Family carers under pressure and in the shadows

It is clear family and friends will play a critical role in meeting rapidly rising palliative care needs predicted within the next 30 years. However, this is not recognised in most mainstream palliative care policy, writes the University of Auckland's 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. It is an image that relies not upon statutory health services, but rather upon an unpaid and largely invisible workforce which is likely to be our single greatest resource as we reach the end of our lives. It provides approximately 70 hours a week of care, meets up to a third of the total financial costs incurred and is one we are all likely to claim membership of at some point in our lives. The workforce in question is of course, family and friends and it is a workforce under increasing pressure.

In most countries, rapidly ageing populations mean growing needs for palliative care. Death is now most likely to occur in advanced age after a prolonged period of complex health conditions. This trend comes at a time when health services are ‘constrained’ so more responsibility is placed upon ‘family carers’ – to use research, practice and policy terminology.

This terminology is, for obvious reasons, problematic. Most of us, in this position, don’t identify as ‘carers’. We do this work as partners, wives, daughters, mothers, husbands, sons, fathers, friends, neighbours and colleagues, and for reasons driven by emotions – love, guilt, obligation, as well as cultural and societal norms. These norms are gendered – i.e. most caregivers are women and men are more likely to have a willing family carer when required.

However, regardless of gender, identity or motivation, one common experience is the work is getting harder. Increasingly, families are taking on caregiving tasks traditionally carried out by paid and extensively trained health professionals. For example, family members now routinely administer intravenous medication such as morphine. At the recent Public Health and Palliative Care International conference in Ottawa, this was argued to be ‘empowering’ for families.

You don’t need to think very hard to see the other side of this argument.

Research we have just completed with the support of the NZ Health Research Council 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’ sit alongside fear of inflicting pain and long-lasting concerns about whether this action has hastened death. It is therefore clear that we should not underestimate the complexity of tasks undertaken by family carers because the work is unpaid. This example also highlights need for practical and emotional support for family members. The care they provide must meet the needs of their dying relative, but their own wellbeing must be maintained at the time of, and following, bereavement. Indeed, there is significant evidence that not feeling you have ‘done your best’ significantly complicates your bereavement experience.

The effects of being a ‘family carer’ are very significant. Research shows half of all family members in this role experience anxiety or depression. Direct physical health effects such as chronic back injuries, are common too, just as they are among nurses. Health effects can also be indirect, for example, related to the stress of caregiving which is implicated in the higher rates of chronic health conditions among family carers. Premature death is a real possibility. The financial costs incurred can also be substantial, with particularly negative implications for those already living with limited means, including credit card debt and inability to buy basic necessities.

While 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.

Conversely, it is important to acknowledge that caregiving can have positive effects. It can promote social connectedness and feelings of self-worth and satisfaction which contribute to wellbeing and even increased longevity. However, to achieve this, the role of family carers requires far more recognition and support. Evidence shows their needs are not addressed by health professionals, and their unique knowledge about the person they care for is 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.

This increased support is required in many different ways. At a policy level, there needs to be a fundamental shift in how family caregiving is conceptualised. Caregivers need to be seen explicitly 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 with a ‘compassionate care benefit’ which provides payments to anyone providing care to a family or friend with an estimated prognosis of six months or less.

In recent years, a new approach to palliative care has emerged and, in countries such as Australia and Scotland, embedded in policy. This thinking moves the focus beyond the role of ‘professionals’ and health services to recognise the resource within ‘communities’ and ‘social networks’. Arguably, this approach needs further definition, however, it does provide a mechanism for recognising that death and dying are shared concerns and it recognises the caring role of family and friends at the end of life.

Community-based initiatives developed from this perspective include ‘Compassionate Neighbours’ at 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. This could be a very useful extension of existing services we have in NZ such as Age Concern’s Accredited Visiting Service.

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. More initiatives such as these which promote social activism for change should be encouraged as they offer the best hope of improving support for caregiving.

It is clear family and friends will play a critical role in meeting rapidly rising palliative care needs 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.

Read more: A humiliating and impenetrable system

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