Co-creation can be defined as the joint creation of vital goals for patients through the process of shared knowledge between nurses, patients and their relatives.
AIM: The aim of this study was to explore nurses' experiences of caring encounters and co-creation in palliative home care from an ethical perspective.
RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: A hermeneutical approach was used. The material consisted of texts from interviews with 12 nurses in a home care context. The method was inspired by thematic analysis.
ETHICAL CONSIDERATIONS: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes.
FINDINGS: An overall theme, a main theme and four sub-themes emerged. Through ethical sensitivity and perceptivity, nurses can balance their actions in the moment and change their nursing care actions according to the patient's wishes through co-creation in encounters. Here the time is crucial, as the time needed is unique to each patient.
DISCUSSION: The themes together can be considered prerequisites for good palliative home care. If nurses fail to be sensitive and perceptive in encounters with dying patients, good palliative home care cannot be achieved. Ethical sensitivity and perceptiveness can also be considered a part of nurses' ethical competence.
CONCLUSION: Patients' dignity can be preserved through ethical sensitivity and perceptiveness, which is fundamental for good palliative care. Co-creation from patients' perspectives should be the focus of future research.
Background: Palliative care for seriously ill adults is spreading rapidly, giving rise to a fast-growing business sector: the home-based palliative care (HBPC) industry. These programs offer services common to most palliative care programs; what distinguishes them is that services are delivered to patients in their homes. Research shows these programs hold promise for improving patient outcomes at lower cost than usual care. Given this, growth in the HBPC business is likely fueled partly by the sector's money-making potential. As in many emerging industries, there are concerns that HBPC benefit may not be enjoyed equitably by patients and other stakeholders.
Objective: To safeguard HBPC quality, we take stock of where quality problems may manifest and discuss strategies to forestall these problems.
Methods: We examine HBPC trends with significant implications for care quality and cost, including HBPC payment, patient enrollment, staff management, and patient visits.
Results/Conclusions: Recommendations pertain to quality metrics, patient disclosures, and further research.
BACKGROUND: International evidence on the outcome of generalist versus specialist palliative care provision in palliative care trajectories is limited and varied. In general, intervention studies can influence the organisation of palliative care practice and professional collaborations. However, randomised clinical trials in palliative care rarely consider the organisational significance of the studies, as experienced by the professionals involved. DOMUS is the abbreviation for a Danish intervention study designed as a randomised clinical trial, investigating an accelerated transition from oncological to specialist palliative care at home for patients with incurable cancer. Alongside conducting the palliative care intervention study, we wanted to discover the perspectives of the healthcare professionals involved.
AIM: To explore the organisational significance of the DOMUS intervention study as experienced by the professionals involved.
DESIGN: A qualitative interview study, using thematic content analysis and inspired by organisational theory.
SETTING/PARTICIPANTS: Thirty-eight professionals from four units involved in the DOMUS intervention study took part in 10 groups and six individual interviews.
RESULTS: The DOMUS randomised clinical trial intervention influenced and sometimes disrupted both the ways of organising, collaborating and practising palliative care, and patients' and relatives' understanding of their own situation. It did this by (1) referring a broader palliative care target group to specialist palliative care, leading to (2) different palliative care needs, professional tasks, and perceived impact on (3) the organisation of palliative care and (4) professional collaboration.
CONCLUSION: Professionals involved in the DOMUS palliative care intervention found that the study had organisational significance, with an influence on professionals, patients and relatives. Specialist palliative care in Denmark is devoted organisationally and professionally to patients with severe or complex palliative care needs. Hence, new ways of organising palliative care for people in the earlier stages of their disease are needed.
Background: Unregulated care providers (UCPs) are at the forefront of direct client care in the community. Their services are required to meet the demand for home-based palliative care from a growing older population, yet understanding of UCPs involvement in care is limited. The study aimed to identify the types and frequencies of tasks performed by UCPs in home-based palliative care to older clients (> 65 years) and their families and to describe UCPs’ engagement in care, and barriers and facilitators to their work.
Methods: A mixed method approach was used comprising a quantitative retrospective chart review of UCPs’ tasks (n = 66), qualitative content analysis of progress notes from clients’ charts (n = 85), and thematic analyses of in-depth interviews with UCPs (n = 10).
