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Editorial
Leading the Way
Innovative Health Promoting Palliative Care
Annette F Street
Professor, Cancer and Palliative Care Studies; Director, Centre for Research in Nursing, School of Nursing, La Trobe University, Bundoora VIC
Keywords
palliative and supportive care, palliative care policy, death and dying,
Article Text
'Life is uncertain, death is certain’ is a Buddhist teaching that captures a fundamental fact. We will all die. Death, loss and grief are all certainties that we will face over time. But this is where certainty ends. Although death is inevitable, many of the accompanying physical, social, psychological and spiritual issues are not. As palliative care services broaden their scope and become involved with a wider range of people living with, or affected by, a life-limiting illness, there is an increased recognition that not every one requires, or desires, the same level of specialist support over time. Taking a palliative approach means we can refocus palliative care policy and practice away from an individualised and medicalised approach to death and dying, to a health promoting and population based approach.Such an approach recognises that only a few of us will actually need highly specialised palliative and supportive care to assist us through the dying process. Most of us will die in our local communities supported by primary health care providers, our family, friends, neighbours, elders and community connections.
In this section of the journal we recognise that in addition to the resources of specialist, interdisciplinary palliative care services, there is a need to build capacity within our social and public health systems, to reduce the consequences associated with the dying process on individuals, carers and families and to work collaboratively with local communities and groups to foster community self-sufficiency. Therefore we not only need to develop individual choices about end of life care, but to place these choices within a broader policy and service framework that ensures equity for those vulnerable people who inhabit the margins of our societies. A population approach needs to ensure services are available for people who are refugees, or asylum seekers, or mentally ill, or homeless, or from isolated indigenous communities. Bearing this in mind, we need to ensure that our research practices are inclusive and do not factor out those whose language or backgrounds differ in order to get a homogenous sample.
Likewise, a public health approach to dying is interested in enabling individuals, families and communities to become resilient in the face of tragedy, loss and grief, rather than viewing death through a private and pathological lens. Resilience has been well argued for decades with regard to the ability of some children and adolescents to cope well (bounce back) despite traumatic or adverse early life circumstances. However resilience has undergone a definitional drift; becoming less focused on coping with individual trauma and more directed to exploring ways that enable people and communities to cope with the stresses accompanying life transitions, with loss death and grief brought into sharp relief. A new book entitled Resilience in Palliative Care argues that taking a narrow medicalised approach to the dying process, means the inevitable neglect of other needs central to living well until death. By contrast, taking a resilience approach supports individual strengths through communal capacity and partnerships that normalise dying and celebrate life.
Tactics and strategies that strengthen the resilience of communities to care for their vulnerable members as they die are central to a health promoting approach to palliative care. Based on the metaphor that what happens upstream affects what happens at the mouth of a river, such tactics are commonly described in the health promotion literature as upstream (macro), midstream (meso) and downstream (micro) factors. The more distal determinants upstream represent the population level determinants (public policy, death education, capacity-building, access and equity factors); the psycho-social determinants (social support, social capital, network creation) factors sit at midstream; and individual determinants (personal resources, spirituality, relationships, coping skills) are the impact at the mouth of the river. In other words, palliative care is not only directed at the care of individuals (downstream), but is also concerned with the social and community environment (midstream), and upstream public policies and community services. Upstream services enable communities to cope with the inevitability of death and consciously support loss, grief, dying and bereavement, especially in the most vulnerable community members.
There is an inevitable time lag between the development of new palliative care projects and the establishment of systematic research. Invariably, the most innovative projects are dreamed up in response to need. They are often complex, involving partnerships, undertaken with a limited budget and under the constraints of a tight timeline. Audits, interviews and surveys are the common evaluation tools and reporting is often to the funding body rather than in academic papers. In this Special Edition we wanted to showcase new talent in palliative care and identify new trends and lessons learnt from new projects. In this section, we have a group of papers that challenge the usual palliative research strategies and ideas and give us exemplars of addressing issues from a public health focus at various points in the transitions from life to death.
We start upstream at the community level with the excellent paper by Sue Salau, Bruce Rumbold and Barbara Young describing activities conducted with a rural health region. Drawing on a health-promoting approach and the social capital inherent in the volunteers’ activities in small rural communities, this highly innovative project undertook a range of partnership activities to raise awareness and prevent social difficulties around loss and death. Central to this approach was attention to harm minimisation, early intervention, the consequences of the setting or environment, participatory processes and sustainability. A core activity was the Café to Go project – a variant on a form of speed dating, where local people were invited to meet in a café environment and then move around to different tables meeting different people, to discuss provocative questions related to loss, grief and death. Other activities developed that met local needs for people of different ages and situations.
A midstream project is the paper by Jeanine Blackford, Liz Stickland and Bridget Morris detailing the lessons learnt about sustainability through two projects on Advance Care Planning (ACP) in residential aged care. ACP is directed at improving healthy ageing by facilitating patient self-determination and reducing unwanted and unwarranted medical treatments and hospitalisations. ACP is a strategy that enables individuals to express their future wishes in a values-driven discussion about options related to medical treatment, desired place and manner of death, along with a decision for a substitute decision maker if the person was unable to explain their choices. This discussion can be recorded and distributed appropriately so it is available when required by emergency services or other family or professional care givers. Internationally many initiatives directed at Advanced Directives or ACP have been developed, however sustainability of projects is a major concern. This exploration of the factors that contribute to sustainability in residential aged care settings is a vital contribution to the extant literature.
The symbolic process of creating a home away from home for people entering some form of residential care, including hospice care, is central to individual, family and community well-being. Yet in the push to manage the physical and psycho-social challenges at end of life, the impact of the environment is often forgotten. Placing the often backgrounded ‘environment’ into the foreground is the hub of the paper by Birgit H Rasmussen and David Edvardsson. These Swedish researchers have been exploring the contribution of the environment to well-being in older people over a number of years and this paper builds a conceptual framework for exploring ‘at-homeness’ in palliative care, providing valuable guidance to nurses in the structuring of caring environments.
In the uncertainties surrounding the dying process, the exploration of the ‘turning point’ that signifies the switch from a focus on curative, life-extending or rehabilitative processes to an impending end of life, is an important concern that impacts on how care is provided to the person and their family. Eva Jakobsson, Ingrid Bergh and Joakim Öhlén have provided a fascinating account of the way that health professionals write about the turning point in the records of 160 people and the relationship between this written record and the actual time of death. Of particular interest in this project is that fact that because the researchers asked an important conceptual question, their retrospective audit of records demonstrates a very effective way to create new knowledge; unlike the usual pedestrian questions used in chart reviews.
Exploring the health promoting palliative care approach has provide some new concepts and strategies that shift palliative care nursing practice from the private domain into a socially constructed world where medicine can be very helpful, but is not central to the business of living well until you die.
References
Kelcher H, MacDougall C and Murphy B (2007) Understanding Health Promotion, Oxford University Press, Melbourne.
Kellehear A and Young B (2007) Resilient communities. In Monroe B and Oliviere D (eds) Resilience in Palliative Care. Oxford University Press, Melbourne.
Monroe B and Oliviere D (eds) Resilience in Palliative Care, Oxford University Press, Melbourne.
Palliative Care Australia (2005) A Guide to Palliative Care Service Development: A Population-Based Approach.
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