Euthanasia has come to mean an act to end a person’s life.
So far, in this country, discussion has referred to “voluntary
euthanasia”. The term “passive euthanasia” is sometimes used to
refer to a decision that a patient in extremis should not be subjected
to troublesome treatments which cannot restore him to health,
but this term is confusing and is better not used.
Two bills to legalise euthanasia, either at a patient’s current
request or in response to a form completed and witnessed in the
past, were debated in the House of Lords in 1936 and in 1969.
These bills and Baroness Wootton’s Incurable Patients Bill of
1976 were all defeated. Each attempted to introduce safeguards
against pressure and abuse. But Lord Raglan, the proposer of one
of these bills, has since said that “it may well be an insuperable
problem to draw up a suitable declaration”. This is different
from “advance declarations” that may be made, asking that inappropriate,
life prolonging methods not be used in the case of incurable illness.
They may help to clarify an unconscious patient’s wishes for both
family and doctor.
I believe there is no way in which the few who would wish for
euthanasia or instruction on how to kill themselves can be offered
a “quick way out” without society bringing pressures, conscious
and unconscious, upon the many who are vulnerable. As one elderly
woman wrote to The Times: “human nature being what it is, euthanasia
would not remain voluntary for long”.
Once there is no need to live, all too soon will people believe
that they have no right to live, with all the demands that their
living may make upon others. Many will come to feel that they
are burdens and that their family and society are expecting this:
“pressure, not freedom would be the result”, as a disabled patient
typed for me on his Possum apparatus. When someone asks for euthanasia
or turns to suicide, I believe in almost every case someone, or
society as a whole, has failed that person. To suggest that such
an act should be legalised is to offer a negative and dangerous
answer to problems which should be solved by better means. While
I would never judge someone who found his own situation so intolerable
that he took his own life, I would certainly judge anyone who
encouraged him to do so. I believe that the Christian answer is
to work for better respect and good care and I think this would
be true for all other religions.
Natural Reaction
The natural human reaction to seeing someone about to jump off
a bridge is to stop him and find out what help can be given. Some
85% of those resuscitated after a suicide attempt are in fact
glad to be alive after all. The few patients who are admitted
to St. Christopher’s Hospice after such attempts are also glad
to live their lives out after all once suffering is relieved.
The work of all of us, professionals and public alike, is surely
to recognise that such desperation exists and to offer all the
help we can to ease it.
Countless hospice patients have used well the time they would
have lost had they had their lives ended before the disease finally
took its course.
One of the most constructive ways in which we can help is to
deal with some of the common misapprehensions which generate fear.
Terminal pain is inevitable and cannot be controlled. Nearly
half the patients who die of cancer have little or no pain. If
it does occur, it can be controlled while the patient remains
active and alert. This most dreaded symptom and others that may
accompany any deteriorating illness can be relieved, not only
in special units but also in general hospitals and in the patient’s
own home.
The experience of the past 30 years has shown that much of the
teaching about such treatment has been inadequate, but this is
being remedied. Where patients still suffer unrelieved pain, as
various articles and phone-ins have described, those treating
them have failed to keep pace with the now well documented advances
in treatment.
Opiate drugs, especially oral morphine solution, have been shown
to be safe and flexible and, used properly along with specific
treatment where indicated, can control the terminal pain of cancer
and other diseases. These drugs can remain effective for months.
Doses do not inevitably escalate and drugs can easily be withdrawn
if pain is controlled by other means. If people are unhappy about
their use they should look at the literature that is available
or ask nurses or doctors at the nearest hospice or pain clinic
team.
Only rarely will large doses be needed, but each patient has
his own, sometimes changing, optimum dose. That so many patients
still suffer unrelieved pain is inexcusable and is more often
due to lack of knowledge and prejudice than lack of staff and
money.
Doctors have an automatic commitment to active treatment.
The treatment of the symptoms of terminal disease is just as much
a form of treatment as active therapy aimed at cure and palliative
therapy aimed at the control of persistent disease. A doctor’s
commitment is to treat his patient in whatever way is appropriate.
When a patient is near death, a doctor is not obliged to embark
upon or continue heroic treatment which has no prospect of benefit,
such as using a respirator when a patient with motor neurone disease
can no longer breathe for himself. The former Archbishop of Canterbury,
Lord Coggan, expressed his support for this principle in 1978.
A lawyer in this field takes the view that it is also a legal
principle, saying that a doctor who continued treatment past this
point would be behaving unethically if not unlawfully. The recent
Report on Euthanasia from the British Medical Association repeats
this from the doctors’ point of view. Codes of practice, such
as the report of the Medical Royal Colleges on brain death and
the discussion document of the Royal College of Nursing, both
1976, give authoritative guidelines.
