Memorandum by Colin Harte
1. INTRODUCTION
1.1 I have been a full-time carer of a severely
disabled woman, Alison Davis, since 1989 (having known her from
1987). For the first six of those years (1989-95) Alison had a
persistent wish to die, and she had had a persistent wish to die
for some years before that (since 1985). Before I started to care
for her she had attempted to end her life on several occasions.
Some of the attempts were serious, as a result of which she was
hospitalised and recovered only because she was treated, against
her will, after she lost consciousness. Alison has written her
own submission to the Select Committee on behalf of the group
No Less Human and I am mentioning her in my submission with her
consent. I am thankful that legislation like the Assisted Dying
for the Terminally Ill Bill, or the Dutch euthanasia law, did
not exist during the period 1985-95. Alison would have qualified
for euthanasia, would have requested it, and her wish would have
been granted and she would now be dead. Alison is also grateful
now that she did not then have the opportunity to choose death.
In this submission I will comment on the difficulties that a law
allowing euthanasia would pose for family members or carers of
terminally ill/disabled people.
1.2 In this submission I shall avoid the
euphemism "assisted dying" and use the more appropriate
term "euthanasia." By euthanasia I mean an act or an
omission which of itself and/or by intention causes death (ie,
kills someone) with an aim of ending a life that is regarded as
burdensome either for the person concerned or someone else.
1.3 The title of the Assisted Dying for
the Terminallly Ill Bill is misleading because good health care
(eg, as found in hospices) provides a legitimate assistance in
dying which does not involve euthanasia. Also, the definition
of "assisted dying" in the Bill includes the situation
in which a physician is not in fact "assisting" but
is actually "ending the patient's life" (Clause 1.2).
1.4 The Bill is further misleading in claiming
that it will "make provision for a person suffering from
a terminal illness to receive pain relief medication." In
fact, the Bill makes no provision for pain relief medication that
is not already available. The inclusion of such a "provision"
in the Bill—which is even mentioned in its long title—would
seem to serve no purpose but to deceive.
2. THE FOCUS
ON "TERMINAL
ILLNESS"
2.1 The Assisted Dying for the Terminally
Ill Bill [2004] differs from its predecessor, the Patient (Assisted
Dying) Bill [2003], insofar as it would allow euthanasia for those
who are "terminally ill" but not for those who have
a "serious and progressive physical illness." It might
be claimed that the 2004 Bill refers to those who are "terminally
ill" but not to those generally regarded as "disabled,"
and thus should not encounter objections from groups run by disabled
people who have been particularly opposed to euthanasia. Disability
groups would be right to continue to object to the Bill insofar
as those "terminally ill" patients to whom it might
apply can rightly be regarded as disabled as a result of their
illness.
2.2 Because my submission will refer to
my association with Alison Davis I think it is important to explain
that her situation, whilst more obviously applicable to the 2003
Bill and a law like the current Dutch euthanasia law, is also
applicable to the 2004 Bill. In the mid-1980s, it was believed
that she did not have long to live. Her physical suffering (intense
pain which caused her to lose consciousness and vision for long
periods, difficulty breathing, etc) was such that I certainly
did not think she could have long to live, and this was also medical
opinion. Medicine is not an exact science, and it causes little
surprise to hear of individuals given two months to live with
a terminal illness, living for a further two years.[109]
I was called to the bedside of a dying friend in December 2002;
she is still alive. The concept of "terminally ill"
is vague and there is, of course, no way of knowing for how long
patients might have lived if they had not been killed under an
Assisted Dying type law. The 2004 Bill does not say how close
to dying a patient must be to qualify for euthanasia—and
of course this is a judgment that is impossible to make; the
Bill merely says that the patient's illness "must be likely
to result in the patient's death within a few months at most."
The word "likely" is as nebulous as the whole criteria
for allowing euthanasia under the 2004 Bill. Doctors who thought
from 1985 that Alison was "likely" to die in a few months
would not have been proven wrong if Alison had been granted euthanasia
(as she wanted) at that time. The same applies to anyone else
killed under a euthanasia law. If the patient is killed the doctors
can never be proven wrong. This makes Alison's story particularly
pertinent to discussions about euthanasia.
