In a previous post on this blog – “Palliative Care Definitions & Discoveries” I told of what seemed like a discovery to some of us generously described as “pioneers.” We had suddenly realised that palliative care was no more, no less than good clinical care whatever the pathology of the illness or the gender, colour, class, creed, means, politics of the patient or where he /she lived.
If that was so – and everyone we spoke to confirmed it – why was it apparently being done so badly not only in many hospitals but in general practice? Why did it seldom get a mention in academic curricula? Why was so little research being done ? We met colleagues and called meetings across the country to study then try to answer some of these questions.
Research and education
The question of research was probably the easiest to answer. Care of the Dying (so-called here because the term’ Palliative Care’ was only widely introduced in the late 1980s) aroused little interest in pharmaceutical companies, the principal sponsors of research. In crude parlance ‘there was little in it’ for them!
With a few notable exceptions it rarely got more than an hour’s mention in medical schools (and for most nurses it was only The Last Offices) whilst many hours were devoted to addiction, drug dependency and opiate – induced respiratory depression. Is it any wonder that newly qualified doctors and nurses felt inadequate, frightened and unsupported (as very many told us ), feelings that all-too-often stayed with them as they progressed to higher qualifications and permanent posts, often without mention of any facet of palliative care.
Changes were taking place in public and medical professional expectations. ‘Cure’ seemed a reasonable expectation for an increasing number of conditions even if it meant unpleasant, expensive treatment. Diagnosis was made easier and more accurately with scanning, isotopes and ‘ostomies. Oncology surged ahead with radiotherapy and ever-increasing chemotherapeutic agents. “Keyhole” surgery become a common-place, not a rare event. Many may be offended with the question but had curing become much more exciting and rewarding than just caring? Illustrious doctors had collected their higher qualifications, done useful research and were now to be found in prestigious medical school and hospitals, pushing back the boundaries of medicine, but not doing hands-on palliative care, nor honouring it with a place in their lecture programme.
In the world of Palliative Care it has become almost a blasphemy to question if the importance attached to team working has been as helpful and creative as was always expected. Nowhere was it ever said that nurses should “ take over” from doctors or visa versa but I have met many GPs who boast that they never need the help of a Consultant in Palliative Medicine but they find palliative care nurses invaluable. Is this one reason we see fewer and fewer Home Palliative Care Services than a few years ago?
Have well-documented changes in our society played a part in ‘care of the dying’ having such a low profile. Today we are conscious of rapidly changing demographics – more are living longer than ever before, more are retiring earlier than their forefathers, resulting in us having two generations of retirees, one even more dependent on family and state carers and their primary care teams, the other, once hopeful of taking up hobbies and still being of use to their own siblings but finding themselves caring for the 80-100 year old retirees.
One gets the strong impression that many of today’s health care professionals regard hospitals as diagnostic centres rather than care centres and that much of the palpable tension in them is due to ‘bed-blocking’ whilst the waiting list for diagnostic or emergency procedures gets longer by the day. It is difficult to explain why so few expected deaths occur at home when all studies show that home is the preferred place of death. Is it related to the diminishing number of home visits being done by GPs or the time constraints on community nurses visiting terminally ill at home, constraints imposed by their managers? Could it be that many GPs think better care can now be delivered in hospital than at home now that so many hospitals have consultant-led palliative care teams and they – GPs – are burdened with paper work and doing fewer home visits ?
The basics of care
Why are many of the basics of good care (including palliative care) not to be seen in many hospitals?
I am thinking of leaving drinks, newspapers and lightweight books within reach of patients so that they can help themselves. Why are more patients not encouraged to have a favourite family photograph on their locker? Why are patients called by their first names, a practise that many old people find offensive or patronising? Why is it always assumed that an elderly person is deaf?
Did we really have to fight for specialty status for palliative care for the few to bring back compassionate caring for the majority?