The effectiveness and cost-effectiveness of hospital-based specialist palliative care for adults with advanced illness and their caregivers

BackgroundSerious illness is often characterised by physical/psychological problems, family support needs, and high healthcare resource use. Hospital‐based specialist palliative care (HSPC) has developed to assist in better meeting the needs of patients and their families and potentially reducing hospital care expenditure. There is a need for clarity on the effectiveness and optimal models of HSPC, given that most people still die in hospital and also to allocate scarce resources judiciously.ObjectivesTo assess the effectiveness and cost‐effectiveness of HSPC compared to usual care for adults with advanced illness (hereafter patients) and their unpaid caregivers/families.Search methodsWe searched CENTRAL, CDSR, DARE and HTA database via the Cochrane Library; MEDLINE; Embase; CINAHL; PsycINFO; CareSearch; National Health Service Economic Evaluation Database (NHS EED) and two trial registers to August 2019, together with checking of reference lists and relevant systematic reviews, citation searching and contact with experts to identify additional studies.Selection criteriaWe included randomised controlled trials (RCTs) evaluating the impact of HSPC on outcomes for patients or their unpaid caregivers/families, or both. HSPC was defined as specialist palliative care delivered by a palliative care team that is based in a hospital providing holistic care, co‐ordination by a multidisciplinary team, and collaboration between HSPC providers and generalists. HSPC was provided to patients while they were admitted as inpatients to acute care hospitals, outpatients or patients receiving care from hospital outreach teams at home. The comparator was usual care, defined as inpatient or outpatient hospital care without specialist palliative care input at the point of entry into the study, community care or hospice care provided outside of the hospital setting.Data collection and analysisWe used standard methodological procedures expected by Cochrane. We assessed risk of bias and extracted data. To account for use of different scales across studies, we calculated standardised mean differences (SMDs) with 95% confidence intervals (CIs) for continuous data. We used an inverse variance random‐effects model. For binary data, we calculated odds ratio (ORs) with 95% CIs. We assessed the evidence using GRADE and created a 'Summary of findings' table.Our primary outcomes were patient health‐related quality of life (HRQoL) and symptom burden (a collection of two or more symptoms). Key secondary outcomes were pain, depression, satisfaction with care, achieving preferred place of death, mortality/survival, unpaid caregiver burden, and cost‐effectiveness. Qualitative data was analysed where available.Main resultsWe identified 42 RCTs involving 7779 participants (6678 patients and 1101 caregivers/family members). Twenty‐one studies were with cancer populations, 14 were with non‐cancer populations (of which six were with heart failure patients), and seven with mixed cancer and non‐cancer populations (mixed diagnoses).HSPC was offered in different ways and included the following models: ward‐based, inpatient consult, outpatient, hospital‐at‐home or hospital outreach, and service provision across multiple settings which included hospital. For our main analyses, we pooled data from studies reporting adjusted endpoint values. Forty studies had a high risk of bias in at least one domain.Compared with usual care, HSPC improved patient HRQoL with a small effect size of 0.26 SMD over usual care (95% CI 0.15 to 0.37; I2 = 3%, 10 studies, 1344 participants, low‐quality evidence, higher scores indicate better patient HRQoL). HSPC also improved other person‐centred outcomes. It reduced patient symptom burden with a small effect size of ‐0.26 SMD over usual care (95% CI ‐0.41 to ‐0.12; I2 = 0%, 6 studies, 761 participants, very low‐quality evidence, lower scores indicate lower symptom burden). HSPC improved patient satisfaction with care with a small effect size of 0.36 SMD over usual care (95% CI 0.41 to 0.57; I2 = 0%, 2 studies, 337 participants, low‐quality evidence, higher scores indicate better patient satisfaction with care). Using home death as a proxy measure for achieving patient's preferred place of death, patients were more likely to die at home with HSPC compared to usual care (OR 1.63, 95% CI 1.23 to 2.16; I2 = 0%, 7 studies, 861 participants, low‐quality evidence). Data on pain (4 studies, 525 participants) showed no evidence of a difference between HSPC and usual care (SMD ‐0.16, 95% CI ‐0.33 to 0.01; I2 = 0%, very low‐quality evidence). Eight studies (N = 1252 participants) reported on adverse events and very low‐quality evidence did not demonstrate an effect of HSPC on serious harms. Two studies (170 participants) presented data on caregiver burden and both found no evidence of effect of HSPC (very low‐quality evidence). We included 13 economic studies (2103 participants). Overall, the evidence on cost‐effectiveness of HSPC compared to usual care was inconsistent among the four full economic studies. Other studies that used only partial economic analysis and those that presented more limited resource use and cost information also had inconsistent results (very low‐quality evidence).Quality of the evidenceThe quality of the evidence assessed using GRADE was very low to low, downgraded due to a high risk of bias, inconsistency and imprecision.Authors' conclusionsVery low‐ to low‐quality evidence suggests that when compared to usual care, HSPC may offer small benefits for several person‐centred outcomes including patient HRQoL, symptom burden and patient satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death). While we found no evidence that HSPC causes serious harms, the evidence was insufficient to draw strong conclusions. Although these are only small effect sizes, they may be clinically relevant at an advanced stage of disease with limited prognosis, and are person‐centred outcomes important to many patients and families. More well conducted studies are needed to study populations with non‐malignant diseases and mixed diagnoses, ward‐based models of HSPC, 24 hours access (out‐of‐hours care) as part of HSPC, pain, achieving patient preferred place of care, patient satisfaction with care, caregiver outcomes (satisfaction with care, burden, depression, anxiety, grief, quality of life), and cost‐effectiveness of HSPC. In addition, research is needed to provide validated person‐centred outcomes to be used across studies and populations

Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation.

BACKGROUND: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. AIM: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement. DESIGN: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. SETTING/PARTICIPANTS: Researchers and public members from a palliative care and rehabilitation research institute, UK. RESULTS: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the 'right' people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the 'right' people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. CONCLUSION: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the National Institute for Health Research (NIHR) Collaboration for Leadership and Applied Health Research and Care South London (NIHR CLAHRC South London) Involvement Activity Funding and Research Capability Funding at King’s College Hospital NHS Foundation Trust. Support was also provided by the NIHR Applied Research Collaboration (ARC) South London at King’s College Hospital Foundation Trust. LJB is supported through a National Institute for Health Research (NIHR) Career Development Fellowship (CDF-2017-10-009). CE is funded by HEE/NIHR Senior Clinical Lectureship. The views expressed in this publication are those of the author(s) and not necessarily those of the funders, the NHS, the National Institute for Health Research or the Department of Health

Hospital-based specialist palliative care compared with usual care for adults with advanced illness and their caregivers: a systematic review

Background Most deaths still take place in hospital; cost-effective commissioning of end-of-life resources is a priority. This review provides clarity on the effectiveness of hospital-based specialist palliative care. Objectives The objectives were to assess the effectiveness and cost-effectiveness of hospital-based specialist palliative care. Population Adult patients with advanced illnesses and their unpaid caregivers. Intervention Hospital-based specialist palliative care. Comparators Inpatient or outpatient hospital care without specialist palliative care input at the point of entry to the study, or community care or hospice care provided outside the hospital setting (usual care). Primary outcomes Patient health-related quality of life and symptom burden. Data sources Six databases (The Cochrane Library, MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO and CareSearch), clinical trial registers, reference lists and systematic reviews were searched to August 2019. Review methods Two independent reviewers screened, data extracted and assessed methodological quality. Meta-analysis was carried out using RevMan (The Cochrane Collaboration, The Nordic Cochrane Centre, Copenhagen, Denmark), with separate synthesis of qualitative data. Results Forty-two randomised controlled trials involving 7779 participants (6678 patients and 1101 unpaid caregivers) were included. Diagnoses of participants were as follows: cancer, 21 studies; non-cancer, 14 studies; and mixed cancer and non-cancer, seven studies. Hospital-based specialist palliative care was offered in the following models: ward based (one study), inpatient consult (10 studies), outpatient (six studies), hospital at home or hospital outreach (five studies) and multiple settings that included hospital (20 studies). Meta-analyses demonstrated significant improvement favouring hospital-based specialist palliative care over usual care in patient health-related quality of life (10 studies, standardised mean difference 0.26, 95% confidence interval 0.15 to 0.37; I 2 = 3%) and patient satisfaction with care (two studies, standardised mean difference 0.36, 95% confidence interval 0.14 to 0.57; I 2 = 0%), a significant reduction in patient symptom burden (six studies, standardised mean difference –0.26, 95% confidence interval –0.41 to –0.12; I 2 = 0%) and patient depression (eight studies, standardised mean difference –0.22, 95% confidence interval –0.34 to –0.10; I 2 = 0%), and a significant increase in the chances of patients dying in their preferred place (measured by number of patients with home death) (seven studies, odds ratio 1.63, 95% confidence interval 1.23 to 2.16; I 2 = 0%). There were non-significant improvements in pain (four studies, standardised mean difference –0.16, 95% confidence interval –0.33 to 0.01; I 2 = 0%) and patient anxiety (five studies, mean difference –0.63, 95% confidence interval –2.22 to 0.96; I 2 = 76%). Hospital-based specialist palliative care showed no evidence of causing serious harm. The evidence on mortality/survival and cost-effectiveness was inconclusive. Qualitative studies (10 studies, 322 participants) suggested that hospital-based specialist palliative care was beneficial as it ensured personalised and holistic care for patients and their families, while also fostering open communication, shared decision-making and respectful and compassionate care. Limitation In almost half of the included randomised controlled trials, there was palliative care involvement in the control group. Conclusions Hospital-based specialist palliative care may offer benefits for person-centred outcomes including health-related quality of life, symptom burden, patient depression and satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death) with little evidence of harm. Future work More studies are needed of populations with non-malignant diseases, different models of hospital-based specialist palliative care, and cost-effectiveness. Study registration This study is registered as PROSPERO CRD42017083205. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 12. See the NIHR Journals Library website for further project information

