I continue to be troubled by the concept of advance decisions to refuse treatment being used to prevent lifesaving treatment for the consequences of deliberate attempts to end one’s life.
I wrote about one such case back in 2011. This concerned a 26 year old woman called Kerrie Wooltorton. She committed suicide on 19th September 2007 by swallowing ethylene glycol (antifreeze), and although she had herself called an ambulance and had allowed herself to be taken to hospital, she had refused the treatment which would have saved her life.
Kellie Woooltorton's Inquest
The doctors in charge of her treatment allowed her to die because she had made what was at the time described as a “living will” stating that she did not wish to receive treatment for the effects of the deliberate ingesting of this lethal substance.
The reason I am revisiting this issue is because I recently came across an account of the inquest report. Previously, the only information I had was the news reports at the time of the inquest, which had taken place two years later in 2009.
Five days before, she had written a letter. This stated:
To whom this may concern, if I come into hospital regarding taking an overdose or any attempt on my life, I would like for NO lifesaving treatment to be given. I would appreciate if you could continue to give medicines to help relieve my discomfort, painkillers, oxygen, etc. I would hope these wishes will be carried out without loads of questioning.
Please be assured that I am 100% aware of the consequences of this and the probable outcome of drinking anti-freeze, eg. death in 95-99% of cases and if I survive then kidney failure, I understand and accept them and will take 100% responsibility for this decision.
I am aware that you may think that because I call the ambulance I therefore want treatment. THIS IS NOT THE CASE! I do however want to be comfortable as nobody want to die alone and scared and without going into details there are loads of reasons I do not want to die at home which I will realise that you will not understand and I apologise for this.
Please understand that I definitely don’t want any form of ventilation, resuscitation or dialysis, these are my wishes, please respect and carry them out.
In his summing up, the coroner stated:
Kerrie had capacity and she could not therefore be treated and indeed, going further than that, if she was treated in these circumstances and her wishes overridden, it would have been an assault to have done so… Any treatment to save Kerrie’s life in these circumstances would have been unlawful because the law respects the autonomy of an individual to make a decision even if the decision is seen to be perverse or unwise by others.
It was stated at the inquest that Kerrie had an “incurable emotionally unstable personality disorder”, that she had a long history of self harm (she had taken 9 similar doses of antifreeze in the year before her death), and that she had been sectioned and admitted to psychiatric hospital on a number of occasions in the past.
In my original post on Kerrie Wooltorton, I dismantled the case being made that it was unlawful to treat in these circumstances. Stuart Sorensen, writing in Community Care at the time, concluded that the Mental Capacity Act's Code of Practice “is clear that the Act does not support suicide, assisted dying or mercy killing”. Her clear intention to end her life:
means that she cannot be seen as decision-maker in the eyes of the law. The power to decide passes to the care team who have to act in what they reasonably believe to be her best interests. It seems reasonable to doubt that best interests means watching her die slowly and presumably painfully from acute poisoning.
The inquest, taking place 2 years after the Mental Capacity Act, made an assumption that the decisions the doctors had made related to the MCA.
However, when I looked more closely at the dates, I realised that the MCA did not actually come into force until 1st October 2007. This was 2 weeks after Kerrie had written her advance decision to refuse treatment, and over a week after she had taken her life.
Government guidance on implementation of the MCA said that “most advance decisions, refusing life-sustaining treatments, made before October 2007 are unlikely to meet the specific requirements of the Act.” This fact in itself should have provided sufficient justification for the hospital to have disregarded her “living will” and to have provided her with treatment.
Should such advance decisions be respected?
So, to come back to my initial question, just because Kerrie Wooltorton’s advance decision could legitimately have been disregarded, does that mean that advance decisions, properly made out, would have to be respected in all circumstances?
To begin at the beginning, S.24(1) of the Mental Capacity Act 2005 states:
“Advance decision” means a decision made by a person, after he has reached 18 and when he has capacity to do so, that if—
(a) at a later time and in such circumstances as he may specify, a specified treatment is proposed to be carried out or continued by a person providing health care for him, and
(b) at that time he lacks capacity to consent to the carrying out or continuation of the treatment, the specified treatment is not to be carried out or continued.
The MCA Code of Practice makes it clear the sort of circumstances that might justify making, and respecting an advance decision to refuse treatment. It provides this scenario:
Mrs Long’s family has a history of polycystic ovary syndrome. She has made a written advance decision refusing any treatment or procedures that might affect her fertility. The document states that her ovaries and uterus must not be removed. She is having surgery to treat a blocked fallopian tube and, during the consent process, she told her doctor about her advance decision. During surgery the doctor discovers a solid mass that he thinks might be cancerous. In his clinical judgement, he thinks it would be in Mrs Long’s best interests for him to remove the ovary. But he knows that Mrs Long had capacity when she made her valid and applicable advance decision, so he must respect her rights and follow her decision. After surgery, he can discuss the matter with Mrs Long and advise her about treatment options.
In this situation, it is clear that Mrs Long has capacity to make an informed decision, and that the decision is based on sound principles. She wants to have children, and does not want any treatment that might jeopardise this.
But what about people who want to successfully end their lives? This is not nearly so straightforward.
