Community Palliative Care Services Research Articles

Impact of the COVID-19 pandemic on the use of an inpatient and community palliative care service.

The COVID-19 pandemic disrupted the usual provision of healthcare, changing models of care, clinical loads, service provision and patient behaviour. This study assesses the impact of COVID-19 on community and inpatient palliative care service provision. A retrospective audit and comparison of service use conducted over two defined periods, before and during the COVID-19 pandemic, 2019-2020. The community palliative care service had a 9% increase in referrals, with a lower proportion of referrals (2.4%) from subacute/palliative care hospitals during the COVID-19 pandemic. Provision of care during the pandemic included less face-to-face contact with patients (24.1% versus 30.2% before), and markedly more contact with patients via videoconference (2.1% versus 0.1% before the pandemic). The community specialist palliative care service was busier during the pandemic period, and experienced a shift in mode of care delivery, while the inpatient unit experienced no difference in service use.

1953 Improving access to community palliative care by raising awareness of services, indications for referral and referral pathways

Abstract Introduction 40% of 1056 patients discharged from our acute geriatrics ward met Gold Standards Framework (GSF) Prognostic Indicator Guidance for Recognition of Patients approaching End of Life (EOL). 92% were not referred to Community Palliative Care (CPC) services, meaning patients’ needs were not fully met and other services over-stretched. This project aimed to achieve a 10% reduction in missed referrals. Methods Highlighting the missed referral rate enabled engagement of key stakeholders including ward and palliative care multidisciplinary teams. This 12-month project comprised four PDSA Cycles: 1. Raising awareness of GSF and CPC through ward-based teaching; 2. Development of posters outlining referral criteria and pathways; 3. Hospital-wide survey of doctors’ understanding of treating patients approaching EOL, with real-time feedback on GSF and CPC; 4. Formal departmental and year-group teaching sessions. The outcome measure was the percentage of patients meeting GSF criteria who were not referred to CPC, as determined by retrospective analysis of discharge letters. Readmission rate was calculated as a marker of quality of life (QoL) and to assess the impact of missed referrals on the Trust. Results Interventions led to a sustained reduction in missed referrals (72% from 92%). Certain diagnoses are more readily referred, metastatic malignancy for example, 9x more frequently than advanced Parkinson’s. Patients meeting criteria averaged 3 admissions in the preceding year (compared to 1.7). Of those meeting criteria and still alive, patients not referred averaged 1 re-admission within 6 months compared to 0.3 when referred. Conclusions Missed CPC referrals impact patient QoL and increase the burden on acute inpatient services. Significant benefits could be seen if these findings are extended to other inpatient wards. There is also a need for education about the palliative stage of non-malignant diseases such as Dementia and Parkinson’s. Future steps include technology-based active screening of inpatients to facilitate referrals.

Prognosis Discussion and Referral to Community Palliative Care Services in Patients with Advanced Pancreatic Cancer Treated in a Tertiary Cancer Centre.

Advanced pancreatic cancer is associated with a poor prognosis, often less than 1 year. Honest prognosis discussions guide early community palliative care services input, facilitating timely advance care planning and improving quality of life. The aims were to assess if patients were offered prognosis discussions and community palliative care services referral. A retrospective analysis of consecutive case-notes of new advanced pancreatic cancer patients was conducted. Chi-squared test assessed the association with prognosis discussion and community palliative care services referral. In total, 365 cases (60%) had a documented prognosis discussion at any time-point in the treatment pathway; 54.4% during the first appointment. The frequency of prognosis discussion was greater with nurse clinician review at first appointment (p < 0.001). In total, 171 patients (28.1%) were known to community palliative care services at the first appointment. Of those not known, 171 (39.1%) and 143 (32.7%) were referred at this initial time-point or later, respectively. There was a significant association between the referral to community palliative care services at first appointment and the reviewing professional (this was greatest for nurse clinicians (frequency 65.2%)) (p < 0.001), and also if reviewed by clinical nurse specialist at first visit or not (47.8% vs. 35.6%) (p < 0.01). Prognosis discussions were documented in approximately two-thirds of cases, highlighting missed opportunities. Prognosis discussion was associated with clinician review and was most frequent for nurse clinician, as was referral to community palliative care services. Clinical nurse specialist review increased referral to community palliative care services if seen at the initial visit. Multi-disciplinary review, specifically nursing, therefore, during the first consultation is imperative and additive. It should be considered best practice to offer and negotiate the content and timing of prognosis discussions with cancer patients, and revisit this offer throughout their treatment pathway. Greater attention to prognosis discussion documentation is recommended.

