Examination of Witnesses (Questions 70
- 79)
THURSDAY 16 SEPTEMBER 2004
The Lord Joffe
Q70 Chairman: The purpose of
this public session is to enable Lord Joffe, as the proposer of
the Bill, to briefly explain its terms and then to give the members
of the committee a chance to explore these terms in such detail
as they think necessary. The precise terms of the Bill will be
what ultimately become law, assuming the Bill was passed into
law without any further amendment. Therefore, it is extremely
important to know exactly how it would work and what the different
provisions of the Bill are intended to achieve. Evidence will
be taken, a record of the evidence will be available and it will
be, as usual, subject to correction by the witness in so far as
the transcript does not appear to represent exactly what he thought
he had said.
Lord Joffe: Thank you, Lord Chairman. I appreciate
the opportunity to give evidence in relation to the Bill which
I introduced. I will begin by outlining the background to the
Bill in its present form and its purpose, and then go on to deal
with the detailed provisions. My starting point is to draw attention
to the recommendation of the Select Committee on Medical Ethics
in 1993-94. That was part of a much wider consideration of end-of-life
decisions and, amongst other issues, it advised against a change
to the law criminalising voluntary euthanasia. Since then, as
the Liaison Committee has pointed out, and I quote, "other
countries have introduced legislation and public opinion in the
United Kingdom has become more engaged in the issue". In
addition to the legislation in The Netherlands, in Belgium and
Oregon, motions proposing a change in the law are awaiting debate
in the French Assembly, and the new Spanish Government included
a commitment to change their law in their 2004 electoral programme.
It is now widely recognised that palliative care, of which the
Bill is totally supportive, is not the answer for a number of
terminally ill patients who, suffering terribly, wish to bring
their suffering to an end by being assisted to die with dignity
at a time of their choosing. The purpose of the Bill is to change
the law in order to allow such patients to have this option alongside—and
I emphasise alongside—all the other lawfully available end-of-life
options. The Bill is based on the principle of personal autonomy
and patient choice, the right of each individual to decide for
themselves how best he or she should lead their lives. The Bill
recognises that in the exercise of personal autonomy vulnerable
people should not be put at risk, and accordingly it contains
an array of safeguards to protect people who could be vulnerable.
I now briefly touch upon how the Bill reached
its present form. It started last year as the Patient (Assisted
Dying) Bill, which I will henceforth refer to as "the previous
Bill", which was introduced on 20 February 2003 and which
had its Second Reading on Friday 6 June of last year. At that
reading, which was attended by approximately 100 peers—on
a Friday, I might add—39 peers took part in the debate and
roughly equal numbers spoke in favour for and against the Bill.
In accordance with the usual convention, the Second Reading was
not opposed. However, following upon a proposal by Baroness Jay,
the House agreed to the appointment of a Select Committee to consider
the Bill and the Bill itself lapsed in November last year at the
end of the session. On 8 January of this year, the current Bill,
which is entitled the Assisted Dying for the Terminally Ill Bill,
and which I will henceforth refer to as "the Bill",
was introduced. It contained three substantive changes from the
previous Bill in response to concerns expressed at its Second
Reading. Firstly, whereas the previous Bill applied to all competent
adults who are suffering from a terminal or a serious and progressive
physical illness, the Bill is now limited to terminally ill patients
only. Secondly, responding to the reluctance of some physicians
to directly bring an end to their patient's life, the attending
physician may only provide the patient with the means to end the
patient's life, the obligation being, or rather the option being,
for the patient to decide whether to take these drugs or not as
he or she chooses. The only exception to this is where the patient
is physically unable to take the medication, in which event, as
in the case of Diane Pretty who suffered from Motor Neurone Disease,
the physician can actively end the patient's life. Thirdly, in
response to concerns about patients not being fully informed about
the benefit of palliative care, there is now a requirement for
a palliative care specialist to see the patient. This provision
illustrates the importance the Bill attaches to palliative care.
We would think that palliative care is the first option and assisted
dying would normally be the last resort option. The Bill had its
Second Reading on 10 March of this year and, with a view to avoiding
repeating the speeches made at the Second Reading of the previous
Bill last year, it was agreed by opponents of the Bill that they
would not oppose the Second Reading on the clear understanding
that their decision was made solely for the convenience of the
House and it was in no way to be considered as an endorsement
of the Bill. The Bill was then read a second time and committed
to this Select Committee.
