Guest Editorial for Virtual Issue on Supportive and Palliative Care in Health and Social Care in the Community How can communities be better supported to provide palliative care? Merryn Gott PhD, MA (Oxon), Professor of Health Sciences (m.gott@auckland.ac.nz) Clare Gardiner PhD, BSc (hons), Senior Lecturer (c.gardiner@auckland.ac.nz), School of Nursing, University of Auckland, Private Bag 92019, Auckland 1142, New Zealand The need to develop new, innovative models of palliative and end of life care is now well recognised internationally (Gott & Ingleton 2011). Rapidly ageing populations mean that, within a relatively short time period, almost twice as many people will be dying with conditions known to benefit from a palliative care approach than at present (Gomes et al. 2011). Furthermore, constrained health budgets mean that we need to think creatively about how palliative care is delivered; it is evident that current models of care where repeat hospitalisations are the norm and interventions with curative intent are often continued up until the point of death (Healthcare Commission 2007), are neither sustainable nor necessarily in line with patient preference (Higginson 2003). These changes have significant implications for care provision within community settings. Indeed, it is communitybased health and social care professionals, as well as Non-Governmental Organisations and, crucially, families themselves, who will be increasingly called upon to meet the burgeoning demand for health and social care in the last weeks, months and years of live. Whilst some of these developments are to be welcomed as they could enable communities (in the widest sense of the term) to adopt a stronger role in palliative care provision (Kellehear 1999), questions still remain about the extent to which these communities are adequately supported to take on this challenging role. Acknowledging the role of existing community resources in supporting people who are facing the end of their lives is key to the public health approach to palliative care which is gaining momentum as a framework to guide future service development (Stjernsward 2007). This virtual 1
issue presents a selection of papers between 2009 2013 that offer insights into the role communities play in the provision of palliative care, and help us to address some of the key questions in this area. Within community settings, the bulk of palliative care is provided by people who are not trained health or social care professionals. The contribution and concomitant expertise of family carers and unpaid volunteers in this area is significant. Evidence of the extent and value of this contribution is reported in several papers in this collection. In their study on culturally appropriate palliative care, Bellamy & Gott (2013) report that health professionals view the involvement of family as fundamental to ensuring culturally appropriate palliative care for Maori, Pacific Island, and Chinese elders. In recognition of the significant caring role of family members, Wong & Usher (2009) report on the experiences of bereaved cancer carers, and highlight some of the positive dimensions associated with the caregiving experience. However, a common theme that also emerges is the significant challenges the family and volunteer workforce can face. MacLeod et al (2012), for example, identify the need for improvements in communication, education, emotional support, and advocacy to support hospice volunteers and caregivers. So whilst this body of research supports the need to acknowledge family, friends and volunteers as key members of the palliative care workforce, at the same time we are reminded that, as yet, they are often insufficiently supported and resourced in this role. A key resource implication for family members who take on a caregiving role is financial, an issue that is addressed in the studies by Crooks et al. (2012) and Giesbrecht et al. (2010). They describe the Canadian Compassionate Care Benefit (CCB) programme, which aims to provide job security and income support for people in paid employment caring for a person in the last six months of their life. 2
They report family caregiver (Crooks et al. 2012) and health professional (Giesbreacht et al. 2010) experiences of the CCB programme, drawing particular attention to examples of where there are gaps between expectation and reality. A key message for those countries who have yet to implement programmes of this nature is the need to consult with prospective service users throughout their design, as well as to promote public awareness of the programme following implementation. A number of papers in the collection remind us of the need to understand public and consumer preferences more fully and identify strategies to ensure they underpin service provision (Aoun & Skett 2013; Auon et al. 2012; Wilson et al 2013). Wilson et al. (2013), for example, explored the publics perspective on the right to hastened death in Canada. The majority public support for death hastening