‘Shadows in the system’: the work of family and friends at the end of life

‘Shadows in the system’: the work of family and friends at the end of life

Merryn Gott

Being at home, in our own bed, surrounded by loved ones, is an image that dominates popular understandings of dying well, at least in most Western countries. However, whilst perpetuated in health policy, its achievement relies not upon statutory health services, but rather upon an unpaid and largely invisible workforce. This workforce is likely to be the single greatest resource most of us have access to as we reach the end of our lives, providing approximately 70 hours a week of care [1] and meeting 1/5th-1/3rd of the total financial costs incurred. [2] However, research shows that its members are currently unsupported and their contributions under-maximised. The workforce in question is one that we are all likely to claim membership of at some point in our lives and is comprised, of course, of family and friends.

It is a workforce that is under increasing pressure. In most countries, rapidly ageing populations are driving significant increases in the need for palliative care – defined by the World Health Organisation as an ‘approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness’. [3] Death is now most likely to occur in advanced age after a prolonged period of experiencing multiple, complex health conditions. These trends are all unfolding at a time when health services are, what is euphemistically referred to as, ‘constrained’. All these factors are combining to place more and more work, and responsibility, upon ‘family carers’, to use the terminology adopted in research, practice and policy.

This terminology is, for obvious reasons, problematic. Most of us when in this position don’t identify as ‘carers’. We do this work as part of our roles as partners, wives, daughters, mothers, husbands, sons, fathers, friends, neighbours and colleagues. The reasons for occupying the caring role are complex, driven by multiple, often competing, emotions – love, guilt, obligation, as well as cultural and societal norms. These norms are gendered, meaning not only that caregiving is disproportionately the work of women, but also that men are also more likely to have a willing and available family carer when required.

However, regardless of gender, identity or motivation, one common experience is that the work is getting harder. Indeed, the trends outlined above are resulting in families increasingly taking on caregiving tasks that have traditionally fallen under the remit of paid (and extensively trained) health professionals. For example, in some countries, family members routinely administer intravenous medication such as morphine, a trend that is also being encouraged within the UK. At the recent Public Health and Palliative Care International conference in Ottawa, health professionals were admonished for being overly paternalistic in not ‘empowering’ people to provide pain relief for their relatives at end of life and ‘enabling’ them to be at home.

You don’t need to think very hard to realise there is another side to this argument. Research confirms that injecting an emaciated relative with morphine just prior to their death can, unsurprisingly, be a traumatic experience. It is often the first time someone has given an injection. Questions of whether ‘I am doing this right’ therefore sit alongside the fear of inflicting pain and deeper and long-lasting concerns about whether this action has hastened death. It is therefore clear that we should not underestimate the complexity of the tasks undertaken by family carers because the work is unpaid. This example also points to the need for both practical and emotional support for family members. The care they provide must obviously meet the needs of their dying relative, but in a way that maintains their own wellbeing, both at the time, and following bereavement. Indeed, there is significant evidence that not feeling you have ‘done your best’ can significantly complicate your bereavement experience.

The effects of assuming the mantle of ‘family carer’ can be very significant. Half of all family members providing care to someone with a life limiting illness will experience anxiety or depression. [4] Physical health effects can be direct, for example, chronic back injuries are common (as they are among nurses). They can also be indirect, for example, related to the stress of caregiving, something implicated in the higher rates of diagnoses of chronic health conditions among family carers. Premature death is a real possibility. [5] The financial costs incurred can also be substantial, with particular negative implications for those already living with limited means, including significant credit card debt and having insufficient money to purchase basic necessities. [6]

Whilst many of these effects are common to all carers, they are exacerbated within an end of life context. A “no matter what the cost” attitude typically prevails when time is short. However, at the same time, conversely, it is also important to acknowledge that caregiving can have positive effects. For some, caring has been shown to promote social connectedness and feelings of self-worth and satisfaction, all of which are known to contribute to both wellbeing and even increased longevity.

However, in order for the caregiving experience to assume more positives than negatives the role of family carers, and the expertise they bring to end of life caregiving, requires far more recognition and support. Currently, the evidence shows that, not only are the needs of family carers not addressed by health professionals, but also that the unique knowledge and information they possess about the person for whom they are providing care is also typically ignored. This is problematic because, in the current fragmented health and social care system, it is often family members who act as both information repositories and care navigators.