Since then, two further important amendments
are proposed to the Bill, as will appear from the Notice of Amendment
to be moved in committee, which you will find in the plastic folder
in front of you. There are a number of amendments but only two
of real significance. The amendments are endorsed on the copy
of the Bill in the plastic folder. I do recognise that some members
of the Committee may have marked up their existing copy of the
Bill but I do not think in practice this will cause any real problems
because the amendments are very limited. The first amendment is
the deletion of Scotland from the Bill. I have been advised that
the issues contained in the Bill are devolved to the Scottish
Parliament and I understand that a motion for debate in that Parliament
to consider changing their law was moved last week. The second
amendment removed the obligation upon physicians who had a conscientious
objection to the Bill to refer patients who ask for assistance
to die to a physician who is willing to provide this assistance.
This amendment is necessary because the Joint Select Committee
on Human Rights in its Twelfth Report this year was of the opinion
that while, and I quote, "the safeguards in the current Bill
would be adequate to protect the interests and rights of vulnerable
patients", the existing requirement on conscientious objectors
contravenes the provisions of the European Convention on Human
Rights. In addition, there are a number of consequential amendments,
such as replacing the words "Great Britain" with "England
and Wales" and introducing a greater consistency in the terms
used in the Bill.
Before I turn to the Bill itself, I would like
to underline the following. The Bill is based on the principle
of personal autonomy, and central to it are the following. It
applies only to terminally ill, competent adults who are suffering
unbearably; it does not apply to children and it does not apply
to patients who are mentally incompetent. It is very limited generally
in its application. Secondly, it is the patient who must initiate
the request for assistance to die, not the physician, and no physician
or other member of the medical team is entitled to assist the
patient to die without the patient having initiated the request
and all the safeguards contained in the Bill having been complied
with. I emphasise this to the members of the Committee because,
among the large number of letters that I have received opposing
the Bill, there is total confusion as to what the Bill really
provides. Many of my letter-writers also think that the Bill is
the same as the Mental Capacity Bill, which has been introduced
in the House and has gone to another place. Thirdly, it is the
patient who must make an informed decision to die, which he can
revoke at any time. The role of the physician is limited to ensuring
that the safeguards and processes set in the Bill are complied
with; it is not for the physician to decide whether the patient
has made a wise or unwise decision nor to decide on the patient's
best interests or quality of life. Again, there is a considerable
misapprehension in the letters I have received, whose writers
think that the physician can unilaterally kill the patient. It
is nothing of the sort. In drafting the Bill, careful attention
has been given to the legislation and experience in Oregon in
particular and The Netherlands and Belgium. The result is that
the Bill is considerably more restrictive and has more safeguards
than any such legislation. It also contains many more safeguards
than other end-of-life practices which hasten death in the United
Kingdom, such as the withholding and withdrawal of life-prolonging
treatment.
I now turn to the detailed provisions of the
Bill. Could I start on page 1 of the Bill, without looking at
the first page? The preamble sets out what I think I have mentioned.
Again, it enables a competent adult who is suffering unbearably
as a result of terminal illness to request medical assistance
to die at his own considered and persistent request. Then there
is a further important issue raised in the Bill and that is to
make provision for a person suffering from a terminal illness
to receive pain relief medication. It has been suggested that
there is no connection between these two issues: assisted dying
and pain relief medication. I will submit that they are related
and it is natural to include them in the same Bill. If we then
go to section 1(1), that empowers the physician to assist a patient
who has made a declaration that he wishes to die, provided that
all the safeguards have been complied with. When we get to the
definition section I want to draw attention to a number of issues
that might possibly be missed. "Assisted dying" is clear
as is "attending physician" as well as competent. But
then, when you get to "consulting physician", we say
it means a consulting physician practising in the National Health
Service. We have deliberately included that because we do not
want a private practice to build up in relation to assisted dying,
where one or other consultant actually makes this the main service
that they offer patients. As one of the many safeguards in the
Bill, we have included the requirement for the consultant to practise
in the National Health Service. There is another point in the
same definition which again is a further safeguard; we require
the consulting physician to be independent of the attending physician.
