This article appeared in the August 2007 edition of the Catholic Medical Quarterly

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A Disability Perspective

Alison Davis

The Mental Capacity Act, which was passed on 5th April 2005 and comes into force partly this month and partly in October, has had a long and tortuous history. It began in 1989, when the Law Commission launched a consultation period on all aspects of mental incapacity. In June 2003 a draft Mental Incapacity Bill was published, but in July 2004 this was renamed the Mental Capacity Bill. The change of name was an attempt to head off criticism from pro-life and disability groups that the Bill would allow euthanasia by neglect. Suffice it to say it did not allay our fears.

In fact it rather reminds me of a report I read some years ago in a local newspaper which said that "owing to complaints about noise from the Fox and Hounds pub in Iver Heath, it has been decided to change its name to the Coach and Horses!"

The Government has repeatedly claimed over many years that it is not in favour of legalising euthanasia'1,2 and that the MCA and its forerunners the MIB and MCB would not allow any form of euthanasia. Darren Tierney, Manager of the "MCB Programme" at the Dept. of Constitutional Affairs, said regarding fears that the MCB would allow euthanasia "This is not the case. The Government has been very clear that the Bill is not and has never been about euthanasia."3

This disingenuous claim was made possible because, although the Bill (and the subsequent Act based upon it) would allow the killing by neglect of the most vulnerable of people, the Government has consistently claimed that this killing is not euthanasia. This is achieved by defining "euthanasia" very narrowly as a "deliberate intervention undertaken with the express intention of ending a life."4

It is untenable to claim, as the Government does, that withdrawing or withholding "treatment" (which, since the Tony Bland ruling of 19935 is taken to include assisted food and fluids) is "not euthanasia" because it involves not an "intervention" but a withdrawal. Killing by starvation and dehydration is just as much euthanasia as giving a lethal injection. The intent to cause the patient's death because his or her life is regarded as having no value is identical.

The Government has been particularly keen to try and persuade us that the MCA has overcome the objection of pro-lifers, by providing that "nothing in the Bill affects the law relating to murder, manslaughter, or assisting a suicide." In effect, however, it makes little difference because decisions to bring about a patient's death by withdrawing or withholding assisted food and fluids may not be regarded in law as homicidal or suicidal, but as a legitimate and lawful treatment decision.

As long as the Tony Bland ruling remains in force, profoundly disabled people will be vulnerable to having their lives ended. Although the MCA does not, strictly speaking, enshrine the Bland judgment in statute law, the Bland judgement does affect the meaning of the MCA, and it is impossible to interpret the MCA correctly without understanding how it is affected by Bland. As long as the Bland ruling is not reversed, the MCA ensures that it is possible to continue to deny assisted food and fluids to people in Persistent Nonresponsibe State (usually, inappropriately termed PVS), after application to the courts, which have never refused to allow this. Thus a much wider range of patients without capacity are to be subjected to the same killing by omission.

The Government has made it clear that it will not reverse Bland. The MCB Legislation Division of the Dept of Constitutional Affairs said

...on the Bland judgement, the Government position is very clear... we do not want to see the judgement overturned. The primary aim of medical treatment ... is to restore or maintain a patient's health by maximising benefit and minimising harm.
When a medical treatment or intervention fails, or ceases, to provide such a benefit to the patient (as was the case in Bland), this primary goal cannot be realised and the justification for treating is gone. This position has been reaffirmed in around 36 cases since the case of Bland was decided on 4 February 1993 and the Government does not disagree with it.6

It is clear therefore that the Bland judgement will stand, and, that being so, the MCA simply increases the numbers of patients who will legally have their assisted food and fluids withdrawn, on the grounds that it is of "no benefit" to them. The British Medical Association has, with no hint of irony, tried to explain why food and fluids are not beneficial to some patients by saying that "life prolonging treatments" like assisted food and fluids "in themselves cannot reverse a patient's disease."' If food and fluids could "reverse disease" surely no one at all would ever be ill!

The permission inherent in Bland to starve and dehydrate to death vulnerable people is extended by the MCA, and could potentially affect several members of No Less Human, the group which I run within SPUC for disabled people, their families and carers. One such person is Rachel Marshall, who has Hydranencephaly (an absence of most of the brain) and is profoundly disabled.

