Comment: Advance decisions to refuse treatment (ADRT) forms in dementia

16 July 2014
I’ve done a little research on advance decisions to refuse treatment (ADRT) forms in dementia for an upcoming BBC Radio 4 episode of Inside the ethics committee, to be broadcast on 31 July 2014 at 9am.
The Alzheimer’s Society have a form and a fact-sheet. Dementia Care also has some information on their website which includes a link to an Age UK factsheet.
Personally, I prefer the Compassion in Dying form (plus accompanying guidance notes) to the Alzheimer’s Society form. The main reason for this is that the triggering condition for the refusal (i.e. when the refusal is to become effective) is rather strange in the Alzheimer’s Society form. It’s when ‘the gravity of my condition/suffering is such that treatment seems to be causing distress beyond any possible benefit’. The goal of an ADRT is to refuse treatment which others would or might think is in your best interests (otherwise there’s little point – if everyone agrees the treatment is not in your best interests then it would not be lawful to give it under the Mental Capacity Act 2005). This triggering condition doesn’t seem to me to leave much (if any) scope for this. If the treatment causes distress beyond any possible benefit then it is hard to see how it could be given as it would not be in your best interests. The balancing of burdens against benefits is exactly what the courts (and the Mental Capacity Act Code of Practice) require in order to reach a decision on your best interests.
You can contrast this with the triggering conditions (there is a choice) in the Compassion in Dying form, the most relevant one of which is: ‘I suffer serious impairment of the mind or brain with little or no prospect of recovery together with a physical need for life-sustaining treatment/interventions’. Here it is quite possible that different people will have different views on whether life-sustaining treatment is in your best interests as the ADRT will be triggered (in dementia patients) once their condition constitutes a serious impairment and there is little or no prospect of recovery. So the ADRT will have a role to play.
Compassion in Dying also have a free phone line you can call to get help in filling out the form; details are provided within the form as well as on their website.
NB: Compassion in Dying has a relationship with Dignity in Dying. They are separate organisations but they work out of the same offices.

TV: Terry Pratchett on Hardtalk

5 August 2010

BBC World, Thursday 05 August 2010 on BBC World News at 0330, 0830, 1530, 1930 GMT and on Friday 06 August at 0230 and 0430 BST. Available on iPlayer until midnight on 07 August 2010.

Terry Pratchett talks to Stephen Sackur on Hardtalk about his Alzheimer’s Disease, campaigning for better access to medication for dementia patients, and his proposal for assisted suicide tribunals.

Radio: NHS spending on dementia

18 March 2010

From the Today programme this morning: “More than two thirds of primary care trusts in England are unable to say if or how they spent money allocated to them under the National Dementia Strategy for England. Jeremy Wright, Conservative MP for Rugby and Kenilworth who chairs the APPG [All-Party Parliamentary Group on Dementia], and Nigel Edwards, director of public policy at the NHS Confederation in England, debate the spending of dementia care funds.

TV: evidence cited by Sir Terry Pratchett on assisted dying

2 February 2010

In his lecture Shaking Hands with Death, Sir Terry Pratchett referred to an article from the Journal of Medical Ethics which examined the impact on vulnerable groups of assisted dying in the permissive jurisdictions of Oregon and the Netherlands. The article is Battin et al, ‘Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in “vulnerable” groups’ (2007) 33 J Med Ethics 591-7. You can read the abstract, and if you have access via Athens, the full-text.

TV: Terry Pratchett on ‘Shaking Hands with Death’

31 January 2010

Monday 1st February, 10:35pm – 11:25pm, BBC1, available via the iPlayer for one week after broadcast.

From the BBC: “One of the world’s most popular authors gives the 34th Richard Dimbleby Lecture from the Royal College of Physicians in London.

Sir Terry Pratchett announced in 2007 that he had been diagnosed with a rare form of early-onset Alzheimer’s disease. In his keynote lecture, Shaking Hands with Death, he explores how modern society, confronted with an increasingly older population, many of whom will suffer from incurable illnesses, needs to redefine how it deals with death.

The acclaimed creator of the bestselling Discworld series, he is the first novelist to give the Richard Dimbleby Lecture. His books have sold more than 65 million copies and have been translated into 37 languages.”

BBC News is reporting that Pratchett is “ready to be a test case for assisted suicide “tribunals” which could give people legal permission to end their lives.”

Don’t forget the BBC Panorama programme on Monday on a similar topic.

Terry Pratchett and Baroness Finlay were both interviewed on Monday’s Today programme on this proposal.

Seminar: First do no harm – challenges for psychiatry

5 November 2009

Wednesday 18 November 2009

The Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE

Registration required in advance.

5.30 pm Registration and tea
Chair: Chair: Professor Peter Bartlett, Professor of Mental Health Law, Nottingham University
6.00 pm Introduction
6.10 pm Is facilitated Self Harm “Actual” Harm?
Ms Kerry Gutridge, Wellcome PhD Student, Bristol University
6.35 pm Palliative care dilemmas in dementia
Dr Adrian Treloar, Lecturer in Psycho geriatrics, King’s College London
7.00 pm Completion of evaluation forms
7.05 pm Discussion
7.30 pm End of meeting
Members of the committee will be going for a meal at a local venue afterwards and delegates are welcome to join

NICE: new ruling on Alzheimer’s drug Aricept

29 June 2009

As recently reported in the BMJ, following the partially successful appeal by the pharmaceutical company Eisai in R (on the application of Eisai Limited) v National Institute for Health and Clinical Excellence [2008] EWCA Civ 438, a further review process was instituted. As ordered by the Court of Appeal, Eisai was given a fully executable form of the economic model used by NICE for determining the drugs’ cost effectiveness. Both Eisai and the Alzheimer’s Society made further representations. Despite these, NICE has now reaffirmed its original guidance that the drug Aricept is not cost-effective for patients with mild Alzheimer’s Disease. Eisai and the Alzheimer’s Society may now appeal against this decision.