A look inside family life when someone is dying

A look inside family life when someone is dying

Erica Borgstrom

A week before Rosalind died, her grandchildren and great-grandchildren were visiting from overseas. They all picnicked in the care home’s garden, nibbling on strawberries and commenting on the warm British spring. That afternoon, after they all left for the airport, Rosalind told me she had already said her goodbyes. Three days later, Rosalind lay unexpectedly dying in bed. Her daughter – Sara – was there, holding Rosalind’s hand, softly saying ‘it would all be alright’. Since Rosalind’s son lived several hours away, he only managed to call most days and Rosalind was no longer able to respond. For the next three days as Rosalind died, Sara read poems aloud, chased pain medication from the care home staff, and placed cool cloths on Rosalind’s head. Some would argue that Rosalind had a ‘good death’ with her family – at least Sara – being present at her bedside.

Within many western countries, there are cultural, societal, and even political, expectations that family members will rally around the dying person and provide the care and support they need near the end of life. And while we may think of death as happening under the guidance of doctors it is actually often close family and friends who are guiding us through the process. But what does being ‘a family’ look like towards the end of someone’s life? One way of examining this, is by seeing how families behave and interact every day in this context. As part of my research on end-of-life care in England, I spent over a year regularly visiting families to understand what day-to-day life was like for them.

Other researchers have examined how people continue to act like families even when someone is in a hospice and what family-life is like when a child is terminally ill. From this research, there are three key topics to highlight about how dying is a family practice.

First, there are sociological and anthropological studies that look at what families do near the end of life and illustrate how fluidly ‘family’ can be defined. When it comes to caring for someone who is dying, it is not uncommon for a wide range of people to be considered ‘family’, at least from the perspective of the dying person. Ex-spouses may become important again, partners of adult children may regularly do household chores, and neighbours might check in regularly. This variety is to be expected in a society where ‘blended’ families are common and where traditional familial support networks may be more geographically dispersed. What is and who constitutes ‘family’ is therefore more than kin or ‘blood relations’; family is often defined by people based on various kinds of bonds, emotional ties, and the qualities of the relationship between people.

There is still more work to be done to understand how this diversity and fluidity influences how care and other family practices are carried out and perceived when someone is dying. In research like my own within the UK, it was often the spouse or partner who delivered most of the care, especially intimate bodily care. Daughters and daughters-in-law, more frequently than their male counter-parts, helped out with domestic chores, if they lived near enough, or took time off work to attend hospital visits. Then there were examples of ex-partners or friends who became important as close confidants so that adult children did not have to see the emotional pain of their parents. Although these examples tell us something of what it is like to provide care within the family during this period, they do not tell us much about how such practices are shaped by class, sexuality, ethnicity and culture. More research is being done – and needs to be done – to help us understand how diversity in family life is shaping the end of life.

Knowing that there is an increasing fluidity in what a family is, does not mean that everyone in the ‘family’ accepts these changing arrangements and dynamics. For example, in my study one unmarried couple – Tony and Gayle (who had a considerable age-gap between them) – discovered that their adult children found the increasing intimacy and familiarity brought about through physical care at the end of life uncomfortable. Consequently, Tony and Gayle did not live together in the same house whenever the children visited, even though this made the practical tasks of caring (e.g. checking on wounds, giving medications) more difficult during this time. So, whilst who we think of as family can be quite broad, particularly if someone is involved in providing care, this definition of who can be family and who can do what can also be contested. This complexity – and potential for tension – is not normally how we picture the ‘good death’, and importantly, there is little guidance for the health and social professionals involved in providing end-of-life care on how to recognise and support families in these kinds of situations.

Much of the palliative and end-of-life care research about families discusses the caring tasks and ‘burdens’ that families take on as part of the dying process. And with an increasing emphasis on dying at home (at least in places like the UK), the caring that families do is likely to increase both in terms of scale, frequency and complexity. In the process family members become ‘informal carers’ (meaning they do not formally get paid for the care work they do) and take on responsibility for a wide range of tasks, from domestic chores to nursing. Quite often, it is women within the family that are picking up these ‘caring’ tasks whilst also having to maintain daily family living, often across multiple generations and households.

