Community Specialist Palliative Care Service 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.

Quality outcomes for end-of-life care among people with haematological malignancies at a New Zealand cancer centre.

Little is known about the end-of-life (EOL) experience and specialist palliative care use patterns of patients with haematological malignancies (HMs) in New Zealand. This retrospective analysis sought to examine the quality of EOL care received by people with HMs under the care of Auckland District Health Board Cancer Centre's haematology service and compare it to international data where available. One hundred consecutive adult patients with HMs who died on or before 31 December 2019 were identified. We collected information on EOL care quality indicators, including anticancer treatment use and acute healthcare utilisation in the last 30 days of life, place of death and rate and timing of specialist palliative care input. During the final 14 and 30 days of life, 15% and 27% of the patients received anticancer therapy respectively. Within 30 days of death, 22% had multiple hospitalisations and 25% had an intensive care unit admission. Death occurred in an acute setting for 42% of the patients. Prior contact with hospital and/or community (hospice) specialist palliative care service was noted in 80% of the patients, and 67% had a history of hospice enrolment. Among them, 15% and 28% started their enrolment in their last 3 and 7 days of life respectively. The findings highlight the intensity of acute healthcare utilisation at the EOL and high rates of death in the acute setting in this population. The rate of specialist palliative care access was relatively high when compared with international experiences, with relatively fewer late referrals.

Systematic Review of Models of Effective Community Specialist Palliative Care Services for Evidence of Improved Patient-Related Outcomes, Equity, Integration, and Health Service Utilization.

Background: The benefits of palliative care programs are well documented. However, the effectiveness of specialist palliative care services is not well established. The previous lack of consensus on criteria for defining and characterizing models of care has restrained direct comparison between these models and limited the evidence base to inform policy makers. A rapid review for studies published up to 2012 was unable to find an effective model. Aim: To identify effective models of community specialist palliative care services. Design: A mixed-method synthesis design reported according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) reporting guidelines. Prospero: CRD42020151840. Data sources: Medline, PubMed, EMBASE, CINAHL and the Cochrane Database of Systematic Reviews were searched in September 2019 for primary research and review articles from 2012 to 2019. Supplementary search was conducted on Google in 2020 for policy documents to identify additional relevant studies. Results: The search yielded 2255 articles; 36 articles satisfied the eligibility criteria and 6 additional articles were identified from other sources. Eight systematic reviews and 34 primary studies were identified: observational studies (n = 24), randomized controlled trials (n = 5), and qualitative studies (n = 5). Community specialist palliative care was found to improve symptom burden/quality of life and to reduce secondary service utilization across cancer and noncancer diagnoses. Much of this evidence relates to face-to-face care in home-based settings with both round-the-clock and episodic care. There were few studies addressing pediatric populations or minority groups. Findings from qualitative studies revealed that care coordination, provision of practical help, after-hours support, and medical crisis management were some of the factors contributing to patients' and caregivers' positive experience. Conclusion: Strong evidence exists for community specialist palliative care to improve quality of life and reducing secondary service utilization. Future research should focus on equity outcomes and the interface between generalist and specialist care.

Community specialist palliative care services in New Zealand: a survey of Aotearoa hospices.

Community specialist palliative care (SPC) in Aotearoa New Zealand is provided by independent hospices. Substantial increase in demand for palliative care is projected in the next 20 years. We aimed to describe the current landscape of SPC services across Aotearoa whilst incorporating an equity lens. A descriptive cross-sectional survey was undertaken to describe aspects of hospice service and populations served. Survey links were emailed to clinical, or service leads of hospices identified via Hospice New Zealand Website. All eligible hospices (n=32) completed the online survey. All hospices provided care at home, with 94% (n=30) also providing care for patients in aged residential care facilities. All 32 hospices provided symptom management, family and carer support and bereavement care. Six hospices (19%) did not provide afterhours cover. Fifteen (47%) hospices did not have Māori cultural position and median full time equivalent across all hospices for such position was one day per week. Only nine (28%) hospices provided palliative medicine specialist training. Areas of inconsistency were highlighted including afterhours access and cultural support for Māori. The capacity of the present system to address current and future shortages of palliative medicine specialist is questioned.