Rachel is now 13 years old (and incidentally, and irrelevantly, is stunningly beautiful), and she is tube fed. Under the MCA her life would completely depend on her mother's wishes when she reaches the age of 16. Of course, her mother, Agnes would never want her to die (indeed, she has said she would happily have ten of her) but the uncomfortable truth remains that if anything were to happen to Agnes, Rachel would be extremely vulnerable to having her tube feeding withdrawn under the MCA.

It should be noted that the Government is perpetuating the notion, first described in Bland that assisted foods and fluids are actually an "artificial" means of keeping a person alive, and can thus ethically be refused.
In this regard, it is useful to note that even the British Medical Association, which supports killing vulnerable people by removal of food and fluids has admitted that

It is recognised that neither the nutrition nor the hydration is, in fact, artificial, although the method of delivering it is8.

Dr. Keith Andrews of the Royal Hospital for Neurodisability has said that

It is ironic that the only reason that tube feeding has been identified as "treatment" has been so that it can be withdrawn.9

Food and water are basic human necessitites, which serve the same purpose for profoundly disabled people as for all other human beings (indeed for all living things.)

However, the Government has seen fit to suggest that assisted food and fluids are not only to be regarded as "artificial" but also both potentially dangerous and distressing to the patient. The Dept of Constitutional Affairs MCB Programme Manager suggested.

ANH can have adverse side effects such abdominal discomfort, bloating, nausea, vomiting and diarrhoea. I think you would agree thk no one should be forced to undergo the undignified, painful or distressing effects of treatment when it is of no benefit to the person and therefore not in the person's best interests to continue it. This is why wo do not agree that artificial (their emphasis) nutrition and hydration should always be provided.'°

I have been tube fed many times in the past, and never experienced any of these symptoms, nor has anyone I know who has ever been tube fed. I suspect this is the usual ploy of presenting an enabling procedure as "undignified" so that it can be withdrawn or withheld.

This is, of course, part of the pro euthanasia philosophy that sick and disabled people want and need "death with dignity", strongly implying that we are "dignified" only in death. And to suggest that food and water have no "benefit" for vulnerable people is truly to suggest that our lives have no value.

The MCA includes a very subjective definition of the concept of acting in the "best interests" of the incapacitated person.

"Best interests" are generally understood, as is reflected in case law", to include basic factors such as preserving life, maintaining or restoring health and minimising suffering. The MCA makes no mention of these clinical "best interests" nor of the patient's interest in not being deliberately killed by dehydration and starvation. Rather, in the Bill "best interests" is defined as being the ascertainable past and present "wishes and feelings" of the vulnerable person, and the "beliefs and values" that would influence his decision if he had capacity.

Note also that the person making a decision on how the vulnerable individual should be treated only has to "reasonably believe" that he is acting in that person's "best interests." There is no objective test. The Government has maintained that the "best interests checklist" "is not a definition, nor is it exhaustive."12 But clinical best interests are not even mentioned.

These definitions of "best interests" are problematic for many reasons, not least in the case of people who are suicidal. They "wish" to die, "feel" that death is in their best interests, and "believe" they would be better off dead, but any doctor worthy of his or her profession would nevertheless overrule these wishes and feelings and institute treatment to save and/or sustain the life of such a person. Relying on "wishes and feelings" suggests that life is not a basic good, but is a good only if the individual recognises it as such.

It is unclear how the "best interests" of people in Persistent Non-Responsive State could be served, if "wishes and feelings" were the only criteria for deciding whether to remove food and fluids. Tony Bland, for instance, had never made any comment about what he would want were he to become incapacitated, but was killed anyway because other people, notably his parents and doctors "wished" him to die and "believed" it to be right to cause his death.

Lord Mustill, a member of the Appellate Committee of the House of Lords which decided the Tony Bland case proposes the highly objectionable view that Tony Bland had no best interests because he was profoundly disabled." If a person has "no best interests" there would seem to be no justification for not killing him.
There have been many cases of people being wrongly diagnosed as being in PVS for whom removal of food and fluids has been considered, as being in their "best interests". One such case was that of Marian Sallery.

