Delivering end-of-life care for patients with cancer at home: Interviews exploring the views and experiences of general practitioners

Many patients with terminal cancer wish to die at home and general practitioners in the United Kingdom have a critical role in providing this care. However, it has been suggested general practitioners lack confidence in end-of-life care. It is important to explore with general practitioners their experience and perspectives including feelings of confidence delivering end-of-life care to people with cancer. The aim of this study was to explore general practitioners experiences of providing end-of-life care for people with cancer in the home setting and their perceptions of confidence in this role as well as understanding implications this has on policy design. A qualitative study design was employed using semi-structured interviews and analysed using thematic analysis. Nineteen general practitioners from London were purposively sampled from eight general practices and a primary care university department in 2018–2019, supplemented with snowballing methods. Five main themes were constructed: (a) the subjective nature of defining palliative and end-of-life care; (b) importance of communication and managing expectations; (c) complexity in prescribing; (d) challenging nature of delivering end-of-life care; (e) the unclear role of primary care in palliative care. General practitioners viewed end-of-life care as challenging; specific difficulties surrounded communication and prescribing. These challenges coupled with a poorly defined role created a spread in perceived confidence. Experience and exposure were seen as enabling confidence. Specialist palliative care service expansion had important implications on deskilling of essential competencies and reducing confidence levels in general practitioners. This feeds into a complex cycle of causation, leading to further delegation of care.     

A rural/urban comparison of the roles of the general practitioner in colorectal cancer management

Objective: To identify and compare the roles of urban, rural and remote general practitioners (GPs) in colorectal cancer (CRC) management. Design: Semistructured interviews exploring GP views of their role in CRC management. Setting: Urban, rural and remote general practices in north Queensland. Participants: Fifteen GPs in urban, rural and remote practice. Main outcome measures: Self‐reported roles in the management of CRC patients and factors influencing these roles. Results: All GPs, regardless of location of practice, played a role in diagnosis, referral, postoperative care, psychosocial counselling, follow up and palliative care. Involvement in treatment of CRC patients was only performed by remote GPs. In general, rural and remote GPs played greater roles in care coordination, clinical and psychosocial care. Rural and remote GPs were more heavily involved throughout the entire illness progression when compared with their urban counterparts. Conclusions: The results of this study indicate that rural and remote GPs in north Queensland play a greater role than urban GPs in the management of CRC. In order to maintain and enhance the roles of rural and remote GPs in CRC care, appropriate guidelines and remuneration should be provided. Palliative care support might also be useful to rural and remote GPs.     

Carer satisfaction with end-of-life care in Powys, Wales: a cross-sectional survey

A cross-sectional postal survey of bereaved carers was conducted in order to examine levels of satisfaction with services provided for people in their last year of life in the rural county of Powys, Wales, UK. A self-complete questionnaire, using a modified version of the Views of Informal Carers - Evaluation of Services instrument was sent to all bereaved carers of all those people dying of cancer in Powys between 1 April 1999 and 30 June 2001. Eight hundred and five (out of a possible of 815 people) were contacted and 407 agreed to receive the questionnaire. Out of these 407 individuals, 301 (74% of those who agreed to receive a questionnaire and 37% of the 815 contacted) returned a completed questionnaire. A single reminder letter was sent to non-responders. It was found that the majority of those who received help from district nurses or practice nurses (90%) said that they were excellent or good. However, nearly 40% of respondents reported needing more nursing help. More help was also needed from social care services. For 103 out of the 301 respondents, it was known that the deceased person wanted to die at home; only 44 did so. Only one-fifth of respondents had the opportunity to talk to someone from health and social services after their bereavement; a large majority (four-fifths) found this helpful. One-tenth of respondents reported untreated pain at home; however, there was evidence for an increasing proportion of those treated having received good pain relief. Although there are high levels of satisfaction with care and services received by Powys residents, deficits exist in relation to: symptom control, nursing help, assistance from social services with transport and bathing, communication, and bereavement support.     