Experiences of staff providing specialist palliative care during COVID-19: a multiple qualitative case study

Objective: To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. Design: Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis. Setting: Organisations providing specialist palliative services in any setting. Participants: Staff working in specialist palliative care, purposefully sampled by the criteria of role, care setting and COVID-19 experience. Main outcome measures: Experiences of working in palliative care during the COVID-19 pandemic. Results: Five cases and 24 participants were recruited (n = 12 nurses, 4 clinical managers, 4 doctors, 2 senior managers, 1 healthcare assistant, 1 allied healthcare professional). Central themes demonstrate how infection control constraints prohibited and diluted participants’ ability to provide care that reflected their core values, resulting in experiences of moral distress. Despite organisational, team and individual support strategies, continually managing these constraints led to a ‘crescendo effect’ in which the impacts of moral distress accumulated over time, sometimes leading to burnout. Solidarity with colleagues and making a valued contribution provided ‘moral comfort’ for some. Conclusions: This study provides a unique insight into why and how healthcare staff have experienced moral distress during the pandemic, and how organisations have responded. Despite their experience of dealing with death and dying, the mental health and well-being of palliative care staff was affected by the pandemic. Organisational, structural and policy changes are urgently required to mitigate and manage these impacts

Do the Clinical Management Guidelines for Covid-19 in African Countries Reflect the African Quality Palliative Care Standards? A Review of Current Guidelines

ContextPalliative care should be a component of COVID-19 management to relieve suffering, improve patient outcomes and save cost.ObjectivesWe aimed to identify and critically appraise the palliative care recommendations within COVID-19 case management guidelines in African countries.MethodsThe study employed systematic guideline review design. All guidelines from any country in Africa, of any language, published between December 2019 and June 2020 were retrieved through online search and email to in-country key contacts. We conducted a content analysis of the palliative care recommendations within the guidelines and appraised the recommendations using African Palliative Care Association standards for providing quality palliative care.ResultsWe retrieved documents from 29 of 54 African countries. Fifteen documents from 15 countries were included in the final analysis, of which eight countries have identifiable PC recommendations in their COVID-19 management guidelines. Of these eight, only one country (South Sudan) provided comprehensive palliative care recommendations covering the domains of physical, psychological, social and spiritual wellbeing, two (Namibia and Uganda) addressed only physical and psychological wellbeing while the remaining five countries addressed only physical symptom management.ConclusionsComprehensive palliative care which addresses physical, psychological, social and spiritual concerns must be prioritized within case management guidelines in African countries

Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation.

BACKGROUND: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. AIM: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement. DESIGN: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. SETTING/PARTICIPANTS: Researchers and public members from a palliative care and rehabilitation research institute, UK. RESULTS: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the 'right' people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the 'right' people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. CONCLUSION: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the National Institute for Health Research (NIHR) Collaboration for Leadership and Applied Health Research and Care South London (NIHR CLAHRC South London) Involvement Activity Funding and Research Capability Funding at King’s College Hospital NHS Foundation Trust. Support was also provided by the NIHR Applied Research Collaboration (ARC) South London at King’s College Hospital Foundation Trust. LJB is supported through a National Institute for Health Research (NIHR) Career Development Fellowship (CDF-2017-10-009). CE is funded by HEE/NIHR Senior Clinical Lectureship. The views expressed in this publication are those of the author(s) and not necessarily those of the funders, the NHS, the National Institute for Health Research or the Department of Health