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End-of-life care can be regarded as ‘taboo', but the subject is finally being brought into the open, as Claire Henry explains. The subject of ‘the last taboo' is much discussed, but talking about death and end-of-life care must rank well up there. Social care professionals working with older people and others approaching the end of their lives can sometimes witness first hand the emotional pain and problems such reticence can cause. A recent BBC survey revealed that only one in three people had discussed the circumstances in which they wished to die. More alarmingly still, a staggering 54% of complaints to the former Healthcare Commission in 2007/08 related to end-of-life care. Yet, through advance care planning, individuals can ensure their wishes around their end-of-life care and related issues are respected when they are no longer able to speak for themselves. It is no accident that the six-step end-of-life care pathway outlined in last year's National end-of-life care strategy begins with honest communication – and the identification of a trigger for discussion. To help in that process, the National End of Life Care Programme (NEoLCP), in partnership with Nottingham University and the National Council for Palliative Care, has published a plain English, 16-page guide on advance care planning for service-users and their families. Issues covered range from making clear the wish to die at home, to making an advance decision to refuse treatment, and the more prosaic details of financial arrangements. With thousands of copies expected to be distributed through NHS, local authority and third sector organisations, social care professionals can expect an upsurge in service-users and clients seeking advice or showing a new readiness to raise the issue. As emphasised in another NEoLCP publication*, which was aimed specifically at social care professionals and their colleagues in health care, advance care planning is voluntary, and should not be initiated as part of routine record keeping or care. But that guide, published last August, recommends it can form part of a service-user's regular care plan review. Looking for ‘cues' is a key skill, however, one of a set of communication skills which can help a service-user engage in effective advance care planning. As both the guide aimed at professionals and the latest guide for service-users note, the cue for an advance care conversation could be soon after the diagnosis of a life-limiting illness, after a sudden deterioration in health, or after a significant life event, such as the death of a spouse. Meanwhile, the service-user's guide emphasises that while advance care planning does not always have to involve written statements, ‘the professionals involved in your care and members of your family may find it helpful if your wishes and preferences are in writing'. Among the issues which the service-user guide suggests people might want to consider are: * reflecting any religious or spiritual beliefs in the person's care * the name of the person or people who could speak on their behalf at a later time * a preferred place to die – for example, at home * thoughts on different treatments or types of care that might be offered in the future * concerns about practical issues, such as who will look after a loved pet. Obviously, the most serious element of advance care planning relates to an advance decision to refuse specific treatment in certain circumstances. The guide for care professionals draws the links between advance decisions and the Mental Capacity Act (2005) which came into force in October 2007. It says: ‘The making of an advance decision should be made under the guidance of someone who understands the complexities of the process. ‘The professional involved in the discussion should be willing and able to discuss what is involved in the making of an advance decision to be able to give directions as to the appropriate action to the taken.' Advance care planning is sensible, appropriate and compassionate. Care professionals should never apply undue pressure to a patient to talk about their future end of life care, but they should be ready to respond to invitations to do so. Claire Henry is national programme director of the National End of Life Care Programme at the Department of Health. * Planning for your future: A guide is available by download on www.endoflifecare or by calling 0116 222 5103foradults.nhs.uk/eolc

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WHITEHALL

Beginning a debate about the end

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