The end of most of our lives will not be planned or expected for long. The “handover” from oncology and chemical treatment to attempt cure, and palliative and then terminal care, is not good enough. Those in charge of the former are reluctant to give up and hand over to the latter. The result is a lot of unnecessary discomfort and stress, and often in rural areas, of travelling long distances to achieve very little. The interface between these specialities would be best facilitated by a GP, preferably one with a palliative care interest.
Advanced directives would also be helpful, and other countries are showing us the way.
Sarah Kate Templeton on June 25th in the Times reported: Professor Marcel Levi: Dying should shun treatment and take final holiday – Hospital chief says family time would give patients a better end to life
Patients who are dying should be allowed to go on a final holiday rather than be subjected to gruelling treatment, according to the boss of one of Britain’s largest NHS trusts.
Professor Marcel Levi, a practising doctor and chief executive of University College London Hospitals, said the NHS is wasting time and money treating dying patients at the end of their lives.
He said: “I often think, ‘You would be better going on holiday with your family and you may have a little shorter but a lot better end of your life.’”
Levi, who is Dutch and was previously chairman of a leading hospital in Holland, said: “I do not find the discussion, ‘Which patients should we not treat any more at the end of their lives?’ very well developed in the UK.
“The patients do get anti-cancer treatment when the oncologist, probably the patient and his or her family know it is not going to contribute a lot and it may cause a lot of safety problems and harm.
In Holland, Levi said it is common for patients to state they have had enough treatment and do not want to go back into intensive care.
In the UK, however, he said patients are automatically continuing with treatment in the absence of an honest discussion about what is going to be achieved.
“Patients who are 85 years old do not have to expect a lot of gain from haemodialysis [kidney dialysis], but they still go there three times a week. They feel terrible on the day of dialysis, they feel terrible the day after dialysis. That is six out of seven days of the week,” he said.
“Somebody should at least discuss with them, ‘Is this useful for you? Are you really having any gain of quality of life by doing this?’
“They have a very short life expectancy and we are actually spoiling the last weeks of their lives instead of making them comfortable and them spending quality time with family and friends.”
About 43% of NHS spending goes on the over-65s, according to the Nuffield Trust healthcare charity. This age group also occupies about two-thirds of hospital beds, National Audit Office figures show. Between 10% and 20% of the NHS budget is spent on people in the last year of life, a government-commissioned palliative care funding review found.
Dr Gordon Caldwell, a consultant physician at Worthing Hospital, West Sussex, agrees that British doctors — himself included — often avoid frank discussions about letting patients die.
He said: “Often, as doctors, we hold on to hopes of marginal benefits — ‘You could live 30 days longer, perhaps to three months’ — but omit, ‘This will involve 60 days attending hospital, so you could not go to see Snowdon and Anglesey with your grandchildren.’
“We have relatives demanding, ‘Do everything, doctor.’ Those same relatives, when the patient dies, ask, ‘He didn’t suffer, did he?’ Well, if we were honest [we would say], ‘Yes, he did because you asked us to do everything.’
“I strongly suspect many patients would want less medical interference, such as tests, treatments, last-ditch attempts at chemotherapy.
“Doctors must learn to be honest about the true likely effects of their tests and treatment — a marginal benefit in a few patients at a lot of opportunity loss. A day spent having chemotherapy is a day not with the family.”
Levi said it is up to physicians to broach the subject and it is often welcomed by patients and their families.
“It is the doctors who start the discussion. It was a bit tricky when we did this [in Holland] but it actually turned out that many, many patients and their families were extremely supportive,” he said.
“There were many families of patients who died of cancer who said, ‘If I knew before this was going to happen, we would not have done this operation or this chemotherapy.’”
Professor Karol Sikora, former chief of the World Health Organisation’s cancer programme and chief medical officer of Proton Partners International, a private cancer and healthcare specialist, said there are now more than 25 cancer drugs available that cost more than £50,000 for one year’s treatment and in most cases these would prolong life for only an extra three months.
He added: “There is so much pressure to be active, driven by the pharmaceutical industry and the breakthrough mentality. Giving patients permission to let go has got a lot harder over the last decade.”
However, Baroness Finlay, a crossbench peer and palliative care consultant, believes patients must be given the options of treatments that could help them live longer.
“Sweeping judgments about a person’s quality of life are dangerous,” she said. “Anyone can refuse or cease treatment and that wish must be respected but it becomes dangerous when people are not given the options that might help them live longer and live well.”
Judith Kerr, 94, the children’s author and illustrator who wrote The Tiger Who Came to Tea, has already made her preparations. Last year she told The Sunday Times she keeps “a little piece of pink paper signed by the doctor, saying ‘Do not resuscitate’.”
She added: “Having had a good life, to go through this misery, and at great expense to everybody else — expense not only in money but in emotion.”
Advanced directives needed. Choice in death and dying. Lord Darzi warns of “draconian rationing”. GPs need to be involved at the interface of oncology and palliative care.
Social Care is means tested, so why not health? More funds for cancer care is appropriate, but in Wales it could go on free prescriptions.
Selecting doctors, and portfolio careers crossing from primary care to Hospital.
Just like Brexit, health is a complex and long term problem. Decisions on both should be taken only by experts..
The Canadians shame us with their plans for end of life care
Cancer patients given new drugs that won’t help them. GPs needed in oncology clinics…