That is in the last line of this definition. Again, this is because
we do not want partnerships to be developed in terms of which
the attending physician has an ongoing relationship with the particular
consultant to whom all patients are passed. The declaration is
clear and must be witnessed.
Then I come to what is really the key, the informed
decision. Here we repeat in the Bill all the factors which have
to be taken into account by both the doctor and the patient before
proceeding. We will come to these subsequently in the rest of
the Bill but the important point is that these all are defined
as part of the informed decision which the patient is required
to make. Moving down from what are self-evident definitions, we
get to the "qualifying patient" and that means a patient
who has reached the age of majority—which I have mentioned
before—and we add "who has been resident in England
and Wales for not less than 12 months as at the date of the declaration".
Again, this is to stop tourists coming to the United Kingdom to
avail themselves of this facility. We then define "terminal
illness", which has been very carefully defined and which
effectively is that the opinion of the consulting physician is
that the patient's death is likely, not certain but likely, to
take place within a few months at most. We then move on to "unbearable
suffering". Firstly, that means "suffering whether by
reason of pain or otherwise". We think, and much of the evidence
elsewhere suggests, that existential suffering is actually a far
greater issue than pain control. If the physician attending the
patient is competent, that can normally be controlled, although
not always. We make this definition. It is not an objective test.
It is not a test of what the average of all people would consider
to be unbearable suffering. It is very clearly defined as a subjective
test, and so the wording is "which the patient finds so severe
as to be unacceptable". That is actually the key to this
test. It is not what a doctor might say is the norm; it is that
particular patient's suffering which is the subject matter of
his decision. Then we have a "waiting period". There
has been some confusion, and I will clear that up in relation
to the waiting period. It is 14 days from the time when the patient
first informed the attending physician that the patient wishes
to be assisted to die. It is not 14 days from the date on which
the declaration is made. We thought very carefully about this
provision. We are concerned that, if there were so many steps,
and we have already included a surprising number of safeguards,
the patients will all have died before we get through them.
I next refer to the qualifying conditions, which
are key to the whole administration and implementation of the
Bill. The attending physician must have examined the patient and
the patient's medical records, and that is sub-section (b). That
reference to the patient's medical records is very important because
there will be a lot of information there which it is important
for the attending physician to consider. He has to make a determination
that the patient has a terminal illness at (c) and at (d) that
the patient is suffering unbearably as a result of that terminal
illness. Then we have to go on to a number of issues which must
be raised with the patient. He has to inform him of the diagnosis,
the prognosis, the process of being assisted to die and of the
alternatives, including, but not limited to, palliative care,
care in a hospice and the control of pain—all of these and
any others. It is only then, if a patient persists with his request,
that he or she is referred to the consulting physician. The consulting
physician has to go through the same process as the attending
physician all over again. This provision is somewhat unusual in
the NHS and in most areas of end of life decisions, but we require
a "consulting physician" as well. Then, at the end of
that process, if he is satisfied that the patient has complied,
that the patient has thought about everything and he is able to
make an informed decision, he asks him if he would like to complete
a written declaration. He tells the patient that it can be revoked
at any time. Then we get to clause 3, which is this offer of palliative
care, which is unique when compared to the countries in which
assisted dying is permitted. It was, in fact, recommended in Belgium
but not accepted by the legislators. Under this offer, the attending
physician has to ensure that a specialist in palliative care,
who could either be a physician or a nurse, has attended the patient
to discuss the option of palliative care. We then move on to the
declaration. The declaration is described in 4(1) and it can only
be completed after all these other processes—two consultations,
an offer of palliative care and, as I will touch on later, if
there is any doubt about competence—that the patient is
referred to a psychiatrist. After all this has happened, a written
declaration can be made in the form set out in the annex to the
Bill. This declaration has to be witnessed by a solicitor to whom
it must appear that the patient is of sound mind and that he has
made the declaration voluntarily and the solicitor has, in subclause
2 (3)(c), to satisfy himself that the patient understands the
effect of the declaration. An independent witness is referred
to in (4), and it must also appear to him that the patient is
of sound mind and has made the declaration voluntarily. They should
have to sign this document, this declaration, in the presence
of each other. Then there are exclusions, again as part of the
precautions and safeguards, of individuals who are not allowed
to sign as witnesses, including anyone who has a financial interest
in it or who can benefit from it. Then, after all this, under
clause 5, the attending physician comes to the stage where he
or she has to attend the patient for the purpose of ending their
life. In all cases the physician, after informing the patient
of his right to revoke the declaration and verifying that the
declaration is in force and that it has not been revoked by the
patient, will ask the patient immediately before assisting him
whether he wishes to revoke the declaration. It the answer is
"no", the attending physician will produce the prescription
which will prescribe the drugs which the patient will ultimately
take, and this will be taken to the pharmacist and the pharmacist
in due course will produce the drugs, which will be provided to
the patient to be taken or not to be taken at his or her option.
