Palliative Day Research Articles

Consensus-based recommendations for the development and expansion of palliative day care clinics in Germany: results of a Delphi study

BackgroundNeeds-based, patient-oriented palliative care includes palliative day care clinics as a specialized semi-inpatient care offer. However, the establishment and development of these facilities has been unsystematic. Research is needed to strengthen their transparency and ensure their accessibility, quality, and structural adequacy. A national Delphi study was conducted to generate appropriate recommendations for the establishment and development of palliative day care clinics in Germany.MethodsRecommendations were formulated from focus group data on the development and expansion of palliative day care clinics in Germany. Experts on in- and outpatient palliative care rated 28 recommendations for relevance and feasibility, respectively, using a 4-point Likert-type scale. Suggestions for improvement were captured via free text comments. Items were considered consented when more than 80% of the experts scored them 4 (strongly agree) or 3 (somewhat agree), regarding both relevance and feasibility.ResultsA total of 23 experts (32% response rate) completed three Delphi rounds. Following the first round, 10 of 28 recommendations were revised according to participants’ comments; 1 recommendation was rejected. After the second round, 3 of these 10 recommendations were revised, while 3 were rejected. Consensus was achieved after the third round for 22 of the initial recommendations.ConclusionsThe Delphi-consented recommendations provide a basis for the targeted evidence- and needs-based development of palliative day care clinics. The findings show a need for standards setting and the meaningful integration of these clinics into existing structures.Trial registrationThe present study was prospectively registered on April 20, 2020, with the German Clinical Trials Register (DRKS00021446).

A42A palliative care skills study day is an effective way of meeting palliative care registrar curriculum Direct Observation of Procedural Skills (DOPs) requirements

The new Speciality Training curriculum for Palliative Medicine from August 2022 identifies key procedural skills that, for the first time, can be performed in a simulation (SIM) skills lab to demonstrate proficiency [1]. These include tracheostomy care, managing non-invasive ventilation (NIV) and the management of indwelling ascitic drains. These skills can be difficult to acquire in non-hospital settings like hospices and in the community. A bespoke, pilot palliative care skills day was organized to assess the suitability for theory, skills training and subsequent opportunity to demonstrate proficiency by sign off against curriculum competencies. A total of 11 palliative care trainees from the Northern Deanery attended a pilot SIM study day in March 2023. Three parallel workshops were planned – tracheostomy care, the insertion and management of ascitic drains and managing NIV. Each workshop was delivered by local experts in the area (non- palliative care professionals) with experience of teaching and training other professionals. assessing internal medicine trainees. Trainers were briefed on learning outcomes prior to the session by two palliative care consultants, and the clinical context of each session was set within relevant palliative care environments for e.g. the care of a patient in a hospice, in the community or in a hospital. Trainee confidence was assessed before and after SIM training with the use of 10-point Likert scales and free text comments. Overall self-reported trainee confidence and competence scores increased for all three workshops (Paracentesis 7 to 8.8 out of 10, NIV 4.5 to 8.6, tracheostomy care 3.8 to 8.9). All trainees agreed it was an effective and educational way of addressing curriculum objectives; and agreed it should be a rolling programme offered regionally. Trainees commented on the positive learning environment, the small group sizes, the benefit of being taught by experts and having the opportunity to be assessed for curriculum requirements. Trainees who had previously achieved competencies commented on the benefit of refreshing skills. One area for development identified was the lack of standardization on DOPs forms about the level of proficiency required. This will be fed back to the regional training committee for the future. Trainees identified further clinical skills that could be addressed in a skills lab and hence, a second skills day will be organized. SIM training is an effective tool for delivering training around procedural skills for palliative care registrars. It also brings opportunity to demonstrate proficiency in specific practical skills. Authors confirm that all relevant ethical standards for research conduct and dissemination have been met. The submitting author confirms that relevant ethical approval was granted, if applicable.

Benefits of Early Palliative Care Integration in a Day Care Program: The Patients' Perspective.