Understanding priorities of care: An assessment of FAMCARE-2 satisfaction surveys and thematic analysis in community palliative care

Background The palliative care sector currently faces cumulative challenges and finite resources to meet population needs. To optimise the effectiveness and efficiency of palliative care services, it is necessary to understand care needs and aspects prioritised by patients and families. Deepening our understanding of their experience and preferences will direct the sector’s limited resources toward achieving optimal care in the place of choice. Aim To assesses patient and carer satisfaction of a community palliative care service and to identify common themes that impact the experience of care, and the aspects of care that are important to them. Method A single-centre, prospective study exploring patient and carer satisfaction of two cohorts (patients receiving standard palliative care, or additional and intensive care support) via the Bupa Palliative Care Choices (BPCC) programme. A tool specifically designed to measure satisfaction with palliative care was utilised. Survey comments in the BPCC cohort were analysed thematically. Results Survey response rate was 35% and satisfaction results across all domains were high in both cohorts (very satisfied/satisfied >90%). Thematic analysis of comments identified priorities of care being emotional support for the patient and family, availability of the palliative care team, a focus on patient dignity, and provision of information relating to the patient’s condition and illness trajectory. Conclusion This study provides insights into patient and family priorities of care and identifies areas of need as emotional support, availability of and access to 24-hour care, respecting patient’s dignity, and transparent discussions regarding the patient’s condition and illness trajectory.

The experiences of patients with advanced heart failure, family carers, and health professionals with palliative care services: a secondary reflexive thematic analysis of longitudinal interview data

BackgroundPatients with heart failure have significant palliative care needs, but few are offered palliative care. Understanding the experiences of delivering and receiving palliative care from different perspectives can provide insight into the mechanisms of successful palliative care integration. There is limited research that explores multi-perspective and longitudinal experiences with palliative care provision. This study aimed to explore the longitudinal experiences of patients with heart failure, family carers, and health professionals with palliative care services.MethodsA secondary analysis of 20 qualitative three-month apart interviews with patients with heart failure and family carers recruited from three community palliative care services in the UK. In addition, four group interviews with health professionals from four different services were analysed. Data were analysed using ‘reflexive thematic’ analysis. Results were explored through the lens of Normalisation Process Theory.ResultsFour themes were generated: Impact of heart failure, Coping and support, Recognising palliative phase, and Coordination of care. The impact of heart failure on patients and families was evident in several dimensions: physical, psychological, social, and financial. Patients developed different coping strategies and received most support from their families. Although health professionals endeavoured to support the patients and families, this was sometimes lacking. Health professionals found it difficult to recognise the palliative phase and when to initiate palliative care conversations. In turn, patients and family carers asked for better communication, collaboration, and care coordination along the whole disease trajectory.ConclusionsThe study provided broad insight into the experiences of patients, family carers, and health professionals with palliative care. It showed the impact of heart failure on patients and their families, how they cope, and how they could be supported to address their palliative care needs. The study findings can help researchers and healthcare professionals to design palliative care interventions focusing on the perceived care needs of patients and families.

Withdrawal of mechanical ventilation in amyotrophic lateral sclerosis patients: a multicenter Italian survey

BackgroundLaw 219/2017 was approved in Italy in December 2017, after a years-long debate on the autonomy of healthcare choices. This Law, for the first time in Italian legislation, guarantees the patient’s right to request for withdrawal of life-sustaining treatments, including mechanical ventilation (MV).ObjectiveTo investigate the current status of MV withdrawal in amyotrophic lateral sclerosis (ALS) patients in Italy and to assess the impact of Law 219/2017 on this practice.MethodsWe conducted a Web-based survey, addressed to Italian neurologists with expertise in ALS care, and members of the Motor Neuron Disease Study Group of the Italian Society of Neurology.ResultsOut of 40 ALS Italian centers, 34 (85.0%) responded to the survey. Law 219/2017 was followed by an increasing trend in MV withdrawals, and a significant increase of neurologists involved in this procedure (p 0.004). However, variations across Italian ALS centers were observed, regarding the inconsistent involvement of community health services and palliative care (PC) services, and the intervention and composition of the multidisciplinary team.ConclusionsLaw 219/2017 has had a positive impact on the practice of MV withdrawal in ALS patients in Italy. The recent growing public attention on end-of-life care choices, along with the cultural and social changes in Italy, requires further regulatory frameworks that strengthen tools for self-determination, increased investment of resources in community and PC health services, and practical recommendations and guidelines for health workers involved.

