It is one of the hardest blows for any family if one of its members suffers
severe brain damage, and requires total care.
When everything possible is being done in hospital to improve the patient's
condition, using the most up to date knowledge and equipment, the family's pain
may be bearable. But what if a patient apparently fails to respond and doctors
then assign no value to his or her life? Since the Bland case, after a
person has apparently been in an unresponsive state for one year, doctors may
apply for a court order to cause death by cutting off food and fluids - now
labelled "withdrawal of medical treatment." Post-mortem details of
patients like Tony Bland and Karen Quinlan show that there is still uncertainty
about the underlying pathology of PVS. It is now known that thirst can be
experienced even after serious damage to the cortex.
Families have even been accused of "selfishness" in refusing to agree
to withdrawal of nutrition and fluids. Other cases are alleged to be more
deserving of NHS funds (British Medical Journal Vol. 306, 12 June 1993, pp.
1602-3).
The ALERT Carers' Group believes, on the contrary, that the most helpless
patients are the ones with the greatest claim on society's care. To classify a
patient as unworthy of life is to fight against medical and nursing tradition,
and to attack human solidarity.
Relatives who resist pressure to consent to death by dehydration for members of
their families are not "selfish"; without such people society would
fall apart. They need the support of us all. WHEN HUMAN LIFE IS WEIGHED BY THE
£, WE ARE ALL THE LOSERS.
James Rogers suffered
severe brain damage in a road accident on New Year's Day 1987 and was diagnosed
as "P.V.S.". He is now cared for at home.
The House of Lords Select Committee on Medical Ethics quoted from Anne Rogers'
letter in their Report in 1994 (Appendix 2):
"It will be a very sad day when this country admits that It Is so impoverished financially and morally as to have to deny the sanctity of life to some of its people."
For six years Mrs. Lilian Sallery fought to get specialist treatment for her daughter Marian, who was found one morning in a coma. A doctor diagnosed "Persistent Vegetative State" with no hope of improvement. At last Marian was sent to the Royal Hospital and Home, Putney, for rehabilitation. Mrs. Sallery says, "She went to Putney in an ambulance on a stretcher, and returned sitting up in a wheelchair on the train." Her parents then heard of the Leonard Cheshire Home in Colwyn Bay where each case is treated as a challenge. There she led an interesting and happy life until her sad death in November 1994. Following an autopsy it was stated at the inquest that Marian had not been in a P.V.S. She had been aware of all that went on.
The Judgment of the
Law Lords in the case of Tony Bland, on 4th February 1993, changed British law
on homicide. It is now legal for doctors to withdraw assisted feeding from
certain patients who cannot communicate and cannot easily swallow, in order to
cause their death.
The British Medical Association supports planned death if a patient has been
considered to be in a "Persistent Vegeta6ve State" for more than a
year. For the time being, until "a body of practice has been built
up", each case has to be brought to court, but orders are now given to
prevent publication of the name of the patient or of the Health Authority
involved.
Gary Waller M.P. in a Ten-Minute Rule debate won overwhelming support from the House of Commons on March 23rd 1994 for his Withdrawal of Medical Treatment Bill aimed to prevent withdrawal of food and fluids with the object of causing death. But the Bill had no time to complete all its stages.
A Practice Note was issued by
the Office of the Official Solicitor in March 1994 giving instructions on how to
apply to the High Court for permission to withdraw food and fluid from "P.V.S."
patients. After the nine cases which subsequently came to court, the patients
were caused to die of dehydration.
A report on "Thirst in relation to withdrawal of hydration" was
published by Dr. Peter McCullagh, MD, DPhil, MRCP (Senior Fellow at the John
Curtin School of Medical Research, Australian National University), in CMQ
February 1996. He noted that studies of neuro-transmitter pathways and
observations of patients have shown that the neurological centre for thirst is
located in the hypothalamus. "Sensation of thirst can be demonstrated to
persist despite very severe damage to other parts of the brain, for example
decortication."
In March 1996 a Working Group of the Royal College of Physicians on "P.V.S."
stated that "The most important role of the practitioner in making the
diagnosis is to ensure that the patient is not sentient, and, in this respect,
the views of the nursing staff, relatives and carers are of considerable
importance and help."
In July 1996 a revised Practice Note was issued by the Official Solicitor,
quoting this, but declaring:
"The views of the next-of-kin or of others close to the patient cannot act as a veto to an application."
Clare Dyer, Legal Correspondent of The
Guardian reported on March 19th 1996 that "A man who for seven years was
thought to be in the same permanent unconscious state as the "right to
die" Hillsborough victim Tony Bland, has become aware of his surroundings
and is communicating with hospital staff.
"At one time the health authority then caring for the man in the north of
England discussed asking the High Court to approve the withdrawal of the
artificial feeding keeping him alive. But his wife was implacably opposed . .
."
The Royal Hospital for Neuro-Disability in Putney has enabled many other
patients labelled "vegetative" to overcome their difficulty in
communicating. New treatments have also been developed in Germany.
A report by Dr. Keith Andrews and his team at Putney was published in the
British Medical Journal on 6th July 1996 describing 40 cases referred to him as
being "PVS" of which 15 had been misdiagnosed.
On 9th July, 1996, another brain damaged man was consigned to death by
dehydration in the High Court, names and identifying details as usual being
withheld. The Guardian on 10th November reported that a further case was in the
pipeline, in which the patient was admittedly not in a "PVS".
Since the case of Tony Bland, and the case of Janet Johnston, the test case in Scotland, there has always been a court order to forbid publication of the name of the patient or of the Health Authority involved. Relatives in future cases who might try to overcome this ban might be in contempt of court, depending on the terms of the court's order and to whom it was directed; a newspaper certainly would be. But there is no ban on publishing the facts of the case as known to the family, without naming them or the hospital, or giving any clue to their identity.
The ALERT Carers' Group was started by six women who are or have been carers for family members with a long-term illness or disability, and who believe it is inhumane to end patients' lives by starvation and dehydration. Members of the Group met in hospitals with their relatives, or came together through ALERT, which is opposed to any actions which are intended to end the lives of patients. They are campaigning for a new law to protect patients who cannot speak for themselves, and to prevent families being put under pressure to agree to withdrawal of food and fluids for financial reasons.
MEMBERSHIP APPLICATION
To ALERT Carers' Group, c/o ALERT, 27 Walpole Street, London
SW3 4QS.
I am/have been a carer for someone with a serious illness or disability. I agree
that the people with the greatest claim on our help are those who cannot help
themselves. Please add my name to your list of supporters.
Name ................................................................................................ Address .............................................................................................
IF
WE CAN HELP, CONTACT THE ALERT CARERS' GROUP. We can give advice based on
experience.
c/o ALERT, 27 Walpole Street, London SW3 4Q5. Tel: 020 7730 2800 Fax: 020 7730
0818