Aim: The aim of this study is to present the experiences of cancer patients who participate in a social model palliative day care program (PDCP). This is the first research study that evaluates early integration of PDCP, from the patients' perspective, in Central and Eastern Europe. Methods: A descriptive qualitative study using five focus groups was conducted with patients cared by Hospice Casa Sperantei Foundation (HCS) in Brasov, Romania. Fifty participants were recruited from the PDCP. Discussions were transcribed and analyzed thematically. Results: Three major categories emerged from the focus groups: (1) significance of diagnosis before integration of palliative care (PC); (2) perceptions of diagnosis after integration of PC; and (3) benefits of attending the PDCP. The findings indicate that PDCPs facilitate continuity of care for patients and families with PC needs by addressing and responding to physical, psychosocial, and spiritual needs. Participation in the PDCP fosters a sense of connectedness with others, helps individuals reconnect with self, and provides an opportunity to engage in activities that bring meaning and value to daily living. Conclusions: This study is highly important in the context of a national- and regional-wide interest for increasing the coverage of PC needs of patients and families, by varying the types of services. It explores the benefits of integration of PC services early on the trajectory of the disease of cancer patients. The themes that emerged from this study are consistent with previous international studies referring to benefits of early integration of PC throughout PDCP. Future research is needed to examine further the benefits of early integration of PDCP services for patients living with serious illnesses. Clinical Trials Registration Number 1/03.02.2020.

Expert Perspectives on the Additional Benefit of Day Hospices and Palliative Day Care Clinics in Germany: A Qualitative Approach.

Background: In Germany, hospice and palliative care is well covered through inpatient, outpatient, and home-based care services. It is unknown if, and to what extent, there is a need for additional day care services to meet the specific needs of patients and caregivers. Methods: Two day hospices and two palliative day care clinics were selected. In the first step, two managers from each facility (n = 8) were interviewed by telephone, using a semi-structured interview guide. In the second step, four focus groups were conducted, each with three to seven representatives of hospice and palliative care from the facilities' hospice and palliative care networks. Interviews and focus groups were audio recorded, transcribed verbatim and analyzed using qualitative content analysis. Results: The interviewed experts perceived day care services as providing additional patient and caregiver benefits. Specifically, the services were perceived to meet patient needs for social interaction and bundled treatments, especially for patients who did not fit into inpatient settings (due to, e.g., their young age or a lack of desire for inpatient admission). The services were also perceived to meet caregiver needs for support, providing short-term relief for the home care situation. Conclusions: The results suggest that inpatient, outpatient, and home-based hospice and palliative care services do not meet the palliative care needs of all patients. Although the population that is most likely to benefit from day care services is assumed to be relatively small, such services may meet the needs of certain patient groups more effectively than other forms of care.

“My everyday life has returned to normal”- Experiences of patients and relatives with a palliative day care clinic: a qualitative evaluation study

PurposePalliative day care clinics (PDCCs) complement inpatient and home palliative care and provide access to a range of multi-professional services. However, they are not part of standard care in Germany. Yet, international studies show that PDCCs have a positive impact on e.g. quality of life.To evaluate one of the firstPDCCs in Germany (Aschaffenburg-Alzenau (PDCC-AA)) by describing theexperiences, satisfaction, challenges, wishes of patients and relatives andpossible alternatives to treatment in the PDCC.MethodsQualitative study using semi-structuredtelephone interviews. Data was analyzed using qualitative structuring contentanalysis according to Kuckartz with deductive a priori categories and inductivesubcategories.ResultsA total of 31 patients and 38 relativescompleted telephone interviews. The majority of patients were diagnosed with a canceror tumor disease. The following four main themes emerged: (1) alternatives totreatment at the PDCC, (2) symptom relief, (3) sense of security, (4) “everydaylife framing” (normality of everyday life).Participants valued the medicaltreatment (especially for pain), psychosocial support given and having directaccess to a range of services (e.g., wound care and pleural drainage), whilerelatives valued being provided respite services. A sense of security,availability of therapies, and devoted time that healthcare providers spent toexplain e.g., treatment options were mentioned most positively, as well asconfidence in dealing with the illness. As to whether there was an alternativeto treatment in the PDCC, some saw further inpatient stays, the emergency roomor care by general practitioners as options (although not preferred). Patientsexpressed concern that they were not treated and informed according to theirneeds in other care settings.ConclusionsPDCCs may close a gap betweeninpatient and home palliative care. Participants mentioned that hospital stayscan be delayed or even prevented.

