Dr Jonathan Totman, Professor Nancy Pistrang, Dr Susan Smith, Dr Susan Hennessey and Dr Jonathan Martin explain the background to their longer article selected as ‘Editor’s Choice’ in the June issue of Palliative Medicine.
Caring for a family member at the end of their life may be one of the most difficult experiences a person goes through. It can also be deeply meaningful and even rewarding. In this qualitative study, we interviewed 15 recently bereaved participants about their experience of the period leading up to their family member’s death, and the role played by healthcare services in supporting them.
Our original intention was to focus on the final days and hours before the patient’s death. It soon became clear, however, that this period could not be isolated as a distinct phase, and was often not seen by participants as the most important part of their story. Instead, we heard accounts that described the whole trajectory of caregiving. Indeed, for many participants the temporal course of events did not map onto linear changes in their experiences; rather, the whole period was experienced as one of constant and irregular flux.
This widening of our focus speaks to a broader theme concerning the complicated ways in which understanding unfolds at this time. Caregiving brought complex psychological challenges and often involved reconciling seemingly inconsistent thoughts, feelings and experiences – or accepting their irreconcilability. This was a time of profound distress and, sometimes, tedium and frustration; of emotional processing and practical problem-solving; of anger and gratitude; isolation and intimacy.
We drew on a theoretical framework outlined by existentialist thinker and psychotherapist Irvin Yalom to categorise our themes under four broad headings: Responsibility, Isolation, Death and Meaningfulness. Yalom proposes that a confrontation with death can be a time of existential anguish, thrusting us out of familiar roles and bringing us face-to-face with these fundamental human anxieties.¹ We found his framework of four “existential conditions” a useful analytic lens through which to understand participants’ accounts. We think it also provides a useful conceptual map for professionals working in palliative care.
It is perhaps the profound emotional and existential significance of this time, which lent professionals’ words and actions a heightened significance: a few kind words could be hugely comforting, and an unresponsive system deeply hurtful. Our participants’ accounts revealed stark variation in their experiences of professional help. Often these differences emerged early on in their contact with services. Are initial help-seeking experiences perhaps particularly important in contributing to relatives’ expectations?
Our findings highlight the complex challenges palliative care professionals face – how to support relatives as both quasi-colleagues and care recipients? How to “get it right” (a concern for relatives too) when so much is unpredictable and uncontrollable? Perhaps, if there is one finding worth emphasising, it is how important the “little things” were. Cliché though it may be, participants’ accounts were full of examples of the sustaining and consoling power of simple caring gestures. According to Yalom, it is through relationships that the existential givens of life – even death – become bearable. It was their relationships – with family members, friends and professionals – that enabled participants to connect with the meaningful and rewarding aspects of caring, even in the most difficult of circumstances.
1.Yalom, I.D. (1980). Existential Psychotherapy. New York: Basic Books.
Download a free copy of the full article
This post relates to a longer article, ‘You only have one chance to get it right’: A qualitative study of relatives’ experiences of caring at home for a family member with terminal cancer’ by Jonathan Totman, Nancy Pistrang, Susan Smith, Susan Hennessey and Jonathan Martin published in Palliat Med June 2015 29: 496-507. Published online before print January 29, 2015 doi:10.1177/0269216314566840.
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More about the authors
Dr Jonathan Totman and Professor Nancy Pistrang, Department of Clinical, Educational and Health Psychology, University College London; Dr Susan Smith, Dimbleby Cancer Care, Guy’s and St Thomas’ NHS Foundation Trust, London; Dr Susan Hennessey, Barts Health NHS Trust, London; Dr Jonathan Martin, St Joseph’s Hospice Hackney, London, and Harris Manchester College, University of Oxford.