Emergency health services (EHS) have experienced a steady increase in demand from palliative patients accessing 9-1-1 during times of acute crisis, although the majority of these patients do not wish for conveyance to hospital following paramedic treatment. To address this demand, and to provide patients with the right care, the first time, the British Columbia Emergency Health Service (BCEHS) introduced the province’s first Assess, See, Treat and Refer (ASTaR) Clinical Pathway. This alternative model of care is intended to improve patient-oriented care by providing care for patients in their own home and reducing the requirement for conveyance to the emergency department, thus reducing the requirement for hospitalization. Launched in June 2019, the ASTaR Pathway includes the early recognition of patients with palliative needs accessing 9-1-1, the use of secondary triage services and the automatic notification and referral of non-conveyed patients to primary healthcare teams for patient follow-up. The following commentary outlines the early integration of the ASTaR Palliative Clinical Pathway into the BCEHS paramedic approach to palliative patient care.
Should indication for transfusion in paediatric palliative care be based on the child's perspective rather than the biological results? An 8-year-old boy presenting a relapse of a stage IV neuroblastoma received regular blood transfusions. A severe exophtalmia led the doctors to question the transfusion strategy. Over 7.5 months, the child received 56 red blood cell units and 31 platelet units. He was hospitalised 50 times. Indication for blood test and transfusion may be regularly and collegially reassessed. Transfusion needs in a palliative strategy can be as high as in a curative strategy. Practices, benefits but also ethical and public health dimensions should be more studied.
BACKGROUND: For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers' feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death.
METHODS: A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann's qualitative method for analysis.
RESULTS: Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: "Personal factors", "Healthcare professionals" and "Organization" of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security.
CONCLUSION: Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.
Background: Rather than early hospice enrollment, most Medicare beneficiaries receive “usual care” in the last months of life, outside of the hospice setting. While care intensity during the last weeks of life has been studied extensively, patterns of symptom management services (SMS) and/or cancer-directed therapies (CDT) received over a 6-month end-of-life period have not.
Methods: This retrospective study used the Surveillance, Epidemiology, and End Results (SEER)–Medicare database to identify decedents diagnosed with lung cancer at age = 66 years between January 2007 and December 2013 who survived = 6 months from diagnosis. Medicare claims identified receipt of SMS and/or CDT. We created monthly indicators for care content (SMS-only, CDT-only, or both; otherwise full-month hospice or inpatient/skilled nursing). Multinomial logistic regression estimated associations between sociodemographics and comorbidity, with care content in the final month.
Results: Between 6 and 1 months before death, full-month hospice and inpatient/skilled nursing increased; CDT decreased from 31.9 to 18.5%; SMS increased from 86.6 to 97.7%. Relative to full-month hospice, the percentage of patients receiving SMS-only was higher for males, unmarried, younger age, and higher comorbidity; the percentage receiving CDT was also higher for males, unmarried, and younger age, but decreased with increasing comorbidity and over calendar time.
Conclusion: Among lung cancer decedents observed in the outpatient, nonhospice setting, SMS receipt increased and was nearly universal as death approached. CDT diminished dramatically over the end-of-life period. Associations between sociodemographic characteristics and care setting suggest differences in care preferences or access barriers. Claims represent an important resource for characterizing end-of-life care patterns..
Understanding the preferred place of death may assist to organize and deliver palliative health care services. The study aims to assess preference for place of death among cancer patients in receipt of home-based palliative care, and to determine the variables that affect their preference for a home death. A prospective cohort design was carried out from July 2010 to August 2012. Over the course of their palliative care trajectory, a total of 303 family caregivers of cancer patients were interviewed. Multivariate regression analysis was employed to assess the determinants of a preferred home death. The majority (65%) of patients had a preference of home death. The intensity of home-based physician visits and home-based personal support worker (PSW) care promotes a preference for a home death. Married patients, patients receiving post-graduate education and patients with higher Palliative Performance Scale (PPS) scores were more likely to have a preference of home death. Patients reduced the likelihood of preferring a home death when their family caregiver had high burden. This study suggests that the majority of cancer patients have a preference of home death. Health mangers and policy makers have the potential to develop policies that facilitate those preferences.