Results: A thematic structure was derived from analyses and integration of data from the chart review and interviews. The themes reflect the physical, affective, and relational aspects of UCPs involvement in the care of clients and families at the end of life. The findings indicate that although a significant proportion (63%) of the 13, 558 UCP tasks identified were directed toward meeting clients’ physical care needs, their presence in the home, made UCPs an important source of information on the client’s condition; observing and appraising the situation. Further, the nature of their work and frequent interactions with clients and families also presented opportunities for UCPs to provide emotional support; a role UCPs felt was integral to their work.
Conclusions: The study highlights the challenging nature of palliative care to older clients and their families whose needs are often complicated, situated within the unique environment of home care where supervision of UCPs is at a distance. Challenges and facilitators to UCPs’ work in this context are discussed with recommendations to support UCPs in their roles.
Hospice health-care professionals (HCP) evaluate and manage cancer pain in patient homes. This study explores HCP’s perceptions of barriers that affect pain management for home hospice cancer patients. A convenience sample of 20 experienced hospice HCP were recruited from a regional hospice agency. Data were collected through two focus groups using semistructured interviews and analyzed using a constant comparative approach to generate themes. An unexpected finding revealed patient’s religious and cultural beliefs about suffering and family caregiver’s beliefs that patients deserve to suffer due to past actions are barriers to pain management in home hospice. Hospice HCP can identify patients at risk for suffering at the end of life. Interventions targeting spiritual suffering and needs are needed. Home hospice HCP have an ethical obligation to address undue suffering through family’s withholding of necessary pain medications and should consider alternative placement when home is not suitable for a peaceful death.
Background: Family caregivers in palliative care may be placed in a complicated emotional situation wherein they suffer the risk of grief reactions both pre- and postbereavement and may also experience symptoms of anxiety and depression.
Objective: The aim of this study was to investigate (1) associations between predeath grief and postdeath grief and (2) whether these are moderated by symptoms of anxiety and depression.
Design: This was a prospective correlational study. Linear regression analysis in three blocks was used to investigate associations between pre- and postdeath grief and moderation effects of anxiety and depression. Postdeath grief was used as the outcome variable and predeath grief was used as the explanatory variable in block I. The moderator variables, symptoms of anxiety, and symptoms of depression were added as covariates in block II. A multiplicative interaction term between predeath grief and anxiety/depression was added to the model in block III.
Setting/Subjects: Data were collected at 10 facilities specialized in palliative home care where health care professionals provided advanced care to patients with various diagnoses in their own homes.
Measurements: The anticipatory grief scale and the Texas Revised Inventory of Grief were used to measure pre- and postdeath grief, respectively. To measure symptoms of anxiety and depression, the Hospital Anxiety and Depression scale was used.
Results: A total of 128 family caregivers were included. Significant associations were found between predeath grief and postdeath grief and this association remained when controlled against symptoms of anxiety or depression. We found no moderation effect of anxiety or depression on the association between pre- and postdeath grief.
Conclusions: In conclusion, grief before and after an expected death can be regarded as parts of the same grief process. Hence, knowing the intensity of predeath grief could be a way to predict the levels of postdeath grief.
Background: Enabling death at home remains an important priority in end-of-life care policy. However, hospital continues to be a more prevalent place of death than home in the UK, with admissions at the end-of-life often negatively labelled. Admissions are frequently attributed to an unsuitable home environment, associated with inadequate family care provision and insufficient professional care delivery.
Aim: To understand problems in professional and lay care provision that discourage death at home and lead to hospital admissions at the end of life.
Design and setting: A qualitative study of admission to a large English hospital of patients close to the end of their life.
Method: Retrospective in-depth semi-structured interviews with healthcare professionals (n = 30) and next-of-kin (n = 3) involved in an admission. Interviews addressed why older patients (>65 years) close to the end of life are admitted to hospital. Interviews were transcribed and analysed thematically.
Results: Home-based end-of-life care appeared precarious. Hospital admission was considered by healthcare staff when there was insufficient nursing provision, or where family support, which was often extensive but under supported, was challenged. In these circumstances, home was not recognised to be a suitable place of care or death, justifying seeking care provision elsewhere.
Conclusion: Challenges in home care provision led to hospital admissions. Home end-of-life care depended on substantial input from family and professional carers, both of which were under-resourced. Where either care was insufficient to meet the needs of patients, home was no longer deemed to be desirable by healthcare staff and hospital care was sought.
BACKGROUND: Socioeconomic disparities in home death have been noted in the literature. Home-based palliative care increases access to home death and has been suggested as a means to decrease these disparities.