Involvement
It is good that these things are discussed and the public and
patient involvement have increased. We need such discussions if
we are to make the best practice available to all. It is sad that
after all these years the best argument the members of the Voluntary
Euthanasia Society put forward for legalising euthanasia is the
unnecessary suffering of far too many patients. But let us not
stop talking. Both sides in the debate have a vendetta against
pointless pain and impersonal indignity although our solutions
are different. The present practice of a doctor killing a patient
at their considered request in the Netherlands, which does not
yet have the force of law, seems to me to present as many problems
as it solves, particularly in the fears and pressures already
reported among old people.
All who reach old age are likely to endure a long period
of dependence and possibly dementia. Many people are haunted
by the thought of a prolonged deterioration of their faculties.
This is by no means inevitable: less than 10% of the old people
in this country are in institutions and only 20% of those over
80 have a serious brain failure (1981 figures). Some slowing occurs
as age advances, but there would be far fewer devastating losses
if people did not consider this inevitable and would bring the
elderly to their doctors at an early stage.
Many church and neighbourhood groups have formed small community
voluntary organisations to help the elderly. A recent survey has
shown how much such interest is growing. The best way to live
on is to remain as active as possible and to receive the respect
of others; the worst way is to be told continually how sad and
undignified old age can be and how we should be free to ask to
be rid of it.
There is no way in which the country can afford good terminal
care for all. Our ignorance and mistaken ideas are often
to blame. In all branches of medicine and nursing we know that
accurate assessment of a problem and effective treatment take
far less time in the long run than haphazard or inept care. Although
the percentage of the population who die in hospital continues
to rise, most people spend longer at home during their entire
terminal illness. Being at home for as long as possible is the
choice for most patients and their families.
Hospice care is expensive in staff at the bedside, but low in
overhead costs and in all other areas. The cost per in-patient
week has been shown to vary between 50% and 70% of the cost in
teaching and general hospitals. Most new hospices (or continuing
care units or homes) emphasise the development of a home care
programme as an integral part of their operation and most of the
recent groups are starting with this alone. Most of the 120 or
so in-patient hospice units have a Home Care outreach and some
500 nurses in all are working as specialists alongside the regular
community services.
Hospices will only help directly a tiny fraction of those who
are dying, but that is not their only or prime purpose. “They
have two other very important roles — researching and teaching
. . . (they) have advanced greatly the clinical pharmacology of
terminal care. They really do, for instance, relieve physical
pain in nearly all their patients. They use the same science and
skill to help people to die peacefully that we surgeons use to
preserve life in the operating theatre and intensive care unit.
The teaching role of these hospices is very important, because
the principles which they have developed can and must be applied
in general hospitals and in people’s own homes. If we take the
trouble to learn what the experts have to teach, most of us would
do far more than we do now to help our parents, when the time
comes, to die in peace, confident that we will care for them to
the end” (From a surgeon).
Most of us will take courage and struggle against adversity if
we receive help and concern. If care gives a sense of personal
worth to the end, living through this part of life brings reconciliations
and achievements and families live on afterwards without the crippling
questions and regrets that so often follow suicide and would,
I feel, follow euthanasia. None of those who choose a quick way
out can have a law to establish their right to it without undermining
confidence and care for countless others. We all honour Captain
Oates for walking out of the tent into the Antarctic storm to
his death to save his friends, but those in the tent never suggested
to him that he do so. I believe that to make voluntary euthanasia
or assisted suicide lawful would be an irresponsible act, hindering
help, pressurising the vulnerable and abrogating our true respect
and responsibility to the frail, the old and the dying. But those
of us who oppose such legislation have a responsibility to work
so that no one should reach that desperate place in which he is
driven to ask for it. This has been a Christian commitment down
the ages and many of the present-day hospice teams work from the
same foundation and, as always, welcome all who come.
Since this article was first written the Hospice attitudes
and skills have spread widely, both in the United Kingdom and
in many countries overseas. The approach is also being interpreted
in other areas of need, such as AIDS, and in general health services.
Case Studies
A series of pictures painted by St. Christopher’s patients illustrate
how they saw their terminal pain. They show the feeling of being
impaled by a red-hot iron, of being totally isolated from the
world by the encircling muscles of tension, the sudden jab on
movement, the implacable heaviness of pain, the conviction that
one is a kind of scrap heap, the endless questions “Why’?” and
the fears of a lonely, threatening journey.