A survey of hospice day services in the United Kingdom & Republic of Ireland : how did hospices offer social support to palliative care patients, pre-pandemic?

IntroductionSocial support is described by patients and other stakeholders to be a valuable component of palliative day care. Less is known about the range of hospice services that have been used in practice that facilitate social support. An online survey aimed to gain an overview of all hospice day services that facilitated social support for adults outside of their own homes.MethodsAn online survey was distributed via email to people involved in managing hospice day services. Questions were asked on hospice characteristics, including staff and volunteer roles. Respondents were asked to identify services they felt offered social support to patients. Data collection took place between August 2017 and May 2018.ResultsResponses were received from 103 hospices in the UK and ROI (response rate 49.5%). Results provide an overview of hospice day and outpatient services that offer social support to patients. These are: multi-component interventions, activity groups, formal support groups, befriending, and informal social activities. Multi-component interventions, such as palliative day care, were the most commonly reported. Their stated aims tend to focus on clinical aspects, but many survey respondents considered these multicomponent interventions to be the ‘most social’ service at their hospice. The survey also identified a huge variety of activity groups, as well as formal therapeutic support groups. Informal ‘social-only’ activities were present, but less common. Over a third of all the services were described as ‘drop in’. Most responding hospices did not routinely use patient reported outcome measures in their ‘most social’ services.ConclusionsThe survey documents hospice activity in facilitating social support to be diverse and evolving. At the time of data collection, many hospices offered multiple different services by which a patient might obtain social support outside of their own home and in the presence of other patients.

Patients’ experiences of transfers between care settings in palliative care: an interview study

Palliative patients often suffer from serious illness and commonly move between care settings. As such, transfers of patients can take place between acute hospital based care and community based care in both directions. The involvement of multiple caregivers providing care across settings causes fragmentation of care. To address this challenge and to optimize coordination and continuity of care, we explored experiences of palliative patients regarding their transfers between care settings and the perceived role of the treating family physician. Qualitative interview study of 20 palliative patients. Participating settings were the hospital and hospitals' palliative care unit, the nursing home, the home care setting and the palliative day care centre. A constant comparative method was used to analyze data. Although the home was considered the preferred residence, perceptions of unsafety arose in cases of increased symptom burden and when the organization of home care was insufficiently geared to the patients' needs. Both the nursing home and the palliative care unit offered safety and good care when home residence became unfeasible. Upon hospital admission, experiences did not always meet expectations, varying significantly depending on the hospital, type of ward and reason for hospitalization. Perceived issues regarding hospital discharge were premature release, lack of seamless care and home care insufficiently tailored to the patients' needs. The family physician's role assignment ranged from pivotal to minimal. Patients especially expected their family physician to guarantee continuity of care. Home is considered the preferred place of long-term care, as long as it is perceived a safe environment. A person-centered approach, focusing on the patient's complex needs, is not consistently implemented in palliative care settings. Barriers in inter-professional collaboration need to be tackled to provide high quality care across settings.