AIM: Our study examines the association between socioeconomic status and other demographic factors on place of death in a population receiving home palliative care in Toronto, Canada.
DESIGN: This is a retrospective chart review of patients who died between August 2013 and August 2015 when admitted to a home-based palliative care service. Multivariate multinomial regression examined the relationship between the place of death (home, palliative care unit [PCU], or acute care) with age, gender, primary diagnosis, and income quintile. Bivariate logistic regression was fitted to calculate the odds ratio (OR) and probability of preference for home death.
SETTING/PARTICIPANTS: Patients receiving home-based palliative care services from the Latner Centre for Palliative Care in Toronto, Canada.
RESULTS: A total of 2066 patients were included in multivariate analysis. Patients in the lowest income quintile had increased odds of dying in acute care (OR = 2.41, P < .001) or dying in PCU (OR = 1.64, P = .008) than patients in highest income quintile. Patients in the next lowest income quintiles 2 and 3 were also more likely to die in acute care. The rate of preference for home death was significantly lower in the lowest income quintile (OR = 0.47, P = .0047).
CONCLUSIONS: Patients in lower income quintiles are less likely to die at home, despite receiving home-based palliative care, although they may also be less likely to prefer home death.
OBJECTIVES: Although the experiences of family members who care for relatives at the end of life have been researched extensively, little is known about the needs and experiences of families caring for hospice patients with pacemakers.
AIM: To better understand the experiences of family caregivers of a terminally ill patient who received hospice care at home and chose deactivation of a pacemaker.
DESIGN: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis focusing on form and content was chosen to analyze the data.
PARTICIPANTS: Five bereaved caregivers from the Midwestern United States who provided care and participated in the deactivation of their family member's pacemaker.
RESULTS: Four storylines that described, gave meaning to, and contextualized the caregivers' experiences were identified: "I am done. I am not doing it anymore"; "Whatever you decide, I'll support you"; "It is really difficult to watch, but you want to be there"; and "I will not have part of this." Caregivers struggled with lack of support, understanding, and acceptance from medical providers when their family member decided to have her pacemaker deactivated, and they believed that the hospice model of care was appropriate to support and help them in that process.
CONCLUSIONS: This research aids in understanding the ramifications of family-provided end-of-life care to a patient whose pacemaker has been deactivated. This can help to increase hospice clinicians' knowledge regarding caregivers' experiences facing deactivation of a pacemaker, before and after the patient's death.
The aim of this study was to explore patients' experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was adapted to them which gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well-being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person-centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient-reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients' voice to be heard and thereby compose a basis for care.
BACKGROUND: Compassion is seen as a core professional value in nursing and as essential in the effort of relieving suffering and promoting well-being in palliative care patients. Despite the advances in modern healthcare systems, there is a growing clinical and scientific concern that the value of compassion in palliative care is being less emphasised.
OBJECTIVE: This study aimed to explore nurses' experiences of compassion when caring for palliative patients in home nursing care.
DESIGN AND PARTICIPANTS: A secondary qualitative analysis inspired by hermeneutic circling was performed on narrative interviews with 10 registered nurses recruited from municipal home nursing care facilities in Mid-Norway.
ETHICAL CONSIDERATIONS: The Norwegian Social Science Data Services granted permission for the study (No. 34299) and the re-use of the data.
FINDINGS: The compassionate experience was illuminated by one overarching theme: valuing caring interactions as positive, negative or neutral, which entailed three themes: (1) perceiving the patient's plea, (2) interpreting feelings and (3) reasoning about accountability and action, with subsequent subthemes.
DISCUSSION: In contrast to most studies on compassion, our results highlight that a lack of compassion entails experiences of both negative and neutral content.
CONCLUSION: The phenomenon of neutral caring interactions and lack of compassion demands further explorations from both a patient - and a nurse perspective.
BACKGROUND: Inadequate description of palliative care cancer patients in research studies often leads to results having limited generalizability. To standardize the description of the sample, the European Association for Palliative Care basic data set was developed, with 31 core demographic and disease-related variables.
AIM: To pilot test the data set to check acceptability, comprehensibility and feasibility.
DESIGN: International, multi-centre pilot study at nine study sites in five European countries, using mixed methods.
SETTING/PARTICIPANTS: Adult cancer patients and staff in palliative care units, hospices and home care.