Marian was paralysed after a stroke in 1983 when she was 36 years old. Local hospital doctors told her parents she was in PVS and would "always be a cabbage." They discussed withdrawing Marian's food and fluids so that she would die, but her parents refused. Marian was transferred to the Royal Hospital for Neurodisability in London and subsequently to a Cheshire Home, where she lived until her early death in 1994. Her friends at the Home described her as "the life and soul of the party."

A post-mortem revealed that Marian had never been in PVS. Instead she had Locked-In syndrome, a condition in which the person cannot move or communicate, but remains fully conscious and aware. Marian's mother says the doctors "told us we should live our lives and accept that she was dead. She would have heard everything "14

It is instructive to note that the doctors stated that Marian was "already dead" before the planned withdrawal of food and fluids, suggesting that life with a disability is a form of "living death."
Disabled people need protection from the harm of being assumed to be "as good as dead." Yet had the MCA been law then, Marian would probably have been assumed to have "no best interests" like Tony Bland.

Under the MCA doctors must apparently not be "motivated by a desire to bring about [the patient's death .]"15 However, it's hard to see how this will prevent vulnerable people being starved to death. Doctors who decide to withdraw or withhold assisted food and fluids could say that they didn't "desire the patient's death" but simply wanted to stop futile treatment to comply with a living will (legally binding under the MCA), or that the patient "wished" and "felt" that they didn't want life saving treatment.

The Lord Chancellor has warned that under the MCA doctors who refuse to obey suicidally motivated Advance Decisions (sometimes known as Living Wills) would risk prosecution for assault, and a possible jail sentence.'6 The British Medical Association has stated that it would not back doctors who defied the term of a living will, meaning that pro-life doctors will be sent to prison."

Every adult, on going into hospital, will under the MCA be presented with a document enabling them to make a living will and/or nominate a friend or relative to have "Lasting Powers of Attorney" under which they would make decisions not for the patient, but in effect as if they were the patient, and their decisions will be as binding as if they were made by the person who gave the LPA. Both living wills and people with exercising LPAs could allow for a patient to be denied all assisted food and fluids until they died of dehydration and starvation, truly a horrible way to die.

Regarding Advance Decisions the MCA makes it clear that, if valid and applicable, they will have the same effect "as it (the patient) had [currently] made it, and had had capacity to make it." It also makes it clear that such Decisions can include a refusal of life- sustaining medical treatment.

When the MCB was being debated, the Government claimed to have introduced "important changes" including provision for "a doctor who has any doubts about whether his patient's advance decision should be followed to treat that patient without fear of liability."" However, what of the situation where the doctor is in no doubt that the Advance Decision is both valid and applicable, but has a conscientious objection to killing his patient by neglect? Such a doctor would not be protected by the terms of this amendment, because he would not have any "doubts" about the Decision.

The MCA allows that a person "may withdraw or alter an Advance Decision at any time when he has capacity to do so." However, there is no mention of the possibility of a person changing his mind, but being unable to express it, or being regarded as not having the "capacity" to do so.

The Act also states that the Advance Decision would not be considered valid if the person "has done anything... clearly inconsistent with the Advance Decision remaining his fixed decision." However, this ignores the possibility that the person witnessing the inconsistency may stand to gain by the patient's death (for instance under his will).

One problem in taking into account an Advance Decision refusing life-saving or life- prolonging treatment (including food and fluids) is that by the time the decision is being taken by others, the patient will almost certainly be incapable of indicating any change of mind. What one thinks one would want in a completely hypothetical situation, never before experienced, is not necessarily what one will want if that situation actually arises. This is particularly true of disabling conditions. Non-disabled people, including some doctors, frequently have a very negative attitude towards living with disability, but once they experience it their attitude is likely to become much more positive292°

It has been found that people often make decisions when they are ill that are not consistent with their Advance Decision. One study showed that

Approximately 1/3 of patients changed their preferences in the face of actual illness, usually in favour of treatments rejected in advance.21'

Allowing people to set out in advance the types of treatment they would, or would not, be prepared to accept assumes a degree of medical knowledge which few possess. Even if one researched the subject and found out all the possible conditions one might suffer and all the possible treatments which might be available (in itself hardly a realistic prospect given the fact that medicine is always advancing). What is extraordinary today may well be very ordinary tomorrow, and new treatments become possible almost every day. All these factors would call into question the reliability of an Advance Decision. In addition, the Decision might be many years old and out of date, but it would still be legally binding.

