Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

20.Supplementary memorandum from the Medical Ethics Alliance (MIB 1203)


  1.  Would the inclusion of a legal definition of "best interests" clarify the legislative intent of the Draft Bill or would such a definition be unduly static and inflexible for decision-makers?

  The Joint Committee should ensure that the Draft Mental Incapacity Bill includes a clause that prohibits the withdrawal of food and fluid however delivered with the intention of shortening life. Food and fluid should not be withdrawn unless the means of provision is evidently burdensome to the patient. There should be no requirement that such provision should improve the condition of the patient since this may not be possible. Parliament must acknowledge that without nourishment and fluids all human beings will die. The criteria used to consider "best interests" are far too vague. Lord Brandon's "principle of necessity" should not be discarded. A treatment should be considered necessary "if, but only if it is carried out only to save their lives, or to ensure improvement or prevent deterioration in their physical or mental well being." (Ref: Re F 1990 2 ACl). See also Northridge v Central Sydney Area Health Service [2000 NSWSC 1241] 29 December 2000.

  The Mental Incapacity Bill should comply with the Universal Declaration of Human Rights 1948, which forbids discrimination on the basis of personhood. Article 6 declares that "Everyone has the right to recognition of a person before the law." Please note that this applies to everyone—the old, the disabled, children with severe learning difficulties, those with brain damage—in fact all people whether they are deemed to be mentally incapacitated or not.

  Parliament should note that many people with conditions that fall short of a permanent vegetative state are having life sustaining food and fluids withheld with fatal results. In some cases this amounts to euthanasia by omission. Elderly stroke patients who cannot swallow are at particular risk. The concept of "Best Interests" should be restricted to clinical best interests otherwise it can be open to misinterpretation and misuse. The best interests of the patient will invariably include the provision of basic care. (For definition of basic care see answer to question 13).

  We are concerned that the law is proving a weak defence in practice. There can be no adequate legal definition of "best interests" that fails to recognise the right to life. Judges can be ill informed and prejudiced on matters of medicine and ethics.

  2.  How should the individual's clinical best interests be balanced against their wider interests?

There should never be a conflict between an individual's clinical best interests and their wider interests unless it is ever considered "this patient would be better off dead." This however is a philosophical value judgment that "this person's life is no longer worthwhile." The "best interests" of a patient are never to be killed by an act or an omission.


  3.  In your view, should the General Authority be restricted to particular categories of medical interventions? If so, what restrictions would be appropriate?

  Giving Lasting Power of Attorney to a proxy in medical decision-making is inappropriate. Since doctors frequently get diagnoses wrong the potential for proxy decision makers to make poor medical decisions is even greater. Making decisions "in good faith" will not ensure greater accuracy. According to evidence presented to the Scottish Parliament in 2000 the congruence between the views of patients and proxies is often minimal with some studies suggesting it is no greater than chance.

  Social service departments in England and Wales are often financially involved in the care of patients in residential and nursing homes. From April 2004 we understand that they will be fined if patients awaiting placement in the community block hospital beds. Thus they may have a vested interest in the patient's early death. This being so, social workers should not be made court deputies and given powers of life and death within the terms of the Draft Mental Incapacity Bill. Parliament should also be aware that pressure of work and shortage of beds in the Health Service combine to make many doctors resentful of elderly bed blockers. This is exceedingly dangerous and may lead to inappropriate decisions to withhold life-prolonging measures including nutrition.

  There are indications that the life expectancy of women may have decreased in the last four years in areas that have a high proportion of elderly people. This may be a consequence of publication of the BMA guidelines on Withholding and Withdrawing Life Prolonging Treatment 1999. This trend if confirmed requires further investigation. In the opinion of Richard Gordon QC, the Mental Incapacity Bill is incompatible with article 2, taken in conjunction with article 6 of the European Convention on Human Rights, because it fails to comply with the state's obligations under article 2 to provide practical and effective protection of the right to life.


  4.  Do the provisions contained within the Draft Bill enable people to be sure that their beliefs with regard to treatment will be respected if they lose capacity? No. The cards are stacked in favour of discontinuing treatment or sustenance. There is no provision in the act to make an advance directive in favour of continuing treatment or sustenance, only in stopping it. The refusal of treatment is given respect but request for nourishment does not seem to have the same respect afforded it at all.

  5.  Should the Draft Bill specify that a person acting on behalf of a person with incapacity should have regard to their values as well as their "wishes and feelings" when deciding what is in their best interests? There is a dangerous subjectivism involved in deciding what is in someone's "best interests". Values are important but evaluation of "best interests" should be made on objective criteria, not subjective ones. An important additional point is that the values of doctors and nurses should be respected. Health care professionals from any faith tradition, which abhors the deliberate taking of life—whether by action or omission—should have the right to protect their own consciences.