Barriers and facilitators to implementing the Carer Support Needs Assessment Tool in a community palliative care setting.

Family carers play a central role in community-based palliative care. However, caring for a terminally ill person puts the carer at increased risk of physical and mental morbidity. The Carer Support Needs Assessment Tool (CSNAT) enables comprehensive assessment of carer support needs. The present study aimed to identify barriers and facilitators to implementing the CSNAT in a community specialist palliative care service. Semi-structured interviews with 12 palliative care nurse specialists from two community nursing teams in Lothian, Scotland, June 2017. Data was audio-recorded, transcribed and analysed. Palliative care nurse specialists acknowledge the importance of carers in palliative care and encourage carer support practices. Nurses perceived the CSNAT as useful, but used it as an 'add-on' to current practice, rather than as a new approach to carer-led assessment. Further training is recommended to ensure community palliative care nurses are familiar with the broader CSNAT approach.

The pattern and timing of changes in preferred place of death for patients admitted to a community specialist palliative care service

For patients receiving palliative care, expressing a preferred place of death (PPD) reduces anxiety and depression and increases the likelihood of achieving their preference. However, during the course of a life-limiting illness, patients commonly change their PPD at least once prior to death. The aim of this study was to identify the pattern and timing of how patients (and families) receiving specialist palliative care change their PPD over time. A retrospective chart audit was conducted of patients who died over a 7-month period whilst in the care of a metropolitan-based Community Specialist Palliative Care Service where PPD is routinely recorded every time a discussion on the topic occurs. These discussions are triggered by various factors which highlight the need to re-assess or confirm PPD. Results showed that 80% of patients achieved their PPD. There was no change to PPD in 64% of patients after the initial assessment, while 36% changed preferences once (27%), twice (8%) or three times (1%). Symptom management (10%) and family requests (30%) were cited as reasons for changing PPD. This study highlights that providers should revisit end-of-life discussions with patients along the disease trajectory and facilitate the consideration of all possible places for a good and safe death and the different scenarios that may influence patient decisions.

A review of specialist palliative care provision and access across London - mapping the capital.

Palliative care provision varies by diagnosis, geography, and setting. The Minimum Data-set provides high-level data on provision, but comprehensive comparative information about specialist palliative care (SPC) provision is lacking. The London Cancer Alliance – now RM Partners’ Accountable Cancer Network - palliative care group (West/South London) and PallE8 (North/East London), with Marie Curie, sought to address this gap. The aim was to provide comparative data on SPC provision across London to support commissioners and providers to assess provision, identify gaps, and reduce inequity. A data-collection template was developed through expert consensus. Demographic, diagnostic, and service data was collected, plus models of care, staffing levels, and use of clinical outcome/experience measures. Results were collated by organisation and CCG. Cleaned data was provided back to each organisation for verification before final analyses.ResultsAll 50 adult SPC providers in London participated, representing hospitals, hospices and community services. •Patients in all 32 CCGs have access to hospice beds, with 322 beds from 15 providers (4 NHS) for a population of 9,323,570 (with 47,583 deaths annually).•SPC in London sees more non-cancer patients than is reported nationally; 79% of hospital advisory, 74% of community, and 88% of hospice in-patient services have higher proportions of non-cancer patients.•Considerable variation in out-of-hours availability of both hospital SPC and community SPC services across London; only 9 of 30 hospital and 17 of 26 community services provide seven-day visiting.•Wide variation in the models of community-based SPC; proportions of community patients attending day services vary from 1 in 4, to 1 in 17, just 13 CCGs have H@H-type provision, with few Rapid Response or Care Coordination services. ConclusionsThis detailed survey demonstrates important gaps in availability and provision of SPC services. Recommendations are made for commissioners and providers to join together to address these. It also gives a comprehensive view of rapidly changing models of community-based care, to inform innovation and service development.