An analysis of the construct validity and responsiveness of the ICECAP-SCM capability wellbeing measure in a palliative care hospice setting

BackgroundFor outcome measures to be useful in health and care decision-making, they need to have certain psychometric properties. The ICECAP-Supportive Care Measure (ICECAP-SCM), a seven attribute measure (1. Choice, 2. Love and affection, 3. Physical suffering, 4. Emotional suffering, 5. Dignity, 6. Being supported, 7. Preparation) developed for use in economic evaluation of end-of-life interventions, has face validity and is feasible to use. This study aimed to assess the construct validity and responsiveness of the ICECAP-SCM in hospice inpatient and outpatient settings.MethodsA secondary analysis of data collated from two studies, one focusing on palliative care day services and the other on constipation management, undertaken in the same national hospice organisation across three UK hospices, was conducted. Other quality of life and wellbeing outcome measures used were the EQ-5D-5L, McGill Quality of Life Questionnaire – Expanded (MQOL-E), Patient Health Questionnaire-2 (PHQ-2) and Palliative Outcomes Scale Symptom list (POS-S). The construct validity of the ICECAP-SCM was assessed, following hypotheses generation, by calculating correlations between: (i) its domains and the domains of other outcome measures, (ii) its summary score and the other measures’ domains, (iii) its summary score and the summary scores of the other measures. The responsiveness of the ICECAP-SCM was assessed using anchor-based methods to understand change over time. Statistical analysis consisted of Spearman and Pearson correlations for construct validity and paired t-tests for the responsiveness analysis.ResultsSixty-eight participants were included in the baseline analysis. Five strong correlations were found with ICECAP-SCM attributes and items on the other measures: four with the Emotional suffering attribute (Anxiety/depression on EQ-5D-5L, Psychological and Burden on MQOL-E and Feeling down, depressed or hopeless on PHQ-2), and one with Physical suffering (Weakness or lack of energy on POS-S). ICECAP-SCM attributes and scores were most strongly associated with the MQOL-E measure (0.73 correlation coefficient between summary scores). The responsiveness analysis (n = 36) showed the ICECAP-SCM score was responsive to change when anchored to changes on the MQOL-E over time (p < 0.05).ConclusionsThis study provides initial evidence of construct validity and responsiveness of the ICECAP-SCM in hospice settings and suggests its potential for use in end-of-life care research.

Theorising the hospice gaze: A Foucauldian collaborative ethnography of a palliative day care service

Foucault's medical gaze has only been minimally applied to palliative care through the analysis of key policy documents. This paper develops the conceptualisation of Foucault's medical gaze using empirical data gathered from a group ethnography of a hospice daycare centre. Using Foucault's medical gaze as a theoretical aporia we conceptualise the “hospice gaze”. We argue the hospice gaze is the antithesis of the Foucauldian medical gaze, suggesting it operates reflexively so that professionals adapt to patients, rather than patients to professionals; that it is directed towards enabling patients and their loved ones to narrate severe illness and death in ways that develop more patient-centred narratives; and, structures the processes of care in direct resistance to the neoliberalisation of healthcare by engaging in slow practices of care with patient's bodies and minds. Finally, key to all of this is how the hospice gaze manages the spaces of care to ensure that it always and already appears slow to the patients. Therefore, the hospice gaze ensures a (re)distribution of power and knowledge that minimises the corrosive qualities of busyness and maximises the ethical potentials of slowness. We conclude by arguing that the operation of the hospice gaze should be examined in other settings where palliative care is practiced such as in-patient and home care services.

Exploring the status of and demand for palliative day-care clinics and day hospices in Germany: a protocol for a mixed-methods study

BackgroundTo date, the establishment and development of palliative day-care clinics and day hospices in Germany have been completely unsystematic. Research is needed to gain insight into these services and to ensure their accessibility and quality. Accordingly, the ABPATITE research project aims at: (1) identifying the characteristics of palliative day-care clinics and day hospices in Germany, (2) determining demand and preferences for these services, and (3) proposing recommendations (with expert agreement) for the needs-based establishment and development of these services.MethodsThe research is a multi-perspective, prospective, observational study following a mixed-methods approach across three study phases. In phase 1a, qualitative expert interviews will be conducted to capture the facility-related characteristics of palliative day-care clinics and day hospices in Germany; the results will feed into a questionnaire sent to all such institutions identified nationwide. In phase 1b, a questionnaire will be sent to local statutory health insurance providers, to gain insight into their contracts and accounting and remuneration models. In phase 2a, a service preference survey will be conducted with patients and family caregivers. In phase 2b, semi-structured interviews with management staff will explore the factors that promote and hinder the provision of service. In phase 2c, the external perspective will be surveyed via focus groups with local actors involved in hospice and palliative care. In phase 3a, focus groups with representatives from relevant areas will be conducted to develop recommendations. Finally, in phase 3b, recommendations will be agreed upon through a Delphi survey.DiscussionThe empirically developed recommendations should enable the establishment and development of day hospices and palliative day-care clinics in Germany to be better managed, more oriented to actual demand, and more effectively integrated into wider health care services. Importantly, the findings are expected to optimize the overall development of hospice and palliative care services.Trial registration:The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00021446; date of registration: April 20, 2020). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.

