End ‘Palliative Nightmares’

201704-Deverall-Clive Mar17

Clive Deverall saw palliative care in WA from the 1970s believed we are still failing those dying ‘nightmare’ deaths.

201704-big-Deverall-Clive Mar17The late Clive DeverallAn evening in September 1977, Winthrop Hall at the University of WA was packed. The visiting speaker was Dr Dame Cecily Saunders – the ‘real pioneer’ of modern palliative care.

She described the establishment of St Christopher’s Hospice in London and the opposition from medical colleagues and administrators to the concept of the hospice and what she was doing as a doctor. She was not to be deterred.

Question time went on for 40 minutes before the evening wrapped up. But the fuse had been lit.

What had been two or three small WA groups with an interest in hospice palliative care ballooned. The late Anglican Archbishop of Perth, Geoffrey Sambell, provided local leadership but soon withdrew as one or two locals involved, including a doctor, were keen followers of Moral Re-Armament (MRA), which later morphed into Initiatives of Change.

Sambell did not approve of MRA’s muscular Christianity. In the vacuum created by Sambell’s absence the then Cancer Council (later the Foundation) stepped in. By 1982, the Cancer Council, with donated funds and enthusiastic professional input, persuaded a reluctant Silver Chain to partner them in launching the State’s first hospice home care service known as the Hospice Palliative Care Service (HPCS).

Medical and nursing input was led by these enthusiasts who slowly but surely persuaded colleagues to join them. There was resistance by some in the medical fraternity, with one senior consultant even describing the Cancer Council as ‘amoral’ for planning to build a Cottage Hospice in Shenton Park to provide specialised palliative care to those who could not be cared for at home.

Dr Rosalie Shaw also opened a dedicated in-patient facility at Hollywood Hospital. The momentum led to the Cancer Council handing over administration of the home care service to Silver Chain so it could concentrate on exploring options for in-patient facilities, which ultimately led to the opening of The Cottage Hospice in 1987.

By this stage the stresses on medical input was evident as was the need for structured professional education. For a doctor at that time, palliative care added little to a career profile and there were those who mockingly described those doctors and nurses who worked in palliative care as ‘White Knights’. Community support was still rock solid and donations and bequests poured in.

So this was how palliative care became embedded and subsequently funded within the health care system. All the lobbying to promote palliative care involving media, community groups and politicians, was like spreading a virus. Palliative care became a panacea for all those at their last station in life.

Government and politicians, state and federal, now use palliative care as a shield, especially if euthanasia is raised. Yet those scenarios where the best palliation cannot control excruciating, fast-changing, end-stage symptoms are ever present. Even Palliative Care Australia has given that scenario the professional nod.

Professional training and the presence of consultant physicians has led to more specialisation. What started out in the early days as a ‘Nursing Model’ is today embraced my mainstream medicine. But does the most refined skill and knowledge of the increasing array of drugs help when a demented patient is still screaming in pain and the health professionals don’t know where to look, what to do or what to tell the patient? Such scenarios have been described at professional meetings as ‘Palliative Care Nightmares’.

So why not end those ‘nightmares’ and assist the patient to an early death. Not ‘Terminal Sedation’, which is a Clayton’s option as the patient still has to die.

At the very least, why don’t the palliative care associations discuss physician-assisted death or euthanasia and allow a free, anonymous count of their votes.

ED: Clive Deverall died on March 11 before he could see this opinion piece in print. He was former President of Palliative Care WA and board member of Palliative Care Australia. He was Director of the Cancer Council WA between 1979 and 2000.