The Joint Ethico-Medical Committee is composed of members drawn from the two
parent bodies, the Catholic Union of Great Britain and the Guild of Catholic
Doctors. The Catholic Union is an organisation of the Catholic Laity which is
not affiliated to the hierarchy and which represents the Catholic viewpoint,
where relevant, in Parliamentary and legislative matters. The Guild of Catholic
Doctors represents Catholic Medical Practitioners of the United Kingdom.
We welcome this opportunity to offer our views on this important topic
The introduction clearly lays out some of the issues and
difficulties involved in making decisions about withholding or withdrawing
treatment.
We are encouraged to see the unequivocal statement that ‟euthanasia and assisted
suicide are both contrary to the ethics of medicine and unlawful". However we
would to expand your description of euthanasia - (‟......any medical
intervention where the doctor's primary intention is to end the patient's
life...." .) The Catholic understanding of euthanasia has always been - "an act
or omission which of itself and by intent ends life for merciful reasons." This
definition of euthanasia, with specific reference to omission, is also the one
adopted by the BMA in its ‛debating pack', in preparation for its consensus
conference on physician-assisted suicide (December 1999, page I3); it described
euthanasia as ‟.. a deliberate act or omission whose primary intention is to end
another's life." The concept of omission in euthanasia does require further
explanation. Catholic thinking does not hold that life must be prolonged by all
means possible, but there are circumstances where withdrawing and withholding
treatment could be regarded as immoral, and we address these later in this
document. It is therefore very important that any definitive guidance from the
General Medical Council takes cognisance of the broader definition of
euthanasia, which includes omission, as it will be held by a significant number
of practising doctors.
An important omission has been the matter of conscience. This
document deals with matters surrounding the end of life when judgement on what
is best can be difficult. There will be times where an individual believes that
a course of action being taken is immoral. In these circumstances the doctor
must be allowed to exercise their right of conscientious objection, without
detriment to their standing within the profession and without the threat of
disciplinary action by the GMC. This relates particularly to the issue of
withdrawal of hydration and nutrition. It is our position that hydration and
nutrition should never been withdrawn as a means of deliberately bringing about
the death of the patient. We hold that the practice of withdrawing hydration
followed by “terminal sedation” to cause the death of a patient is totally
unacceptable. No nurse or carer must ever be forced to participate in such a
process, especially if they had expressed a conscientious objection to it.
Doctors and nurses must not be placed in a situation of providing a standard of
care which is indistinguishable from neglect. Where a doctor believes that an
action, or withdrawal of treatment, is morally wrong, he may not in conscience
ask someone else to perform that action/omission which he himself believes to be
wrong. However, it would be right for that person to make their position clear,
and then the patient, relative or carer, could seek other opinions. The onus of
seeking other opinions should not lie with the individual expressing a
conscientious objection.
At several points in the document the GMC recommends recourse to the courts for
a decision. Lord Justice Ward, in his summary relating to the Manchester
conjoined twins judgement, stated in response to the Archbishop of Westminster's
submission on the ethical issues involved - ‟This is not a court of morals but a
court of law...." Judges decide what is legal or illegal, which may be different
from deciding what is morally right or wrong. As an example, the Bland judgement
is one which we have a consistently criticised as being morally wrong, as the
withdrawal of nutrition and hydration from Tony Bland was made in order to bring
about his death, and was therefore euthanasia by omission. See footnote for
further explanation. We would also argue that in the Bland case tube feeding was
declared medical treatment only in order to allow its withdrawal.
The use of the general and poorly
defined term ‟best interests" raises serious problems. The medical profession
can legitimately claim to have expertise in making value judgments on medical
and clinical matters. On what grounds can doctors claim expertise in judging
non-clinical matters? It is important to separate the clinical judgement on what
is best in the medical sense, from what the patient wishes and desires.
Otherwise whatever the patient wants becomes ‘their best interest’. ‛Clinical
Best Interests' are best defined as:- ‛The preservation of life, the prevention
of disability and the relief of pain and distress.' Although patients will
legitimately include other values, beliefs and priorities in making their
decisions on what treatments to accept or reject, when it comes to dealing with
the incompetent patient the doctor should restrict their judgements to the
assessment of medical factors such as the clinical benefits, and the risks and
burdens associated with any proposed treatment.