#6672 THE DEVELOPMENT OF A COMMUNITY-NEPHROLOGY, MULTI-DISCIPLINARY SERVICE

Abstract Background and Aims The Walsall Together clinical and operational leads constructed a collaborative initiative between nephrology and community services. Driven to provide multi-agency, patient-focused care. The aim of the community nephrology MDT service is to identify and optimally manage individuals with acute nephrological presentations and optimally manage individuals with secondary complications of chronic kidney disease (CKD) at home, while maximally utilising outpatient community services to prevent hospital admissions. Method Nephrology and community teams, including rapid-response, complex-case management, enhanced-care and frailty teams devised a MDT service for individuals with either community-acquired acute kidney injury (AKI) or complications of CKD. The MDT can consist of; a nephrologist, community-CKD nurse, a member from each of the above teams, a community pharmacist and an MDT coordinator. Patients are identified from the MDT attendee's caseload, from the community heart failure and the community geriatrician patient cohort. A weekly MDT meeting is held on Microsoft Teams, this allows for efficient working across a large geographical area. The MDT coordinator is essential for the efficient performance of the community nephrology MDT. They are responsible for: organising meetings, producing minutes, requesting laboratory investigations (including urine album in creatinine ratio), chasing results from clinical investigations and finally ensuring that the actions generated from the MDT are completed. The community pharmacist is an independent prescriber and immediately actions any medication changes. The community teams consist of advanced clinical practitioners or band 7/above nurse prescribers. All clinical staff perform home visits and fully utilise outpatient services including ambulatory-care-unit services for medical assessment, urgent imaging and intravenous electrolyte replacement. The medical-day-case unit services for the administration of blood transfusions. The community outpatient access team services for intravenous iron therapy and antibiotic therapy. Results Currently, the community nephrology MDT is actively managing over 60 patients. This excludes patients who have been successfully managed and discharged from the community MDT service. The multimorbid, patient cohort with recurrent hospital admissions appear to have benefited the most. A reduction and/or cessation is noted, in hospital admissions after the introduction of interventions from the community nephrology MDT. The service allows the nephrology team to easily monitor and manage housebound, individuals with CKD. This reduces the number of admissions related to secondary complications of CKD. Furthermore, by managing acute illness in the community, the service reduces the number of individuals admitted to hospital with community acquired AKI. Finally, in the unfortunate event of terminal, irreversible pathology, the MDT service allows for advanced care planning and referral to community palliative care services. Conclusion The Walsall Together collaboration has demonstrated that utilising a multi-agency approach to managing acute and chronic renal disease, can result in a reduction in hospital admissions. Furthermore, the cooperative multi-speciality approach, has led to improved monitoring and management of housebound individuals with CKD.

Family carers' administration of injectable medications at the end of life: a service evaluation of a novel intervention.

Timely and safe administration of injectable medications for patients at home is vital in optimally managing distressing symptoms in the final days of life. This article discusses a service evaluation of family carers' (including close friends) administrating subcutaneous end-of-life medications. The procedure was not intended to become normal care, rather the exception when appropriate and needed, with 24/7 skilled support from community nursing and palliative care services. A service evaluation of the procedure was undertaken in rural and urban areas in the South East of England. The procedure ran over 6 months and used detailed processes with recruitment criteria to mitigate risk of harm. In total, 11 patients participated with their family carers, including five carers with experience in healthcare roles. Of the 11 family carers, 10 were able to administer injections safely with structured training and support in place. Patients received timely symptom relief and their family carers were able to support loved ones by administering injectable medications rapidly without waiting for a nurse to arrive. This was particularly welcomed in more rural areas where waiting times were greater due to the large geographical area covered and limited staff availability during out-of-hours periods. The findings informed a carefully monitored wider rollout and ongoing evaluation in adult community nursing services in the NHS Trust.

