Memorandum by Dr G M Craig MD, FRCP on
behalf of the Medical Ethics Alliance
This response will touch on the following points
raised in the Call for Evidence.
A. How society treats mentally ill or disabled
persons who still experience social exclusion, stigmatisation,
discrimination or non-respect of their fundamental rights and
dignity; and
B. Promoting mental health and addressing
mental health through preventive action
A. DISCRIMINATION
WITH RESPECT
TO THE
PROVISION OF
FOOD AND
WATER
1. The EU strategy on mental health should
address the fact that food and water, howsoever given, should
be regarded as a basic human need without which no person can
survive. The view that food and water when given by means such
as tube feeding can be regarded as medical treatment is controversial
and unsatisfactory. It puts at risk the lives of many disabled
and mentally incompetent patients who cannot make decisions for
themselves.
2. Guidance issued by the British Medical
Association in 1999 allows doctors to withhold or withdraw so
called "artificial nutrition and hydration" (ANH) under
some circumstances if patients are deemed to lack self-awareness.
3. Guidance issued by the General Medical
Council (GMC) in 2002 allows doctors to withhold or withdraw life-prolonging
medical treatment including ANH under some circumstances if patients
are mentally incapacitated.
4. When the draft Mental Incapacity Bill
was under scrutiny by a Joint Committee of the House of Lords
and House of Commons in 2002-03, many doctors advised the Committee
that ANH should be regarded as basic care and not medical treatment.
See for example evidence given by:
— The Medical Ethics Alliance (Draft
Mental Incapacity Bill, Joint Committee Report, Session 2002-03
Volume II, Oral and Written Evidence. Ev 162 para 13. HMSO)
and by
— Dr David Kingsley (Ibid Ev 321, para
2.2.1.) and by
— Dr P J Howard. (Ibid. Ev 165, para
7.)
5. Disturbing cases. In 2002 the
Medical Ethics Alliance (MEA) gave the Joint Committee on the
draft Mental Incapacity Bill brief information about cases where
ANH had been withheld from dying patients or terminally ill elderly
patients. (See Ev 163, Committee Report Vol II Oral and Written
Evidence.)
6. In 2006 the MEA drew these cases to the
attention of Appeal Court Judges in the Burke case (vide infra).
The Judges found the information "disturbing" but did
not accept it as admissible evidence. (R [Burke] v General Medical
Council [2005] EWCA 1003. In the Supreme Court of Judicature Court
of Appeal (Civil Division) on Appeal from the High Court. Paragraphs
60, 61 and 63)
7. The case of Mr Lesley Burke.
Mr Lesley Burke is a man who suffers from a progressive neurological
disorder that will eventually render him incapable of speaking
or swallowing. He challenged the legality of the GMC guidance
on "Withholding and Withdrawing Life-prolonging Treatments:
Good practice in decision- making". He wanted to ensure that
when the time came he would receive ANH to prevent him from dying
of dehydration and starvation. Mr Justice Munby found in favour
of Burke, and ruled that the GMC Guidance was unlawful in several
respects. His judgment was overturned on Appeal in July 2005.
8. Appeal Court Judges were swayed by concerns
expressed by the Intensive Care Society, and feared that the Courts
might be swamped with cases if, as Judge Munby had advised, Court
supervision of controversial end-of-life decisions involving the
withdrawal of ANH was increased. Yet Dr Bruce Taylor, the Consultant
who now chairs the Intensive Care Society Standards Committee,
writing in GMC today in April 2006, stated:
"... in critical care medicine ANH is generally
a basic pre-requisite of supportive care. Even when it is clear
that treatment is futile, its withdrawal or withholding is seldom
(if ever) contemplated as a means of allowing nature to take its
course."
9. Mr John Reid, then Secretary of State
for Health, wrote to Appeal Court Judges to express concern about
the cost implications of keeping patients alive. (Daily Mail
5 February 2005). Yet given the favourable contracts offered
to the NHS by firms that supply liquid feeds, nutrients required
to tube feed an inpatient for a year cost less than one MRI scan
of the knee. Thus to withhold ANH from the elderly on grounds
of expense is unacceptable. Moreover once a feeding tube is in
place ANH provision can be managed in the community if carers
are given the necessary training and supervision.