We fully support the statements that life has a natural end and that doctors
should not strive pointlessly to prolong the dying process.
There are potentially serious difficulties in accepting and
interpreting ‛advance statements' and ‛living wills'. In the same way that
informed consent is required to accept treatment, so ethically it is right to
expect similar informed consent for a refusal of treatment. We accept the
principles enshrined in the judgment in the case of the Broadmoor patient C [In
re C [1994] 1 WLR 290-296] where C's refusal of an amputation was made whilst he
was competent and in the full knowledge of his condition, of his circumstances
and of the consequences of his decision. We accept that such refusal would be
morally binding on the doctor should the patient subsequently become incompetent
because the patient had precisely defined the circumstances to which his
decision applied. We also accept the very specific refusals of treatment,
usually on religious grounds, such as the refusal of blood transfusions by
Jehovah witnesses.
The difficulties lie with general ‛living wills' made by patients while they are
healthy and indicating refusal of a range of (and even all) treatments. When
making such a ‘living will’ no one can know in what personal circumstances it
could be implemented or what facilities for treatment would then be available.
There is an important distinction to be made between the refusal of consent made
close to a proposed operation, at a time of full capacity with the patient
suffering from the condition and with an understanding of the consequences of
that refusal, and a ‘living will’ made some time ago, expressed either in
general terms or refusing specific treatments for conditions from which the
patient was not then suffering.
We support the sentiments expressed by Sir Douglas Black, writing in a recent
edition of the BMJ, who has been diagnosed with a pancreatic growth but writes
that he has not written a living will because "The
care of terminal illness is taxing enough; and they can certainly not be
simplified by being constrained by a set of legally enforceable requirements."
We also support his solution to the issue "Find a good
doctor and trust him or her. ...... good doctors can be found ..... and greatly
outnumber the ignorant, careless and maladjusted....."
The GMC should strongly oppose the imposition of conditions which would restrict
a doctor’s ability to provide ‛best medical practice'. There is no legislation
on advance directives and it would be wrong to instruct doctors to respect
‘valid’ advance directives without defining the term ‘valid’ and without giving
explicit instructions on how doctors are to ascertain the validity of ‘living
wills / advance directives’.
To give a specific example. In the USA a woman had an advance directive refusing
tube feeding. She had a stroke and was unable to swallow or speak properly.
Because of the advance directive the doctors were unable to insert a nasogastric
tube. She was conscious and was indicating to the nursing staff that she wanted
food / fluids, but a court ruled that the ‘signs’ she was making were
insufficient evidence that she wished to overturn her advance directive.
The draft guidelines produce a significant discrepancy between the quality of
the legally required consent for treatment and that proposed for the acceptance
of advance refusals of treatment. The standard of refusal of treatment was
defined by the Appeal Court (St George’s Healthcare NHS Trust v S [1998] 3 A11
ER 673) which stated “For their own protection hospital authorities should seek
unequivocal assurances from the patient (to be recorded in writing) that the
refusal represents an informed decision; that is that she understands the nature
of and the reasons for the proposed treatment, and the risks and likely
prognosis involved in the decision to refuse or accept it. If the patient is
unwilling to sign a written indication of this refusal, this too should be noted
in writing. Such a written indication is merely a record for evidential
purposes.” The requirement for such strict documentation of a refusal of
treatment stands in stark contrast to the advice about accepting refusals in
living wills.
Doctors are used to seeking a second medical opinions, but there is not the same experience in seeking an ‟ethical review". Furthermore, giving a second medical opinion or advice is very different from taking and accepting the responsibility for decisions made. As explained above in question one, we do not think it is right that a person who has conscientious objection should be expected to find someone else to do the very thing they cannot do and then step aside.
We have already expressed our difficulties with the use of
the term ‛best interests'. In cases of disagreement among relatives and carers
which are based around non-clinical / non-medical matters, the ‟clinical best
interests" of the patient should be paramount. Our members report that relatives
can sometimes demand futile treatment because they wish to preserve the life of
their loved ones at all costs. At the other extreme, we have met relatives who
were urging withdrawal of treatment, and it became obvious that there was a
financial incentive for this, such as that they did not wish their relatives to
survive because of the cost of nursing home care. It has been suggested that
financial interest is a factor in up to 1 in 20 cases where relatives request
withdrawal of treatment.