Background: Paramedics commonly face acute crises of patients in palliative care, but their involvement in end-of-life care is not planned systematically.
Aim: To evaluate a protocol for end-of-life care at home including pre-planned integration of paramedics and end-of-life care wards.
Design: Paramedic visits to patients in end-of-life care protocol were retrospectively studied.
Setting/Participants: All of the patients who had registered for the protocol between 1 March 2015 and 28 February 2017 in North Karelia, Finland, were included in this study.
Results: A total of 256 patients were registered for the protocol and 306 visits by paramedic were needed. A need for symptom control (38%) and transportation (29%) were the most common reasons for a visit. Paramedics visited 43% and 70% of the patients in areas with and without 24/7 palliative home care services, respectively (p < 0.001); while 58% of all the visits were done outside of office hours. Problems were resolved at home in 31% of the visits. The patient was transferred to a pre-planned end-of-life care ward and to an emergency department in 48% and 16% of the cases, respectively. More patients died in end-of-life care wards in areas without (54%) than with (33%) 24/7 home care services (p = 0.001).
Conclusions: integration of paramedics into end-of-life care at home is reasonable especially in rural areas without 24/7 palliative care services and outside of office hours. The majority of patients can be managed at home or with the help of an end-of-life care ward without an emergency visit.
Twenty-two members of a nursing home took part in a study examining their experiences with and beliefs about unusual end-of-life phenomena (EOLP). Nearly all the staff members had witnessed and/or been told about residents holding on for someone to arrive or for a specific event to occur before dying (95% and 91%, respectively). Other commonly witnessed/reported EOLP included residents having sudden, unexpected moments of lucidity, sensing or feeling the presence of deceased residents, residents' dreaming about deceased relatives, friends or pets, and deathbed visions. More than three-quarters of the staff members regarded EOLP as transpersonal experiences, as comforting to dying residents and their family members, and as part of the dying process. Fourteen staff members described experiences they had had with EOLP in the nursing home. The most frequently described experiences involved the appearance of apparitions. Seventy-seven percent of the staff members expressed an interest in learning more about EOLP.
Background: For people with dementia, burdensome transitions may indicate poorer-quality end-of-life care. Little is known regarding the association between home healthcare (HHC) and these burdensome transitions. We aimed to investigate the impact of HHC on transitions and hospital/intensive care unit (ICU) utilisation nearing the end-of-life for people with dementia at a national level.
Methods: A nested case-control analysis was applied in a retrospective cohort study using a nationwide electronic records database. We included people with new dementia diagnoses who died during 2002–2013 in whole population data from the universal healthcare system in Taiwan. Burdensome transitions were defined as multiple hospitalisations in the last 90 days (early transitions, ET) or any hospitalisation or emergency room visit in the last three days of life (late transitions, LT). People with (cases) and without (controls) burdensome transitions were matched on a ratio of 1:2. We performed conditional logistic regression with stratified analyses to estimate the adjusted odds ratio (OR) and 95% confidence interval (CI) of the risks of transitions.
Results: Among 150,125 people with new dementia diagnoses, 61,399 died during follow-up, and 31.1% had burdensome transitions (50% were early and 50% late). People with ET had the highest frequency of admissions and longer stays in hospital/ICU during their last year of life, while people with LT had fewer hospital/ICU utilisation than people without end-of-life transitions. Receiving HHC was associated with an increased risk of ET (OR = 1.14, 95 % CI: 1.08–1.21) but a decreased risk of LT (OR = 0.89, 95 % CI 0.83–0.94). In the people receiving HHC, however, those who received longer duration (e.g., OR = 0.50, 95 % CI: 0.42–0.60, >365 versus =30 days) or more frequent HHC or HHC delivered closer to the time of death were associated with a remarkably lower risk of ET. Conclusions: HHC has differential effects on early and late transitions. Characteristics of HHC such as better continuity or interdisciplinary coordination may reduce the risk of transitions at the end-of-life. We need further studies to understand the longitudinal effects of HHC and its synergy with palliative care, as well as the key components of HHC that achieve better end-of-life outcomes.