Implementing partnership working to enhance the care of the acutely unwell child in children's community palliative care services.

Children with complex care needs are at an increased risk of developing serious illness which could lead to sepsis. Many children receiving palliative care do not have a completed advance care plan identifying their wishes for ongoing care, which means they would require active intervention if they were to become acutely unwell. Sepsis is the immune system's overreaction to an infection or injury and about 25,000 children are admitted to hospital with sepsis in the UK each year. Early recognition of the acutely unwell child and escalation of concerns from the community to an acute care setting is required to manage and treat a child who is deteriorating. This article describes a project of three phases which aimed to explore the assessment tools available to support recognition and screening of children who became acutely unwell while accessing community palliative care services. It also identifies the importance of working together in partnership with external organisations and acknowledges the achievements of all of the partners involved.

Deliberately Dying Is an Appropriate Example to Challenge Current Definitions of the Concept of Occupation

Deliberately Dying Is an Appropriate Example to Challenge Current Definitions of the Concept of Occupation

209 THE ADVANCED NURSE PRACTITIONER CANDIDATE: PALLIATIVE CARE IN END-STAGE DEMENTIA UTILISING A CARE COORDINATED APPROACH IN THE COMMUNITY SETTING

Abstract Background Palliative care in the context of dementia is a relatively new concept. Over recent years, there has been an increased emphasis on extending palliative care for those with dementia worldwide, supported by the 2014 white paper from the European Association of Palliative Care (EAPC) defining optimal palliative care for people with dementia. Individualized care coordination for older adults in the community improves high quality care and sets the scene for this care-coordinated approach initiative led by the Advanced Nurse Practitioner candidate (ANPc) Methods Developing a robust pathway of care in partnership with community palliative care service will enhance the support given to achieve optimal and quality driven palliative and end of life care outcomes. The pathways achieved involve a three-step integrated pathway structure. Step one involves care intervention by the ANPc, step 2 a care coordinated approach with the ANPc and Community Palliative Care Team (CPCT) and step 3 CPCT with collaborative interactions with the ANPc. Inclusion criteria include patients with end stage dementia who have reached a FAST scale of seven or over. All patients accepted onto this pathway must reside within the healthcare area set out and experience at least one or more symptoms resulting from their dementia. Results Results to date have shown how this pathway has achieved significant care interventions meeting the need of people living with dementia at end stages of their journey in the community setting. Additionally, families have indicated the overall satisfaction of the service and with significant reductions in Carer stress. Conclusion Research indicates that individualized care coordination in the community is crucial to optimise quality care interventions, which this pathway achieves.

Virtual home-based palliative care during COVID-19: A qualitative exploration of the patient, caregiver, and healthcare provider experience

Background: Due to the COVID-19 pandemic, many community palliative healthcare providers shifted from providing care in a patient’s home to providing almost exclusively virtual palliative care, or a combination of in-person and virtual care. Research on virtual palliative care is thus needed to provide evidence-based recommendations aiming to enhance the delivery of palliative care during and beyond the pandemic. Aim: To explore the experiences and perceptions of community palliative care providers, patients and caregivers who delivered or received virtual palliative care as a component of home-based palliative care during the COVID-19 pandemic. Design: Qualitative study using phone and video-based semi-structured interviews. Data were analyzed using thematic analysis. Setting/participants: A total of 37 participants, including community palliative care patients/caregivers (n = 19) and healthcare providers (n = 18) recruited from sites in Ottawa and Toronto, Ontario, Canada. Results: Overall, participants preferred in-person palliative care compared to virtual care, but suggested virtual care could be a useful supplement to in-person care. The findings are presented in three main themes: (1) Impact of COVID-19 pandemic on community palliative care services; (2) Factors influencing transition from exclusively virtual model of care back to a blended model of care; and (3) Recommended uses and implementation of virtual palliative care Conclusions: Incorporating virtual palliative care into healthcare provider practice models (blended care models) may be the ideal model of care and standard practice moving forward beyond the COVID-19 pandemic, which has important implications toward organization and delivery of community palliative care services and funding of healthcare providers.