One woman, with a year’s history of unrelenting pain from a carcinoma
of the pancreas, drew it as a small rodent boring into the side
of a tree trunk. A few traces of green at the top were described
to me as, “My life, trying to get through”. She was in St. Christopher’s
for 11 weeks and a friend wrote to me after her death:
It was nothing short of a miracle. When I last visited her in
a previous hospital she was like a demented animal — consumed
with pain, incoherent of speech, and quite vicious. I was very
frightened, not knowing how to cope, and felt unable to face another
visit. Words cannot describe my reaction when I saw her in St.
Christopher’s — restored to the dignity of a calm, rational human
being again . . . From then on I was able to remain with her for
hours at a time, instead of minutes, holding conversation and
discussing things of interest dear to her heart. . . By doing
so I, too, have gained in spiritual strength. I can only thank
you for making my friend’s last days bearable when once they were
unendurable.
Vital signs in a ward specialising in the control of terminal
pain include the hand steady enough to draw, the mind alert enough
to write poems and to play cards, and above all the spirit to
enjoy the family visits and spend the last weekends at home.
Mrs. T.
Mrs. T., a woman of 47 years, married with three children (the
youngest of whom was six years) was operated on for cancer of
the bowel. She was not told her diagnosis, though her husband
was fully informed. Eighteen months later, having been reasonably
well, she developed signs of a recurrence of the disease and was
treated with radiotherapy. The treatment gave no relief and within
a few months she was very ill with constant severe pain and vomiting.
At about this time the husband told his wife that she was not
going to get better. Her despair and hopelessness were complete,
she turned her face to the wall and refused to eat, for, as she
said, ‘What is the point?’ She made an abortive attempt to take
her own life. With this effort to end her life two of her sisters,
who could not bear to see her suffering, were in sympathy. They
therefore suggested to the husband that, as there were sufficient
drugs in the house, they should combine them all and give them
to the patient to ‘end it all’ and put her out of her misery.
However, they disagreed and finally decided against this desperate
plan.
At this moment help came in the form of skilled and understanding
medical and nursing care. With proper drugs her pain and vomiting
were almost entirely controlled. She remained alert and able to
take stock of her situation, to voice her fears and discuss her
problems. With her symptoms relieved she began to take a pride
in her appearance again and to eat. For nearly twelve months more
this woman led a nearly normal life with her family. She went
out, did the shopping, visited friends. Eleven months later she
had to be admitted to a hospital where for a brief four weeks
she slipped quietly downhill, dying tranquilly after only twenty-four
hours of coma.
Looking back, her husband is able to say that during that last
bonus year of her life she not only enjoyed life, but gave her
children the opportunity and the time to come to terms with the
knowledge that she was going to die. Once her pain was relieved
she never again asked for her life to be ended but, as she was
dying, she repeated more than once with real satisfaction, ‘At
least the children are a year older’. Had the attempt at suicide
been successful, these children would undoubtedly have been deeply
shock- ed. As it was they “took it all in their stride” (to quote
their father), and there have been no traumatic effects beyond
the normal grieving.
Discussion
It is likely that decisions regarding active steps to kill a
patient will involve the whole family. In this case during the
period of desperation some members of the family held conflicting
views as to what was right. It is easy to picture the divisions
and difficulties which would have arisen had the action they considered
been taken.
It takes time to assimilate a painful truth or to reorganise
both thinking and living in a changed set of circumstances. “It
takes a long time to know what it means to be a widow; it takes
a long time to prepare oneself to die”. This is part of the pain
of bereavement. Sudden deaths are frequently followed by marked
distress and feelings of guilt and self-reproach and are often
more difficult for the survivors to come to terms with than bereavement
after expected deaths. Suicide may lead to particularly intractable
problems for those left behind.
Mrs. T. required strong analgesics, including narcotic drugs,
over many months. They neither lost their effectiveness nor damped
her strong personality. Their skilled use enabled her to live
an active life until shortly before her death. They did much to
give her and her family the extra time they all needed. Her husband
was taught by the doctor and nurses in an out-patient and domiciliary
department of a hospice to regulate the dose of her medication
according to her needs which might change from day to day. Because
of this careful assessment she never required any substantial
increase in dose, and her husband had a great sense of achievement
in helping her in this way.
Miss W.
Miss W. was transferred from the hospital which had recently
treated her carcinoma of the thyroid and had given her a course
of radiotherapy and radioactive iodine to bony secondaries. She
had an infected ulcer on her right ankle which caused her some
pain. During a conversation nearly two months after her admission
she said to one of the doctors, “Of course I believe in euthanasia”.
On being asked, “Supposing for the sake of argument you could
have it, do you want it now?” She replied, “Good gracious, no!”