There is a small body of research evidence which shows that relatives and carers
are not necessarily good at predicting what a patient
would chose. One study concluded “The poor agreement between patients and
surrogates suggests that substituted judgment is not an accurate tool to make
end of life decisions.”
We accept the proposal that in cases where it is not clear
whether a treatment will be beneficial, "...this
should not be used as a reason for failing to initiate treatment which may be of
some benefit to the patient." In such circumstances we suggest that the medical
team should set a realistic time scale within which the benefits of the
treatment could reasonably be expected to be manifest and to decide, at that
early stage, to withdraw treatment if the expected benefits had not been
realised.
The crucial difficulty lies around what is accepted as ‟medical treatment" in
particular relating to ‟artificial nutrition and hydration". There is a
substantial body of opinion which does NOT accept that nutrition and hydration
are ‛medical treatment.' For clarity we suggest that the issue is considered in
terms of the complexity of the different methods - e.g. Nasogastric tube
feeding; PEG insertion and tube feeding; Simple subcutaneous fluids; Simple
intravenous fluids; Total intravenous alimentation.
We attach, as an appendix, an article in a recent Catholic Medical Quarterly
written by two of our members which addresses some aspects of this issue. In
summary, the insertion of a nasogastric or percutaneous gastrostomy tube can be
considered as medical treatment, but once tube feeding is established the
administration of nutrition and hydration via that tube is basic nursing care.
Examination of the evidence relating to thirst shows that the hypothalamus is
important and that “Whilst other parts of the brain are required for the
behavioural patterns that occur in response to thirst, sensation of thirst can
be demonstrated to persists despite a very severe damage to other parts of the
brain, for example decortication. In the absence of independent demonstration of
hypothalamic damage in the location of the thirst centre, any assumption that
the patient with severe brain damage, from any cause, is adipsic cannot be
justified.”
The withdrawal of hydration is an important part of the campaign for euthanasia.
As far back as 1984 it was said "If we can get people to accept the removal of
all treatment and care - especially the removal of food and fluids - they will
see what a painful way this is to die and then, in the patient's best interest,
they will accept the lethal injection."
Yes. We fully support the ideal that all patients should be treated on the basis of clinical need, and decisions made on their ‟clinical best interests". It would of course be legitimate to consider the patient's ability to cope with a treatment (eg. Post transplantation immunosuppression) in considering whether to offer a particular type of treatment.
Yes. We fully support the statement that a good death is
“...where there is privacy, dignity, good quality care in comfortable
surroundings, adequate pain relief and appropriate support.”
However we would also point out the word Euthanasia [derived for Greek - Eu +
thanatos] is variably defined as ‘good death’ or ‘quiet and easy death’. In the
current climate where active campaigns are in place advocating euthanasia, the
use of the phrase ‘good death’ could be misrepresented and/or used
inappropriately. Rather than concentrating on the quality of a person’s death,
reference should be made to ensuring that medical practice enhances the terminal
stages of a patient’s life. Current good palliative care has allowed many
patients with advanced malignant disease to lead fruitful lives with a rapid
deterioration and swift death at the end. The emphasis should be on life rather
than the process of death.
The Bolam test is the standard used in medical negligence cases and we do not feel it is appropriate to be used to judge whether it is proper to withdraw or withhold treatment.
Yes. It is right that the senior clinician takes responsibility for any decisions. It may be helpful to state specifically that, in cases of disagreement, the junior doctor should not be required to act against his/her conscience.
Yes.
Yes. There should not be significant problems in seeking second opinions, as long as telephone discussion about a patient’s problem is regarded acceptable.
We accept the paragraph with the exception of the sentence which concludes “...you should respect the terms of any valid advance refusal which you know about or which is drawn to your attention.” In answer to question 4 we have already identified our misgivings about living wills. In a life threatening emergency situation, particularly if it is the first occasion that the clinical team has seen the patient, it is entirely inappropriate to expect the treating clinician to be able to make a judgment on the validity of any advanced refusal. A doctor should be supported in giving the best available medical care appropriate to the emergency, without the fear of legal or disciplinary consequences.
Yes
We suggest that if there is doubt as to a patient's capacity to decide then, whilst that capacity is being determined, the patient is treated in accordance with their clinical best interests.
Yes. Although it may not be necessary to reproduce the entire publications, the essential points should be included as part of the GMC document.