Difficulties in navigating the intersection of generalist and specialist palliative care services: A cross-sectional study of bereaved family's experiences of care at home in New Zealand

A generalist–specialist model of palliative care is well established as a framework for the provision of community care in resource-rich countries. However, evidence is lacking regarding how the model is experienced by family carers and the extent to which access to both generalist and specialist palliative care is equitable. A cross-sectional postal survey was undertaken to explore bereaved family's experiences of generalist palliative care and its intersection with hospice services in the last 3 months of life. A modified version of the Views of Informal Carers—Evaluation of Services survey was sent to 4,778 bereaved family. Data were collected between February 2017 and October 2018. Chi-square was utilised to identify factors that impacted on experiences of generalist palliative care; analysis of free text data comprising 45,823 words was undertaken using a directed content analysis approach. Eight hundred and twenty-six questionnaires were returned (response rate = 21%). Seventy per cent of people (n = 579) spent some time at home in the last 3 months prior to death. People who received support from hospice were more likely to receive support from multiple other services. Those who received no community services were less likely to feel supported by their general practitioner, less likely to spend the last 2 days of life or die at home. Feeling supported had a strong association with services working well together, being involved in decision-making and being aware of the poor prognosis. The provision of palliative care is complicated by a lack of integration with specialist palliative care and may be the basis of continuing inequities in the provision of community care at the end of life. The assumption at a policy level that “generalists” are willing and able to play a key role in palliative care provision needs to be further challenged.     

Issues in Rural Palliative Care: Views From the Countryside

Context: Growing concern exists among health professionals over the dilemma of providing necessary health care for Canada's aging population. Hospice palliative services are an essential need in both urban and rural settings. Rural communities, in particular, are vulnerable to receiving inadequate services due to their geographic isolation.
Purpose: To better understand experiences and issues related to rural palliative care.
Methods: Focus groups were held for health professionals, family members and volunteers in 3 rural British Columbia communities. A coding schema was developed and the data were then thematically analyzed using a constant comparison technique.
Findings: Three themes in rural palliative care were established: nature of palliative health care services, nature of rural relationships, and competencies required for rural palliative care. Findings indicated that the diversity in rural communities requires tailored approaches to palliative care that consider the geographic, cultural and health aspects of residents in order to optimize care.
Conclusion: Tailored approaches to palliative care developed in conjunction with rural communities are needed in order to optimize care.     

Multidisciplinary Team-Based Palliative Care for Heart Failure and Food Intake at the End of Life

Traditionally, patients with end-stage heart failure (HF) have rarely been involved in end-of-life care (EOLC) discussions in Japan. The purpose of this study was to examine the impact of HF-specific palliative care team (HF-PCT) activities on EOLC discussions with patients, HF therapy and care, and food intake at the end of life. We retrospectively analyzed 52 consecutive patients with HF (mean age, 70 ± 15 years; 42% female) who died at our hospital between May 2013 and July 2020 and divided them into two groups: before (Era 1, n = 19) and after (Era 2, n = 33) the initiation of HF-PCT activities in June 2015. Compared to Era 1, Era 2 showed a decrease in invasive procedures, an increase in opioid and non-intubating sedative use for symptom relief, improved quality of meals at the end of life, and an increase in participation in EOLC discussions. The administration of artificial nutrition in the final three days was associated with non-ischemic cardiomyopathy etiology, the number of previous hospitalizations for HF, and multidisciplinary EOLC discussion support. HF-PCT activities may provide an opportunity to discuss EOLC with patients, reduce the burden of physical and psychological symptoms, and shift the goals of end-of-life nutritional intake to ensure comfort and quality of life.     

An exploratory study of spiritual care at the end of life

PURPOSE Although spiritual care is a core element of palliative care, it remains unclear how this care is perceived and delivered at the end of life. We explored how clinicians and other health care workers understand and view spiritual care provided to dying patients and their family members.     

A survey of end-of-life care in care homes: issues of definition and practice

Care homes throughout the UK provide long-term care for frail older people. Whilst care homes are a home for life, many of the older people living in this setting also die there. There is increased interest in improving the care that older people receive in care homes towards the end of life. One way to achieve this has been through links with specialist palliative care services. The knowledge held in care homes by staff, residents and their family carers has yet to be fully integrated into this work. Consequently, a postal survey of care home managers in one English county was undertaken to examine the characteristics of end-of-life care for older people in these care homes. We sought to establish the managers' understanding of end-of-life care; the extent to which dying and death is present in this setting; the attributes of the resident population living in these care homes; and the availability of resources to support the provision of end-of-life care in this setting. The survey identified that managers held diverse understandings regarding the meaning of end-of-life care. The features of the residents' conditions and the dying that they experience requires a different way to conceptualise end-of-life care. A longer-term perspective is offered here that encompasses the whole period of a person's residence in a care home.     