Background: Access to healthcare services, from diagnosis through end of life (EOL), is important among persons living with Human Immunodeficiency Syndrome (HIV) and Acquired Immunodeficiency Syndrome (AIDS) (PLWHA). However, little is known about the availability of hospice services in Appalachian areas. Therefore, the objective of this study is to describe the geographic distribution of hospice, homecare and nursing home facilities in order to demonstrate current existence of and access to resources for EOL care among PLWHA in the Appalachian regions of Tennessee and Alabama.
Methods: this paper reports on the second aim of a larger sequential, mixed methods qualitative-quantitative (qual quan) study. Data from advance care planning (ACP) surveys were collected by both electronic (n = 28) and paper copies (n = 201) and, among other things, obtained information on zip codes of residence of PLWHA. This enabled assessment of the geographic distribution of residences of PLWHA in relation to the distribution of healthcare services such as hospice and home healthcare services. Hospice and Home Healthcare data were obtained from the Tennessee and Alabama Departments of Health. The street addresses of these facilities were used to geocode and map the geographic distributions of the facilities using Street Map USA. Travel times to Hospice and Home Healthcare facilities were computed and mapped using ArcGIS 10.3.
Results: We identified a total of 32 hospice and 69 home healthcare facilities in the Tennessee Appalachian region, while the Alabama Appalachian region had a total of 110 hospice and 86 home healthcare facilities. Most care facilities were located in urban centers. The distribution of care facilities was worse in Tennessee with many counties having no facilities, requiring up to an hour drive time to reach patients. A total of 86% of the PLWHA indicated preference to die at home.
Conclusions: Persons living with HIV/AIDS in Appalachia face a number of challenges at the end of life that make access to EOL services difficult. Although respondents indicated a preference to die at home, the hospice/homecare infrastructure and resources are overwhelmingly inadequate to meet this need. There is need to improve access to EOL care in the Appalachian regions of both Tennessee and Alabama although the need is greater in Tennessee.
BACKGROUND: Many barriers exist in providing quality end-of-life care in long-term care (LTC), including transitions of care between acute care and LTC. Transfer forms can be beneficial in ensuring resident's end-of-life care needs are coordinated between different settings. The NYGH-LTC Transfer Form is a newly developed tool created to enhance care for residents transferred from acute care back to their LTC home for end-of-life.
STUDY AIM: Assess the perceived ease of use, usefulness, and care-enhancing potential of the NYGH-LTC Transfer Form by interprofessional LTC staff.
METHODS: The study population included interprofessional staff members at 2 LTC homes in Toronto, Canada. Quantitative data was obtained through surveys and qualitative data was obtained through focus groups.
RESULTS: There were a total of 34 participants. 79.4% of participants agreed the form was easy to use and 82.4% agreed it would improve care. Subgroup analysis demonstrated that participants with greater than 20 years experience were less likely to agree that it would improve care (p = 0.01). Qualitative analysis generated 4 themes: 1) Strengths, 2) Areas of Improvement, 3) Information Sharing, and 4) Communication.
CONCLUSIONS: The NYGH-LTC Transfer Form was overall well-evaluated. The form was seen as most useful for those with less experience or less confidence in palliative care. Communication was identified as a major barrier to successful transitions of care and increased bidirectional verbal communication is needed in addition to the form.
Older adults' preference regarding where they want to spend their end-of-life (EOL) has been reported to be a significant predictor of the actual EOL location. Home-care nurses have often been reported to try involving single older adults' neighbours in the support network of the older adults (community involvement activities) to allow them to stay at home. Hence, nurses' community involvement activities may be among the significant factors of older adults' preference to stay at home during EOL. Therefore, this study explored home-care nurses' community involvement activities and its association with single older adults' EOL preference. A cross-sectional questionnaire survey was conducted with older adults (aged 65 years or older) who lived alone and used home-care nursing services for more than 6 months, their home-care nurses, and managers of their home-care nursing agencies. Questions included participants' characteristics, nurses' community involvement activities and older adults' preference to remain at home during EOL. We conducted multiple logistic regression analyses to explore the relationship between nurses' community involvement activities and older adults' preference to remain at home during EOL while controlling for their demographic variables. In total, 103 pairs of home-care nurses and single older adults from 27 home-care nursing agencies participated. Approximately 70% of older adults preferred to remain at home during EOL, and 50% of nurses implemented community involvement activities. Older adults' preference to remain at home during EOL was associated with implementation of community involvement activities (Odds Ratio [OR]: 3.4; 95% Confidence Interval [95%CI]:1.1-9.8), home-care nurses' higher practical clinical ability (OR: 1.4, 95%CI:1.0-1.8), and older adult's longer use of home-care nursing service (OR: 2.2, 95%CI:1.2-4.1). Community involvement activities may be essential in helping single older adults to stay at home as per their preference for EOL.