The dangers inherent in giving people Lasting Powers of Attorney to make life and death decisions were highlighted clearly be the case in Florida of Mrs Majorie Nighbert, and 83 year old lady who was in a nursing home after a stroke.' She was deprived of a feeding tube by a Court order in 1995, and in the days following this judgement a nurse said she heard her ask "Will you give me a little something to eat?"

Mrs. Nighbert was not given food by mouth on the pretext that there was a danger of her choking. A nurse who gave her some milk was reprimanded. She had never signed an Advance Decision, but she had given Power of Attorney to her brother, who forbade tube feeding. A judge decided that Mrs Nighbert was "not mentally competent" to revoke the Power of Attorney and she died after two weeks of unimaginable suffering.

The potential for killing in the name of "following the patient's wishes" is startlingly clear, and this sort of danger has been highlighted by Baroness Professor Ilora Finlay, a Hospice doctor, who has spoken of a patient of hers, a lady aged 59, who was very ill. Her family seemed to be very concerned about her pain, and constantly asked for her diamorphine to be increased. However, members of the Hospice staff were not convinced that her pain was that severe.

The lady's 60th birthday passed with minimal celebration, after which the family visited her very little. She became depressed and eventually told a nurse that on her 60th birthday her fixed term life insurance policy expired, so the family would not now inherit the amount they had expected had she died earlier. They had wanted her drugs increased, ultimately, so that they could inherit her money."

This brings me to the first of two personal reasons why I am particularly worried about the effects of the MCA. My mother died in January 2005. I had an "Enduring Power of Attorney" to make decisions about her affairs, as she had dementia for the last four years of her life, as well as being very physically frail. This is different from the "Lasting Power of Attorney" in the MCA, in that it allowed me to make decisions about financial and property affairs, but not the medical affairs of my mother.

Before she became mentally incapacitated Mother expressed strong support for euthanasia, and had made enquiries from the Voluntary Euthanasia Society about Advance Decisions. Her views had been made clear to me many years ago - she felt euthanasia was a "benefit" for those who were incapacitated or in pain, although once she was incapacitated she appeared to be reasonably happy.

Mother sometimes needed help with eating, something she would have dreaded when she was more capable. Of course I could never, in conscience, have directed or sanctioned ending my mother's life by withholding or withdrawal of food or fluids, even though I was aware of her past views. The fact that a person once expressed support for what would actually be a horrible and painful death is no reason to be a party to bringing it about.

It remains a fact, however, that it would have been very easy for me, if the MCA had been law while she was alive, to bring about her death. This would ostensibly have been in her "best interests" (she had, after all, strongly expressed a "wish" not to be kept alive if incapacitated, and "believed" this would be in her interests) but actually to hasten my inheritance (which of course would have been larger the sooner she died - fees at good nursing homes are very high). In other words a seemingly merciful decision could so easily in fact be mercenary.

The MCA notes that the Court of Protection may appoint a "Deputy" if the incapacitated person does not have any family or friends to speak for him or her, to act, in effect, as if he had LPAs. This person, likely to be an Appointed Social Worker, would probably have no medical knowledge and would certainly have no knowledge of the patient or duty of care but would, in effect, be making decisions as if he were the patient.

Additionally, a system of "Independent Advocates" is intended to "protect unbefriended people" for whom "serious medical treatment" decisions are being made. One is tempted to say "with friends like this, who needs enemies" because these advocates, who will have had no previous contact with the incompetent person, will be called upon to represent the "wishes and feelings" of that person - but how will he know, when the person is incompetent and/or unable to communicate?

The central principle of the MCA is misleading in suggesting that "patient autonomy" is paramount" and that people should be able to "pass on" their autonomy either through an Advance Decision setting out their views, or by giving authority to another person to exercise LPAs. Autonomy is actually the freedom to consent to treatments which are in one's clinical best interests and to refuse treatments which are contrary to these best interests. It is actually impossible to "hand over" one's autonomy to another person, because by its very .nature autonomy belongs to the person exercising it. If it is "handed on" to another person it ceases to be autonomy and becomes guardianship, a very different concept. And of course in the case of refusing assisted food and fluids, the exercise of "autonomy" would destroy that autonomy forever.