The timing is very important. The timing, if the patient decides
to go ahead, will be at the patient's option and it will be his
decision as to when and who will be there. In the case of someone
like Diane Pretty who suffered from Motor Neurone Disease, the
doctor will be allowed directly to administer the appropriate
drugs to assist that patient to die. Clause 6 just deals with
the revocation of the declaration and ensures that a note is made
recording its recommendation, that the declaration is removed
from the patient's medical file and destroyed. There is then the
question, under clause 7, of conscientious objection. As it now
reads, or will read if the amendments which I have proposed actually
are passed, it will state specifically that any member of the
medical care team and any of the physicians involved can distance
themselves from the process if they have a conscientious objection
to it. There is no requirement on them any longer to refer the
patient to another physician who might be willing to assist. This
deals with what I think was a constant concern of many commentators
about the Bill, and I think it is right that if a physician has
a conscientious objection, he or she should be entitled to withdraw
completely. This, of course, applies not only to the physician
but to the whole medical team, including the nurses and social
workers and everybody involved. Clause 8 deals with the position
of psychiatric referrals, to which I have referred. If any of
the physicians have any doubts about the patient's mental competence,
those doubts must be referred to a psychiatrist who will have
to satisfy himself that the patient is competent in order for
the process to continue. Clause 9 deals with the notification
of next of kin. It says that the attending physician shall recommend
to the patient that he or she notifies their next of kin of the
request for assistance to die, but it does not require the patient
to do this. That again is a considered decision and comes directly
from the key principle underpinning the Bill of personal autonomy.
It is the patient always who must decide what is in his best interests,
not his family, although I am sure that the great majority of
patients would wish to consult their family. Certainly, the evidence
that we have received suggests that their families, far from encouraging
them to be assisted to die, will try to get them to prolong their
lives for as long as possible. Clause 10 deals with the protection
of physicians and other medical personnel. In addition to protecting
them from the consequences of the existing law, it also provides,
under (3), that they will be deemed not to be in breach of any
professional oath or affirmation. Sub-Clause (4) is yet a further
safeguard. It disqualifies the physician or any member of the
medical care team from taking any part in assisting the patient
to die if they have grounds for believing that they will benefit
financially or in any other way as a result of the death of the
patient. Again, that is a safeguard to make sure that no physician
or member of the team has any inducement at all to assist in the
process. Clause 11 deals with the offences. Sub-Clause (1) is
where some person wilfully falsifies or forges a declaration with
the intent or effect of causing the patient's death. This seems
to be equivalent to murder, or homicide, and the provision is
that the person would be guilty of an offence under this subsection
and liable on conviction on indictment to imprisonment for life
or whatever shorter term the court provides. In the further three
subsections, which deal with a range of possible offences, which
I do not think it would be particularly helpful for me to comment
upon, the person committing the offence is liable on conviction
to up to five years' imprisonment. We then move on to section
10, which is insurance. In order to ensure that no policy of insurance
is invalidated which has been in force for 12 months, we have
put in this provision that the insurance will remain in place
after it has been in force for 12 months. Clause 13 deals with
all the documentation, which has to be very carefully provided
and retained so that the attending physician can send a full copy
of the file to the monitoring commission within seven days of
the patient having been assisted to die. The monitoring commission
is set up under clause 14 and consists of a registered medical
practitioner, a legal practitioner and a lay person having first-hand
knowledge or experience in caring for a person with a terminal
illness. The intention of the lay person is that such a person
would have an understanding of how patients react on a day-to-day,
hour-to-hour, even minute-to-minute basis. If the monitoring commission
is of the view that the necessary safeguards and processes have
not been followed, it will refer the matter to the district coroner.