INTRODUCTION: Care homes provide nursing and social care for older people who can no longer live independently at home. In the UK, there is no consistent approach to how information about residents' medical history, care needs and preferences are collected and shared. This limits opportunities to understand the care home population, have a systematic approach to assessment and documentation of care, identifiy care home residents at risk of deterioration and review care. Countries with standardised approaches to residents' assessment, care planning and review (eg, minimum data sets (MDS)) use the data to understand the care home population, guide resource allocation, monitor services delivery and for research. The aim of this realist review is to develop a theory-driven understanding of how care home staff implement and use MDS to plan and deliver care of individual residents.
METHODS AND ANALYSIS: A realist review will be conducted in three research stages.Stage 1 will scope the literature and develop candidate programme theories of what ensures effective uptake and sustained implementation of an MDS.Stage2 will test and refine these theories through further iterative searches of the evidence from the literature to establish how effective uptake of an MDS can be achieved.Stage 3 will consult with relevant stakeholders to test or refine the programme theory (theories) of how an MDS works at the resident level of care for different stakeholders and in what circumstances. Data synthesis will use realist logic to align data from each eligible article with possible context-mechanism-outcome configurations or specific elements that answer the research questions.
ETHICS AND DISSEMINATION: The University of Hertfordshire Ethics Committee has approved this study (HSK/SF/UH/04169). Findings will be disseminated through briefings with stakeholders, conference presentations, a national consultation on the use of an MDS in UK long-term care settings, publications in peer-reviewed journals and in print and social media publications accessible to residents, relatives and care home staff.
PROSPERO REGISTRATION NUMBER: CRD42020171323; this review protocol is registered on the International Prospective Register of Systematic Reviews.
But de l’étude : La possibilité de passer sa fin de vie chez soi est un enjeu de santé publique qui répond à la demande de la population et aux contraintes du système de santé. L’organisation de l’offre de soins et des acteurs infirmiers est donc centrale dans le développement des soins palliatifs à domicile. L’objectif de cette étude était de décrire la place des différents acteurs de soins infirmiers dans la prise en charge des situations palliatives avancées et terminales à domicile.
Matériel et méthodes : Une enquête de pratique a été réalisée au moyen d’un questionnaire en ligne auprès des médecins généralistes installés en Gironde. Le repérage des situations palliatives était réalisé avec le "Supportive & Palliative Care Indicators Tool" en version française (SPICT-FR™).
Résultats : En tout 89 médecins ont décrit la prise en charge de 607 patients en situations palliatives avancées et terminales en cours de suivi, et celle de 260 patients décédés à domicile au cours des 12 derniers mois à l’issue d’une pathologie en situation palliative. Les infirmiers libéraux assuraient, seuls, 64 % de l’ensemble des prises en charge en cours, et 56 % de celles le mois précédant le décès. Ils intervenaient également dans la majorité des situations où les infirmiers des services d’hospitalisation à domicile et des services de soins infirmiers à domicile étaient présents.
Conclusion : Alors que la représentation commune tend à considérer l’infirmier du service d’hospitalisation à domicile comme l’acteur majoritaire des situations palliatives avancées et terminales à domicile, cette enquête montre que les infirmiers libéraux ont une place prépondérante dans ces situations. Le développement des soins palliatifs à domicile et de la culture palliative passera par une meilleure reconnaissance et le soutien de ces acteurs.
PURPOSE: Understanding the end-of-life psychosocial needs of cancer patients at home is a knowledge gap. This study describes the trajectory of psychosocial symptoms in the last 6 months of life among cancer decedents who were receiving home care.
