Derek Doyle, the first Director of St Columba's Hospice Edinburgh and an international pioneer of hospice care, seeks to define palliative care and share its principles.
Ever since palliative medicine became a medical speciality in the UK in the late 1980s, and in many other countries since then, I have been either trying to devise a simple but accurate definition of palliative care or trying to explain to the sceptics (mainly within the medical profession), that its principles are those of all good, compassionate care such as we all want to give or to receive.
As I often say, there is nothing “new” about genuine, non-judgemental listening which is at the heart of palliative care. Neither is there anything new in empathetic care, in contrast with the sympathetic “I know just how you feel, dear, because I have been there myself!” How patronising, how painfully insensitive if you are the terminally ill person being “helped.”
Good palliative care is a re-discovery of age-old truths
Again, as hundreds of palliative care doctors and thousands of palliative care nurses (working in more than 16,000 palliative care/hospice services world-wide) have come to realise, little of what they have and what they do is new. Rather is it a re-discovery of age-old truths. Pain lessens when a doctor spends a minute or two longer when getting the history or when a nurse squeezes a hand when she asks a question. Everyone knows that there is an immediate sense of safety and order when the senior doctor of the department (whether he is a physician or a surgeon) comes into the unit or room.
A favourite saying of Dr Cicely Saunders (one of the pioneers of Hospice Care) was ” You matter because you are you!” She might have gone on to explain that your colour, social class, income, religion, language and much else, in no way affected your importance as a fellow-human being.
It might be thought that the arrival of today’s palliative care, with all its worldly experience and deep insights, might have heralded relief and enhanced enthusiasm in the ‘caring professions’ committed to caring for those at the end of life.
That has not proved to be the case.
GPs and senior and junior hospital doctors still blame insufficient time for everything, but their palliative care colleagues know that only one or two minutes are needed to restore a sense of safety or peace to a troubled patient or grieving relative.
The belief that palliative medicine doctors seldom experience stress, or frustration, with “blocked beds” or litigious relatives is sad because it is so untrue. They have learned how to live with such stress by sharing everything with members of their multi-professional teams. Somewhat to their surprise, many have learned that holding a hand, offering a minute longer listening (and no more) can both comfort, and reassure that the doctor or nurse cares, and even the doctor/patient relationship of mutual response can be healed.
Why are the fundamental principles of modern palliative care not being adopted or emulated by hospital doctors and GPs who so obviously care deeply (despite what some politicians, managers or media might say) for their patients? How can major teaching hospitals have Palliative Care Teams unbeknown to junior and senior doctors alike? What has gone wrong when a senior doctor tells his new Foundationer that he/she must never call a palliative medicine consultant without permission? Where have professional modesty and honesty gone when some GPs boast that they have never needed to seek the advice of a Palliative Medicine colleague because they “knew it all already.”?
Palliative Medicine is a speciality
After two years of discussions, negotiating, gathering evidence and views from countless medical and surgical “giants” and distinguished GPs, Palliative Medicine became a speciality. Perhaps it is worth recalling that at that time, the distinguished physician who oversaw the negotiations shook hands with the leader of the Palliative Medicine delegation with the words:
“Not a day too soon. I cannot begin to tell you how much you are needed.”
He was right!