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Informal network essential for people who want to die at home

We know that most Australians would prefer to die at home, but we also know that most don’t. In fact, most of the people reading this article will eventually die in a hospital. A peaceful death at home…

A strong informal network is a key to being able to die in your own home. jairoagua/Flickr

We know that most Australians would prefer to die at home, but we also know that most don’t. In fact, most of the people reading this article will eventually die in a hospital.

A peaceful death at home requires a constellation of factors, and not all of them involve health services. Certainly, a carer (or two) who can live with the dying person during their illness is almost essential, as is a supportive doctor who will visit the home, a visiting palliative care team, and after-hours telephone back up. Some Australians, but by no means all, have access to these services.

But the strength of the community in which a person is dying and their informal network are also key factors. Some colleagues and I are researching the role of informal networks in supporting home deaths and this is what we’ve found so far.

Informal networks are formed by people from wider circles of friends, neighbours, workmates, fellow members of clubs, schoolmates, friends of the family, and so on. They don’t provide the hands-on personal care most people require at the end of their lives, but they rally around to offer practical and moral support to the dying person and their carer or carers.

The people we’ve been hearing from in this research are cooking meals, doing housework and odd jobs, minding children (and pets), providing transport, hosting parties, and much more. They’re providing company and comfort; a listening ear or a silent companion.

Members of social networks are often, but not always, known to each other, and may “get organised” through their own initiative before offering the support they can. We found one group of school children who were mobilised twice within a short number of years to support peers who had a dying parent. The second time around, they swung into action with a very clear understanding of how best to help.

There’s a cultural stereotype that rural communities understand this better than their metropolitan counterparts, but this is not always the case. We found strong, resilient and capable networks in both settings, as well as networks that were fairly loose and poorly equipped to provide the sort of support dying people need.

In one rural setting we studied, the overwhelming preference in the town was to go to the local hospital’s “palliative care room” to die, as home care was seen to be just “too hard”.

One of the tricky parts of being in an informal network is navigating the relationship with the formal professional services involved. Some of these services were willing to work with communities in mustering the support required, while others seemed reluctant to “let go” of responsibility for care. What’s become evident to us is that a community that’s equipped to “get on with it” will do just that whether the professionals are willing or not.

People can and do die at home and they do it well if they’re adequately supported by a caring network. And the end-of-life period is often a transformative experience for everyone involved. It brings people together, helps them develop useful hands-on skills, and creates a vibrant and growing sense of community and belonging. It’s stressful, emotional and difficult work, but it’s also a time of love and joy and an overwhelming feeling of being privileged and honoured to be involved in such care. It truly takes a village to achieve a home death.

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7 Comments sorted by

  1. Geoffrey Edwards

    logged in via email @gmail.com

    "It truly takes a village to achieve a home death."

    Or legal acknowledgement of people's right to die at a time of their choosing.

    I am sure thoughtful and serious euthanasia legislation would increase the number of people dying at home with loved ones.

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    1. Julia Anaf

      Researcher at University sector

      In reply to Geoffrey Edwards

      I agree Geoffrey. John Rosenberg argues that dying at home 'is often a transformative experience for everyone involved'. However, until the dignity of choice in dying sought by over 80% of the population is respected rather than thwarted, this 'transformative experience' experienced by some will remain elusive for many.

      The possibility of experiencing 'transformation' when dying at home may only be possible for some when it is at a time of their own choosing, surrounded by loved ones but outside the context of others 'developing hands on skills' at the bedside and /or undertaking ongoing 'stressful, difficult and emotional work'.

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  2. Sue Ieraci

    Public hospital clinician

    I see many situations in my work where the very elderly, very disabled, who are at the end of their lives, are brought to an acute hospital when death draws near. Some of these people are coming from nursing homes.

    Apart from the care network described in the article, I see some other issues that get in the way of a peaceful death at home. Family members are often afraid of the final process, and perhaps that the person might suffer (adequate planning often means access to appropriate medication at the end). Others have appropriate medication, but fear that they might overdose and "kill" the dying person (even though that might be merciful). Some family members are not ready to "let go", or feel guilty that they might not have done "enough" during the person's life.

    Bringing about a good death at home requires accepting that death is inevitable, and allowing it to proceed when the final stage starts.

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  3. Regan Forrest

    logged in via Twitter

    If there are data to show that most Australians would prefer to die at home, then I must be in the minority. Personally I think it would be a very traumatic thing to put my loved ones through (borne out by the experience of some of my relatives) and I wouldn't want to subject them to it. It's a very different issue to it just being "too hard".

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  4. Margaret Boyes

    Nurse

    In the 1980s my friend, a teacher, learned basic nursing care from older (female) relatives who “knew what to do” when they cared for her aunt. This year, a colleague in a regional hospital tells of families who lasted a few days, spent large amounts of money on equipment, then brought the dying patient to hospital because they weren’t really prepared for it. (Was this the same rural setting the team studied that found it “just too hard”?) When the support can be mustered and the “village” can do it, it’s surely one of the most important choices. Kids can do it (as the research found). Professional palliative care services can bolster the resilience needed for these informal networks to make it possible. Some deaths are peaceful and painless, some deaths are messy and ethically fraught. It’s complex stuff.

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  5. Cheryl Mayes
    Cheryl Mayes is a Friend of The Conversation.

    Retired Nurse

    Yes, I think the article is very positive and community is so important during the difficult time of caring for family and friends as they come to the end of their lives. Encouraging words, meals, performing helpful tasks that they are unable to attend is very important. But, the involvement and care by trained medical and nursing staff in this area is also very reassurring and comforting to the people involved. In the early 80's I worked for Silver Chain in Perth. After a group of medical people…

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  6. Kerry Marie Parsons

    Community Participation coordinator hospital

    I cam across this article yesterday and thought how amazing it is exactly what happened with our family when caring for my husband at home. Brett was diagnosed with metastatic melanoma in August 2012 - it was a very aggressive mutation, he experienced much discomfort (swallowing difficulties especially), the cancer spread rapidly and he only lived for roughly three months from diagnosis. However I am proud to say that my kids and I managed to care for him in the home in which he was married and raised…

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