METHODS: Observational population-based cohort study of cancer decedents who were receiving home care services between 2007 and 2014. Decedents had to have at least one home care assessment in the last 6 months of life for inclusion. Outcomes were the presence of psychosocial symptoms (i.e., anxiety, loneliness, depression, social decline, caregiver distress, and cognitive decline) at each week before death.
RESULTS: Our cohort included 27,295 unique cancer decedents (30,368 assessments), of which 58% died in hospital. Fifty-six percent were older than 74, and 47% were female. The prevalence of all symptoms increased approaching death, except loneliness. Social decline (48%-78%) was the most prevalent psychosocial symptom, though loneliness was reported in less than 10% of the cohort. Caregiver distress rose over time from 15%-27%. A third of the cohort reported issues with cognitive impairment. Multivariate regression showed that physical symptoms such as uncontrolled pain, impairment in independent activities of daily living, and a high level of health instability all significantly worsened the odds of having a psychosocial symptom in the last 3 months of life.
CONCLUSION: In this large home care cancer cohort, trajectories of psychosocial symptoms worsened close to death. Physical symptoms, such as uncontrolled pain, were associated with having worse psychosocial symptoms at end of life.
In this paper we, twin sisters, present a joint autoethnographic account of providing end of life care for our mum who had terminal cancer. Using the theoretical framing of performance from Goffman's theory of Dramaturgy, we present the findings from a joint autoethnography, focusing on two key themes: performing emotion work and performing what we conceptualise as ‘dignity work’. This paper's contributions are twofold. First, conceptually, this paper offers an important contribution to literature concerned with the sociology of illness, by critically engaging with Goffman's notion of frontstage and backstage performance, applied to the context of home care provided by family carers. The second contribution of this paper is methodological; we promote the under-utilised approach of a joint autoethnography and argue for its usefulness in the context of end of life care. We contend that the process of writing this paper was emotionally challenging, yet arriving at the final paper, which serves as a legacy of our mum, was cathartic. We argue for the usefulness of written diaries as a backstage arena through which other informal carers can think through, and come to terms with, experiences of death and dying.
BACKGROUND/OBJECTIVES: To describe the use of home-based medical care (HBMC) among Medicaid beneficiaries.
DESIGN: A systematic review of the peer-reviewed and gray literature of home-based primary care and palliative care programs among Medicaid beneficiaries including dual eligibles.
SETTING: HBMC including home-based primary care and palliative care programs.
PARTICIPANTS Studies describing Medicaid beneficiaries receiving HBMC.
MEASUREMENTS: Three groups of studies were included: those focused on HBMC specifically for Medicaid beneficiaries, studies that described the proportion of Medicaid patients receiving HBMC, and those that used Medicaid status as a dependent variable in studying HBMC.
RESULTS: The peer-reviewed and gray literature searches revealed 574 unique studies of which only 16 met inclusion criteria. Few publications described HBMC as an integral care delivery model for Medicaid programs. Data from the programs described suggest the use of HBMC for Medicaid beneficiaries can reduce healthcare costs. The addition of social supports to HBMC appears to convey additional savings and benefits.
CONCLUSION: This systematic literature review highlights the relative dearth of literature regarding the use and impact of HBMC in the Medicaid population. HBMC has great potential to reduce Medicaid costs, and innovative programs combining HBMC with social support systems need to be tested.
This study aimed to investigate actual situations of nursing activities in supporting the transition to homecare settings for end-stage cancer patients and to determine factors related to executing such nursing activities from the perspectives of communication skills and interprofessional collaboration. A cross-sectional study was conducted with 513 nurses who worked at designated cancer care hospitals in Japan. A total of 318 valid responses were obtained (valid response rate: 62.0%). Scores for nursing activities were higher for the following items: sharing information regarding the transition to homecare settings, intentionally engaging with patients after their medical conditions were explained, providing care for families, and understanding a patient's will about the transition to homecare settings. On the other hand, scores were lower for items that were related to guiding juniors and self-improvement. A multiple regression analysis was performed with nursing activities as the dependent variable. 8 factors related to nursing activities were determined: experience in supporting the transition to homecare settings as a primary nurse, contribution to a team (Team Approach Assessment Scale [TAAS]), years of nursing experience, function of a team (TAAS), regulation of interpersonal relationship (ENDCOREs communication skills scale), experience of participation in homecare nursing education or seminars, verbal communication skills for good communication (End-of-life Care Nurses’ Communication Skills scale), and educational background. Future challenges include developing an educational program based on the results of the present study and promoting educational intervention studies.
