Social work and end-of-life care

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Advance care planning: basic explanation and British links

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Care planning montageAs promised, some more general material and British links on advance care planning.

Advance care planning (acp) is the general term for helping people to plan for the care they want during the end-of-life phase of their condition. It builds on the idea of advance directives, which tell doctors what their patient wants them not to do, if the patient does not want to be enthusiastically kept alive; nobody can instruct a doctor what treatment to provide, legally it has to be their own professional decision what is in the best interests of the patient.

Link to Capacity, care planning and advance care planning in life limiting illness: A Guide for Health and Social Care Staff from the National End of life care Programme – the best all-round guide for professionals.

Link to the Royal College of Physicians concise guidance Also a good guide, co-published with a lot of relevant organisations, but understandably a bit doctorish in approach.

Link to the latest practical guidance toolkit: Advance Care Planning: it all ADSE up. This dire punning title is based on the mnemonic for the main principles, according to the NEOLCP, of carrying out advance care planning: Ask – Document – Share – Evaluate. I can only imagine that government cuts have led to no money being available for marketing consultancy to the National End of Life Care Programme, which would undoubtedly have squished this naff title, but the content is practical and useful. At the end of this post a link to other useful guidelines.

People in the end-of-life care field (especially in the USA) tend to see acp as mainly concentrating on advance decisions, and decision-making in the last year of life,which nobody can predict, so that’s a bit of a nonsense. Professionals are supposed to ask themselves the ‘surprise question’ (whether they would be surprised if this patient died in the next twelve months and, if so, they are treated as in an end-of-life phase). The term has been given additional currency in the UK because it is used in association with the requirements of the Mental Capacity Act 2005 to take decisions on behalf of people who lack the mental capacity to make their own decisions, both in general and on agreeing to or refusing medical treatment. The American system allows the appointment of proxies to take decisions on your behalf; the British system allows you to complete official documents registered through the Office of the Public Guardian to appoint a friend or relative do this for money and separately for care matters. This is quite expensive and complicated, and it takes a long time.

Link to the Office of the Public Guardian.

Because of the provisions of the MCA, acp has extended its reach, because if you are employed to care for people who do not have capacity, it is your job to assess continuously their capacity to make decisions and to help them maintain and develop that capacity. So in residential care for older people, particularly those with dementia, advance care planning is a much more general process, involving helping people to decide how they want to live in a care home. You can see this represented in a good Advance Care Planning website, which is less concerned with end-of-life care decision-making, and represents a broader approach to acp.

Link to the care homes Advance Care Planning website.

The end-of-life care world and its literature, however, is still stuck with mainly missing this whole care homes acp industry, although there is some overlapping research, and guidance sometimes extends more broadly into care decisions. Part of the problem is the healthcare bias of the people working in end-of-life care and their general ignorance of social care.

A good summary of the basic  evidence about  acp in the palliative care field (written for non-specialist nurses by leading authorities) is contained in the St Christopher’s Hospice End of Life Journal: this is an internet journal that you can access free, but you have to register. Link to the article: Advance care planning: evidence and implications for practice

Another complication is the Scottish enthusiasm for anticipatory care planning, where there is very good guidance, and this also is more concerned with planning throughout the care career.

Link to the 2010 Scottish government website on anticipatory care planning.

Link to Healthier Scotland (simpler) guidelines for anticipatory care planning

Links to other guidelines:

Link to National End of Life Care Programme guidance on various aspects of advance care planning as part of the assessment stage of working with patients.

Link to SCIE, Department of Health and Help the Hospices Guide on Advance Decisions, referencing the Mental Capacity Act 2005 (2008 publication) Although a bit long in the tooth, this guide has the advantage that it specifically points up the requirements of the Mental Capacity Act, although be warned that there are a lot of legal developments on mental capacity, so it’s a bit out of date on the law. For professional practice, though, it’s still useful.

Link to recently-published tips for general practitioners (family doctors) from the Department of Health. As it’s for busy GPs, it’s very brief and explains things clearly from a community healthcare perspective.


Written by Malcolm Payne

24 January 2013 at 11:45 am

National End of Life Care Prog giveaway

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121207 NEOLC publications

The National End of Life Care Programme says it’s got hard copies of its publications to give away free. What do you think its logo signifies? Stepping delicately towards the end of life?

NEOLCP publications website.

Written by Malcolm Payne

7 December 2012 at 4:20 pm