If it is in order and they are satisfied that all the conditions
have been complied with, they will advise the attending physician
of that fact. I now move on to section 15, which needs a little
clarification. It relates to the administration of drugs to patients
suffering severe distress and provides that a patient suffering
from a terminal illness shall be entitled to request and receive
such medication as may be necessary to keep him free, as far as
possible, from pain and distress. I have been surprised at the
opposition by much of the medical profession to this particular
clause. The reason for its insertion and inclusion is that there
is clear evidence that many patients do not get sufficient pain
relief perhaps for any one of a number of reasons. Research published
by CancerBACUP this year[1]
demonstrates that a large number of patients are not even consulted
about their pain relief. Research from the Nuffield Trust last
year found that a considerable number of patients actually suffered
unnecessary pain which could have been prevented. There is a range
of other research elsewhere which supports this. Of course anecdotal
evidence from any number of people with whom I and others have
spoken always refers to the terrible death of somebody they have
known or who was close to them who suffered terribly. Finally,
in relation to this clause, there is the view of a very well-known
antagonist of assisting the dying by the name of John Keôwn,
who has written extensively on the subject. His concern is that
the case of Rex v Woollin has undermined the double-effect
principle, which is so key to palliative care, and that doctors
will feel at risk, if the principle of palliative care has been
adversely affected by this particular judgment of the Appeal Court.
There is a further factor which is also very relevant to this
clause and that is that it is clear that there are a number of
doctors who are concerned about using the double-effect principle
in order to ease the pain of their patients because they are frightened
that they may be prosecuted; there might also be a question of
religious belief. The principle of course, as is known to the
Committee, is that if a doctor prescribes medication which he
believes could hasten the patient's death, this is not in any
way an offence if his intention was to relieve pain. One of the
further issues which concerns many medical practitioners, and
which was the subject of a doctors' survey, is that new legislation
is being proposed in relation to the role of the coroner. As the
presiding chair of I think it was the Shipman Inquiry said, coroners
must start to "think dirty", and that means to be suspicious
of all the cases where somebody has died if in any way it could
be suggested that their death had been foreseen. We move on to
Clause 16, to the usual power of the Secretary of State to make
orders or regulations. There we have replaced the wording which
we originally had in the Bill, which I do not feel was appropriate,
with what we believe to be the standard rights of the Secretary
of State. The Bill then provides for the schedule which incorporates
all the safeguards which I have mentioned and which has to be
signed by the patient when he has finally made his decision to
ask for assistance to die, even if he subsequently withdraws that
request. In addition to the Bill, there will naturally be regulations
by the Secretary of State. Additionally, it is good practice for
the BMA and/or the General Medical Council to prepare detailed
guidelines along the lines of those they prepared in relation
to the withholding and withdrawing of life-prolonging treatments.
I believe that this Bill is a deeply humane piece of legislation
which will protect patients as well as their physicians and families
and, for the first time, will regulate assisted dying which already
takes place in England and Wales. As I reflect on the suffering
of these patients and their families, which is so graphically
described in the three typical letters included in your plastic
folder which has not yet been distributed by the Clerk to the
Committee, it is my belief that in our caring society we can no
longer ignore the suffering of vulnerable people like Diane Pretty
and brush away their pleas to end their suffering with the uncaring
message that they must simply continue to suffer in order to protect
others. Thank you,
Chairman: Thank you, Lord Joffe.
Q71 Lord Carlile of Berriew: Lord
Joffe, I am sure everyone would agree that you have given us a
very valuable outline of the Bill. Might I start at the beginning?
What you set out in the Bill seems to me to be an evidential process
followed by, much more briefly, an assisting process. Would you
agree with that?
Lord Joffe: I would agree with that, yes.
