Joint Committee on the Draft Mental Incapacity Bill Written Evidence

50.Memorandum from Dr Clare Whitehead (MIB 25)


  I am a retired Consultant Physician in Rehabilitation Medicine to West Berkshire, retiring in 1990. I held the post for 13 years, having previously worked in the Rehabilitation Centre in Oxford. I have had 18 years of looking after people who had suffered brain damage from strokes or head injuries. I therefore write my comments from the experience of working with a team of professionals to help people return to some normality of life, even if only partial recovery seemed likely at the time of admission for rehabilitation, usually a few weeks after the event. I am particularly concerned about the possibility of withdrawal of hydration and nutrition, making it legal under certain circumstances.

  1.  Treatment: I note that basic life support by administration of fluids and nutrition is now designated "treatment", to be withdrawn in certain circumstances with the intention of causing death. This is Passive Euthanasia. In the case of fulfilling an Advance Directive, it becomes Assisted Suicide. Changing the terms used is merely playing with words to attempt to avoid describing such acts as Euthanasia and therefore opening a loophole for legality, so that those involved in facilitating such acts are protected from prosecution. Describing neglect as "withdrawal of treatment" does not alter the fact that it has the intention of depriving the patient of life, and is therefore Euthanasia by another name.

  2.  The patient's best interests: (ref: page 2, section 4 "Best interests") "Best interests" appears to be based on the known wishes or feelings of the person where he/she has the capacity to communicate these to others. According to this draft bill, if he is "mentally incapacitated" and unable to communicate, the "best interests" are supplied by those who claim to have knowledge of that person, or who have legal powers such as held under the proposed Lasting Power of Attorney.

  3.  Comment: This approach could be detrimental to the patient's interests:

    (a)   the withdrawal of nutrition and hydration will inevitably cause suffering which the patient may not be able to communicate; and

    (b)   if the patient is thought to be suffering, a lethal injection might readily be given to relieve the suffering, ie active euthanasia. Indeed this active euthanasia was carried out on a patient in Japan (reported in the daily Telegraph 11 August 2003;

    (c)   the patient may not have been in this vulnerable situation before. He might feel differently now and want to reverse his Advance Directive, but be unable to communicate this to others;

    (d)   diagnosis and prognosis given for his condition may be inaccurate. In my experience of caring for rehabilitation patients, it is easy to give up hope of recovery too soon. Even if full recovery does not seem likely, the patient may recover sufficiently to be able to return to spouse or family. He may become depressed by the apparent hopelessness of the situation and then fail to improve to his potential. Some patients may make an unexpectedly good recovery contrary to expectations at an earlier stage;

    (e)   there is an opportunity for relatives who want to inherit to manipulate the situation to their advantage;

    (f)    new treatments, advantageous to the patient may now be available;

    (g)   pressure, possibly subtle and not openly expressed may make him feel that he would be burden to himself, his family, and to the National Health Service if he remains alive. Pressure on health service staff to reduce the number of bed blockers to keep up with waiting list targets, is another factor. Patients may seem to be more mentally incapacitated than they are. Expert speech and neuropsychological assessment is needed for a full and accurate diagnosis. Patients who are unable to communicate effectively may easily be assumed to be mentally incapacitated, or less mentally able than they are.

  4.  Some cases:

    (a)   A married woman in her 30s with husband and two children, was admitted to the acute medical ward unconscious, having had a cerebral haemorrhage. She remained unconscious for several weeks and it was thought that the outlook was poor. When she recovered consciousness she was found to be hemiplegic with speech impairment. She made excellent rehabilitation progress and went home to her family with almost complete recovery.

    (b)   A man in late middle age was admitted for rehabilitation, being severely disabled from multiple cerebral infarcts. (that is areas of dead tissue in the brain). He sustained many disabilities as a result, including impaired speech function and multiple disabilities of higher cerebral function. He underwent inpatient rehabilitation for many weeks with definite but only slight improvement. He and his wife, who had advanced cancer, wanted him to be able to return home to enjoy being with her in the remaining weeks of her life before she died. This slight improvement was enough for this goal to be achieved.

    (c)   On TV news recently we heard of a young man who had recovered consciousness after being in coma for 19 years following a head injury! It seems that he is able to communicate meaningfully with his family members.

    (d)   I have personal friends who have had three children now adults. One is severely mentally and physically disabled from meningitis at the age of three. She is devotedly cared for by her parents. From time to time she is admitted to hospital with severe chest infections. I am sure that the "withdrawal of treatment" as described in this draft bill has never been part of the equation.

  5.  Comments: (a)  People with an illness or injury, including brain injury, need to be given time to recover; and, together with their relatives, come to terms with what has happened to them. Healing may continue slowly for months or even years. It is only too easy to hold onto low expectations of recovery when in fact the outlook may be more optimistic than expected.