In the case of people requiring treatment for mental disorder, the Code has this to say:
Advance decisions can refuse any kind of treatment, whether for a physical or mental disorder. But generally an advance decision to refuse treatment for mental disorder can be overruled if the person is detained in hospital under the Mental Health Act 1983, when treatment could be given compulsorily under Part 4 of that Act. Advance decisions to refuse treatment for other illnesses or conditions are not affected by the fact that the person is detained in hospital under the Mental Health Act.
So what the Code is saying is that treatment for mental disorder can be given under the Mental Health Act regardless of any advance decision, although treatment for purely medical problems cannot be given under the MHA.
So in the case of Mrs Long, if she happened to be detained under the MHA because of the need for treatment for mental illness, she could be given that specific treatment, but her existing advance decision relating to gynaecological treatment would still stand.
But when it comes to respecting an advance decision in the case of an attempt at suicide, it becomes more complex.
Professor Kapur, writing in the British Medical Journal, has this to say:
It is difficult to be certain about an individual’s capacity at the time of drawing up an advance directive and, although this is an issue with advance directives generally, it may be particularly pertinent for suicidal individuals. Suicidal behaviour is clearly linked to psychiatric disorder, with most people who die by suicide having evidence of a psychiatric illness at the time of death. This can affect decision-making capacity and even the law recognises that advance directives may not apply if a person is likely to be detained under the Mental Health Act.
If there is any question that the patient lacks capacity at the time of the need for life-saving treatment, then a best interests decision could be made to override any advance decision.
In the case of Kerrie Wooltorton, for example, there was a known history of mental disorder, she had been subject to the Mental Health Act on several occasions, and she had a history of self harm using antifreeze.
Looking at the timeline leading to the fatal event, she had written her “living will” 5 days before drinking the antifreeze.
This raises serious questions as to whether or not she had capacity at the time she wrote the letter. She was clearly planning to drink the antifreeze, and it would appear that she had written the letter in order to try to preempt any attempt to save her life. As she had an established mental disorder, and was clearly suicidal at the time she wrote this letter, it would be fairly safe to speculate that her capacity at that time was impaired.
There was certainly sufficient evidence to cast enough doubt on her capacity to ignore her wishes and provide her with the necessary treatment.
But the MCA has more to say. This is on the subject of assisting a suicide.
S.62 MCA states:
For the avoidance of doubt, it is hereby declared that nothing in this Act is to be taken to affect the law relating to murder or manslaughter or the operation of section 2 of the Suicide Act 1961 (c. 60) (assisting suicide).
S.2 of the Suicide Act 1961 relates to complicity in another’s suicide. While the Suicide Act made it no longer an offence to commit suicide, it is an offence to do an act “capable of encouraging or assisting the suicide or attempted suicide of another person, and [that] act was intended to encourage or assist suicide or an attempt at suicide.”
The Code points out: “Nobody can ask for and receive procedures that are against the law (for example, help with committing suicide)” (9.6).
While on the surface this appears to relate more to the active assistance of suicide, it is arguable that a deliberate failure to give life saving treatment might actually constitute a criminal offence.
Purely on this basis, I would argue that a doctor would be justified in deciding not to risk prosecution.
So what should a hospital do when someone who has attempted suicide presents with an advance decision to refuse treatment?
Clearly, the first thing to establish would be the validity of the decision. One would need to be absolutely certain that they had full capacity when the decision was made.
It is arguable that someone with a history of severe mental disorder, and with suicidal ideation and a history of previous attempts, may not have full capacity. If the decision was made within days of the action, as in Kerrie Wooltorton’s case, this could be evidence that their state of mind at the time they made the decision was impaired by their mental disorder.
Such an advance decision could easily be construed as being invalid.
But what about a hypothetical case of someone with motor neurone disease who had made an advance decision some months previously not to be treated or resuscitated, and who had then contrived to take a fatal overdose at the point at which they considered their condition to be adversely affecting their quality of life so as to make that life worthless? Would one disregard their decision? If they had had capacity, and had rationally explained their thinking well in advance, it may be difficult to justify doing that.
Other ways of bypassing an advance decision in these circumstances
Up until now, I have not explored alternatives to relying on the Mental Capacity Act. There are at least two other options.
One is, of course, to use the Mental Health Act.
It is not uncommon to assess someone under the MHA who is either seriously planning suicide, or has taken an overdose of a noxious substance and is refusing treatment.
Capacity is not an essential factor in these assessments. Nowhere in the MHA is capacity mentioned. The requirement is for someone to have a mental disorder within the meaning of the Act (which is very broad), and to be in need of assessment and/or treatment.
Detention under either S.2 or S.3 MHA would then provide a legal framework to provide treatment against the will of the patient. While one cannot use this to compel treatment for unrelated medical conditions (as in the case of Mrs Long), it can be (and often is) used to treat the consequences of self harm arising from the patient’s mental disorder. This would include treatment for overdoses or the effects of other noxious substances.
Any advance decision would be irrelevant in such a situation.
The hospital would also have a third option. This would be to go to the Court of Protection. Then a Judge can make a decision as to whether to impose life saving treatment or to permit the withdrawal of treatment.
I have discussed a number of court decisions on this blog where a Judge, or even the Appeal Court, has been asked to make decisions relating to the treatment or otherwise of people with anorexia nervosa and other mental disorders.
So to conclude, I do not think that there was a need for Kerrie Wooltorton to die back in 2007. I also think that, in a similar situation today, there are a number of ways in which treatment could be provided regardless of the existence of any advance decision.
People with mental disorder do not have to be allowed to die simply because that is what they say they want at the time of the crisis.