New End of Life Patient Charter is a good start but does not go far enough

More than 8,000 GP surgeries in England will be asked to display a new patient charter on end of life care launched today.

The document contains seven ‘pledges’ to make the last few weeks and days of a person's life as comfortable as possible.

It also includes calls for healthcare teams to do all they can to preserve patients' ‘independence, dignity and sense of personal control’ along with ‘doing their utmost’ to ensure patients’ remaining days are comfortable, and that they get ‘all the specialist care and emotional and spiritual support (they) need’.

It has been created by the Royal College of General Practitioners (RCGP) and Royal College of Nursing (RCN) as an example of the ‘best practice’ all patients deserve from nurses and GPs in primary care.

Two of the seven points in the charter mention that patients’ intentions should be written down. The charter pledges that doctors and their practice teams will ‘assist you to record your decisions and do our best to ensure that your wishes are fulfilled, wherever possible, by all those who offer you care and support’ and advises that doctors and nurses should ‘ensure clear written communication of your needs and wishes to those who offer you care’.

We have heard an awful lot about dying in the last few weeks.

Two weeks ago we had national 'Dying Matters' awareness week, and this month is the International Society for Advance Care Planning and End of Life Care conference, being held in London. The NHS is also rolling out its National End of Life Care Programme, which works with health and social care providers across England to improve adult end of life care.

Of course charters, plans and awareness weeks are one thing and may well signify genuine good intentions. But the real proof of the pudding will be implementation at a time when health budgets are being cut and when elder abuse and poor care seems to be on the rise.

The charter comes hot on the heels of a report by the health services watchdog, the Care Quality Commission (CQC) which rated one in seven privately-operated care homes in Britain ‘poor’ or ‘adequate’.

Their inspections looked at nutrition and found cases of patients not being helped to eat, poor monitoring of patients' weight and people not being given enough to drink, with water being out of reach for long periods of time. In one case, a member of staff at Worcestershire Acute Hospitals NHS Trust said they had to prescribe water on medical charts to ensure patients got enough to drink.

So what should we make of this charter? In the main it seems a good attempt to improve patient care at the end of life.

Could it have been better? Most certainly! Here are three suggested improvements.

There seems to be a lot of emphasis on choice, independence, dignity and control. But I would have liked to have seen more recognition of the vulnerability of many people who are dying and a commitment to protect them from financial, emotional or physical abuse.

The charter makes passing reference to ‘spiritual support’ but there is nothing specifically about understanding the patient’s world view or religious faith and how it might help them cope with death. In particular there is no mention at all about understanding what beliefs the patient might have about life after death or how this might affect their dying process.

There is lot of emphasis about writing down patients’ wishes. One hopes this will not result in a push to make patients fill out ‘advance refusals’* that might conceivably be used against them later by someone with an interest in their death. I would recommend that establishing a lasting power of attorney (allowed for under the Mental Capacity Act 2005) is a better option: appointing someone you trust to honour your decisions. Better to rely on a trustworthy person than a piece of paper!

Is there anything sinister in this charter? I don’t think so. One does wonder how the emphasis on choice and control might work were assisted suicide or euthanasia ever to become legal. And no doubt the pro-euthanasia lobby will use this as another opportunity to advance their agenda. But given the huge opposition to legalizing assisted suicide or euthanasia from the medical profession I don’t think we need to have too much concern about that, at least in the immediate future.

In the meantime let’s see if this charter can be used to make a genuine positive difference in the way dying patients are cared for.

* There is lots of helpful background material on advance refusals in a previous statement on the CMF website.