Medical research can not ignore the wishes of the dying forever

study published in the Annals of Internal Medicine on Monday has been causing quite a stir in the United States this week.

It has concluded that, despite national efforts there to improve end-of-life care: ‘proxy reports of pain and other alarming symptoms in the last year of life increased from 1998 to 2010.’

In other words, things would appear to have got worse since a US Institute of Medicine report in 1997 pointed to the suffering of many Americans at the end-of-life and urged a change in practice and attitudes.  There is now much debate about the reasons for this lack of progress.

One of the common discussion threads emerging is that people feel medicine cares more about keeping you and I alive at all costs, than helping us to die well.  One of the study authors Dr Lynn said, is quoted as saying in this NPR blog that: “We throw more medical treatment at patients who are on their way to dying, which keeps them in a difficult situation for much, much longer,” she said. “We’ve increased the number of people put on ventilators and kept in hospitals, and we simply have more treatments that are possible to offer.”

You could argue that this debate has most recently manifested itself over here in campaigns like the Medical Innovation ‘Saatchi’ Bill which continues to make its way through the Houses of Parliament. For it is essentially a measure which is intended to legalise one last, desparate throw of the dice. My worry about this Bill is not how the dice may land but who is throwing them and why.  However, this blog is not intended as an entree into the well-worn debates about this proposal or about issues such as assisted suicide. More what will happen for the vast majority of us when it is time for us to die.

Another theme is that the medical research agenda is dominated by priorities that are focused on finding a ‘cure’ rather than providing ‘care.’ Which is true.  UK research funders must surely act on the final report of the Palliative Care and End-of-Life Priority Setting Partnership which was launched at the Palliative and End of Life Care Research Summit last month, if patients and their families are to experience a good death in the future?  It lists 10 priorities for research identified by the dying, their families and carers and by physicians; no magic pills, instead things that would make a real difference to dying such as 24 hour care, access to palliative care services and pain management.

The report states that only 0.7% of the total budget spent on cancer research in the UK has been spent on palliative care since 2002.  It is a shameful amount.  Especially so given the latest figures Cancer Research UK put out this week saying 1 in 2 of us will get cancer.  When will we learn?  Or is this simply a conspiracy against dying?

However, as one respondent to the NPR blog rightly pointed out it’s not all medicine’s fault.  In fact, I was rather affected by this piece in the New York Times from Ira Byock, a well-known palliative care physician, author and director of the US Institute for Human Caring of Providence Health and Services.  He calls for a citizen uprising on the issue and a Safe Dying Act.  And you will know I am a sucker for citizen action.  You might also read this piece from the US National Pain report to gain a sense of the frustration now being felt with the lack of clear progress in the US.

In the UK we have had the controversey about the Liverpool Care Pathway and then the Government’s announcement in June 2014 of a new approach to care for the dying which puts the emphasis on enabling people to plan well in advance of death.  The Health Select Committee has finished taking written evidence as part of its ongoing inquiry into the  area.  Meanwhile, just a few weeks ago, we had news about the development of a ‘Death test (Daily Telegraph).’  But as the Age UK spokesperson in the Daily Telegraph says the utility of such a tool will be rendered meaningless if we are not all well-prepared for the moment its results are known.

As a society we are clearly struggling with the notion of death and how to care for people who are dying.  But the priorities identified by those for whom death is closest would be a good starting point don’t you think?  Frankly, cost of leaving it to the last minute is too high for all concerned.

 

 

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