Sunday, November 28

End-of-life care should not simply be about prolonging a painful death | Polly toynbee

ORf all seven ages of life, which one do people value the most? Surely no one puts their final months on top, when all that remains is the hope of avoiding exit through a torture chamber. However, the UK spends more at the end of life, when there is no future left.

The National Institute for Excellence in Health and Care (Nice) injects rationality and public consent into the most ethically charged options in health priorities. Thursday opened a consultation period for new guidance on how much the NHS England should spend on end-of-life drugs, planning to eliminate some of the additional funding for very expensive drugs that can only delay death slightly. About 15% of hospital spending it applies to patients in the last year and almost a third to people in the last three years of life.

Nice sets a standard limit: no drug can cost more than £ 30,000 a year and it has to be a good quality year of life. But a while ago, under pressure, Nice increased that to £ 50,000 for drugs in the last three months of life. Professor Gillian Leng, the executive director of Nice, tells me that public opinion demanded it (the Post had been running a fierce campaign of very expensive end-of-life cancer drugs). But now, he says, public opinion has shifted considerably against spending more in recent months after the Nice consultation with patients, the public and medical professionals. That extra £ 20,000 should be redistributed.

Considering the entire lifespan, Nice believes that any extra money should go to those with serious diseases like rheumatoid arthritis; those with mental health problems; or to help serious genetic diseases that affect children. New gene therapies can provide a unique treatment to a young child that will cure them for life, albeit at a very high cost. A new Innovative Medicines Fund will make some of those treatments possible.

NHS spending has always been rationed and always will be. Decisions must be made in good times, as well as during the extremely low funding of the last decade. The work created Nice as the rational rationer just before NHS spending increased like never before, for 7% per year. Nice ended the zip code lottery where some doctors prescribed poor-quality and expensive drugs, while pharmaceutical companies pressured consultants to prescribe new, or simply copycat, expensive products with unknown value for money.

There have been battles: Pharmaceutical companies have requested judicial reviews of Nice decisions, such as ineffective dementia drugs. But the accuracy of Nice’s tests and the thoroughness of their inquiries mean that Nice has always won. This week, caught in the middle of a heated dispute between doctors over MS treatments, Nice has paused before publishing new advice that would withdraw support for psychological and exercise therapies. But expect Nice to provide what will become the most authoritative standard view.

The body can only instruct the NHS on drugs. The broader irrationality of health spending is, unfortunately, beyond its powers. The Institute of Fiscal Studies says that cuts to social care of 31% since 2010 have led to “substantial increases in visits to the emergency department made by patients 65 years of age or older”, which represents up to half of the growth in the use of ERs by part of that demographic. George Stoye, the author of the report, has found other oddities: among the dying, more is spent on those who have a partnerpossibly because an advocate demands more treatment.

Nice’s proposed cut in additional drug spending during the last months of life can be controversial. Expect heartbreaking stories of desperate families trying to keep a loved one alive a little longer, fueled by costly promises from drug companies. Almost all of these expensive end-of-life drugs are for cancer and Gillian Leng asks: why should cancer take priority? She is in a strong position to ask the question as she recently lost her husband to lung cancer and tells me that drugs provided by the Cancer Drug Fund sustained her last days. But nonetheless, he wants parity between diseases and stages of life.

It should come as no surprise that public attitudes about the end of life have changed. For decades, public opinion has endorsed the right to assisted death. The vast majority want the right to end their own lives whenever they choose. The BMA is likely to drop its objection to assisted death next month. Parliament will soon be able to debate a bill on assisted death proposed by Baroness Meacher and there are more new MPs ready to back public opinion. One argument often used by opponents is that dying people would feel pressured “not to be a burden.” But supporters wonder why it should be an illegitimate reason. Many terminally ill people do not wish to stay alive for a few more months as a great burden on the family and community. That is a matter for each person to decide.

But it is up to Nice to decide whether drugs for terminally ill people receive a higher subsidy than for those with serious illnesses who may have many years of good quality ahead of them. Making it easier to get out of life with the best possible palliative care is the way to spend funds, not on excessively expensive drugs to prolong the inevitable. In this, as in all things, Nice has proven to be the voice of reason.

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