2.3 Although the 2004 Bill refers to the
"terminally ill" and not to those with a "serious
and progressive physical illness," a law allowing euthanasia
for the former will, as a matter of logic, soon be changed to
allow (or, in spite of the so-called "strict safeguards",
will be interpreted in practice as allowing) it for the latter.
The 2004 Bill is clearly a product of the Voluntary Euthanasia
Society's carefully orchestrated campaign in recent years, by
which it has abandoned the public expression of some of its policies
not because they are deemed wrong in principle, but because they
seem politically inexpedient (notably, in view of the opposition
of disability-rights groups to euthanasia; see 2.1 above). It
would seem that the promoters of the 2004 Bill are not aiming
to allow euthanasia for all the people they believe should qualify
for it. They are, rather, aiming to establish as a principle
the legality of euthanasia, but the focus on the terminally
ill is in fact unprincipled. Barbara Smoker, Former Chair of the
VES, made the VES's position clear in its own newsletter, emphasizing
that those who are not terminally ill may, in the VES' view, be
better qualified for euthanasia.
Why should the question of terminality be regarded
as a relevant criterion at all? Indeed, provided pain is adequately
controlled, the terminally ill patient is less likely to need
euthanasia than someone whose equally distressing illness or disability
is not terminal, since the latter could face many years of suffering.
The two most important criteria are surely the intolerable nature
of the condition and its incurability—the proper question
being whether an intolerable condition is apparently incurable,
not whether it is terminal.[110]
Euthanasia of those who are terminally ill may
result in the loss of days, weeks, months or even years that could
have been spent purposefully in spite of—or maybe because
of—the difficulties faced by the individual.[111]
I am as opposed to euthanasia of those who are terminally ill
as I am to euthanasia of disabled people who are not terminally
ill. Although the Bill may appear to affect only the former, I
believe it will inevitably also affect the latter.
3. THE DYNAMICS
OF A
CHANGE IN
THE LAW
ON EUTHANASIA
3.1 I would like the Committee to consider
how a change in the law to allow euthanasia will inevitably influence
an individual's thoughts about ending his or her life, and how
the role of family members and carers (as well as others involved
like nurses and doctors) would inevitably change if the law were
to allow euthanasia.
3.2 In 1989, when Alison wanted to die and
would have requested euthanasia were it available, I was assisted
by the knowledge that the law prohibited it. The legal prohibition
demonstrated that a higher value was attached to Alison's life
than to her death. If euthanasia is not an option, those associated
with someone who wants to die are able to act with the certainty
that there is a presumption in favour of life, and to encourage
the person who wants to die to find a purpose, meaning and value
to their life.
3.3 If euthanasia were an option, carers,
family members and others would live under a constant uncertainty
as to what is the best option for someone wanting to die. Instead
of being able to assure the person considering euthanasia that
their life does have a purpose, meaning and value, there would
be an uncertainty as to whether euthanasia would or would not
be a better option. Indeed, the encouragement that I gave to Alison
over many years—which eventually enabled her to see that
her life had a purpose and value—would be regarded as the
most intolerable cruelty in a situation where legal euthanasia
would allow her to be "put out of her misery."
3.4 If the Assisted Dying for the Terminally
Ill Bill had been enacted in the late 1980s Alison would have
qualified for euthanasia. The existence of such legislation would
mean that people like Alison were "right to choose death,"
whereas the only way of encouraging someone to positively re-evaluate
their life—as Alison did—is by convincing them that
their life does in fact have a value and purpose. And the chances
of doing this are greatly diminished if the law is simultaneously
telling them that their life does not have a value and purpose—and
that their situation is such that not only would they be "right
to choose death" but that the means to be killed will be
provided. Euthanasia legislation betrays vulnerable people insofar
as it reinforces negative attitudes towards their life and facilitates
their ending of it.