A Systematic Review of Nursing Home Palliative Care Interventions: Characteristics and Outcomes

BackgroundDespite recommendations to integrate palliative care into nursing home care, little is known about the most effective ways to meet this goal.ObjectiveTo examine the characteristics and effectiveness of nursing home interventions that incorporated multiple palliative care domains (eg, physical aspects of care—symptom management, and ethical aspects—advance care planning).DesignSystematic review.MethodsWe searched MEDLINE via PubMed, Embase, CINAHL, and Cochrane Library's CENTRAL from inception through January 2019. We included all randomized and nonrandomized trials that compared palliative care to usual care and an active comparator. We assessed the type of intervention, outcomes, and the risk of bias.ResultsWe screened 1167 records for eligibility and included 13 articles. Most interventions focused on staff education and training strategies and on implementing a palliative care team. Many interventions integrated advance care planning initiatives into the intervention. We found that palliative care interventions in nursing homes may enhance palliative care practices, including processes to assess and manage pain and symptoms. However, inconsistent outcomes and high or unclear risk of bias among most studies requires results to be interpreted with caution.Conclusions and ImplicationsHeterogeneity in methodology, findings, and study bias within the existing literature revealed limited evidence for nursing home palliative care interventions. Findings from a small group of diverse clinical trials suggest that interventions enhanced nursing home palliative care and improved symptom assessment and management processes.     

'It's very difficult to get respite out here at the moment': Australian findings on end-of-life care for Indigenous people

Whilst access to respite care has been found to represent an important source of support for terminally ill patients and their families, the availability of these services to Indigenous Australians has to date remained undocumented. This potential need for respite in Indigenous communities was explored as part of a National Health and Medical Research Council (NH&MRC) funded study designed to develop an innovative model for Indigenous palliative care. The data needed for model development were collected through a series of open-ended, qualitative interviews conducted with a cross-section of consumers and health professionals within the Northern Territory, Australia. The findings reflected a serious need for Indigenous respite services, coupled with a severe deficiency in the present availability of these services, especially within rural and regional areas. This lack of local respite services was documented to be negatively impacting upon the ability of carers to fulfil their caring duties and was found placing undue physical, emotional and economic stress upon carers, patients and their families. Furthermore, the lack of access to local respite services documented was found to be forcing rural and regional patients to relocate to metropolitan areas away from the family, community and land to which strong ties are held. The lack of Indigenous respite services was also found to obstruct patients' and carers' wishes for death to occur in the local community, rather than in far away cities. Significant obstacles were found to be hindering the provision of respite care to Indigenous Australians, namely beliefs about families looking after their own, resource restrictions, limited staff availability in local areas, as well as problems associated with hostel use in metropolitan areas. The conclusions drawn from this study suggest the importance of tackling the obstacles preventing local respite services being established in areas close to where patients and carers live.     

Sustainable primary health care services in rural and remote areas: innovation and evidence

Objective: To highlight how evidence from studies of innovative rural and remote models of service provision can inform global health system reform in order to develop appropriate, accessible and sustainable primary health care (PHC) services to ‘difficult‐to‐service’ communities. Methods: The paper synthesises evidence from remote and rural PHC health service innovations in Australia. Results: There is a strong history of PHC innovation in Australia. Successful health service models are ‘contextualised’ to address diverse conditions. They also require systemic solutions, which address a range of interlinked factors such as governance, leadership and management, adequate funding, infrastructure, service linkages and workforce. An effective systemic approach relies on alignment of changes at the health service level with those in the external policy environment. Ideally, every level of government or health authority needs to agree on policy and funding arrangements for optimal service development. A systematic approach in addressing these health system requirements is also important. Service providers, funders and consumers need to know what type and level of services they can reasonably expect in different community contexts, but there are gaps in agreed indicators and benchmarks for PHC services. In order to be able to comprehensively monitor and evaluate services, as well as benchmarks, we need adequate national information systems. Conclusions: Despite the gaps in our knowledge, we do have a significant amount of information about what works, where and why. At a time of global PHC reform, applying this knowledge will contribute significantly to the development of appropriate, sustainable PHC services and improving access.     