A longer discussion followed. Her thesis was that she did not
believe in suffering either for herself or for others, but she
did not consider that she was then suffering sufficiently to ask
for her life to be ended. She was prepared to continue living
even though she found the restricted bed-ridden situation difficult
to bear. Her ankle became more painful during the next few days
and she became extremely apprehensive, fearing that any movement
was going to hurt her. This fear greatly exacerbated the physical
pain. While attempting to relieve her fears the doctor deliberately
discussed euthanasia with her again. To the question, “We were
talking about euthanasia some time ago; would you want it now?”
she replied as quickly and as spontaneously as before, “No — I
leave things to you”. She was given enough medication to ease
her apprehension and to control her physical pain and became quiet
and peaceful, dying about a week later.
Discussion
Requests for euthanasia must not always be taken at their face
value, and it is important that the underlying meaning of such
demands should be identified. Here it seems to have been a plea
for the relief of pain and anxiety. Miss W. had no further need
to ask for euthanasia once this relief had been given. Doctors
working in this field find that they receive such requests from
time to time and that, once the real question has been disentangled
from what is often a somewhat confused story, there is rarely
a further request. The crucial problem has been dealt with. In
this case it was the doctor, not the patient, who initiated the
return to the subject. By this time, however, Miss W., reassured
that relief could and would be given to her, did not need to pursue
it further.
Even those who think through their feelings on this subject and
seriously plan such a request when they are well, are seldom consistent
when they are ill. They may have full insight into their condition,
as did Miss W., and still postpone a final decision. It seems
fair to say that, for many who are in favour of euthanasia, a
final demand remains something that is for another time, or for
someone else in some hypothetical situation. For example, another
patient, on being asked whether she “wanted it now” replied, “Oh,
no; only if things get worse”. She died quietly only a few days
later without mentioning the subject again. Miss W. needed skilled
treatment for the control of her pain. The end of the story might
well have been different if she had been allowed to suffer continuous
pain or the continued expectation of pain. Once again, the need
is clear for teaching and experience in this field as part of
general medical and nursing education.
Incidence and Magnitude of Pain
The following related case histories describe the pain suffered
by three patients and illustrate their general management and
the individual achievements and family reconcilliations that were
made possible:
Case 1: Mr. John G., aged 61, a self-employed
retailer of wine-making supplies, came to St. Christopher’s Hospice
with a history from his doctor of 18 months of severe spinal pain
from a carcinoma of bronchus unrelieved by laminectomy, radiotherapy
and increasing doses of morphine and chlorpromazine. He knew that
he was terminally ill, and both he and his family were feeling
exhausted and bitter after months of obviously intense suffering.
His drugs were not altered for the first 48 hours because he began
to respond immediately to the atmosphere of security and friendly
activity in the ward.
After a few days a combination of anti-inflammatory drugs (prednisolone
and phenylbutazone) produced a dramatic change in pain and mood.
The four-hourly dose of oral morphine was reduced from 150 mg
to 120 mg, where it remained. Mr. G. took part fully in the life
of the ward: he organised the raffle of a toy made by his sister
and began occupational therapy. Two weeks later he was less well
and was often drowsy and occasionally somewhat confused, but he
continued to enjoy frequent visits from his family and visits
to the Hospice Bar. He was entirely clear-headed when he sent
for his family and announced to them that he did not think he
would be alive the next day. He handed over his raffle to another
patient, and had farewell drinks with his family before he lapsed
into unconsciousness and died peacefully thirty-six hours after
he had called them in. After his death his wife wrote to the ward:
“I thank you from the bottom of my heart for the kindness, compassion
and caring which you gave to my dear husband. The last month of
his life was an unexpected bonus, which turned out to be pain-free,
care-free and restored his faith — I would add — mine also. I
will never forget. God bless you all”.
His sister wrote to me:
“. . . Please find money order. My wreath of flowers to my dear
brother, John. He had all his wreaths of flowers while at St.
Christopher’s through the very great kindness shown by the doctors
and staff, so I feel that money is more beneficient than flowers.
I experienced something wonderful during the month I visited John.
Three men who had never met before got together as brothers. I
used to call them the three Js, two Johns and a Joseph: They worked
together side by side, helping each other and Joe sat by my brother’s
bed the whole day he was dying, fetching cloths as he needed them
and talking to him.
Something else I witnessed that day also. During the early evening
I saw John look straight ahead on two occasions and give the most
wonderful smile; there was no one at the foot of the bed or opposite,
for John H. had passed on a few hours before If it hadn’t been
for St. Christopher’s our family would never have had this last
happy month together with our loved one. Now the three Js have
gone together in peace. May God bless your Christian belief and
work always”.
