16 May 2017
To mark the International Day of Families on 15 May, Sheila Payne, Emeritus Professor, International Observatory on End of Life Care, Lancaster University, UK, launcheed the fourth of the Salzburg Global Seminar questions on the EAPC Blog.

Palliative care interventions have historically neglected the essential role played by family and friends in supporting people near the end of life. This is surprising since virtually all of us will at some point in our lives be, albeit unwillingly, witnesses to the final illnesses and deaths of close family members. This is therefore a common, shared global experience. But will caring for your loved one bankrupt you emotionally and financially?

The answer to this question probably lies in a number of factors including your personal resilience and resources, the network of social and emotional support available to you in your extended family, community and faith group, and in the health, social care and welfare system that your country provides. For most families, facing the loss of a family member is a distressing time but is mitigated by adequate resources and support systems. However, for those with inadequate social support or networks – perhaps because they are refugees, are older people or poor, or live in countries where health care or health insurance is too expensive, or social care is not available – then facing a loved one’s end of life can be literately devastating.

What can you do?

There has been a growing acknowledgement of the emotional impact of witnessing the decline and death of a close relative. This is usually labelled as ‘carer burden’, which includes both the emotional impact and also the caregiving tasks involved in supporting a dying person. There are now many ‘tools’ that attempt to measure this ‘burden’ and even a few that recognise that caregiving can have both positive and negative elements. Palliative care professionals can ensure that the emotional and support needs of families are regularly assessed and addressed, before a crisis is reached.

What has perhaps received less attention is the financial impact of having a dying family member within one’s family. Evidence from the USA and Australia suggests that illness and medical debts are a major reason for bankruptcies. A recent analysis of out-of-pocket expenses in the last year of life for older people in 13 European countries indicates that they ranged from two per cent to 25 per cent of median household income (Penders et al 2017). Once again, routine assessment of economic circumstances and the need for welfare support should be included within palliative care.

Finally, as an international palliative care community could we be doing more to highlight the often hidden impact of the final illness on the emotional and financial welfare of family members? After the death, as we receive their gratitude and thanks for the palliative care that we provided for their loved one, do we stop to ask how they are managing? Can we be more proactive in highlighting their needs to governments and policy makers?

[Originally published at eHospice.]

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