  6.  As in our society people choose to adhere to different values and beliefs, do you consider that the Draft Bill achieves the right balance between respect for individual diversity and respect for life? If not, what would you change? Respect for life is an elastic concept because it can be more or less. If respect for life diminishes to the point where a person's life is considered to be not worth living, then "respect for life" ceases to have meaning. The principle of the sanctity of life, which protects patients from killing by action or omission, is the only foundation on which to build an ethical framework strong enough to resist utilitarian pressures.

  7.  In your view does the Draft Bill distinguish between ending life by omission and not aiming to prolong life by inappropriate means? If not, what safeguards would you like to see? No it does not. It gives scope to ending life by omission. The bill should make it plain that food and nutrition is not medical treatment but part of basic care. Withdrawing this with the intention of killing the patient is always wrong, though it may be necessary occasionally to withdraw tube feeding for a time if it becomes burdensome to the patient (eg causing diarrhoea).


  8.  Will giving advance refusals a statutory basis risk the welfare of patients? If so, how might the Draft Bill be amended to avoid this?

  Yes. Advance refusals have already been shown to risk the welfare of patients. They shouldn't be made legally binding.

  9.  Should the Draft Bill stipulate that advance decisions must be made in writing? Yes of course they should be made in writing. There may be no proof of verbal wishes and this can lead to disputes in court. Directives should be carefully considered decisions made with the fullest information although no matter how good the information is, it is impossible to foresee every circumstance. They should not be made under duress and be guidance only. Patient's wishes often change with changing circumstances. Some people have lived to be thankful that their death wishes were ignored.

  10.  In your view are the safeguards in the Draft Bill sufficient to protect individuals who suffer from fluctuating levels of capacity? The fact that "best interests" is not defined allows the possibility of the application of "futile care theory." This is a position adopted in the cases of Anthony Bland in 1993 and Mrs M and Ms H in 2000 where the patients' lives were considered to be not worth living. There are very few safeguards in the bill since the proposal to vest the power of life or death in the hands of an attorney doesn"t seem to carry any accountability. There should always be a presumption in favour of life.

  11.  The Draft Bill puts into statute the current common law position as regards advance refusals. Would denying capable individuals the right to make statutorily enforceable advance decisions to refuse treatment amount to a form of discrimination against people who later become incapacitated? No. If anything it would be a safeguard. If advance refusals are made statutorily enforceable, an incapacitated patient might be at increased risk if their earlier wishes were inappropriate and ill advised because nobody could then protect them.

  12.  Do you envisage that there are any medical circumstances when the wishes expressed in a valid advance directive (or a person's wishes expressed through a donee acting under an LPA) might reasonably not be followed by the treating doctor? If so, can you give examples?

  We are concerned about clause 24 which will cause considerable chaos and muddle. It is unreasonable to expect a busy doctor to ponder all the possible factors that could invalidate an advance directive. Examples might include the following circumstances:

    —  If the treatment proposed is not the treatment specified in the AD or where a different drug is proposed.

    —  If there is a change in medical circumstances. For example, new treatments for dementia, CJD, AIDS etc. Section 24(4) describes circumstances where new treatments develop which were not known or foreseen by the patient at the time they made an advance directive.

    —  If there is a change in prognosis. Patients diagnosed as suffering from a "Permanent Vegetative State" or other severe mental incapacity who may recover slowly over years. (See case 1 in annex).

    —  If there is a change in social circumstances when necessary support is given.

    —  If the patient had been suicidal or depressed when they made the AD.

    —  Where there is doubt over the wording of the document. The doctor might realise that the condition was eminently treatable with a good chance of cure or significant improvement.


  13.  Should the Draft Bill exclude "basic care" or a "minimal level of care" from its procedures and mechanisms? If so, how should "basic care" or a "minimal level of care" be defined?

  Yes. That is most important. Basic care should be defined carefully. It includes:

    (a)  Provision of food and water by any reasonable, appropriate and proportional means that do not cause the patient unacceptable discomfort.

    (b)  Basic nursing care and bodily comfort provision.

    (c)  Warmth, clean dry clothes and clean bedding.

    (d)  Shelter and humane friendly support in safe surroundings.

    (e)  Pain relief short of deliberately ending a life.

  It should be emphasised that the provision of food and fluids via a tube is not "medical treatment." There is no illness or pathology being treated. The BMA Ethics Committee's guidelines have not been endorsed by the profession. The committee needs to be aware of the fact that a fully functioning cerebral cortex is not needed for the sensation of thirst. Most people would be shocked to know that the provision of food and fluids via a tube is now called medical treatment so that it can be withdrawn. If it is considered to be inhumane to starve or dehydrate and animal to death (by withholding basic care) then at least the same protection should apply to human beings whether mentally incapacitated or not.


