This article appears in the November 2006 edition of the Catholic Medical Quarterly
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A Hospital Chaplain's Story
Talk delivered at the Annual Symposium of the Guild
April 28th - 30th 2006
After 30 years as a Hospital Chaplain in a large Teaching Hospital in Sheffield I welcomed the opportunity to share with you, at this Palliative Conference, some of my thoughts and experiences. Back in the 1970's there was not much talk about "palliative care" as a separate speciality - dying patients were cared for in their homes or on hospital wards - maybe in the Geriatric Unit.
I began to see the problems as a student at St. Michael's College and St. David's Hospital in Wales. Visits to patients in hospital showed us how difficult it was to communicate fully with the dying and their families. My wife was in nurse training at this time and this helped to highlight the problems. I moved to the University Hospital of Wales as Assistant Chaplain. Our Senior Chaplain used to arrange an annual Symposium and one year we had Dame Cecily Saunders come to speak to us on Pain Control and the form of care given at St. Christopher's Hospice in London. Although this focus on pain control enabled a patient to die with greater dignity, I don't remember any talk of palliative care as a separate issue or of spiritual care. I do remember, however, Dame Cecily Saunders saying that when you have finished talking to a patient and you are walking off the ward you should always look back because then you will truly see the patient as he or she is after hearing bad news. I was reminded of this recently while watching a television programme dealing with dying when the camera scanned back to a patient who had received bad news. While the doctor was with him he was sat upright and alert, but after the doctor had left his bedside he was sitting in a more dejected pose. It created a very poignant image of a man who knew he was dying but who was putting on a brave facefor the world. Was anything more needed?
My experience in hospital; where patients often did not know they were dying or were told very bluntly "yes they were"; and with my own father-in-law's terminal care; and with the common situation where we were only called in at the last minute to give the last rites with no opportunity to provide ongoing pastoral care; I began to realise that there was a lot more we should be able to do.
What became obvious was that NHS staff needed training in dealing with patients who had a terminal illness and could not just learn "on the job". During the 1970's the NHS beganto experience a large number of complaints about terminal care and how relatives were dealt with during and following the death of their relative.
In 1971 I came to Sheffield as Chaplain to the Northern General Hospital, a large Teaching Hospital with over 1000 beds. Guidance to staff was being issued to improve terminal care in Hospitals and Nursing Homes and nationally there was increasing awareness of the need for Hospice type care as at St. Christopher's and here in Sheffield at St. Luke's (the first UK Hospice outside London). It was very slow in having an effect, we needed experts in Palliative Care and experienced and well-trained staff with specifically designated beds.
During the late 1980's the MacMillan Nurses at our hospitals (with the help of the Trent Palliative Care Centre) carried out a survey amongst nurses caring for the dying. They found that these nurses did not generally feel that their dying patients had any distinct psychological or spiritual needs. These nurses, of course, were focused on "cure", it was not entirely fair to ask them, as they were acute medical ward nurses. Following this survey the MacMillan Service wrote a report recommending that the Hospital have a terminal care unit. It was many years in coming, year 2003 to be precise, and the 17 beds had to come out of the Chest Physicians' bed quota.
There has been a large growth in Hospices over these last 25 years and I understand that there are now about 324 Palliative Care Consultant posts, though there are many vacancies; clearly, caring for the dying is not the most attractive medical career! However, despite all the growth in Palliative Care there are still a lot of complaints received by the NHS concerning end of life care.
The complaints cover such matters as:-
- poor medical care
- failure to communicate clearly lack of dignity
- lack of caring attitude
Relatives and patients, when asked what were the most important factors in having a good death, said:-
- being with the ones you love good pain relief
- privacy and peace
- discussion of medical needs
In a small research project carried out in Sheffield in 2004, exploring the feelings and resources of nurses caring for the dying, the nurses put the following as contributing to a good death:-
- good communication
- pain free
- loved ones present
- support when needed
- peaceful environment
- clear plan of action
- without fear
- not prolonged
With continued pressure on beds and other resources and lack of community funding for those who prefer to die at home, the D of H's response to complaints is directives and guidance on death and dying. Cancer Care Centres have to meet stringent standards including those for Spiritual Care. And there are standards in Health Care with Hospital Trusts and PCT's have to measure up to, with random visits from the Health Care Commission.
We have to change our approach and our NHS culture. Trusts in Liverpool and Doncaster, for example, have introduced "end of life pathways" which take greater account of patients' social, psychological and spiritual needs. Here in Sheffield we have developed the single assessment process and Cancer Services are producing their "end of life pathway".
But pathways and assessment processes don't change cultures or attitudes, particularly to provision of spiritual care.
In a survey amongst 234 patients and 225 staff carried out by our Chaplaincy in 2005, patients put the following as the top 5 tasks for Chaplains:-
- Supporting the bereaved 70%
- Enabling patients to use their religious resources to help cope with their illness 64%
- Supporting patients with problems and concerns 63%
- Providing help in time of crisis 62%
- Contributing to end of life care 59%
74% of patients said that spiritual and religious resources were important in coping with being unwell, while 77% felt that these resources helped them recover.
74% said they had been asked their Religion on admission but only 30% whether they had any religious or spiritual needs; in the "nursing process", these 2 questions were far apart, when obviously they should be dealt with together. 69% said they wouldn't mind a Chaplain talking to them while in Hospital.
In our new Palliative Care Unit, the team approach brings referrals to Chaplaincy from doctors, nurses and social workers. Spiritual needs are a part of the Multidisciplinary Team approach. I believe we can bring about this change in culture and emphasis within acute medicine too, so that we care for the whole person and give good palliative care to those who are unable to be admitted to a Hospice or Palliative Care Unit.
Not long after I arrived at the Northern General Hospital I had been providing spiritual care to a patient in the Cardiac Unit and as I walked off the ward I noticed a female patient had a tabloid newspaper on her bed with the usual front page "Bad News" story all over it. As I passed by I commented that "it was always bad news" and she responded "Yes, it's always bad news". It was not till I was off the ward and walking down the stairs that the penny dropped and I realised that she was not talking about the newspaper story but that she was talking about herself. On this occasion I was able to return to the ward and sit and talk to the patient about her fears and concerns. But it brought home tome how important it is for all of us in the caring professions, not only to hear what is being said, but also to listen to what is being said.
Over the years we have all got it wrong sometimes, but I believe doctors, nurses and Chaplains are increasingly getting it right, to the satisfaction of patients, relatives and staff.
Rev. Canon David Equeall is a Hospital Chaplain in Sheffield