Midhurst Macmillan community specialist palliative care service delivering end-of-life care in the community

Objectives: To explore in detail the processes of care co-ordination and vertical care co-ordination that lead to the success of this service providing palliative care for patients with complex needs in their homes. Methodology: Mixed-method approach consisting of interviews with the team and key stakeholders to analyse co-operation within the service and with external providers. Results: The multidisciplinary team achieves its main goals of enabling people to die in the place of their choosing and to prevent avoidable hospital admissions through a flat team hierarchy, strong working links with community and secondary care providers, and through the use of volunteers to help patients with everyday chores. An external economic evaluation has proven its cost effectiveness. Patient and carer satisfaction is also high, and 99 per cent of patients who would like to die at home do so. Conclusion: Key success factors are early referral of patients to the service and a flexible delivery mechanism facilitated by a dedicated team and high-touch low tech communication mechanisms that enable speedy and informal information exchange within the team and with community care teams.

The development of a 7-day community specialist palliative care service

The author worked as a clinical nurse specialist (CNS) in community palliative care in the Central Lancashire area of England when the CNS service was extended to a 9am-to-5pm 7-day service. A project group was set up to canvas some of the key stakeholders for their views on the extension of the service. The group undertook a literature search, a telephone survey of services in other areas that were providing this level of service, and interviews to ascertain the views of district nurses in the locality of the proposed service extension. The extension of service has long been advocated and was one of the key recommendations in the UK Department of Health's peer-review process. Such an extension was implemented following the research phase and was then evaluated by the project lead and the community services manager. The extension was found to be effective in the ongoing monitoring and support of patients. Anecdotally, the CNS team also felt it had been proactive in preventing unnecessary hospital admissions, although this specific aspect is difficult to quantify. This article looks at how the service was developed, how it has evolved over time, and how it works today. Consideration is also given to benefits and limitations.

‘Five things i would like a community specialist palliative care service to provide’ – a novel approach

BackgroundIsabel Hospice provides care for a population of 350,000 across eastern Hertfordshire. Changes in our population and an increasing focus on choice in place of care have resulted in a...

‘Thinking differently’ to redesign community specialist palliative care services

BackgroundIsabel Hospice provides care for a population of 350,000 across eastern Hertfordshire. To enable the hospice to meet the challenge of an increasing demand for community services at a time...

Outcome of referrals to a community specialist palliative care service, where do patients die?

The majority of people would prefer to die at home, yet more than 50% of the UK population die in hospital. NHS policy and specialist palliative care services encourage the...

A 3 month pilot of the distress thermometer within community specialist palliative care services

IntroductionThe Distress Thermometer (DT) as a brief holistic screening and assessment tool has been introduced, validated and widely adopted within Oncology Services and cancer networks internationally. Supportive and palliative care...

National survey of the current provision of specialist palliative care services for patients with end-stage renal disease

Patients with end-stage renal disease (ESRD) experience a significant symptom burden and have complex needs. However, involvement of specialist palliative care (SPC) services with these patients has previously been shown to be limited. This study assesses the current provision of and access to SPC services for ESRD patients in the UK and considers how the provision has evolved over recent years. A questionnaire was sent to the lead clinician for all UK adult hospital, hospice and community SPC services, identified from the Hospice and Palliative Care Directory 2008. Non-responders were mailed again after 5 weeks. Descriptive statistics and qualitative thematic analysis were performed. Three hundred and eighteen of 611 (52%) questionnaires were returned. Ninety-six per cent stated that SPC services have a role in caring for patients with ESRD. Two hundred and eighty-one of 318 (88%) accepted referrals, and 185 of 281 (66%) reported that 'none or few were referred'. Only 7% and 17% of respondents used specific ESRD referral and treatment guidelines, respectively; whereas 79% used the Liverpool Care Pathway for the Dying Patient. Seven per cent undertook joint renal and SPC multi-disciplinary team (MDT) meetings, and 3% held joint out-patient clinics. Forty percent of respondents proposed initiatives to improve palliative care for ESRD patients, with mutual education and collaborative working being key themes for improvement. The majority of SPC services accept ESRD patients, but limited numbers are referred. Respondents indicated that this barrier could be addressed by closer collaboration and better communication and education between renal and SPC services. Other initiatives to enable delivery of SPC to increased numbers of ESRD patients include the use of specific referral and clinical care guidelines and expansion of joint MDT meetings and out-patient clinics.