  6.  Conclusion: (a)  By now some people may be feeling that if they reach a certain level of severe disability, particularly from mental incapacity, they are considered a burden to society and not of value to themselves or their families or the society in which we live. A stroke patient that I had agreed to have transferred to the rehabilitation ward from the acute medical ward had to wait about two weeks before we had a vacancy. She told mc how upset she felt because of the change in attitude of the staff, once they knew she was waiting to be transferred. She felt she was no longer wanted. No doubt the staff were under pressure to vacate beds for new admissions. The legalisation of Abortion in 1967 has no doubt been contributory to a change of atmosphere in the NHS; particularly since diagnostic amniocentesis in pregnancy became available, so that babies that were likely to be born with defects such as Down's Syndrome could legally be killed before birth. Now that many unborn are destroyed, it is easier to consider the next stage; the Elimination of the Unfit! How this would free up blocked beds, improve waiting lists, enable hospital trusts to meet their Targets, and show the government of the day to be making improvements in the NHS. We have already killed off many of our younger generation through abortion, (by 2001 well over five million in the UK alone, apparently) so that we now have a demographic disaster. There are large numbers of the elderly, (of whom I am one!!) compared with younger people of working age who might now be providing the working force for the NHS. Therefore it might be "very convenient" to reduce the number of sick, vulnerable, aged and heavily dependent people in our society to save money and make for a more balanced population. Such considerations can work subconsciously on staff struggling to keep up with the demands on the service. None of us can escape the possible consequences of such a scenario. Any of us could become the victims. These factors need consideration with regard to the draft MIB.

    (b)   What kind of society have we become? What is the value of a life? What are the underlying values that we hold and on which we base decisions on life and death issues? Increasingly we live in a society where there seem no longer to be generally held good values. These things need to be reflected upon and acted on before the death culture, increasingly prominent in our society, takes a further hold. This draft bill gives a very negative impression. We need universally available expert rehabilitation/assessment services, and palliative care with inpatient and outpatient support services. There have been significant developments in palliative care skills in the last 30 rears or so, in the management of pain and distress in those in terminal illness. Perhaps if such services were more readily available there would be less pressure towards withdrawing life-maintaining treatment. It is important that patients feel valued and respected. Modern palliative care an enable them to have a positive quality of life with freedom from pain to the end.

    (c)   Implications for medical and nursing practice and for the ethos of the NHS: If the proposals described in the draft Mental Incapacity Bill became law, it would completely alter he ethics of medical and nursing practice. As a newly qualified doctor in 1958, it was required that I should always uphold the principles of the Hippocratic Oath: "I will keep them (the sick) from harm and injustice." "I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and art."

    (d)   A modern version of this Oath (Louis Lasagne in 1964) obviously allows for euthanasia to become legalised. "Most specifically must I tread with care in matters of life and death. If it is within my power to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play God." Apparently many medical students will take this modern version. (NOVA Online/Survivor MD. The Hippocratic Oath).

    (e)   Where are our ethical standards today? The legalisation of abortion in 1967 opened Pandora's box, with regard to the death culture now so prominent in our society. Legalisation to allow withdrawal of hydration and nutrition would be a further slide down the slippery slope to fully legalised euthanasia. Our hospitals would become frightening places for the vulnerable elderly, brain damaged and severely disabled. A priest has recently told me that several people, mostly the elderly, have told him that that they are feaiful of going into hospital, not because of their actual physical condition, but because of "the things that they can do to you there". Relativism, in which one set of values is considered as valid as another, prevails. The goal posts are moved to accommodate new life styles. Our Western civilisation has been based on Christian values and precepts for well over a thousand years. It was from our Christian communities of the past that the care of the sick and disadvantaged was first developed until it was taken over by the state. These principles of love of God and love and care of our neighbour and the Ten Commandments that have been the bedrock of our nation until modern times, are now being jettisoned more and more so that there is no longer a stable value base in our society. St. Benedict in his Rule for Monasteries describes unsatisfactory monks who live in groups "without a shepherd": "Their law is the desire for self gratification: whatever enters their mind or appeals to them, that they call holy, what they dislike, they regard as unlawful". Our society is becoming a rudderless ship, no longer based on sound ethical values for the good of the individual and the common good. A rudderless ship is likely to end in shipwreck.

    (f)    At Lourdes Shrine in the South of France where I twice accompanied pilgrimages as a doctor, values are the very reverse of what is being promoted in our society today. At Lourdes the sick are honoured and are the VIPs. There they find they are valued as individuals, however sick or severely disabled. They find a warm and loving welcome. Many return encouraged by their experiences and have a new and happier life even if a physical cure is not evident.

    (g)   Finally I quote again from "St Benedict's Rule for Monasteries" (translated from the Latin by Leonard J Doyle. The Liturgical Press, St John's Abbey, Collegeville, MN 56321 1935) "before all things, care must be taken of the sick, so that they will be served as if they were Christ in person, for He Himself said, "I was sick, and you visited Me," and "What you did to one of these least ones, you did to Me."

August 2003

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