Background: Catheter-related bloodstream infections (CRBSIs) constitute a major complication associated with the use of central venous lines (CVL). The aim of this study was to investigate the incidence proportion and risk factors of CRSBI in palliative care patients with CVL receiving home parenteral nutrition (HPN).
Methods: Medical records from patients admitted to a medical home care unit in stockholm, Sweden, during 2017 were reviewed (n=1022) and 454 palliative care patients with a CVL were identified. Data on CRBSI cases, HPN exposure time, type of parenteral nutrition (PN), age, diagnosis and type of CVL were collected.
Results: Twenty-nine of 143 patients receiving HPN through a CVL were diagnosed with a CRBSI (20%). Nine of 311 patients with CVL without exposure for HPN developed CRBSI (3%). The risk of a CRBSI was significantly higher in patients receiving HPN compared with those not receiving HPN, OR 8.5 (95% CI 4.0 to 18.7). For those receiving HPN six to seven times a week the risk was even higher, OR 13 (95% CI 5.1 to 30.3). The highest incidence proportion of CRBSI (31%) was found in a home care team where patients had been trained to disconnect themselves from the PN drip. Sex, cancer versus non-cancer, type of CVL or protein content in the PN, did not differ between patients that developed CRBSI versus those that did not develop the outcome.
Conclusion: HPN entails a high risk of CRBSI. A high frequency of PN and incautious handling of the disconnection of the drip, seem to be the most important risk factors.
PROBLEM: There is a growing international drive to deliver children's palliative care services closer to home. Families should have choice of where end of life (EOL) care is provided with home as one option. This review aims to establish the current international evidence base relating to children's EOL care at home.
ELIGIBILITY CRITERIA: A systematic scoping review was conducted in accordance with PRISMA-ScR reporting guidelines. Seven databases were searched to identify papers published between 2000 and 2018. Eligibility criteria included papers reporting children's EOL care with specific relation to: home being the preferred place of death; services providing EOL care at home; family experiences of receiving support when their child died at home and professionals' experiences of delivering this care.
SAMPLE: Twenty-three papers met the eligibility criteria and were included in the review.
RESULTS: Engagement of families in EOL care planning discussions was identified as a key factor to facilitate choice of setting. Consistent themes from the data suggest that providing access to care in the home 24/7 by a team of professionals with specialist pediatric palliative care knowledge is an essential aspect of any model of home-based EOL care.
DISCUSSION AND APPLICATION TO PRACTICE: This is the first comprehensive review of home-based EOL care for children which offers a valuable contribution to policy, practice and research. The evidence mapped and synthesised in this review can inform the development of services to facilitate the provision of EOL care at home in line with the unique wishes and needs of children and families.
Adequate interprofessional collaboration is essential to provide high quality palliative dementia care across different settings. Within interprofessional collaboration, nurses are the frontline healthcare professionals (HCPs), who interact closely with people with dementia, their loved ones, and other HCPs. A survey was conducted to explore the needs of nurses regarding interprofessional collaboration in home care (HC) organisations, nursing homes (NHs) and during NH admissions. The survey identified the perceived quality of and preferred needs regarding interprofessional collaboration. In total, 384 participants (53.9% home care nurses) completed the survey. The most frequently reported collaboration needs in HC organisations and NH were optimal communication content e.g. information transfer and short communication lines (being able to easily contact other disciplines), and coordination e.g. one contact person, and clear task division and responsibilities). During NH admissions, it was important to create transparency about agreements concerning end-of-life wishes, optimize nurse-to-nurse handover during NH admissions (through performing visits prior to admissions, and receiving practical information on how to guide relatives), and improve coordination (e.g. one contact person). In conclusion, the key collaboration needs were organising central coordination, establishing optimal communication, and creating transparency on end-of-life care agreements.