Q72 Lord Carlile of Berriew: Why
is it that the decision-making on the evidential process is placed
in the hands of the medical profession as opposed to somebody
who is more accustomed to making crucial decisions in relation
to what may be evidentially difficult matters, such as a judge
or a coroner?
Lord Joffe: I think basically the underlying
approach to the Bill has been that doctors are in a close relationship
with their patients. They know their patients, particularly if
they are general practitioners, and it is particularly appropriate
for them to discuss these issues in a non-aggressive, caring way
with patients whose lives, in the main, they would wish to prolong
rather than to end. This is the underlying principle, and doctors
are particularly well equipped to form a view on issues like diagnosis
and prognosis and many of the other issues which they need to
address.
Q73 Lord Carlile of Berriew: Given
that the consequence of this process is the ending of a human
life, do you not feel that it would ensure much greater public
confidence, if your Bill is enacted in principle, were the actual
decision to be taken by somebody who is far removed from the patient,
on the basis, hopefully, of cogent evidence beyond reasonable
doubt?
Lord Joffe: I do not think this is a case where
we are talking about evidence beyond a reasonable doubt. What
we are talking about is the exercise of the patient's autonomy.
This is the underlying principle. We are looking for a patient
to make an informed decision, not anyone else, and the doctor
simply to be satisfied that all the processes have been complied
with.
Q74 Lord Carlile of Berriew: Given
your lack of confidence in the private medical profession to carry
out this regime satisfactorily, what is the foundation for your
greater confidence in practitioners in the NHS?
Lord Joffe: It is not a question of not having
confidence in doctors practising privately. In fact, as you and
the Committee will well know, a great many consultants who practise
in the NHS actually have a private practice as well. What we are
seeking to do is to ensure—and it is just one of a number
of safeguards that I would be quite happy to take out if you felt
that was necessary—is an added precaution that we should
not have individual consultants who specialise in assisting patients
to die.
Q75 Lord Carlile of Berriew: What
proportion of unlawful killings by doctors in the last 10 years
has taken place in the private sector and the NHS respectively?
Is it not the case that the vast majority has taken place in the
National Health Service and that there are very few cases which
have been before the General Medical Council where gross negligence
by doctors and unlawful killing has taken place in the private
sector?
Lord Joffe: I think if there is total confidence
in the private sector, I would be very happy to amend the Bill.
Q76 Lord Carlile of Berriew: But
that is not your starting point? You told us with force, if I
may say so, that you thought it was inappropriate for this to
occur in the private sector. The point I would like to put to
you is that there is very little evidence that one could have
total confidence in either sector and that there is a danger of
mavericks operating in this field, both in the NHS and anywhere
else, even in British medicine, is there not?
Lord Joffe: There are always the occasional
mavericks operating everywhere and in every field of law; people
can murder other people. There are always maverick people out
of step with society. I accept that. I am not sure what the point
is that you are making.
Q77 Lord Carlile of Berriew: Like
Dr Shipman, they find their niche, do they not?
Lord Joffe: No. Dr Shipman might have found
his niche but the point about it is that he found his niche under
the existing law. In my view, it is highly likely if this Bill
had been in force that he would have been found out earlier and,
what is more, the last thing that Dr Shipman would have wanted
to do was to call in another GP, a palliative care consultant
and a solicitor before, sadly, he killed his patient.
Q78 Lord Carlile of Berriew: I have
two further questions, if I may, at this stage, and one relates
to a solicitor. The question before that relates again to the
NHS. If this procedure were to be carried out in the NHS, then
presumably in many cases it would be carried out in an NHS hospital,
which is under the direction of an NHS health care trust. If an
NHS health care trust is unable to agree that this procedure should
be carried out in their trust area, as seems very possible for
a great many NHS health care trusts, is it your view that they
should be forced to agree to carry out this procedure as part
of their NHS responsibility? If so, what protection does that
give to directors of NHS trusts?
Lord Joffe: I think that is a very valid point
which needs to be considered and looked into[2].
Q79 Lord Carlile of Berriew: Have
you not considered it?
Lord Joffe: No, I have not considered it.
1 Note by Witness. This research was, in fact,
published in 2001. Back
2
Note by Witness. In Oregon 94% of patients who have an
assisted death die at home: only 1% die in hospital. Back
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