Back to the Future – Part III – Responding to the experience of suffering

Categories: Leadership and People & Places.

Recognising and responding to suffering has driven many of the service developments at St Christopher’s over the years. Stories about Cicely Saunders and other global pioneers in the field of palliative care confirm that they were driven by a desire to alleviate suffering as a core activity of their career.

Conversely, they tell of profound frustration when working in specialities where this was not the case encouraging their move into palliative care.

The opportunity to redress suffering has been a major driver for many individuals seeking the opportunity to practice palliative care over the years and to learn its skills via St Christopher’s.

It is also at the heart of many other people’s involvement with the hospice, even if they are not contributing directly to care. Those working in support services recognise an important role for them in enabling the efforts of clinicians – so that they can give all their attention to those in their care, rather than attending to issues pertaining to wider organisational life.

Where these staff can contribute directly to enhancing the quality of life of someone dying or grieving, then their working life is enriched, giving rise to significant professional and personal satisfaction.

One response to suffering, particularly in the early days was the development of new services that could enable people to enjoy life of a better quality before they died.

Cicely Saunders and others listened hard to stories of the experience of life, death and grief on the part of individuals to shape organisational strategy.

The story of the birth of home-based hospice care told by one of the founding doctors is a profound example. The doctor describes how an inpatient in the hospice talked explicitly to the team caring for her about wanting to be at home. The patient begged them to think anew about the possibilities of taking the principles and practice of care from which she had benefitted on the wards back into her home environment. As they did so, the first domiciliary palliative care service was born.

Whilst many services deemed to be core and vital in the work of the hospice today, the stories told suggest that many were grown incrementally and with significant challenge in their course.

By way of example the bereavement service was denied a place initially in the range of care available, due to fears that its focus would upset people already suffering. Only after two suicides was the idea revisited and at that point not only was a service created but a major philosophical advance made – acknowledgement that families should be the main unit of care

Another significant response to suffering was sustained investment in research to build a knowledge base related to the speciality of palliative care. Stories are told of seminal research into pain and symptom management, which formed the basis of drug formularies used across the world and which informed wide-reaching lectures, talks and articles.

Many of the stories of progress in care at the hospice today continue to focus on the experience of suffering – and specifically that focused on the disruption arising from a diagnosis of a life-threatening condition.

Attention to a breadth of experience of suffering is notable in the stories – highlighting, for example, financial pain and the experience of uncertainty alongside those domains more commonly recognised. Responding to such suffering continues to serve as a priority of the teams working at St Christopher’s with ongoing attention to spiritual or existential pain, seen as significant also.

That said, some contributors identify areas of suffering which the hospice failed to attend to historically, or which it could better address moving forward.

Historical failure on the part of the hospice to attend to the needs of people with HIV is cited on a number of occasions by contributors to this project. New and sustained investment in care for people with dementia is a contemporary ask of the hospice. Its current efforts to care for people with dementia are deemed to be inadequate given the length of time that people with dementia and their families suffer prior to referral for palliative care. There is an explicit ask for early access to care and support for those living with this condition.

Opportunities to respond to those who suffer is not simply the domain of clinical staff.

Volunteers working in the hospice shops talk of providing a listening ear to individuals who are bereaved, live alone or experience profound isolation. They tell stories of being subject to similar suffering, particularly if they cannot enact their role as volunteer for the hospice, for example during the period of the global pandemic.

What is striking is the shared experience of pain on the part of those offering care and those who seek it. One shop volunteer confirmed her role in reaching out to those who come in to the shops and spoke about an experience of profound loneliness and of being housebound in the period of the pandemic, when she was unable to access social networks or enjoy an important sense of value attributed by her to this work

I learned a sort of hopefulness. Obviously care of the dying can be really difficult, but there are ways that you can be helpful to a person in great distress. And it acted as a kind of base which I could always refer back to and I kept in contact with the team at St Christopher’s which is really unusual. It wouldn’t tend to happen like that in hospital.

Dr Louis Heyse Moore Former Doctor, St Christopher’s Hospice


This is the third in our serialisation of “Back to the Future – Reflections on an Oral History of St Christopher’s Hospice”

Part I – Introduction

Part II – Being prepared to be Radical


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