The "Court of Protection" established by the MCA is a contradiction in terms, because one of its chief functions is to underwrite decisions to withdraw or withhold food and fluids from vulnerable people making a mockery of its name Clearly no pro-life person could serve on this Court, thus apparently giving those who do sit on it a free death-dealing hand. The Court will make its decisions on whether or not a patient lives or dies in secret, making it the first Court with life and death powers since the death penalty was abolished for murder in 1965.24

Disabled people including those in No Less Human have been vociferous in speaking about their fears. During the passage of the MCB Baroness Nicky Chapman, who was then 43 years old and has brittle bones, said "If this Bill had been passed 43 years ago I would not have been here. My parents were told I would be blind, deaf, unable to communicate and would have no noticeable mental function.'"5 She says "doctors ...sent me home to die - and I'm still waiting!" She went on to say that allowing people granted Lasting Powers of Attorney to make life and death decisions could be a "licence to kill."26

This brings me to the second reason for my personal fear of the MCA. I have spina bifida, hydrocephalus, emphysema and osteoporosis, and use my wheelchair full time. I have suffered a lot of pain in the past and still do now. Indeed I take morphine on a daily basis, and even that doesn't always alleviate the pain. When the pain is at its worst I cannot move, think or speak. In the mid 1980's mental pain, due to several factors compounded the physical pain to the extent that I no longer wanted to live. At that time doctors thought I didn't have long to live.

Over time my wish to die became a settled wish that lasted about ten years, and during the first five of those years I made several suicide attempts. Some were really "cries for help" but others were serious. I was determined to succeed then, perhaps particularly on one occasion that sticks in my mind

I had taken a large overdose of painkillers, and had slashed both my wrists. I then drank a whole bottle of Martini, lay down in my bed, cuddled my favourite teddy bear and waited to die. Fortunately for me (at the time I thought most unfortunately) my friend Sue arrived shortly afterwards. She found I was losing consciousness and called 999. I was taken to hospital where I refused treatments, so the doctors waiting until I lost consciousness then treated me anyway. Then I was extremely angry with both my friends and the doctors for overriding my autonomy. Now I am eternally grateful.

If Advance Decisions has been legally binding then I would certainly have written one, refusing in advance all life saving treatment. I would not then have received emergency treatment, and would thus have been denied the chance to rediscover my human value, a value which is not compromised by the fact that even now I have severe pain which is not always well controlled and a life limiting condition. Using the terminology used in the MCA to define "best interests" I then sincerely "wished" to die and "felt" my life had no value, but, as often happens, those "wishes and feelings" did not correspond with what was truly in my best interests. The MCA fails to take account of this not uncommon situation.

It took my friends, particularly Colin my full time assistant, many years to persuade me that my life did huge value. Had the MCA been in force then I would have missed the best years of my life. And no one would ever have known that the future held something good for me, and that my doctors were wrong in thinking I didn't have long to live.

I know I'm not alone in being frightened about what would happen to me if I were to become mentally incapacitated in future and unable to speak for myself. Doctors are already putting "Do Not Resuscitate" orders on disabled adults, often with no consultation at all." The MCA seemingly gives doctors both power and opportunity to kill me were I unable to speak for myself, because of an assumption that a life like mine is not worth living.
Under the MCA the killing of the most vulnerable people, first allowed under Bland, will continue and spread to include increasing numbers of victims From there it will be but a short step to the legalisation of "voluntary" killing, which the Dutch experience shows would encompass both those who have volunteered and those who are considered the kind of people who ought to volunteer but are unable or unwilling to do so 28 29

As long ago as 1984 Professor Helga Kuhse, then President of the International Federation of Right to Die Societies said

If we can get people to accept the removal of all treatment and care - especially the removal of food and fluids - they will see what a painful way this is to die, and then, in the patient's best interests, they will accept the lethal injection.'

It would seem that the MCA accepts this, and that it is the first step on a journey that will result in medical killing from the womb to the tomb. I would not be here now had the MCA been in force when I wanted to die. How many vulnerable people have to die before society, and our Government, wake up to the fact that killing people isn't the right solution to human problems, and that it is not in the best interests of disabled people to be dead?