The meaning of art in palliative care from the end users’ perspective

ABSTRACT Background Research concerning art initiatives within palliative care mainly addresses the artist’s perspective. Our study brings in the end users’ voices. Method We conducted ethnographic research in the framework of a program that invited professional artists to work at a Belgian palliative and supportive day care center. We examined how the so-called guests (i.e. end users) valued and experienced the artists’ presence and activities. Results Guests mentioned a positive influence on their personal and social well-being. They also indicated a cultural and artistic value. Art activities offered them something new and unexpected and took them to a different place. Guests felt challenged by activities when their well-being was negatively provoked, when they experienced activities as incomprehensible or in case of logistic hassle. Conclusions Art activities in palliative care settings must be adapted to the interests and abilities of the end users and supported by an educational and logistic framework.

The added value of palliative day care centres: A full-population cross-sectional survey among clients and their family caregivers in Flanders, Belgium.

In addition to palliative care delivery at home or in hospital, palliative day care centres occupy an in-between position in palliative care. In palliative day care centres, multidisciplinary teams provide holistic care and support for people with (chronic) life-limiting conditions, or clients, in a homely surrounding, allowing them to remain living at home while attending a specialist palliative care service. This study aims to evaluate palliative day care centres from a user perspective. We conducted a full-population cross-sectional survey of clients (N=86) and their family caregivers (N=63) in all five palliative day care centres in Flanders, Belgium from January until December 2019. We used validated instruments supplemented with self-developed items to measure participants' reasons for use, support provided, unmet support needs and added value to other (palliative) care services across palliative care domains, i.e., physical, psychological, social and spiritual care. Response rate was 77% for clients and 81% for family caregivers. The most often indicated reasons for use were that the client needs social contacts (clients: 73%, caregivers: 65%), to enable the client to live at home as long as possible (resp. 58%, 55%) and to reduce the family caregiver's mental burden (resp. 42%, 65%). Three out of four family caregivers felt better able to combine daily activities with caring for the client (77%) and felt better able to perform their family care-giving tasks (77%) because the client attends the palliative day care centre. Thirty-six per cent of clients had received support for social needs exclusively in the palliative day care centre and not from any professionals outside palliative day care. Palliative day care centres seem to be of added value for those care domains to which often less attention is paid in other settings, particularly social and emotional support, both for clients and family caregivers.

Day hospital, a link specific to the patient

In the palliative care day hospital of Marie-Galène health centre in Bordeaux, care is provided in two different ways: through the interdisciplinary individualday hospital and the collective day hospital in the form of group days. In both cases, the palliativeapproach guides the team's reflection regarding the anticipation of complex situations and qualityof life. The health crisis has had a significant impact on the activity of this service.

Live Well, Die Well: The Development of an Online, Arts-Based Palliative Care Programme in the Shadow of the COVID-19 Pandemic.

The Covid-19 crisis led to an increase in the 'total pain' of many terminally ill patients who faced a reduction in support, due to the temporary closure of front-line palliative day therapy services. A hospice volunteer, I instigated an online day therapy programme for patients previously attending face-to-face day therapy. Participant feedback revealed the importance of providing a space for ongoing peer support for participants' changing sense of identity, an issue for time-limited day therapy programmes. An exploration of key concepts associated with palliative care established the multiple connections between such changing identity and arts-based approaches to living well. This article charts how I used this understanding to develop an alternative, online arts-based support programme, Live well, die well. It explores the links between ongoing mutual support, arts-based activity and the reactions to a shifting identity in patients with a life-limiting illness.