Now the three Js have gone together in peace. May God bless your
Christian belief and work always”.
Case 2: Mr. John H., an accountant aged 56,
was admitted a week after Mr. G. and died the day before him.
His pain had also been persistent and poorly controlled ever since
a laparotomy and colostomy had been performed six months before.
At the time he was admitted neither dihydrocodeine by mouth more
or less regularly nor pethidine by injection three times daily
were relieving it. He was still hopeful that something might be
done to close the colostomy. He also said he felt better after
he was welcomed into the ward community, but he never talked much
about his illness. His unsatisfactory medication was immediately
altered to a morphine mist every four hours with prochlorperazine
by day (5 mg) and chlorpromazine at night (25 mg). The dose of
morphine alternated between 20 and 30 mg during his three-week
stay as his pain occasionally broke through the constant level
of control. During this time five injections of diamorphine (5
to 10 mg) were given with the phenothothazine because of episodes
of vomiting. He needed one injection of diamorphine 20 mg during
the afternoon he died.
Mr. H. was able to complete some accountancy a few days after
his admission; he joined his friends with occupational therapy
and entertained his large family who came with him to Chapel and
to other Hospice functions. Four days before he died he was still
working, he celebrated his wedding anniversary with his family
and came with Mr. G. and Mr. C. to the Hospice Pilgrim Club evening.
His family spent his last day at his side, and nine of them were
present as he died. A staff nurse said prayers with them all (a
St. Christopher’s custom which is practically never refused by
the family). Several of Mr. H.’s family came back to the Chapel
for the Sunday morning service two days later.
His wife wrote to me: “For me, he kept a diary. . . All my
prayers were answered after my husband entered your hospice. He
was completely without hope, yet he recovered to such an extent
that he was able to enjoy happiness, friendship and love for his
fellow man”.
Case 3: Mr. Joseph C., aged 68, a retired painter
and decorator, was admitted to St. Christopher’s Hospice with
a history of several months’s severe, left-sided and back pain
from a metastatic carcinoma of kidney. He was loath to admit how
much he had suffered during the months when he had been in and
out of a local hospital until we had demonstrated that we could
relieve his pain while he still remained active and alert. He
was given a mist morphine 20 mg with prochlorpromazine 5 mg every
four hours with almost complete pain control and, as he later
told us, his first night’s sleep for months. After forty-eight
hours he allowed us to increase his dose of morphine, and it remained
at 30 mg until his death four weeks later. He also was given prednisolone
5 mg and indomethacin 25 mg q.d.s. Soon after admission Mr. C.
became active, performing surprisingly vigorous physio- and occupational
therapy and completing a large number of mosaic trays. After two
weeks he recorded a television interview for a National network
in which he said that he felt that he and the Hospice were fighting
his advanced cancer together, that he now no longer even thought
of pain and hoped to have a little more life ahead.
As his two friends began to fail, he took charge of Mr. G.’s
raffle, completed Mr. H.’s last mosaic tray and sat and talked
with them and their families throughout their last day. He himself
developed a chest infection during the last twelve hours in which
his two friends died, and he was very upset and grieved together
with the staff at their loss. His condition deteriorated rapidly
from then on; but his usual medication, now given by injection,
controlled all physical distress, and he died peacefully in the
middle of the night with his wife and her sister at his side.
He had been in the Hospice for five weeks.
One of his friends wrote to me:
“In the early hours of this morning my friend Joe C.’s
earthly sojourn ended. Joe was a down-to-earth man, a heart
of gold, a comedian and often a ‘gor blimey’ bloke. Please,
will you and your ministering angels accept my heart-felt, thanks
for making the evening of his life a happy event, I repeat,
A Very Happy Event. If there is another world, then Joe was
living to go to it, an example I shall keep to the end — or
my beginning”.
These three men had a quiet, rather ill companion in their four-bed
bay. Mr. M. watched their activities in a somewhat detached manner.
He spoke little but obviously felt drawn to some extent into the
ward ‘Club’. He had expected the first two deaths but was more
shocked when Mr. C. also died. He told us that he missed them,
but he was able to welcome two new patients with his usual quietness
and at present is considerably better than on admission. All three
families called back to see him.
(1) the importance of morale and sympathetic understanding in
a unit devoted to the care of dying people cannot be over-emphasised,
and added to this major contribution to their psychologic comfort
may be an enhanced subjective effect of drugs. In assessing pharmacological
efficacy in these circumstances the group effect should be considered.
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