Increased support is required in many different and in multiple and culturally situated, ways. At a policy level, there needs to be a fundamental shift in how family caregiving is conceptualised. Caregivers need to be explicit framed as part of the palliative care workforce, requiring appropriate education, training and support. Financial entitlements and caregiver leave initiatives require further investigation. We can learn from different countries. Canada, for example, currently has the most progressive policy in this area following the introduction of a ‘compassionate care benefit’, which provides payments to anyone providing care and support to a family or friend with an estimated prognosis of six months or less. [7]

Existing initiatives to increase support for family carers within statutory health services include training programmes and targeted carer assessments to identify problems and concerns. There have even been discussions in the UK about creating a new community nurse role focused entirely on supporting family carers. However, implementation of these sorts of initiatives is very difficult within the context of health services struggling to meet much more visible and immediate health need.

Palliative care policy and research has focused on identifying strategies to improve care and support for people with a life limiting illness within statutory health services. However, in recent years a new way of thinking has emerged and, in countries such as Australia and Scotland it has been embedded in policy. This thinking applies a public health lens to palliative care development, moving the focus beyond the role of ‘professionals’ and health services to recognise the resource within ‘communities’ and ‘social networks’. Arguably this approach is under-theorised at present (requiring, for example, much more interrogation of the meaning of ‘communities’ and ‘social networks’ within this context). However, it does provide a mechanism for recognising that death and dying are shared concerns and foregrounds the role that family and friends play in care and support at the end of life.

Community-based initiatives developed from this perspective include ‘Compassionate Neighbours’, instigated by St Joseph’s Hospice in London, where volunteers are trained to support people “living with or caring for a person with a serious, long-term or terminal illness, or a person who is frail and/or isolated”. Preliminary reports have been very positive, particularly for the volunteers themselves. In New Zealand, self defined ‘palliative care consumer activist’, Ros Capper, recognised a “chasm” in support for carers, characterising her experience as akin to being a “shadow in the system”. In response she wrote one of the first practical guides to caregiving within a palliative care context written from a family perspective. [8] More initiatives such as these which promote social activism for change should be encouraged, as they seem to offer the best hope of sustained improvement in support for caregiving.

It is clear that family and friends will play a critical role in meeting the rapid rise in palliative care need predicted within the next 30 years. However, this is not recognised in most mainstream palliative care policy or academic and practitioner discourse. Societal dialogue about end of life caregiving is also limited. It is time for family caregiving to be brought out of the ‘shadows’ and the contribution of family and friends to health and social care provision at the end of life to be discussed critically. It is a discussion that affects us all and to which we should all contribute.

References:
[1] Rowland, C., Hanratty, B., Pilling, M., van den Berg, B., & Grande, G. (2017). The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers’ hours of care and expenditures. Palliative Medicine, 31(4), 346-355.
[2] Round, J., Jones, L., & Morris, S. (2015). Estimating the cost of caring for people with cancer at the end of life: A modelling study. Palliative Medicine, 29(10), 899-907.
[3] WHO Definition of Palliative Care. (n.d.).
[4] Rumpold, T., Schur, S., Amering, M., Kirchheiner, K., Masel, E. K., Watzke, H., & Schrank, B. (2016). Informal caregivers of advanced-stage cancer patients. Supportive Care in Cancer, 24(5), 1975-1982.
[5] R. Schulz, S.R. Beach. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. Journal of the American Medical Association, 282 (23) (1999), pp. 2215-2219
[6] Gott, M., Allen, R., Moeke-Maxwell, T., Gardiner, C., & Robinson, J. (2015). ‘No matter what the cost’: A qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context. Palliative Medicine, 29(6), 518-528.
[7] International Review of Leave Policies and Related Research, 2012
[8] Capper, R. (2017) The Accidental Carer. A Practical Guide Through Uncertainty by Palliative Home Carers. (n.p.): Author

 

Merryn Gott is a Professor of Health Sciences at the University of Auckland and Director of the Te Arai Palliative Care and End of Life Research Group, the only bicultural palliative care research group internationally. She has published extensively on issues relating to palliative and end of life care, with a particular focus on equity.

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