10. Mr Burke was refused leave to take matters
to the House of Lords. He has now applied for his case to be heard
in the European Court of Human Rights. Patients should not have
to go to these lengths to ensure that they do not die of dehydration
or starvation at the end of life.
11. The right to receive food and water.
During the House of Lords Debate at the second reading of the
Patients' Protection Bill in 2003, Earl Howe said:
"... The issue for us is whether food and
water should be regarded as separate and distinct from conventional
medical treatment, and whether the right for every patient, however
ill, to receive food and water should be protected by law."
(Hansard 12 March 2003, col 1426)
Many people believe that the answer to these
questions should be yes.
12. Since the right of patients to refuse
treatment including food and water is well established, the right
of patients to receive food and water, howsoever given, should
also be recognised and protected by law. The EU Green Paper provides
an opportunity to address this crucial matter.
13. Basic care and human rights.
All people whether mentally ill or not should have certain rights
safeguarded, in particular:
— The right to receive food and water
by any reasonable, appropriate and proportional means that do
not cause unacceptable discomfort.
— Basic nursing care and bodily comfort
provision as necessary.
— Warmth, clean dry clothes and clean
bedding.
— Shelter and friendly human support
in safe surroundings.
— Pain relief when necessary, short
of deliberate ending of a life.
14. Assessment of Mental Incapacity.
Mental Capacity may be temporary and reversible, slowly progressive
or permanent, depending on the cause. Therefore skilled medical
input is required before a person is labelled "mentally incapacitated"
or "lacking in self-awareness" with dangerous consequences.
15. When the question of withholding or
withdrawing ANH arises in a person who is thought to be in a permanent
vegetative state, a Judge requires evidence that this diagnosis
is correct before a decision to permit withdrawal of ANH is made.
Patients with lesser degrees of brain damage should have similar
safeguards in law, before ANH is withdrawn or withheld.
16. The case of Miss X. Miss X was
a woman who suffered a severe traumatic head injury. Her family
thought from comments made prior to the injury, that she would
not want to live, so ANH withdrawal was considered. Arrangements
were made to bring the case to Court, but specialist neuropsychological
assessment by Professor T M McMillan of Glasgow University showed
that she wanted to live. Therefore ANH was not withdrawn. Over
the course of the next decade her condition improved progressively.
Ten years post injury she was living in a modified bungalow, able
to feed herself with a spoon, independent in an electric wheel
chair and able to walk 16 metres with two helpers. (McMillan and
Herbert, Brain Injury 2004, 18:9 935-940).
17. Professor McMillan is of the opinion
that:
"Where there is any possibility of a locked
in state and the issue of cognitive ability or will to live is
in doubt, an expert and independent neuropsychological assessment
is essential and should be mandatory." (Brain Injury 1996;
11:481-490)
18. Lasting power of attorney. When
the Mental Capacity Act (2005) comes into operation the current
Enduring Power of Attorney (EPA) will be replaced with a Lasting
Power of Attorney (LPA). The Law Society is worried that the LPA
will create new problems, for capacity will have to be assessed
in relation to a particular decision at the time that the decision
has to be made, rather than at the point when control is handed
over to the attorney. Solicitors foresee problems for banks for
example (Law Society Gazette 4 May 2006 page 8). However
since LPAs can apply to irrevocable life and death decisions such
as withholding or withdrawing ANH, it is obviously important to
reassess the patient's mental capacity and wishes very carefully
before a final decision is made. No doctor should be obliged to
comply with an advance directive that is clearly suicidal in intent.
Intentional killing of patients by act or omission should not
be permitted.
19. Parliament should refrain from passing
laws that undermine the moral basis of medicine. Assisted suicide
should remain unlawful in the UK, irrespective of what goes on
in other member states in the EU.
