584243 research-article2015

PMJ0010.1177/0269216315584243Palliative Medicine X(X)Editorial

Editorial Palliative Medicine 2015, Vol. 29(6) 485­–486 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315584243 pmj.sagepub.com

Caregivers’ three-cornered hats: Their tricornes For some time it has been recognised that caregivers may have many roles that are, at best, ambiguous and, at worst, contradictory. The first two corners of caregivers’ hats are characterised as being co-workers and care recipients.1,2 (Isn’t it interesting that in the health literature it is family and friends who are deemed to be ‘co-workers’ of health professionals not the other way around? In fact, health professionals may be fortunate enough to be co-workers with family and friends providing care for people at the end of life.) One of the articles in this issue of Palliative Medicine highlights that health professionals are considered by caregivers to be ‘helpful and hindering [family caregivers] in meeting the challenges that they face’.3 But there is a third corner of the hat that needs to be acknowledged for caregivers – healthcare recipients (patients) in their own right. It is imperative that all three roles are assessed and supported if hospice/palliative care services are going to optimise outcomes for caregivers of people with life-limiting illnesses. After all, caregivers need to be in the best possible health for the role that they have, and hospice/palliative care services have a duty of care to ensure as caregivers complete their roles that they are in the best possible health to move on with their lives. Caregiving is a health hazard with caregivers having poor health outcomes.4 Hospice/palliative care services need to pay attention to the actual health of caregivers in a proactive way. It is too easy to let caregivers ignore their own health needs because the needs of the person with the lifelimiting illness may so easily seem more important. This issue of Palliative Medicine addresses the topic of caregivers with key new insights. It has been easy for the desire of the majority of people to spend the majority of their time at home to transform into a health policy imperative that ‘a home death is a good death’. Such simplicity detracts from the generosity of caregivers in providing the majority of care for people at the end of life.5 Such a view also fails to take into account the rapidly changing demography in our communities, especially in resource advantaged communities – smaller, more geographically dispersed families; longer life expectancy; and changing structures of what constitutes a ‘community’. The projections over the next 30 years are that even more people in resource-rich

countries will live alone after the age of 50 years. If we are to continue to support people at home, it will be necessary to think about how we activate the network of family and friends most of whom are unlikely to be resident at the same address.6 We need to contrast this with data that suggest that where extended families are still more readily available, the use of palliative care services is actually less.7 It would suggest that the changing fabric of society is going to require hospice/palliative care services to adapt rapidly as we witness caregivers’ changing demographics. Central to this is the fact that many caregivers do not identify themselves in that role. In their eyes they are just fulfilling a role expected of them. They are a spouse, child, sibling – not a caregiver. This makes it challenging to consider how best to ensure that we are even reaching people who provide care at the end of life, let alone improving their current and long-term health. We are also challenged by Morris et al.8 that home care can actually turn into just another hospital ward with ‘transformations to the social and emotional space of the home’. If your lounge room is turned into a hospital ward, this may or may not meet the wishes of someone to be cared for at ‘home’. If you are not used to sleeping in the lounge room and you are not used to health staff coming and going (at times without even introducing themselves), then for many people home may not be the better option. The cost of home-based care is said to be less expensive than hospital-based care. This depends on whether the costing is done from a health system viewpoint or from a societal perspective. If from the latter, then the cost of home-based care for people at the end of life becomes a significant cost shift to patients and their families. Whether it is attributing a notional value to the care that caregivers offer, looking at income foregone or resources used, this is a massive demand on families’ limited resources. When we do focus on caregiver needs, their feedback is that they value such an assessment and support greatly.9 If we can mobilise the ‘community’ of that person – their work colleagues, their social or sporting club friends, their geographic community – then we can provide extraordinary support. It is both hard to ask for help and to know how best to offer help. Best support for patients with a lifelimiting illness is going to be ways of also brokering really effective support for their caregivers. It is all too easy to romanticise the role of caregiver. Population data from Australia and soon to be released

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Palliative Medicine 29(6)

data from England identify that there are a group of caregivers who would not take on this role again.10 Given the increasing life expectancy in our communities, deciding not to provide support in the future has real implications for how we provide care for people at the end of life in the decades ahead. How many hats can one person wear? The three-cornered hat is central to caregiving on top of which other hats keep piling up: cook, porter, secretary, bottlewash, nurse, pharmacist, chauffeur, laundry worker, friend, confidant and lover. Getting the balance right in identifying caregivers, identifying their specific health needs and supporting them through the process of caring for someone are complex. Hospice/palliative care services could employ a greater level of sophistication in order to ensure that we match the rapidly changing demography and expectations of caregivers and of our communities more broadly in the decades to come while systematically improving the health of caregivers while in the role and after their roles are completed. References 1. Stajduhar KI, Nickel DD, Martin WL, et al. Situated/being situated: client and co-worker roles of family caregivers in hospice palliative care. Soc Sci Med 2008; 67(11): 1789–1797. 2. Ward-Griffin C and McKeever P. Relationships between nurses and family caregivers: partners in care? Adv Nurs Sci 2000; 22(3): 89–103. 3. Totman J, Pistrang N, Smith S, et al. ‘You only have one chance to get it right’: a qualitative study of relatives’ experiences of caring at home for a family member with terminal cancer. Palliat Med. Epub ahead of print 29 January 2015. DOI: 10.1177/0269216314566840.

4. Schulz R and Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA 1999; 282(23): 2215–2219. 5. Agar M, Currow DC, Shelby-James TM, et al. Preference for place of care and place of death in palliative care: are these different questions? Palliat Med 2008; 22(7): 787–795. 6. Burns CM, Abernethy AP, Dal Grande E, et al. Uncovering an invisible network of direct caregivers at the end of life: a population study. Palliat Med 2013; 27(7): 608–615. 7. Currow DC, Agar M, Sanderson C, et al. Populations who die without specialist palliative care: does lower uptake equate with unmet need? Palliat Med 2008; 22(1): 43–50. 8. Morris SM, King C, Turner M, et al. Family carers providing support to a person dying in the home setting: a narrative literature review. Palliat Med. Epub ahead of print 29 January 2015. DOI: 10.1177/0269216314565706. 9. Greene A, Aranda S, Tieman JJ, et al. Can assessing caregiver needs and activating community networks improve caregiver-defined outcomes? A single-blind, quasi-experimental pilot study: community facilitator pilot. Palliat Med 2012; 26(7): 917–923. 10. Currow D, Burns C, Agar M, et al. Palliative caregivers who would not take on the caring role again. J Pain Symptom Manage 2011; 41(4): 661–672. David C Currow1,2 1Discipline,

Palliative and Supportive Services, Flinders University, Adelaide, SA, Australia 2Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA Corresponding author: David C Currow, Discipline, Palliative and Supportive Services, Flinders University, Bedford Park, Adelaide, SA, Australia 5042. Email: [email protected]

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Caregivers' three-cornered hats: Their tricornes.

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