The most important components of out-of-hours community care for patients at the end of life: A Delphi study of healthcare professionals’ and patient and family carers’ perspectives

Background: Community services for palliative patients outside normal working hours are variable and the best evidence-based models of care have not been determined. Aim: To establish expert consensus on the most important components of out-of-hours community palliative care services. Design: Delphi study. The first round listed 68 components generated from systematic literature reviewing, focus groups with healthcare professionals and input from the project’s patient and public involvement advisory group. The components deemed ‘essential’ by over 70% of participants in the first round were refined and carried forward to a second round, asking participants to rank each on a five-point Likert scale (5 highest to 1 lowest). The consensus threshold was median of 4 to 5 and interquartile range of ⩽1. Participants: Community specialist palliative care health professionals, generalist community health professionals and patients and family carers with experience of receiving care out-of-hours at home. Results: Fifty-four participants completed round 1, and 44 round 2. Forty-five components met the threshold as most important for providing out-of-hours care, with highest consensus for: prescription, delivery and administration of medicines; district and community nurse visits; and shared electronic patient records and advance care plans. Conclusions: The Delphi method identified the most important components to provide community palliative care for patients out-of-hours, which are often provided by non-specialist palliative care professionals. The importance placed on the integration and co-ordination with specialist palliative care through shared electronic records and advance care plans demonstrates the reassurance for patients and families of being known to out-of-hours services.

Strengthening Community End-of-Life Care through Implementing Measurement-Based Palliative Care.

The increasing demand for palliative care in New Zealand presents a potential threat to the quality of service delivery. One strategy to overcome this is through the implementation of valid and reliable patient-reported outcome measures. This mixed-methods study aimed to (1) implement measurement-based palliative care (MBPC) in a community palliative care service in Auckland, New Zealand; (2) evaluate the clinical utility of MBPC perceived by clinicians; (3) describe patient characteristics as measured by the Integrated Palliative Care Outcome Scale (IPOS), the Australasian Modified Karnofsky Performance Scale (AKPS), and Phase of Illness (POI); and (4) evaluate the internal consistency of the IPOS. Participants were over 18 years of age from a community outpatient palliative care service. In a phased approach to implementation, healthcare staff were educated on each instrument used for patient assessment. Uptake and internal consistency were evaluated through descriptive statistics. An interpretive descriptive methodology was used to explore the clinical utility of MBPC through semi-structured interviews with seven clinical staff members. Individual patient assessments (n = 1507) were undertaken predominantly on admission, with decreasing frequency as patients advanced through to the terminal phase of their care. Mean total IPOS scores were 17.97 (SD = 10.39, α = 0.78). The POI showed that 65% of patients were in the stable phase, 20% were in the unstable phase, 9% were in the deteriorating phase, and 2% were in the terminal phase. Clinicians reported that MBPC facilitated holistic and comprehensive assessments, as well as the development of a common interdisciplinary language. Clinicians expressed discomfort using the psychosocial and spiritual items. Measurement-based palliative care was only partially implemented but it was valued by staff and perceived to increase the quality of service delivery. Future research should determine the optimal timing of assessments, cultural responsivity for Māori and Pacific patients, and the role of MBPC in decision support for clinicians.

The impact of covid-19 on out-of-hours adult hospice care: an online survey

BackgroundGlobally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services.MethodsA national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n = 150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using descriptive content analysis.ResultsEighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n = 21) and infection control screening (n = 12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff.ConclusionsSurvey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided.

Health care seeking behaviors and perspective on indigenous palliative care among cancer patients in Kenya.

Holistic integrated community palliative care services remain a mirage to cancer patients. Nonetheless, a number of cancer patients are jamming traditional medicinal places seeking therapy. The results of these visits are undocumented. This study explored healthcare seeking behaviors and perspectives on cancer indigenous palliative care among patients visiting traditional health practitioners in Kenya. A cross-sectional study was undertaken through client exit survey. Face to face interviews were conducted using semi-structured questionnaires with all consenting cancer patients exiting mapped outlets. Data was analyzed using Statistical Package for Social Science Version 22.0. A total of 433 respondents were interviewed and the majority were female 59.6%, Christians 97.2%, married 89.8% and educated 85.7%. Their mean age was 48.25 ± 15. 58. Education, sex and religion were significantly associated with perceived improvement. The predominant cancer types were breast cancer (22.4%); throat (14.8%), prostate (12.9%), bone (12.5%), cervical (9.9%), stomach (6.0%) and skin cancer (5.1%). The most frequently used traditional medicine was herbal medicine that was driven by unresponsive conditions (42.2%), inaccessible biomedical services (18.8%) and yearning for second opinion (18%) over a condition. Seventy six percent of the respondents reported improved and prolonged quality of life. 78.2% reported improved eating, drinking, standing, walking and doing light duties alone. Patients felt healthier, hopeful, happier, confident and bonded to their families. Use of indigenous palliative care is predominant to all major cancer conditions and driven by the quest for cure, successful stories, trustworthiness and beliefs, previous experience and avoiding medical procedures such as surgery.