  14.  Do all the witnesses agree with the Catholic Bishops' Conference view that the Draft Bill currently contains insufficient safeguards against donees who fail to carry out their responsibilities properly? If so, how should these safeguards be increased?

    (a)  Too much power is proposed to be vested with donees. They should have an advisory capacity only.

    (b)  Doctors and other health professionals must have prompt access to court to appeal against decisions. This implies access to good lawyers and properly funded legal aid.

    (c)  Decisions should be monitored by an independent person.

  15.  Should Local Authorities be given duties to investigate possible abuse taking place under the provisions of the Bill? Would this approach help to address any concerns you might have about the exploitation of vulnerable people?

  See answer to question 3 above relating to dangerous conflicts of interests with local authority social workers.


  Case 1. From a nurse working in a centre in the Midlands specialising in the care of severe brain injured patients. Mr S, a 43 year old man who was admitted to us following extensive brain surgery was only able to blink and move a thumb. Three years later, after extensive rehabilitation he can walk, talk, eat small mouthfuls if diet, is continent and fully aware of his surroundings. He is glad he is alive now and when made aware of this new bill had this to say: "I disagree with it. No one has the right to make that decision. Everyone should be given the right to live. I always knew I was going to get better."

  Case 2. Elderly lady who suffered a stroke. Starved for 48 days in a hospital in England. Doctors equivocated about a PEG. Relatives could not agree.

  Case 3. Elderly woman. Teaching hospital, Scotland. DNR order made against the wishes of the son. Naso-gastric tube in situ. Given tap water only for seven weeks. Died. No inquest. Non-clinical "expert" advised the coroner that all was done "in the patient's best interests."

  Case 4. 83 year old lady. Minor CVA. Swallowing impaired. No food or water given. Died day eight in residential home.

  Case 5. Elderly lady. CVA. Not hydrated. Died day six in nursing home.

  Case 6. Elderly man. Had drip but no food for six weeks in hospital. Too weak for a PEG. Could swallow but not being fed. Died.

  Case 7. 89 year old lady. Swallowing problems, long standing vague undiagnosed neurological problem. Doctors procrastinated—admitted too late for PEG. Died in hospital weighing six stones.

  Case 8. Terminal cancer patient. Age 54. Sedated without hydration for eight days in hospice. Staff refused to set up a drip. Patient died in dehydrated state.

  Case 9. Cancer patient in pain from isolated metastasis age 66. Not dying. Sedated without hydration in a hospice and morphine increased despite pain control. Died comatose and dehydrated after seven days. Widow finally after six years' struggle obtained an independent opinion that supported her view that the patient was killed to cure his pain. Legal aid withdrawn before case went to court.

  Case 10. 85 year old woman in nursing home. GP covered. Could swallow liquid, tended to choke. CVA's and some dementia. Feeding supplements stopped by GP. Patient took 58 days to die of starvation and bronchopneumonia.

  Case 11. Mrs W. Elderly woman in rural cottage hospital. Conscious, unable to speak, too weak to swallow. Found by locum doctor undiagnosed and dehydrated in a side ward. Responded well to subcutaneous fluids. Within days could speak and drink, happy to be alive. Considered to be a "ghastly survival" by in house team.


  In case 10 above, the relatives tired of waiting for Mrs O to die. Asked GP what would happen if feeding supplements were stopped. Collaborated in her death.

  Case 12. Elderly woman in hospital not fit for discharge home. Money available for nursing care. One daughter hid this fact from doctors who sent her home against the wishes of another daughter. She fell within days and was readmitted with pneumonia and died. Scheming daughter got her inheritance.

  Case 13. Terri Schiavo. Florida October 2003. 39 year old woman with cognitive disability after collapse from unknown causes 1990. Husband won 1.3 million dollars in a malpractice suit saying he would look after her for the rest of his life. Within months he got a DNR order place on her and denied her medical treatment. He dated another woman and is now engaged to be married. In 1998 he petitioned a court to withhold tube feeding and fluids until she died claiming that this is what she wished on the basis of comments he states she made before she collapsed. Terri's patients dispute this. She responds to them and they are able to feed her orally. They want to look after their daughter but a judge refused and ordered her execution by removing her feeding tube and starving her to death.

October 2003

previous page contents next page

House of Lords home page Parliament home page House of Commons home page search page enquiries index

© Parliamentary copyright 2003
Prepared 28 November 2003