No - to both parts of the question.
Good communications among and between the medical teams, is obviously essential. It may be prudent to emphasise that a decision to withhold a specific treatment does not mean that other forms of care or treatment are also to be omitted. It should also be reiterated that ‛DNAR' orders refer to cardiopulmonary resuscitation, and even when a DNAR decision has been agreed other forms of resuscitation (eg. fluid replacement) may still be totally appropriate.
Yes.
Yes.
In paediatrics the importance of consensus agreement with parents is critical, because of the close and caring bond between them and their children. It is difficult to treat children when there is a divergent view between the clinicians and the parents.
The advice is helpful in part only.
It is generally accepted that cardio-pulmonary resuscitation (CPR) is often
successful when the cardiac arrest is due to a sudden cardiac event. When
cardiac arrest occurs in the context of progressive physiological deterioration
of the patient, then attempts at resuscitation are rarely successful, and if
successful then often only for short period. We fully support the statement in
paragraph 1 of appendix B which states about CPR:- “When used inappropriately it
may prolong the dying process in a degrading and undignified manner.” This is
graphically described in a filler in the British Medical Journal.
The implementation of professional guidance on CPR, is leading to a common
hospital practice that unless a ‘Do Not Attempt Resuscitation’ (DNAR) decision
has been agreed with the patient and / or their carers, it is given in all cases
of cardiac standstill. This is illogical as in other modalities of treatment the
patient needs to consent to treatment, and yet in the case of CPR it is given
unless the patient refuses!
In cases where death is imminent, eg. the patient has terminal malignancy, end
stage cardiac or respiratory disease, we agree that CPR is inappropriate, but
suggest that discussion with the patient or their relatives may be unnecessarily
distressing and even cruel. Many relatives harbour prolonged guilt after
agreeing to a DNAR order, feeling that in part they have brought about the death
of their loved one. Where CPR is felt to be clinically futile we would argue
that there is no need to initiate discussion of the issue with the patient or
relatives. To give an analogy, physicians are unlikely to discuss artificial
ventilation with a patient in end stage respiratory failure secondary to chronic
obstructive airways disease. In such circumstances ventilation would be futile
medical treatment and it would be insensitive to tell the patient about
ventilation, only to then inform them that it would be inappropriate in their
particular case. We suggest that there are many situations where CPR is also
futile medical treatment and that it is inappropriate to raise the issue with
the patient or their relatives in order to seek their agreement NOT to offer
CPR. Naturally if the patient or relatives raise the issue then discussion is
appropriate.
Artificial nutrition and hydration: Although a
distinction can be drawn between “artificial” and “ordinary” means of providing
food and fluids, the implication is that ‘artificial’ means are medical
treatment which can be legitimately withdrawn. We fully accept that the
insertion of a nasogastric or gastrostomy tube should be regarded as medical
treatment, but once in place the provision of food and fluids through that tube
should be regarded as “basic care”.
Basic care: That which is normally required in both health and disease to
sustain life and promote normal functioning. Treatment is disease specific,
whilst care requirements are common to healthy and sick and include things such
as provision of food and fluids, warmth, shelter, alleviation of pain and
distress, companionship and psychological support. There should be a presumption
in favour of providing food and fluids to a non-dying patient by whatever means
are appropriate for that patient in their particular circumstances.
Best interests: In a medical context, the best interests of the patient
are a combination of the medical needs of the patient (clinical best interests)
and non-medical factors relevant to the circumstances of the particular patient.
Clinical best interests: This supports a presumption in favour of
preserving life, restoring health and alleviating suffering. Where treatment
cannot be curative, palliative care should aim to maximise physiological
functions according to the circumstances. Decisions regarding treatment at the
end of life are amongst the most difficult and sensitive that doctors are called
upon to make. Such end of life decisions must be firmly based upon the medical
needs of the patient. A clinical opinion regarding what is in the medical
interest of the patient should be carefully distinguished from what the patient
may decide to accept or refuse. A competent patient may refuse what is in their
clinical best interests.
Euthanasia: An act or omission which of itself and by intent ends life
for merciful reasons.
Signed:
Dr Michael Jarmulowicz. FRCPath., MB.BS., BSc
Chairman of the Joint Ethico-Medical Committee of
the Catholic Union of Great Britain and the
Guild of Catholic Doctors
29 July 2001