Proactive palliative care choices for haematology day unit patients.

End stage haematology patients may require transfusion of blood, or blood products, regularly throughout the week. One regional haematology day unit sister identified difficulties that these hospital services dependent patients were experiencing in establishing contact with local community specialist palliative care services. As a consequence, some patients were unable to access specialist palliative care services in the community when they were too unwell to attend the day unit, resulting in acute admission to hospital for terminal care. Discussion of this issue with nursing colleagues from the hospital and community palliative care teams led to the development of an alternative model of palliative care delivery for these patients. The new model increased patient choice. Evaluation of this model of care demonstrated an increase in planned hospice/community deaths, avoiding unnecessary emergency hospital admissions in the last days of life. All regional patients accessed some palliative care services/treatment locally and there was opportunity for patient-initiated palliative care review.

Out-of-hours palliative care in the UK: perspectives from general practice and specialist services.

Palliative care within the community requires well coordinated multidisciplinary teamworking, involving both primary and secondary care practitioners. 'Out-of-hours' periods are a potentially problematic time for delivery of high quality care. We report on two national surveys-one of medical directors of out-of-hours general practitioner cooperatives, the other of medical directors of specialist palliative care units. The aim was to describe general practitioners' and specialists' perspectives on the availability and scope of community nursing and specialist palliative care services. The results point to wide variation in service provision within the community. The two groups differed strikingly in their perceptions, the general practitioners being much less positive than the specialists about the availability of specialist advice and admission to specialist units out of hours. Equitable out-of-hours palliative care services of high quality are unlikely to be achieved without dialogue between primary and secondary care based providers, local needs assessment and adequate resourcing.

Out-of-hours palliative care in the UK: perspectives from general practice and specialist services

Palliative care within the community requires well coordinated multidisciplinary teamworking, involving both primary and secondary care practitioners. 'Out-of-hours' periods are a potentially problematic time for delivery of high quality care. We report on two national surveys-one of medical directors of out-of-hours general practitioner cooperatives, the other of medical directors of specialist palliative care units. The aim was to describe general practitioners' and specialists' perspectives on the availability and scope of community nursing and specialist palliative care services. The results point to wide variation in service provision within the community. The two groups differed strikingly in their perceptions, the general practitioners being much less positive than the specialists about the availability of specialist advice and admission to specialist units out of hours. Equitable out-of-hours palliative care services of high quality are unlikely to be achieved without dialogue between primary and secondary care based providers, local needs assessment and adequate resourcing.

Which terminally ill cancer patients in the United Kingdom receive care from community specialist palliative care nurses?

This study investigates how cancer patients who receive care from community specialist palliative care (CSPC) nurses differ from those who do not. This was achieved by secondary data analyses from the Regional Study of Care for the Dying, a retrospective interview survey of deaths in 1990 in 20 nationally representative health districts. Interviews were obtained for 2,074/2,915 (71%) of randomly selected cancer deaths; 574 (27.8%) were reported to have received care from a Macmillan nurse, hospice home-care nurse, or other community specialist palliative care nurse. Using logistic regression analysis 10 factors were found to predict independently CSPC use. Being dependent with dressing/undressing, needing help at night, having constipation, experiencing vomiting/nausea, being mentally confused, having breast cancer and being under the age of 75 years increased the likelihood of receiving CSPC. Having a lymphoma, leukaemia or myeloma, a brain tumour and being dependent on others for help with self-care for more than 1 year decreased the likelihood. The use of CSPC nurses to provide expertise in symptom control and to support families of dependent patients is consistent with the aims of palliative care, and therefore appears appropriate. Further research is, however, needed to investigate the apparent age bias in access to these services, and to ensure that CSPC services are provided on the basis of need, irrespective of patient age.