Julia Riley on end of life care

The last nine months have seen significant efforts to break down the national reserve which surrounds talking about end of life care and death. The launch pad was the Government’s End of Life Care Strategy published last July. By outlining a six step end of life care pathway the strategy provided a real opportunity to improve the quality of end of life care and build in permanent improvement through changing the very culture around death and dying – among both health professionals and the public.

The months since have seen the General Medical Council launch a consultation on the issue and nine major organisations, led by the Royal College of Physicians, publish guidelines for health professionals to help patients think about advance care planning.

The first step in the national strategy’s end of life care pathway is honest communication between clinician, patient and carer and this underpins the rest of the pathway.

The guidelines for health professionals published in February should certainly help in that process but the impetus towards improved communications continues with the publication this month of a plain English guide on advance care planning aimed at patients.

The 16 page plain English booklet tackles topics as diverse as advance refusal of treatment to spiritual dimensions of care and arrangements for a much-loved pet.

The National End of Life Care Programme published Planning for Your Future Care: A Guide so that patients and their families can raise these issues with health professionals. It advises the person to discuss future withholding of treatment with their doctor or a nurse. Obviously, if the treatment is potentially life-sustaining the wish would have to be put in writing, singed and witnessed.

All this activity will hopefully produce a surge in the number of advance care plans which could re-shape for the better our work as health professionals working with those approaching death. If we finally defeat the fear of talking about death then the wishes of our patients will be met much more often. Overwhelmingly, that includes the wish to die at home.

At the heart of last year’s strategy was the idea that the choices and priorities of the individual should be at the centre of all end of life care planning and delivery.

Across health and social care choice and control for patients and service users is a central element of government policy. The same should surely apply as people approach the end of their life.

Advance care planning is a process, it can be complex and to be effective should involve health care professionals. Effective advance care planning also requires different organisations to work closely together, for example, by using shared documentation and having excellent communication between sectors.

Advance care planning is sensible, appropriate, practical and compassionate.

As doctors we should never apply undue pressure to a patient to talk about these things in advance and it can be difficult to raise the subject. We should, however, always be ready to raise the subject with them.

The latest addition to our portfolio of tools for discussing the issue with our patients and their families is another welcome steps towards improving end of life care.

Julia Riley is head of the Department of Palliative Medicine at the Royal Marsden Hospital. London

The patient guide is available through the National End of Life Care Programme website or by calling 0116 2225103.