  1. Making Decisions the Governments' proposals for decision making on behalf of mentally incapacitated adults, published in October 1999 contains the statement "The Government wishes to make absolutely clear its complete opposition to euthanasia, which is, and will remain, illegal"
  2. The Parliamentary Secretary to the Lord Chancellor's Department, Baroness Scotland of Asthal, said "We are determined that our proposals should not lead the way - through the back or any other door - to euthanasia. The noble Baroness (Baroness Finley of Landaff) may be confident that this is not our intent" House of Lords debate on Mental Incapacity 19 December 2002 Hansard Co. 774.
  3. Darren Tierney, MCB Programme Manager, Dept for Constitutional Affairs to Mrs. Susan Blake. 11 January 2005
  4. Letter from Simon Vinogradoff, Medico-Legal Branch, Family Policy Division, Lord Chancellor's Department to Alison Davis 29 November 1999
  5. Airedale NHS Trust v Bland [1993] AC 789
  6. Letter from Mr. David Goss, Bill Policy Officer in the MCB Legislation Division of the Department of Constitutional Affairs to a member of the Association of Lawyers of the Defence of the Unborn. December 2004.
  7. Withholding or Withdrawing Life-Prolonging Medical Treatment: Guidance for decision making BMA BMJ books. 1999
  8. Guidelines on Withholding or Withdrawing Life- Prolonging Medical Treatment: para 3.4 p.7 British Medical Association 1999
  9. "Tortuous arguments evade the issue" by Dr. Keith Andrews. BMJ 25 November 2005
  10. MCB Programme Manager at DCA letter. 11 January 2005 Ibid.
  11. Re F (Mental Patient, Sterilisation) [1990] 2 AC1, 78
  12. MCB Programme Manager letter 11 January 2005 Ibid.
  13. Airedale NHS Trust v Bland [1993] AC 789
  14. "Coma blunder ends in horror" by Zoe Brennan. The Sunday Times 21 February 1999
  15. MCA Clause 4 (5)
  16. "Doctors face prison for denying right to die" by Steve Doughty. Daily Mail 17 March 2006
  17. "Jail threat to doctors who deny right to die" by Steve Doughty. Daily Mail 17 March 2006
  18. MCB Programme letter 11 January 2005. Ibid
  19. "Ventilation or dignified death for patients with high tetraplegia" by B.P. Gardner, F. Theocleous, J.W.H. Watt & K.R. Krighnan. BMJ 1985, 291: 120-22
  20. "Will to live wins over the right to die" by Dr. Ian Basnett. The Observer 24 March 2002
  21. "Do patients' treatment decisions match advance statments of their preferences?" Be Melinda Lee. Journal of Clinical Ethics 090:03 (Fall 19989) 258-262
  22. Case no. 95-4-PSA in the First Circuit Court of Okaloosa County (Probate Division), Circuit Judge Jere Tolton presiding.
  23. Debate on Mental Health in the House of Lords. Hansard 18 December 2002 Column 766
  24. "Judges to decide on living wills in secret courts" by Steve Doughty. Daily Mail 14 August 2006
  25. "Our right to life, by disabled Baroness" By James Chapman. Daily Mail 11 January 2005
  26. "Doctors said they could do no more and sent me home to die - I'm still waiting" by Melissa Kite Daily Telegraph 6 February 2005.
  27. "Public call for greater right to life" Disability Rights Commission Liz Sayce, Director of Policy and Communications at the DRC said that 82% of respondents to a DRC survey wanted better protection against discrimination in the use of "Do not Resuscitate" orders and noted the "terrible assumptions about the quality of disabled peoples lives" that lies behind such orders. 20 January 2003
  28. "The Baby Killers" by Sarah Chalmers. Daily Mail 26 January 2005
  29. "Haunted mother who backs mercy killing "by Sarah- Kate Templeton and Steven Swinford. The Times 5 November 2006
  30. Dr. Helga Kuhse, Fifth Biennial Congress of Societies for the Right to Die. September 1984

Alison Davis founded the Charity ENABLE (working in India) to help disabled children