3.5 Alison has written about her personal
experience in her submission (on behalf of No Less Human) to the
Committee. In short, she wanted to die between 1985 and 1995.
Between 1985 and 1989 she made several serious attempts at ending
her life. Between 1990 and 1995 she wanted to die—she said
she would go to bed every night hoping not to wake up in the morning
but no longer attempted to end her life. During this period she
was able to discern ethical objections to euthanasia even though
she did not want to live herself. In August 1995 I accompanied
her to visit a small project set up to care for 35 disabled children
in India. On the night we left the project, Alison said to me
"I think I want to live" and noted that it was the first
time she had had such a thought for 10 years. She had "fallen
in love" with all the disabled children she had met and wanted
to do something to help them. She founded a charity Enable (Working
in India) [www.enable-india.org.uk] which has grown considerably
and now supports 350 disabled children, most of them in residential
centres built by the charity. Many of these children owe their
present happiness and future good prospects to the fact that Alison
was not killed under a euthanasia law in the 1980s. Since 1995,
Alison has continued to endure much suffering—in some respects
it is greater and she is becoming increasingly less able. What
has changed is an appreciation of her own life, and an awareness
that she can make a difference to others.
3.6 Although Alison's experience is particularly
dramatic, I am familiar with other instances in which people suffering,
near the end of their lives, were glad that a choice for death—which
might have been made were euthanasia available—had not been
made. A friend's wife died of cancer a few years ago. After her
death he told me that on several occasions during the last year
of her life she had said she could "no longer go on."
Yet, at several subsequent stages she would say, "I'm glad
I'm still here." If there were a euthanasia law carers (including
family members, nurses, etc) would be put under enormous pressure
if they heard patients saying they can "no longer go on."
As I mentioned earlier, it could be regarded as an intolerable
cruelty for them to encourage the person to persevere and, if
the law allowed euthanasia, carers might feel obliged to give
weight to the patient's expressions in favour of death and see
the path towards euthanasia as inevitable. This would in turn
reinforce the suffering person's view that death was an appropriate—desirable,
even "sensible"—option.
3.7 In fact, suffering people sometimes
need the freedom to say that their life is unbearable, that they
cannot go on, that they would prefer death, etc—and to know
that they will not be taken at their word. During the period in
the 1990s when Alison would not have chosen euthanasia even though
she persistently wanted to die, she would say such things. She
has frequently expressed her fear that if the law did allow euthanasia
she would not have the liberty of saying such things because,
if she did, she might be taken at her word. The dynamic of end-of-life
decisions is such that if euthanasia were legalized, terminally
ill people who might say such things—as they do now, more
as a cry for help than with the expectation of being taken at
their word—would find that family members and carers
might believe that they were inevitably heading down the path
towards choosing euthanasia, and the response by carers who anticipate
what seems inevitable would in turn further influence the suffering
person to choose euthanasia.
3.8 In short, if the law were to change
and allow euthanasia it would not be a simple matter of enabling
"choices" to be made. The factors involved in choosing
euthanasia are complex, and the very existence of a law allowing
euthanasia would tip the balance in favour of decisions to end
life. If euthanasia is not prohibited by law it will be regarded
as a legitimate—and hence acceptable and good—choice.
A change in the law inevitably means that being killed is regarded
as a legitimate option for suffering people, and this entails
that the continuation of life for the suffering person is not
regarded as having a value such that he or she should be protected
from lethal harm. Essentially, euthanasia laws indicate that a
negative value is attrributed to suffering people and this seems
to me—as someone who has a long experience of being with
someone who attached no value to her own life—as the ultimate
betrayal of suffering people.
