Caring for those approaching death – chaplaincy and palliative care
In contemporary Western society, death is largely medicalised. While in former generations many people died at home, relatively young, and therefore an exposure to death was often an all-too-normal part of family life, today the norm is to die in hospital, in old age. A 2010 report by Demos found that of the half a million deaths recorded annually in Britain, around 60% took place in hospital, 17% in care homes, 5% in hospices and 18% at home, a figure predicted to fall to 10% by 2030; yet surveys consistently show that 60-80% of people express a wish to die at home.
Perhaps the place of death is not really the main issue: people may express that preference out of fear of institutions, or nostalgia for an extended family that no longer exists, or just wanting to be ‘cared for’. The reality is that providing at home the kind of palliative care and nursing that someone can need may be very difficult, as well as stressful and exhausting for their relatives to cope with. Better perhaps to ask how someone wants to be cared for than to focus on where. Having said that, guidelines for end of life care include discussion of a person’s preferred place of care (PPC).
For many in the medical profession, death may be seen as a failure. Such a view contrasts with the perspective that death is an inevitable part of life, and still more with the Christian view that death is not the end and that Christ has triumphed over it (1 Corinthians 15:55, StF 298). The image of John Wesley on his deathbed, and his words “the best of all is, God is with us”, reflect the much older Christian concept of making a ‘good death’. This was expressed too in the prayer known as the Profiscere, “Go forth, Christian Soul”, on which see the Revd Dr John Lampard’s book of the same title.
Palliative care. Palliative care has been recognised as a specialism in the UK only since 1998. NICE (see below) defines palliative care as “the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments” (2004).
This makes it clear both that the aims of palliative medicine extend well beyond pain relief, and that it should not be seen as something that begins only in the last days or weeks of life. Early reference to palliative specialists can be hugely beneficial to patients and their families. Palliative care is by no means the preserve only of hospices, but their growth stems from Dame Cicely Saunders’ vision and commitment: “You matter because you are you, and you matter to the last moment of your life”. The first modern hospice was founded by her in 1967; today there are over 200 in the UK.
Chaplaincy. Helping someone face death, or accompanying them in their last hours, is a role that may fall to any of us. But chaplains – notably in hospitals and hospices but also in prisons, the armed forces and elsewhere – may be called to minister to the dying or their relatives on a frequent, even daily, basis. The Personal view section below, includes reflections by chaplains on their work.
While acknowledging that chaplaincy itself has necessarily been professionalised in hospices and elsewhere, the ability to listen and the willingness just to ‘be there’ with the sick and dying remain at the heart of the role and voluntary chaplaincy teams still have a role to play (see the section on what we can do). Chaplains are not angels or saints; they are not there just for those who are ‘religious’, still less to seek deathbed conversions. Some speak of being ‘on the edge’ between faith communities and secular organisations, or between the professional community and the frailty of human life. Supporting chaplains themselves is as vital as the support they provide to patients and families.
“Attempting to provide spiritual care to everyone equally is like catching snowflakes. In a snowstorm, each snowflake is indistinguishable, yet each singly is unique and wonderful in its own right” (Stig Graham, writing in Chaplaincy in Hospice and Palliative Care).
Key resources for caring for those approaching death
Personal and professional reflections on palliative care by Peter Rookes
One chance to get it right! A personal view by Martin Abrams
Exploring the boundaries of comfort – perspectives from a hospital chaplain by Deborah Wilde
The God who waits with us in the mud – a view from hospice chaplaincy by Bob Whorton