Bruce Rumbold

Circles of care: should community development redefine the practice of palliative care?

Specialist palliative care, within hospices in particular, has historically led and set the standard for caring for patients at end of life. The focus of this care has been mostly for patients with cancer. More recently, health and social care services have been developing equality of care for all patients approaching end of life. This has mostly been done in the context of a service delivery approach to care whereby services have become increasingly expert in identifying health and social care need and meeting this need with professional services. This model of patient centred care, with the impeccable assessment and treatment of physical, social, psychological and spiritual need, predominantly worked very well for the latter part of the 20th century. Over the last 13 years, however, there have been several international examples of community development approaches to end of life care. The patient centred model of care has limitations when there is a fundamental lack of integrated community policy, development and resourcing. Within this article, we propose a model of care which identifies a person with an illness at the centre of a network which includes inner and outer networks, communities and service delivery organisations. All of these are underpinned by policy development, supporting the overall structure. Adoption of this model would allow individuals, communities, service delivery organisations and policy makers to work together to provide end of life care that enhances value and meaning for people at end of life, both patients and communities alike.

Who needs bereavement support? A population based survey of bereavement risk and support need.

This study identifies and describes the profiles of bereavement risk and support needs of a community sample in Australia and tests the fit of the data with the three-tiered public health model for bereavement support. Family members who were bereaved 6–24 months prior to the survey and who were clients of four funeral providers participated (May-July 2013). A postal survey was used to collect information about bereaved people’s experience of caring and perceived satisfaction with any bereavement support provided. The questionnaire included a validated risk assessment screening measure for Prolonged Grief Disorder (PG-13). A total of 678 bereaved people responded. The model predicted that 60% of the sample would be low risk, 30% moderate risk, and 10% high risk. Actual figures were very close at 58.4%, 35.2% and 6.4% respectively. The analysis of the demographic characteristics, experience and impact of caring and bereavement, and satisfaction with support received from a variety of sources revealed differential experiences and needs that align with the expectation of low, moderate, and high bereavement support need, as articulated in the public health model. This is the first empirical test of the public health model of bereavement support. As there is a lack of clear evidence to guide development and allocation of bereavement support programs, the findings have the potential to inform the ability of services, community organizations and informal networks to prioritize care according to each level of bereavement need. This is essential to achieve cost-effective and equitable resource allocation.

A public health approach to bereavement support services in palliative care

Objective: Most Australian palliative care services offer bereavement support services and typically this is regardless of risk or need. Palliative care services need to know how to use their limited resources to deliver best bereavement care and support. Approach: The relevance of a public health model of bereavement support to palliative care services is presented. We draw on the National Institute for Clinical Excellence (NICE) guidelines in the United Kingdom as well as the results from an audit of bereavement support provided to carers in a UK hospice. Conclusion: The provision of professional bereavement counselling for all carers and families of patients in receipt of palliative care is both unsustainable and inappropriate. The application of a public health perspective to bereavement in palliative care provides a systematic and evidence-based way of meeting the needs of bereaved family carers while reducing economic and staffing constraints on palliative care services. Implications: A public health approach to bereavement in palliative care would meet the needs of bereaved family members without additional economic and staffing resources, draws upon existing community resources, encourages the development of further community capacity, and should reduce use of health services. Additionally, the development of community partnerships means that a further strength of the model is its application to bereavement beyond palliative care settings.

Bridging the gaps in palliative care bereavement support: An international perspective

A review of palliative care policies and bereavement support practices in the United States, Canada, United Kingdom, Australia, and Japan demonstrated 4 challenges: questions over providing universal versus targeted support; a lack of clear evidence driving service delivery; informal or no risk assessment; and limited or no evaluation of services. Bridging the gaps between the policy and practice of palliative care bereavement support requires acknowledging the challenges of medical and public health models, improving bereavement need assessment processes, enhancing the role of primary care providers, and extending research to provide an evidence-base for interventions.

Bereavement and palliative care: A public health perspective

Abstract In recent years there has been an increasing emphasis upon public health perspectives that place palliative care in the context of end-of-life services across whole populations. There is little corresponding public health interest in bereavement. Yet if we have to develop relevant, coherent, and comprehensive end-of-life care policies and practices, public health approaches to palliative care need to be accompanied by public health approaches to bereavement care. We argue here that palliative care services should match their commitment to providing a good death with a commitment to supporting good grief, and that this means investing their efforts principally in developing community capacity for bereavement care rather than seeking to deliver specialized bereavement services to relatives and friends of those who have received palliative care services.

Reported experiences of bereavement support in Western Australia: a pilot study

Objective: This article describes the pilot testing of a community survey to ascertain the experiences and needs of people who were bereaved 6–24 months before the survey. The pilot study aimed to assess the feasibility and acceptability of the survey and test the theoretical public health model for bereavement support.