RESULTS: In all, 191 patients (544 screened) and 190 health care personnel were included. Median time to fill in the patient form was 5 min and the health care personnel form was 7 min. Ethnicity was the most challenging item for patients and requires decisions at a national level about whether or how to include. Health care personnel found weight loss, principal diagnosis, additional diagnoses and stage of non-cancer diseases most difficult to respond to. Registration of diagnoses will be changed from International Statistical Classification of Diseases and Related Health Problems, 10th version code to a predefined list, while weight loss and stage of non-cancer diseases will be removed. The pilot study has led to rewording of items, improvement in response options and shortening of the data set to 29 items.
CONCLUSION: Pilot testing of the first version of the European Association for Palliative Care basic data set confirmed that patients and health care personnel understand the questions in a consistent manner and can answer within an acceptable timeframe. The pilot testing has led to improvement, and the new version is now subject to further testing.
BACKGROUND: The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home.
AIMS: To examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps.
DESIGN: A systematic review of home palliative care interventions in dementia.
DATA SOURCES: The review adhered to the PRISMA guidelines and the protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches.
RESULTS: We retrieved eight relevant studies, none of which was of high quality. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. Other European Association for Palliative Care domains identified as important in palliative care for people with dementia, for example, prognostication of dying or avoidance of burdensome interventions were under-reported. No direct evidence on facilitators and barriers to implementation was found.
CONCLUSIONS: The review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for example, the need for process evaluation to identify facilitators and barriers to implementing interventions.
Background: An international panel achieved consensus on 9 need-based and 2 time-based major referral criteria to identify patients appropriate for outpatient palliative care referral. To better understand the operational characteristics of these criteria, we examined the proportion and timing of patients who met these referral criteria at our Supportive Care Clinic.
Methods: We retrieved data on consecutive patients with advanced cancer who were referred to our Supportive Care Clinic between January 1, 2016, and February 18, 2016. We examined the proportion of patients who met each major criteria and its timing.
Results: Among 200 patients (mean age 60, 53% female), the median overall survival from outpatient palliative care referral was 14 (95% confidence interval 9.2, 17.5) months. A majority (n = 170, 85%) of patients met at least 1 major criteria; specifically, 28%, 30%, 20%, and 8% met 1, 2, 3, and = 4 criteria, respectively. The most commonly met need-based criteria were severe physical symptoms (n = 140, 70%), emotional symptoms (n = 36, 18%), decision-making needs (n = 26, 13%), and brain/leptomeningeal metastases (n = 25, 13%). For time-based criteria, 54 (27%) were referred within 3 months of diagnosis of advanced cancer and 63 (32%) after progression from = 2 lines of palliative systemic therapy. The median duration from patient first meeting any criterion to palliative care referral was 2.4 (interquartile range 0.1, 8.6) months.
Conclusions: Patients were referred early to our palliative care clinic and a vast majority (85%) of them met at least one major criteria. Standardized referral based on these criteria may facilitate even earlier referral.
Informal hospice caregivers often have difficulty managing patient pain at home. We developed a digital application, e-Pain Reporter, for informal caregivers to record and providers to monitor patient pain and pain management. The purpose of this study was (1) to assess the feasibility of informal caregivers using the e-Pain Reporter for 9 days in home hospice by investigating recruitment and retention and caregiver satisfaction with and frequency of use of the e-Pain Reporter and (2) describe patient pain characteristics and caregiver’s barriers to pain management and self-efficacy in providing patient care in the home. One-group pre-post design was used. Patient-caregiver dyads were recruited from 1 hospice agency. Caregivers were asked to report all patient pain and pain management using the e-Pain Reporter. Feasibility of the e-Pain Reporter was assessed by the average number of times caregivers recorded breakthrough and daily pain and caregiver satisfaction with the app. The 27-item Barriers Questionnaire II and 21-item Caregiver Self-efficacy Scale were administered at baseline. Fourteen dyads enrolled, 2 patients died, and 12 dyads completed the study. Mean number of pain reports over 9 days was 10.5. Caregivers reported high overall satisfaction with the e-Pain Reporter. Barriers scores were moderately high, suggesting erroneous beliefs and misconceptions about pain reporting and use of analgesics, but self-efficacy in managing pain was also high (93% confidence). Findings suggest that the e-Pain Reporter is a feasible method to report and monitor caregiver management of pain at home. Caregiver high barriers and high overconfidence suggest the need for an educational component to the e-Pain Reporter to address misconceptions about pain and pain management.
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.