Blog entry by Meguid El Nahas
Professor Marcel Levi: Dying should shun treatment and take final holiday...
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.”
The dialysis example is a generalisation as many renal units, including the Sheffield Kidney Institue, offer choice that includes conservative, non-dialytic, treatment for patients with ESRD!
Further, there are NO generalised "shoulds"...but choices and personalised options...
Too much emphasis is put on cost in this article...
Also, healthcare decisions makers are NOT the dying patients nor can they share his/her perspective...3 extra months in healthcare Management is a trivial, and often not cost effective, gain...BUT to the dying patient 3 extra months may seem a lifetime; the notion of time changes when little is left...and this is something lacking in these discussions...on end of life care!!!!
Doctors need to show compassion...but the scope and meaning of compassion varies from patient to patient; for some patients compassion may mean a "holiday", for others it may mean prolonged and painful treatment that allows marginal gains (in the doctors' eyes, but not the patient's...), and for others it may mean other choices the patient and his next of kins choose to consider...
Doctors have been for far too long the main decision makers, it is high time they share more decisions with their patients and put themselves in their place...humility in front of a dying patient and a better understanding of the nature of dying is key to an appropriate and personalised management response.