20. EU strategy on Mental Health should
restrain member states from making unethical decisions on political
or economic grounds.
21. Doctors and nurses working in the EU
must be given the resources needed to practice a high standard
of medicine.
22. EU strategy on Mental Health should
promote the social inclusion of mentally ill and/or disabled people
and should protect their fundamental rights and dignity.
B. PROMOTING
MENTAL HEALTH
AND ADDRESSING
MENTAL HEALTH
THROUGH PREVENTIVE
ACTION
23. Many major causes of mental illness
are potentially preventable. For example dementia due to cerebrovascular
disease (multi-infarct dementia) could be reduced by careful
attention to diet during life, by cutting down on smoking, and
by medication that reduces risk factors such as a high cholesterol.
24. The basic pathology of Alzheimers
Disease is known. Grants to support good research could ultimately
find a cure. Unfortunately in the UK the provision of medication
that may slow the progress of this devastating illness is being
limited for financial reasons. This matter should be addressed
as it discriminates against the vulnerable elderly.
25. Excessive consumption of alcohol
increases the risk of mental illness through head injuries
when drunk, and through vitamin deficiencies due to inadequate
diet. Chronic alcoholism causes loss of memory, blindness and
damage to peripheral nerves. It disables people and families.
Treatment of liver failure due to alcoholism is a considerable
financial burden on the National Health Service. Alcoholism puts
at risk the health of the younger generation and increases vandalism
in inner cities. There are far too many licensed premises in our
cities. In addition our young people are having a bad influence
worldwide, for the habit of drinking is now spreading to places
such as India. Measures to reduce alcohol consumption must be
addressed with greater urgency.
26. Misuse of Drugs. Criminal activity
by drug addicts who are short of money to fuel their habit results
in burglaries and muggings that reduce the quality of life for
law-abiding citizens. Young drug addicts sometimes steal from
their own family members causing grief, distress and their eviction
from the family home.
27. Drug addicts are at risk of premature
death from hepatitis, septicaemia and AIDS. In addition drugs
such as cannabis increase the risk of mental illness. Anything
that the EU can do to help the police control drug traffic would
be welcome.
28. Stress due to the frenetic pace
of modern life is a major cause of illness and days off work.
Human beings should have time to relax with their families.
29. Spiritual aspects of life are vitally
important. People must have freedom to worship and to speak
freely about their personal faith in the privacy of their own
homes and in public places. The importance of religious faith
to mental health should never be underestimated.
30. Nations should protect and preserve
buildings that are an important part of their spiritual heritage.
In the UK many churches are in need of repair and restoration
that their congregations cannot afford. Churches and cathedrals,
synagogues and mosques add dignity and stability to life. At times
of crisis people go to their places of worship for comfort and
reassurance. The spiritual heritage of Europe must be cherished
for generations to come.
31. Music is an important part of religious
expression. Church organs are an important part of our musical
and spiritual heritage. EU laws that prevent the manufacture or
repair of pipe organs because their pipes or electrical components
contain some lead represent bureaucracy gone mad. The loss to
our musical heritage will far outweigh any conceivable health
danger due to lead in the pipes.
32. Elderly people who cannot attend places
of worship should be visited at their homes. Simple religious
services with hymns should be arranged at residential and nursing
homes. There are many example of good practice in this field eg
the work of the Christian Council on Ageing in the UK, and of
organisations such as PARCHE, based in Eastbourne, Sussex, UK.
33. EU strategy on mental health should
recognize that faith is an important factor in mental health and
wellbeing.
In Conclusion. The Medical Ethics Alliance
consider that an EU strategy on mental health could be helpful
and appropriate. Such a strategy might usefully include some of
the points made in this brief paper.
The Medical Ethics Alliance is an association
of World Faith organisation and individuals who share a common
ethos as stated in the Hippocratic Oath or Code of Practice and
the Declaration of Geneva of 1948. www.medethics-alliance.org.
Address PO Box 11582, Edgbaston, Birmingham B16 9XE (UK).
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