Open letter from a carerBMJ 1996; 313 doi: https://doi.org/10.1136/bmj.313.7053.370 (Published 10 August 1996) Cite this as: BMJ 1996;313:370
Dear Priority Care Commissioner,
Thank you for giving me the opportunity to comment on your draft proposals for continuing care health provision. On behalf of carers I am concerned that the eligibility criteria for palliative care have not yet been finalised. And the word “dying” is ominously present.
What about the long term living and those who live with them?
Carers seem to get only a politically correct mention in your document. Carers are the people who are trying long term, usually alone, to darn torn lives into something bearable—at the blunt end of chronic illness or disability. And it is a blunt situation. After all, no one talks of carers for people with disabilities or illnesses from which they are likely to recover. Carers are people who are dealing with the obverse, mucky, side of the embroidery of life's rich pattern.
Can you imagine how lonely this is? Nurses in hospitals, or even residential homes, have regular support when they are on duty, which is not for the bulk of their waking hours. They are off duty when asleep, unlike carers. They have colleagues, ancillary staff, and paramedical staff who share the care of patients. They have doctors on regular rounds to consult with and advise them. It is easy to understand that when health authorities plan for patients with terminal or distressing chronic diseases cared for in medical establishments they do not consider those who look after them. This is hospital think.
Carer think takes into account the 24 hours, 365 days, decades, almost totally alone, with people who are often in the sort of distress that is, by many people, associated only with the terminally ill. Living continuously with someone in real pain presents something more than a challenge. As does living with someone who cannot feed himself or herself and has problems with swallowing saliva, giving rise to painful sores.
Palliative care is exactly what these people need—and the help their carers require. Medicine is now so specialised that it is only staff in palliative care units who really understand about relieving distress. The idea of palliative care for carers is like an oasis in a desert of despair.
I speak with real feeling about this. I cared for my husband, who had Parkinson's disease, which started in 1956. He attended a large teaching hospital as an outpatient. The consultant with whom we dealt was a neurologist. In 1982 his condition was pitiable. He dribbled continuously, he was incontinent, he was in constant danger of pressure sores, and his muscles went into painful spasms. He was, quite often, affected by the psychiatric and muscular side effects of L-Dopa. The neurologist's solution was the only one he knew—more L-Dopa.
To say that I was desperate would not be an exaggeration. My sister is a state registered nurse, living hundreds of miles from us. She telephoned the nearest hospice to ask if it could give me hands on advice, tuition, and suggestions—this was all I wanted—on how to ease his suffering. Palliative care, in fact.
Our general practitioner was extremely helpful and supportive in his own sphere, but when I did get help it was he who was most intrigued by the techniques, which were new to him. This seems to me to be fair enough. Real general practice is a specialty too. Is it fair to add another trick for general practitioners to keep up their sleeves?
The hospice would not help—with many a kindly apology—because my husband was not thought to be dying—that is, terminally ill. It rejected the complexity of involvement with chronic conditions. Several months after this episode my husband died. But to my mind his death and its timing were irrelevant. The fact that the hospice subsequently said that it would have helped, had it known of his imminent death, made me incandescent with anger. What mattered was his suffering—and mine—while he was alive. I have never forgotten that feeling first of hope and then of rejection.
Palliative care has come some way since then. This makes it even more important that it should be available to those who need it on request, no matter how long they are expected to live. And if this costs—well, so does everything.
I recently went to a lecture for carers by a nurse who was a specialist in palliative care. I felt renewed hope until I read the phrase “terminally ill” in the eligibility criteria.
This is why I reject, very strongly, on behalf of all carers the idea that palliative care should be available only to the dying.
I make no apology for being emotive. Caring is emotive. We would all rather consider these matters, dispassionately and in theory, from behind a desk. Care in the community must work across the kitchen table, not the desk and the hospital bed.