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End-of-life care at home: Being there and being kind

This article has been written especially for Helping Hands and comes from Judith Sixsmith’s work and research as Professor in the School of Health Sciences at the University of Dundee.

About Judith Sixsmith

Graduating in Psychology and Sociology from the University of Keele, Judith Sixsmith is currently a Professor of Health-Related Research in the School of Health Sciences at the University of Dundee. Her research focuses on ways of improving the health and wellbeing of older people marginalised within social systems as well as understanding and developing age-friendly cities and communities for healthy ageing.

How to provide the best end of life experience

Providing good quality end-of-life care for people living at home in the community is a necessary part of ensuring people have a ‘good death’. While the concept of a ‘good death’ is both complex and ambiguous (Cottrell and Duggleby, 2016), it generally involves absence of pain, choices within the dying processes (such as treatment options and place of death), attention to emotional and religious or spiritual wellbeing, maintenance of dignity, presence of supportive healthcare staff and presence of family or other loved ones (Meier et al, 2016).

A Dying Matters survey on this topic have shown that the home is the preferred place for experiencing the end of life for 70% of people (see Ward et al, 2020), but only if pain is well managed and the care and emotional burden on relatives is reduced (Robinson et al, 2016). The home as a preferred place to die provides familiarity for patient and family members, a social context which is manageable and a level of autonomy over what is happening.

While the provision of specialist and good quality palliative care at home is often available during working hours, there are calls for providing such care out of hours, and especially overnight (NICE, 2017). However, overnight end-of-life care can be problematic to provide both in terms of staffing and cost (Ward et al 2020; Spiro et al, 2020). In this article, I want to emphasise the importance of the almost intangible emotional and supportive provision of end-of-life care at home drawn from my own experience as a researcher.

As a researcher working on the issue of home care provision for people at the end of life, I had the privilege to accompany a specialist nurse on their night-time home visits during 2 shift periods. These visits were in response to patients or relatives phoning the organisation helpline asking for support. Often, support and advice could be offered over the phone, but not always, and call-out visits were made each night. I experienced some trepidation as we drove to the home of a patient and their family; the patient’s wife expressing huge concern over the breathing of their loved one.

On arrival, the patient was unconscious and breathing loudly and erratically and the family were very worried that the patient was in distress or pain. The nurse immediately reassured them that his breathing was normal at this stage of the disease trajectory, signalling that the end was imminent, and pointed out that the patient was neither in distress nor pain. She pointed out the relaxation of their facial muscles as evidence of the patient’s comfort and reassured the family that we would stay as long as needed, as long as we weren’t called to a more urgent case.  The family were immensely relieved at the emotional and practical support given and began planning for the end: who they would call up and ensure they were present at death, how they should break the news, who could wait until morning and so on.

Eventually, the time came when death was minutes away and family members present were called into the room with the patient to say their goodbyes. The atmosphere was calm and loving and they requested that we stay in the room with them as he passed away. We were seen as part of the last stages of the journey. Once death occurred, the family retired to the kitchen, chatting about past good times as the nurse and myself tidied the patient and the room ready for final goodbyes. The nurse took family through the processes they needed to set in motion, went through support documents with them and finished her own administrative tasks. This was done with kindness, compassion and hugs, attending not just to the need for information, but to the emotional space created.

We left the home 3 hours after arriving, returning to base. The next week, the nurse forwarded me an email the family had sent to her, expressing their appreciation for what she had done that night, and also extending that appreciation to me as a researcher and observer in the situation; requesting specifically that I should be told of their appreciation. That message from the family meant such a lot.

For me, the whole experience had shown the immense value of professional care being delivered with understanding and compassion. I saw the very many ways in which the home was respected (taking our shoes off, accepting tea, making tea, requesting permissions and so on) while a warm professional support was given. I saw the difference made to high tension in the home, when reassurance of normality was made, and how this enabled a ‘positive’ experience to be had by family members.

I saw that emotional support and knowledge given at key moments exactly when it was needed prevented escalation of worry and upset. I saw that ‘being there’ together with the family and being kind were so critical to a ‘good death’, demonstrating the immense value of compassionate night-time provision for end-of-life care at home.

References

  • Cottrell, L., & Duggleby, W. (2016). The” good death”: An integrative literature review. Palliative & supportive care14(6), 686.
  • Meier, E. A., Gallegos, J. V., Thomas, L. P. M., Depp, C. A., Irwin, S. A., & Jeste, D. V. (2016). Defining a good death (successful dying): literature review and a call for research and public dialogue. The American Journal of Geriatric Psychiatry24(4), 261-271.
  • National Institute for Health and Care Excellence. Care of dying adults in the last days of life. 2017. https://tinyurl.com/z5utyu6 (accessed 30 October 2020).
  • Robinson J, Gott M, Gardiner C, Ingleton C. The ‘problematisation’ of palliative care in hospital: an exploratory review of international palliative care policy in five countries. BMC Palliat Care. 2016; 15:64.
  • Spiro, S., Ward, A., Sixsmith, J., Graham, A., & Varvel, S. (2020). The Cost of Visit-based Home Care for up to Two Weeks in the Last Three Months of Life: APilot Study of Community Care Based at a Hospice-at-home Service in South East of England. Journal of Community Health Nursing37(4), 203-213.
  • Ward, A., Sixsmith, J., Spiro, S., Graham, A., Ballard, H., Varvel, S., & Youell, J. (2021). Carer and staff perceptions of end-of-life care provision: case of a hospice-at-home service. British Journal of Community Nursing26(1), 30-36.

Page reviewed by Judith Sixsmith, Professor of Health-Related Research in the School of Health Sciences at the University of Dundee on April 9, 2021

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