50.Memorandum from Dr Clare Whitehead
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to be withdrawn in certain circumstances with the intention of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
(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
(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."