Mobile technology and delegated work in specialist community services: the EnComPaSS Integration project

ObjectivesThe current UK healthcare workforce crisis is particularly severe in community services. A key limitation with traditional service-delivery models is the reliance on practitioners with levels of training and experience...

‘We couldn't have managed without your team’: A collaborative palliative care response to the COVID‐19 pandemic in residential aged care

The global COVID‐19 pandemic has challenged healthcare, aged care and palliative care provision in ways previously unimaginable. In Australia, this has been felt particularly amongst our most vulnerable members of society, those residing in residential aged care. Currently representing the majority (75%) of COVID‐19 deaths and health‐care worker infections, this vulnerable sector has borne the greatest impact. A collaborative response comprising a tertiary hospital palliative care outreach service, residential InReach geriatric service and a community palliative care service effectively delivered comprehensive and timely specialist care to residents infected with COVID‐19. Daily videoconferencing rounds were efficient, minimised infection risk and facilitated family members attending virtually during patient assessments and care planning discussions. This model was both reactive and proactive and importantly scalable should further infective outbreaks occur in Australasian residential aged care facilities.

Enhancing a community palliative care service with telehealth leads to efficiency gains and improves job satisfaction

Telepalliative care services enable clinicians to provide essential palliation services to people with a life-limiting illness in or closer to home. This study aims to explore the costs, service activity and staff experiences resulting from the introduction of telehealth in a community palliative care service in Queensland, Australia. Pre- and post-activity and cost data from the 2016–2017 and 2019–2020 financial years were examined and staff members interviewed. Accounting for inflation and standard wage increases, the labour costs before and after the addition of telehealth were approximately equal. There were small variations in non-labour costs, but these were not directly attributable to the expansion of the telehealth services. Overall, the service activity increased by 189% for standard doctor and nurse consultations, due to the increased efficiency of telehealth compared to the previous outreach (travel) model. Thematic analysis of the staff interview data generated an overarching theme of Increased Job Satisfaction which staff attributed to the patient-centred nature of the telepalliative care service, the increased peer support and increased professional development. Compared with the traditional in-person service, the new telehealth-supported model resulted in equivalent costs, greater efficiency by allowing palliative care to reach more patients and improved staff job satisfaction.

Healthcare professionals\u2019 perspectives of patient and family preferences of patient place of death: a qualitative study

BackgroundHome death is one of the key performance indicators of the quality of palliative care service delivery. Such a measure has direct implications on everyone involved at the end of life of a dying patient, including a patient’s carers and healthcare professionals. There are no studies that focus on the views of the team of integrated inpatient and community palliative care service staff on the issue of preference of place of death of their patients. This study addresses that gap.MethodsThirty-eight participants from five disciplines in two South Australian (SA) public hospitals working within a multidisciplinary inpatient and community integrated specialist palliative care service, participated in audio-recorded focus groups and one-on-one interviews. Data were transcribed and thematically analysed.ResultsTwo major and five minor themes were identified. The first theme focused on the role of healthcare professionals in decisions regarding place of death, and consisted of two minor themes, that healthcare professionals act to: a) mediate conversations between patient and carer; and b) adjust expectations and facilitate informed choice. The second theme, healthcare professionals’ perspectives on the preference of place of death, comprised three minor themes, identifying: a) the characteristics of the preferred place of death; b) home as a romanticised place of death; and c) the implications of idealising home death.ConclusionHealthcare professionals support and actively influence the decision-making of patients and family regarding preference of place of death whilst acting to protect the relationship between the patient and their family/carer. Further, according to healthcare professionals, home is neither always the most preferred nor the ideal place for death. Therefore, branding home death as the ideal and hospital death as a failure sets up families/carers to feel guilty if a home death is not achieved and undermines the need for and appropriateness of death in institutionalised settings.