Association between attendance at a specialist palliative care day unit and improvement in patient symptoms and quality of life.

Specialist palliative day care is an area of palliative care which has a notable scarcity of research. Evidence is needed on the role of palliative day care to improve patients' quality of life and symptom management, while recognising the different patient cohorts that use the service. To determine the symptoms and quality of life of the patient cohort that are affected by the completion of a full therapeutic cycle (8 to 9 weeks) at a specialist palliative care day unit (SPCDU). A retrospective cohort study was carried out from January 2016 to December 2017. Patient related outcome measures (PROMs) were collected as part of routine clinical paperwork at admission and discharge, and these were used to determine symptoms and quality of life pre-attendance and on completion of an 8 to 9 week therapeutic cycle at the SPCDU. Descriptive analysis demonstrated improvement across the many symptoms that were analysed. Quality of life analysis also established improvement. Statistically significant difference was achieved in several areas. Total physical symptoms (p value=.009) confirmed the positive impact attendance at SPCDU has on physical symptoms. Specific symptoms which displayed a statistically significant difference included: poor appetite (p value=.002), weakness (p value=.03) and the anxiety felt by family/friends (p value=.029). The quality of a patient's life also displayed statistically significant difference (p value=.000). This study demonstrates that attendance at a SPCDU may positively impact a patients' symptoms and quality of life. A more uniform national approach to specialist palliative day care delivery, alongside multi-setting research, may further bolster the image of palliative day care. This will improve referrals to and occupancy of SPDCUs and benefit the palliative patient in the community.

Candidates and candidacy: Patient, carer and staff perceptions of referral to a specialist palliative day unit

Background Specialist palliative day care can support palliative caregiving for those living in the community with advanced disease. However, how people access specialist palliative day care and why is unclear. This study therefore aims to explore the referral experiences of patients, carers and staff in the context of a specialist palliative day care unit. Design Qualitative study using constant comparative analysis to explore referral experiences to a UK specialist palliative day unit through one-to-one interviews with patients (n=15), family carers (n=6) and staff (n=10) including nurses, medics and managers and focus groups with (n=3 and n=7) specialist palliative care nurses. Findings The three datasets (staff, patients and carers) provide a triangulation of perspectives captured within the core category of ‘managing referral’ and presented as six sub-themes. Staff described referral as an intuitive interaction involving ‘looking for openings’ and ‘getting people through the door’. Patients familiar with the service were persistent in ‘shouting for help’ but most regarded referral with dread, only ‘giving it a go’ following crisis. For family carers referral presented ‘time out/respite’ but also the ‘end-of-the-line’. Conclusions Unclear understandings of services as well as uncertain professional, patient and carers notions of candidacy influence referral to specialist palliative day care.

Challenges for palliative care day services: a focus group study

BackgroundPalliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams.MethodsA descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically.ResultsFour key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services’ effectiveness and value for money was highlighted.ConclusionsManagement and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service.

Exploring the costs, consequences and efficiency of three types of palliative care day services in the UK: a pragmatic before-and-after descriptive cohort study

BackgroundPalliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland.MethodsPeople who had been referred to PCDS were recruited between June 2017 and September 2018. A pragmatic before-and-after descriptive cohort study design analysed data on costs and outcomes. Data on costs were collected on health and care use in the 4 weeks preceding PCDS attendance using adapted versions of the Client Service Receipt Inventory (CSRI). Outcomes, cost per attendee/day and volunteer contribution to PCDS were also estimated. Outcomes included quality of life (MQOL-E), health status (EQ-5D-5L) and capability wellbeing (ICECAP-SCM).ResultsThirty-eight attendees were recruited and provided data at baseline and 4 weeks (centre 1: n = 8; centre 2: n = 8, centre 3: n = 22). The cost per attendee/day ranged from £121–£190 (excluding volunteer contribution) to £172–£264 (including volunteer contribution) across the three sites. Volunteering constituted between 28 and 38% of the total cost of PCDS provision. There was no significant mean change at 4 week follow-up from baseline for health and care costs (centre 1: £570, centre 2: -£1127, centre 3: £65), or outcomes: MQOL-E (centre 1: − 0.48, centre 2: 0.01, centre 3: 0.24); EQ-5D-5L (centre 1: 0.05, centre 2: 0.03, centre 3: − 0.03) and ICECAP-SCM (centre 1:0.00, centre 2: − 0.01, centre 3: 0.03). Centre costs variation is almost double per attendee when attendance rates are held constant in scenario analysis.ConclusionsThis study highlights the contribution made by volunteers to PCDS provision. There is insufficient evidence on whether outcomes improved, or costs were reduced, in the three different service configurations for PCDS. We suggest how future research may overcome some of the challenges we encountered, to better address questions of cost-effectiveness in PCDS.

Barriers to advance care planning: a qualitative study of seriously ill Chinese patients and their families

BackgroundAdvance care planning (ACP) facilitates identification and documentation of patients’ treatment preferences. Its goal aligns with that of palliative care – optimizing quality of life of seriously ill patients. However, concepts of ACP and palliative care remain poorly recognized in Chinese population. This study aims at exploring barriers to ACP from perspective of seriously ill patients and their family caregivers.MethodsThis is a qualitative study conducted in a Palliative Day Care Centre of Hong Kong between October 2016 and July 2017. We carried out focus groups and individual interviews for the seriously ill patients and their family caregivers. A semi-structured interview guide was used to explore participants’ experiences and attitudes about ACP. Qualitative content analysis was adopted to analyze both manifest content and latent content.ResultsA total of 17 patients and 13 family caregivers participated in our study. The qualitative analysis identified four barriers to ACP: 1) limited patients’ participation in autonomous decision making, 2) cognitive and emotional barriers to discussion, 3) lack of readiness and awareness of early discussion, and 4) unprepared healthcare professionals and healthcare system.ConclusionsParticipations of seriously ill patients, family caregivers and healthcare workers in ACP initiation are lacking respectively. A series of interventions are necessary to resolve the barriers.

Navigating the path to care and death at home—it is not always smooth: a qualitative examination of the experiences of bereaved family caregivers in palliative care

AbstractBackground:Care and death at home are generally thought to be beneficial for families. However, there may be bereavement experiences and support needs, which are specific to family caregivers providing end-of-life care in their home. The Palliative Care Home Support Program in New South Wales, Australia, provides end-of-life care packages for patients who wish to die at home. These packages provide up to 48 hours of specialized supportive palliative home-based care, day or night, by community workers specifically trained for the task, working as part of existing community palliative care multidisciplinary teams. Care packages may include assistance with personal hygiene, carer respite, and domestic assistance.Methods:As part of a larger longitudinal mixed-methods study, 28 bereaved caregivers who experienced a home death and/or received the care packages undertook in-depth interviews. Narrative thematic analysis was undertaken to explore their experiences at 6 months post death.Results:Twenty-eight caregivers were experienced or planned for a home death and 21 had a package in place. Five themes were identified: “the achievements of a home death”; “taking on the mantle”; “the burden of witnessing the dying process”; “home as our space/their space”; and “resistance or submission to the ideals of best place of care for family caregivers.”Conclusions:Bereaved caregivers provided accounts of their interactions with health care providers depicting a complex relationship with the care system. Some families struggled to manage boundaries of home and private space as care needs escalated. Ideals about best care and home death are sometimes conflicted, without easy consensus between patient, family, and service providers.Significance:Models of care based on assumptions that home death is straightforwardly beneficial may cause unintended consequences. For future policy, providing care in the private space of the home requires close attention to family concerns and outcomes.