Continuity within primary palliative care: an audit of general practice out-of-hours co-operatives

BACKGROUND: The transfer of information between general practitioners (GPs) and their out-of-hours providers on vulnerable patient groups is essential to ensure continuity of care. This will be critical when, in 2006, NHS Direct will triage and route all out-of-hours calls. This study investigates the current use of information handover systems for palliative care patients within four out-of-hours co-operatives. METHODS: Paper records of all 13,460 contacts during August 2002 were scrutinized. Using a standardized data extraction form we recorded details on all palliative or terminal contacts, and the existence of information handover. RESULTS: Across the four co-operatives, 2.1 per cent of all calls were from palliative care patients; co-operatives held handover information for between one (1.2 per cent) and 13 (32.5 per cent) of these patients. CONCLUSION: The systems in place to alert these co-operatives to the needs of palliative care patients are currently under-utilized. As services move towards an integrated approach, scrutiny of information transfer systems and encouragement of GPs and district nurses to update information, may help to ensure better continuity of care     

Issues influencing the provision of palliative care services to remote aboriginal communities in the Northern Territory

Palliative care is a service available to many Australians subject to location and varying criteria. This paper seeks to identify some of the issues that hamper the provision of this sophisticated service to Aborigines living in remote parts of the Northern Territory. The paucity of literary sources of information demonstrates the need for research to be carried out in this field.     

Experiences of end-of-life care in community hospitals

Concerns remain that health and social care services often fail people dying of chronic illnesses other than those with cancer. British government policy aims to improve end-of-life care and to enable people to make choices about place of care near the end of life, with the assumption that home is often the preferred option. However, some elderly people may lack suitable social networks, family carers and other resources to remain at home. Community hospitals offer a potentially accessible resource for local provision of end-of-life care. They have the advantage of being located within easy reach for family members, are staffed by local people and in most of them, general practitioners can maintain continuity of care. This paper examines patients' and family carers' experiences of end-of-life care in community hospitals. In-depth organisational case studies were conducted in six community hospitals in the south of England. Interviews were undertaken with elderly patients dying of cancer and other advanced conditions (n = 18) and their family carers (n = 11). Qualitative analysis of transcribed interviews were undertaken, using the principles of grounded theory. Patients and family carers valued the flexibility, local nature (which facilitated visiting) and personal care afforded to them. Most participants regarded community hospitals as preferable to larger district general hospitals. Our research reveals that these participants regarded community hospitals as acceptable places for end-of-life care. Finally, we discuss the implications of our findings for improving end-of-life care.     

Barriers and Facilitators to Replicating an Evidence-Based Palliative Care Model

SUMMARY

Recognition of the difficulties involved in replicating evidence-based interventions is well documented in the literature within the medical field. Promising research findings are often not translated into practice, and if they are, there is a significant time gap between study conclusion and practice adoption. The purpose of this article is to describe the barriers and facilitators encountered by two managed care organizations while replicating an evidence-based end of life in-home palliative care model. Using Diffusion of Innovation Theory as a theoretical framework, results from focus groups and interviews with the project's clinical, administrative and research teams are presented and recommendations made for improving translational efforts. The process of replicating the end of life in-home palliative care model clearly illustrated the key elements required for successfully diffusing innovation. These key elements include marketing and communication, leadership, organizational support and training and mentorship. This qualitative process study provides clear, real world perspectives of the myriad of challenges encountered in replicating an evidence-based project.     

'Shared Care - Shared Dream': Model of shared care in rural Australia between mental health services and general practitioners

OBJECTIVE: To identify a working model between rural and remote mental health services and the local GPs in Australia. DESIGN: Postal questionnaire to assess the GPs' satisfaction level with the involvement of the mental health services in their ongoing management of mentally ill in the community. RESULT: There was a greater sense of satisfaction with the mental health services over the five years this program was implemented. CONCLUSION: This study offers a model on how a rural mental health service could enter into a shared care program with the local GP practice and achieve a greater level of satisfaction in serving the rural communities in Australia.