Yet, what I also observed when I visited families is how they were able to both do caring tasks, which they thought a nurse or paid carer may typically do, and continue with their usual roles within the family and household. This was not always easy for people to accomplish, and was often underscored with humour. For instance, Alfred, who had a progressive neurological condition which affected his ability to move his body, would joke about how his wife, Vera, was ‘better than his beautiful, blonde nurse’, to which she’d usually roll her eyes and retort ‘you and your nurses’. The joke was, however, that his wife was also his nurse – stressing that even though is wife had to care for him, she was still amazing at being his wife. Part of this wife identity and relationship was expressed through their joy of cooking and hosting elaborate parties for their friends.

The second key message from research in this field is that, whilst people may take on caring roles and this can change the roles and dynamics within the family, people also hold on to aspects of their identities that do not relate directly to care or dying. This ability to maintain aspects of one’s daily life, relates to the third message from the research in this field. It is often assumed that death and dying create a great disruption for families and potentially even a crisis. For some families, this will definitely be the case, but death need not be a rupture or crisis for families. Instead, death can be understood as one of many transitions that families experience. During this time, mundane daily routines can act to establish and continue a sense of normality. Many of these daily routines happen within households and neighbourhoods and involve multiple members of ‘the family’. Dying, and caring for someone who is dying, therefore becomes part of this daily experience for the family. This does not mean that it is necessarily without emotional and practical consequences, but it does enable us to think of dying as part of the ‘normal’ family experience.

So, what does it mean if we look at dying as a family practice and encourage healthcare professionals and policies to take this perspective? It means we challenge ourselves to be open to understanding what a family is, and to focus on the actions undertaken with and for each other when someone is dying. It means that we recognise that much of the caring and family-life at this time are part of the everyday things that people do, rather than assuming that families are in crisis and can only focus on the impending death. For many people today in western societies, dying happens over a longer period of time than in the past. Much of this time is spent within the family context. Seeing dying as a family practice is therefore about understanding how dying is something families do, and that this doing helps us in turn, to understand what and who families are in contemporary societies.

Further Reading:
Carlander, I. et al., 2011. The modified self: family caregivers’ experiences of caring for a dying family member at home. Journal of clinical nursing, 20(7–8), pp.1097–105.
Connidis, I.A. & McMullin, J.A., 2002. Sociological Ambivalence and Family Ties: A Critical Perspective. Journal of Marriage and Family, 64(3), pp.558–567.
Ellis, J., 2013. Thinking beyond rupture: continuity and relationality in everyday illness and dying experience. Mortality, 18(3), pp.251–269.
Keating, N. & Eales, J., 2017. Social consequences of family care of adults: a scoping review. International Journal of Care and Caring, 1(2), pp.153–173.
Morgan, D.H.J., 2011. Locating “Family Practices.” Sociological Research Online, 16(4), p.14.

 

Erica Borgstrom is a lecturer in medical anthropology and end-of-life care at the Open University. She is the membership secretary for the Association for the Study of Death and Society. The research that this article is based on is from an ethnographic study of choice and end-of-life care that Erica conducted between 2010-2013; all names referred to here are pseudonyms to protect people’s identities. Since then she has continued to examine how people experience the last year of life and the implications this has for policy and practice. She has recently hosted a workshop on researching end of life care from social science perspectives. More information about her research and publications can be found on her Open University profile and professional website.

2 Comment responses

  1. Avatar
    February 12, 2018

    My research found that families do want to care for their relatives in many settings but have greater autonomy at home. Heath professionals need to support choices as caregivers/ families are so capable if privy to the right education, information, emotional and practical support to care for the unwell the dying, the death and after death care – that is safe, legal and ethical.

    Reply

  2. Avatar
    February 17, 2018

    The modern family is often separated by wide geography, spans the very young to the very old, and often includes individuals living non-traditional lifestyles. The slow death of old age and/or chronic illness can leave families unable to accept death when it nears, choosing more medical treatment instead of less to prolong death and not enhance quality of life.

    Women absolutely are the most frequent source of care and companionship for the dying, while working at salaried jobs and raising children or grandchildren.

    Support systems like death doula training needs to be available to everyone because all of us will be asked to serve someone we love in their final weeks and days of living. We need guides as well as more hands to hold each other.

    Reply

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