4. A PARTICULAR
OBJECTION TO
VOLUNTARY EUTHANASIA
4.1 Some people have objected to the legalisation
of voluntary euthanasia not because they object to it in principle,
but because they believe it will inevitably lead to involuntary
euthanasia which they find objectionable. I believe they are right
to believe it will lead to involuntary euthanasia; the so-called
"strict safeguards" in place in Holland have been revealed
to be cosmetic and it is widely accepted that non-voluntary and
involuntary euthanasia takes place there. I believe it is a matter
of logic that voluntary euthanasia will always lead to non-voluntary
euthanasia,[112]
because if voluntary euthanasia is allowed it means that this
is regarded as a legitimate and good option. This being so, medical
practitioners will inevitably apply this option to patients who
have never requested it: the laws of logic would compel them to
apply it. This submission has, however, focused on voluntary
euthanasia. Although I do not think it is possible to say
that one form of euthanasia is "worse" than another,
I think there are particular objections to voluntary euthanasia.
4.2 The particular objection to voluntary
euthanasia is that it betrays suffering people who believe
death is preferable to life. The proper response to those who
want to end their life is to deter them and to present a positive
view of life. This is what ordinarily happens with able-bodied
people who want to die, and the work of the Samaritans is well
known and respected in this regard. With respect to the terminally
ill or disabled who want to die a different—very negative—judgment
is made about the value of their life.
4.3 Unless voluntary euthanasia were to
be made available for anyone who requested it—irrespective
of medical condition—then any law allowing it will ultimately
be based not on "choice" but on a negative value of
life with a terminal illness or disability. The fact is, however,
that whereas some people with a terminal illness or disability
may want to die, others may value their lives and not want to
die. This shows that the mere existence of terminal illness or
disability should not be regarded as an indicator that death is
preferable and that causing death is legitimate. Thus suicide/assisted
dying/euthanasia for those who are terminally ill or disabled
should not be regarded as distinct from the question of suicide
generally. The problem to be faced is that some people who are
terminally ill (or disabled) have lives that they perceive as
lacking meaning, purpose or value. Just as there is a public policy
against suicide for able-bodied people—as indicated by unanimous
support for the work of the Samarians—likewise there should
continue to be a public policy, upheld by the law, against suicide/euthanasia
for those who are terminally ill or disabled.
5. CONCLUSION
5.1 In this submission I have generally
avoided arguments that I believe are likely to be found in other
submissions. I have tried to indicate that a law allowing euthanasia
will inevitably undermine the value attached to the lives of those
deemed to qualify for it. This submission is written after many
years' experience of the very real difficulty of trying to support
someone who desperately wanted to die. I understand why euthanasia
may seem attractive, but believe support for euthanasia involves
a false compassion that reinforces the negativity felt by those
who feel life serves no more purpose. Given that not all terminally
ill or disabled people believe the continuation of life serves
no purpose, it is more appropriate to try to solve the problem
by trying to foster a better appreciation of life itself. A law
that allows people to be killed—even if it is at their request
and with their consent—as a means of overcoming their problems
with living is not only inappropriate; it is ultimately a betrayal
of the truth that their life has a value. The enactment of the
Assisted Dying Bill would be a betrayal of those who would avail
themselves of what it allows.
5.2 I urge the Committee to reject the Assisted
Dying bill.
2 September 2004
109 See, for example, the obituary of Laura
Branigan in The Times (2 September 2004). Back
110
Barbara Smoker, "Remember the Non-Terminally Ill and the
Disabled," Voluntary Euthanasia Society Newsletter (September
1991). Back
111
This is not to say that euthanasia is any more acceptable if the
person is apparently unconscious and thought to have no awareness
of or purpose in being alive. Back
112
In fact, the UK law has started with the legalization-in case
law-of non-voluntary euthanasia. The Bland judgment (1993)
that food and fluids need not be given to Tony Bland (who, with
continued sustenance, was expected to live for about 30 years)
is an example of non-voluntary euthanasia by omission. Since then
other people in a persistent non-responsive state have been similarly
killed with judicial approval. At the root of all decisions about
euthanasia-whether voluntary or non-voluntary-is a view that some
lives need not be, or should not be, protected. Instead of further
legalizing euthanasia, I recommend that Parliament overturn the
Bland judgment and ensure that those who are most vulnerable
are granted the protection of the law to which all should be entitled. Back
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