Seminar: My Life, My Decision: A new approach to advance care planning

28 September 2016

Thursday October 20, 2016

1:30 PM – 5:00 PM

Church House Westminster, Deans Yard, London

A free seminar organised by Compassion in Dying:

My Life, My Decision was an ambitious, multifaceted programme of work delivered by Compassion in Dying and its partners, and funded by the Big Lottery’s Silver Dreams Fund to run from July 2014 until October 2016.

Its aim was to support people aged over 50 to think about and plan their care in advance, helping to ensure they have the death that is right for them.

The project tried and tested new ways of engaging people and communities in planning for the end of life. It developed a service that placed the individual at the centre of their care decisions and supported them to express and record their wishes in a legally binding way. It also developed effective models of partnership working between health services and voluntary organisations, maximising the capacity of healthcare professionals by providing support to their patients to plan their care.

More details and registration information available via Eventbrite.

Radio: iPM on a patient with capacity having her life-sustaining pacemaker deactivated

27 September 2016

Last year, the Radio 4 programme iPM ran an item about an adult patient with capacity seeking to have her pacemaker deactivated:

“Who can make decisions about a pacemaker once it’s in my body?’ – After a listener got in touch with an ethical dilemma, we explore what the UK law says about switching off pacemakers and other implanted medical devices.”

Last week, the programme updated the story with details of the deactivation and eventual death of the patient.

“The listener who fought for her pacemaker to be turned off and the US doctor who helps to stop his dying patients’ hearts.”



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.

Debates: inter-medical school debates on issues in medical ethics

15 March 2012
  • Should Somatic support be prolonged for a brain dead woman who is 23 weeks pregnant until the foetus can be safely delivered with a good chance of survival?
  • Should a 15 year old be allowed to refuse chemotherapy?
  • Should a non UK resident be provided with dialysis funded by the NHS?

Come and hear debates on these and other issues at the inaugural inter-medical school ethics debating competition on Wednesday 28th March, 5 – 7.30 in the Burroughs Room, Wellcome Collection, 183 Euston Road, NW1 2BE.

The judging panel includes:

Dr Marika Davies, Medico-legal adviser, MPS, Dr Julian Sheather, Ethics Manager, Medical Ethics Department, British Medical Association and Dr David Misselbrook, Dean of Royal Society of Medicine

Refreshments kindly provided by Wellcome

RSVP: Dr Carolyn Johnston, Adviser Medical Law and Ethics, King’s College London, carolyn.johnston [at]

TV: right to die in Law and Order: UK

6 March 2011

ITV1, Monday 14 March 2011, 9-10pm, available after broadcast via the ITVPlayer

The Radio Times is reporting that episode 2 of the new series of Law and Order: UK will feature a ‘right to die’ issue:

“High-court judge Rachel Callaghan (guest star Juliet Stevenson) is critically injured after being shot in the underground car park of her apartment. When it becomes clear a hitman was responsible, the team tries to discover who hired him. As evidence mounts against the accused, the judge’s health deteriorates, and Castle is faced with a choice between friendship and respect for a person’s right to die. Bill Paterson, Bradley Walsh and Freema Agyeman star.”

News and comment: Forced treatment in cancer patient’s best interests

26 May 2010

In DH NHS Foundation Trust v PS [2010] EWHC 1217 (Fam), Wall P. ruled that it would be lawful to impose treatment on an incompetent cancer patient in her best interests, despite her apparent dissent and lack of co-operation stemming from phobias of hospitals and needles. PS has been diagnosed with endometrial cancer.

PS has “a significant impairment in intellectual functioning as a consequence of a learning disability” and does not pass the test of capacity in ss. 2 and 3 of the Mental Capacity Act 2005. The medical evidence is overwhelming that the surgical procedure (hysterectomy and bilateral salpingo-oophorectomy) would be in PS’s best interests.

Wall P. held:

[19] I am further satisfied, given her hospital and needle phobia, that it may well be necessary to sedate PS in order to convey her to hospital, and that the risks of sedation in these circumstances have been appropriately addressed by the Trust. The need for such sedative treatment will only arise if persuasion fails, and I am accordingly satisfied that it is necessary for the trust to authorise such treatment as being in PS’s best interests, and to use force if necessary to sedate her and convey her to hospital.

[20] In my judgment, it follows from paragraphs 11 to 14 above, that it will be necessary to detain PS in hospital during the period of post-operative recovery. After mature consideration, the Official Solicitor, on PS’s behalf, came to the view that it was not necessary to invoke the Deprivation of Liberty Provisions under Schedule 1 of the Act. I agree with that analysis. If it is in PS’s interests (as it plainly is) to have the operation, it is plainly in her interests to recover appropriately from it.