suggests that a change in legalisation could potentially occur in the future; palliative care needs to respond by adequately protecting people who are highly vulnerable near the end of life. Another key challenge is eliciting, and being responsive to, the views and preferences of people from different cultural and ethnic backgrounds. Bellamy & Gott (2013), Castleden et al. (2010), and Frey et al. (2013) provide us with valuable evidence on the development and implementation of culturally appropriate palliative care, for example highlighting the need for training and two-way knowledge exchange to increase awareness amongst health professionals regarding cultural differences in death and dying (Castleden, 2010). These studies further highlight the need to prioritise equitable access to palliative care, across increasingly culturally diverse populations. Current models of specialist palliative care need to evolve in order to provide an appropriate and equitable service for patients and their families living and dying in the community. Brackley et al. (2009) highlight significant inequity in the likelihood of receiving palliative home care in British 3
Columbia, Canada and DeMiglio & Williams (2012) describe how shared care service provision within community palliative care teams in Ontario, Canada, is hampered by barriers relating to institutional issues, partnership working, and role ambiguity. Likewise O Brien & Jack s (2010) study of community nurses identified poor co-ordination of community service provision as a major barrier to supporting dying at home. New methods are required to evaluate equity of access across communities, for example the protocol for determining differences in depth and consistency of palliative care developed by Schuurman et al. (2010). New models of community health service provision are also required which are responsive to cultural diversity and other demographic shifts, such as the growing numbers of older people living alone (Aoun & Skett 2013). In order to meet future demand there is also a need to think flexibly, for example healthcare support workers represent a resource which is not fully maximised, and whose role is hampered by lack of education and training (Herber & Johnston 2013). Again it is evident that extra support is required if healthcare support workers, volunteers, and family caregivers are to successfully provide the level of support that they are being called upon to deliver. Significant changes will be required in the near future if communities are to meet the imminent increased demand for palliative care. Changes need to be underpinned by robust research, and new methodologies need to be developed which are responsive to changing demographics and research priorities, a point made by a number of authors included in this issue (Aoun 2013; Shuurman 2010; MacLeod 2012). Traditional methods may not necessarily be appropriate, for example Auon et al. (2013) concluded that the Randomised Controlled Trial (RCT) design was an inappropriate method for their study of older adults living alone due to difficulties with recruitment, high attrition, variation in the patient sample and problems randomizing patients to interventions. Finally, theoretical developments are required in tandem with new research findings, as evidenced in the study by Wong & Usher (2009) who propose theoretical developments around positive carer dimensions. The issues they identify highlight the importance of subjective meaning production in 4
making sense of situations of loss and difficulties, and imply that an effective way of supporting informal cancer carers is to support them in reconciling the difficulties embedded in their caring experiences. Arguably, communities are uniquely positioned to deliver high quality palliative care that is in line with the preferences and needs of patients at the end of life. However, change at a public health level is required if communities and those living and working within them are to be appropriately supported in delivering this care. 5
References Gomes B, Cohen J, Deliens L, Higginson IJ. (2011) International trends in circumstances of death and dying amongst older people pp.3-28. In: Living with Ageing & Dying: Palliative and End of Life Care for Older People. Eds M.Gott & C.Ingleton. Oxford University Press, Oxford. Gott M & Ingleton C (2011) Living with Ageing & Dying: Palliative and End of Life Care for Older People. Oxford University Press, Oxford. Healthcare Commission. (2007) Is Anyone Listening? A Report on Complaints Handling in the NHS. Commission for Healthcare Audit and Inspection: London. Higginson I. (2003) Priorities and Preferences for End of Life Care. National Council for Hospice and Specialist Palliative Care Services, London. Kellehear A. (1999) Health promoting palliative care. (1999) Oxford University Press: Melbourne Stjernsward J, Foley KM, Ferris FD (2007). The Public Health Strategy for Palliative Care. Journal of pain and symptom management. Vol. 33 No. 5 May Pp 486-493 6