From concept to care: Enabling community care through a health promoting palliative care approach

Abstract The aim of this paper was to implement and evaluate health promoting palliative care projects through partnerships formed within local communities in the Hume Region, Victoria, Australia. Health promoting palliative care is a public health approach to palliative care developed by Kellehear (1999). This article reports on a project in which the Hume Regional Palliative Care Service in Victoria, Australia sought to implement the approach through partnerships formed with a range of community groups and service agencies in their region. Funding was provided over a two-year period by the ‘Caring Communities Program’ of the Australian Commonwealth Department of Health and Ageing. It was hoped that the project overall would increase community capacity to participate in the care of members of the community living with dying and loss. The project developed implementation strategies and health promotion project guidelines, as outlined below. During the two-year period the palliative care service entered in a number of new partnerships with community groups and other health services. At first much of the initiative in forming these partnerships came from the palliative care service, but as the project progressed the initiative came increasingly from community partners.

Existing roles of traditional healers (mor baan) in southern Thailand.

Traditional healers (mor baan) played an important role in Thai health long before the introduction of Western medicine. Although modern health professional play a key role of health care provider of Thai health care system, traditional healers and their practice still exist in most rural areas of Thailand. In this article, we address the roles and practices of traditional healers in southern Thailand. An ethnographic method was employed. This approach is the hallmark method used to describe the role and the practice of traditional healers and to grasp in-depth understanding of their everyday life. Participation observation and unstructured interview with 18 traditional healers were conducted. Thematic analysis method was used to analyse the data. Most of the traditional healers chose their role because they were influenced by their ancestors, although a few others chose it because of individual interests and a desire to help ill people. All are trained in multiple skills, using supernatural spirits, ceremonies and natural plant products as resources for counteracting various health problems. They refer patients to modern hospitals or other healers if they cannot adequately manage illness themselves. Their service provision is flexible and based on a holistic approach that suits people’s lifestyles and needs. The role of traditional healer tends not to attract the interest of younger generations, although traditional healers have contributed greatly to people’s health. Their presence improves people’s access to healthcare and offers an alternative to modern medicine, which often has a limited role. We conclude that the services of traditional healers should be incorporated into contemporary healthcare provision of Thai health care system.

Building Community Capacity in Bereavement Support: Lessons Learnt From Bereaved Caregivers

Background: Most bereaved people do not require specialist intervention, yet building community capacity in providing bereavement support is underdeveloped. While family caregivers indicate a need for more information about bereavement, there is little evidence to guide what this information might contain. Objective: The study’s purpose was to inform bereavement support by determining the advice people bereaved through expected deaths in palliative care have for others in that situation. Design: Four funeral providers posted a questionnaire to previous clients who had used their services 6 to 24 months prior and 678 bereaved people responded. Setting/Participants: The sample size for this study comprised 265 bereaved people whose relative used palliative care services. Measurements: The questionnaire comprised 82 questions about caregiving, bereavement support, current bereavement-related distress, and 2 open-ended questions concerning their bereavement, one of them on advice they have to other people in the same situation. Results: Family caregivers (n = 140) of people who received palliative care responded to the open-ended question about advice for others. An open content analysis yielded 3 themes—preparations for bereavement, utilizing social networks, and strategies for dealing with grief. Conclusions: Bereaved family caregivers’ experiential knowledge can be harnessed to progress the development of bereavement care strategies for the good of the community. These responses could be incorporated into information brochures, posters, and other community education avenues in order to upskill palliative care bereavement volunteers and the wider community so that bereaved family caregivers are best supported.

Bereavement support for family caregivers: The gap between guidelines and practice in palliative care

Background Standards for bereavement care propose that support should be matched to risk and need. However, studies in many countries demonstrate that palliative care services continue to adopt a generic approach in offering support to bereaved families. Objective To identify patterns of bereavement support in palliative care services based upon the experience of bereaved people from a population based survey and in relation to clinical practice guidelines. Design An anonymous postal survey collected information from clients of six funeral providers in four Australian states (2014–15), 6 to 24 months after the death of their family member or friend, with 1,139 responding. Responses from 506 bereaved relatives of people who had terminal illnesses were analysed. Of these, 298 had used palliative care services and 208 had not. Results More people with cancer (64%) had received palliative care in comparison to other illnesses such as heart disease, dementia and organ failure (4–10%). The support for family caregivers before and after their relative’s death was not considered optimal. Only 39.4% of the bereaved reported being specifically asked about their emotional/ psychological distress pre-bereavement, and just half of the bereaved perceived they had enough support from palliative care services. Half of the bereaved had a follow up contact from the service at 3–6 weeks, and a quarter had a follow-up at 6 months. Their qualitative feedback underlined the limited helpfulness of the blanket approach to bereavement support, which was often described as “not personal” or “generic”, or “just standard practice”. Conclusions Timeliness and consistency of relationship is crucial to building rapport and trust in the service’s ability to help at post-bereavement as well as a focus on the specific rather than the generic needs of the bereaved. In light of these limitations, palliative care services might do better investing their efforts principally in assessing and supporting family caregivers during the pre-bereavement period and developing community capacity and referral pathways for bereavement care. Our findings suggest that bereavement support in Australian palliative care services has only a tenuous relationship with guidelines and assessment tools, a conclusion also drawn in studies from other countries, emphasizing the international implications of our study.