It is not only the treatment that must be in PS’s best interests under the MCA, but the sedation and/or force needed in order to perform it. In other words, sedative and forcible treatment must be in the patient’s best interests. It is possible for a treatment to be in an incompetent patient’s best interests, but for forcible treatment not to be; this is the most charitable explanation of Sir Stephen Brown P.’s decision in Re D (Medical Treatment: Mentally Disabled Patient) [1998] 2 FLR 22 that continued dialysis would no longer be in the best interests of an incompetent man who was unable to co-operate with his treatment (see Andrew Grubb’s commentary on Re D at (1998) 6 Med L Rev 103 (Athens login required)). A clear statement of this principle will have to await a case with less time pressure (see, for example, Trust A and Trust B v H (An Adult Patient) [2006] EWHC 1230, [27] (Fam) making a similar point in the context of the use of restraint). The gist of the present judgement is that the surgery is so overwhelmingly in PS’s best interests that the use of sedation and force needed to achieve this–which has been carefully considered by a multi-disciplinary team–is also in her best interests.

This story is on the front page of the Telegraph tomorrow.

Update on 5 August 2010: I have posted a comment criticising a rather misleading blog post about this case on Bioethics Forum.

News: an advance decision to refuse treatment following a suicide attempt

1 October 2009

The inquest into the death of Kerrie Wooltorton has recorded a narrative verdict. According to BBC News, “Miss Wooltorton wrote her living will in September 2007, asking for no intervention if she tried to take her own life. She died four days after being admitted to hospital for drinking anti-freeze. . . . The hearing in Norwich on Monday was told Miss Wooltorton had mental capacity and had the right to not consent to medical intervention.”

The BBC reports excerpts from the verdict:

“Even when she was losing consciousness she was absolutely clear in refusing treatment . . . The doctor went over and above what was required of him.”

“He discussed the case with clinical colleagues, took a second opinion from a fellow consultant and sought advice from the medical director.”

“A deliberate decision to die may appear repugnant, but any treatment to have saved Kerrie’s life in the absence of her consent would have been unlawful.”

“She had capacity to consent to treatment which, it is more likely than not, would have prevented her death.”

“She refused that treatment in full knowledge of the consequences and died as a result.”

Advance directives, living wills or advance decisions are decisions made while a person is competent regarding the treatment and care of that person once he or she becomes incompetent. The Journal of Medical Ethics published an interesting article on this topic last year: D Sontheimer. Suicide by advance directive. Journal of Medical Ethics 2008;34:e4. (You will need an Athens account to access this.)

Both Sky News and the BBC reported earlier today that Ms Wooltorton’s ‘living will’ was binding because of the Mental Capacity Act 2005. This is incorrect; the relevant provisions of the Act (ss.24-26) did not come into force until 1st October 2007 and this case occurred in September 2007. The validity of her advance refusal was governed by the common law. (Had it been governed by the Act, the advance decision would not have been valid unless it was witnessed (s.25(6))).

The common law allowed persons to refuse unwanted treatment in advance of incapacity (In re T. (Adult: Refusal of Treatment) [1993] Fam. 95; Airedale NHS Trust v Bland [1993] AC 789; Re C (Adult Refusal of Treatment) [1994] 1 WLR 290; Re AK (Medical Treatment: Consent) [2001] 1 FLR 129; HE v A Hospital NHS Trust [2003] 2 FLR 408). This was not a “grey area”, as described by Andrew Jones to Sky News Online. The following quotation from Lord Goff’s speech in the House of Lords decision in Airedale NHS Trust v Bland [1993] AC 789, 864 makes this clear:

“First, it is established that the principle of self-determination requires that respect must be given to the wishes of the patient, so that if an adult patient of sound mind refuses, however unreasonably, to consent to treatment or care by which his life would or might be prolonged, the doctors responsible for his care must give effect to his wishes, even though they do not consider it to be in his best interests to do so . . . To this extent, the principle of the sanctity of human life must yield to the principle of self-determination . . . and, for present purposes perhaps more important, the doctor’s duty to act in the best interests of his patient must likewise be qualified.  On this basis, it has been held that a patient of sound mind may, if properly informed, require that life support should be discontinued: see Nancy B v Hotel-Dieu de Quebec (1992) 86 D.L.R. (4th) 385.  Moreover the same principle applies where the patient’s refusal to give his consent has been expressed at an earlier date, before he became unconscious or otherwise incapable of communicating it; though in such circumstances especial care may be necessary to ensure that the prior refusal of consent is still properly to be regarded as applicable in the circumstances which have subsequently occurred: : see, e.g., In re T. (Adult: Refusal of Treatment) [1993] Fam. 95.”