21.Supplementary memorandum from Dr P
J Howard (MIB 1204)
QUESTIONS 4 TO
8. DR P J HOWARD
MA MD FRCP
4. Do the provisions contained within the
Draft Bill enable people to be sure that their beliefs with regard
to treatment will be respected if they lose capacity?
Advance Directives, as statements of the patient's
wishes and background beliefs can be very useful in deciding a
patient's treatment in the event of incapacity. However, it has
long been held that positive statements regarding treatment made
by patients in advance of their becoming incapacitated cannot
bind a doctor to act against his/her clinical judgement. Nevertheless,
there is no provision for indicative positive advance statements
in the Bill. It is clear therefore that the Bill will effectively
limit patient treatment options.
Patients will often make decisions regarding
actual and specific treatment options over a period of time and
may change their minds during the course of their deliberations.
Patients will usually wish to consult friends and family and increasingly
have recourse to the Internet for additional information. A doctor
may be held negligent not only for failures in diagnosis and treatment
but also with regards to the advice he gives to patients in obtaining
valid and informed consent. The standards for obtaining valid
consent in a contemporaneous setting are justifiably stringent.
However far less stringent criteria would apply to advance refusals
of treatment. In practice, advance statements will apply to the
refusal of hypothetical treatment in the future rather than the
acceptance of actual treatments in a contemporaneous setting.
Patients will not usually have the opportunity to discuss treatment
options with the doctor who will actually be responsible for patient
care. This will mean that it will be difficult, if not impossible,
for the responsible doctor to be sure of the patient's wishes.
Moreover, there may be a considerable lapse of time between the
refusal and its application during which there may have been advances
in treatment about which the patient may be ignorant. Those of
us who have dealt with Jehovah's Witnesses who have refused blood
transfusion, with potentially dire consequences, will appreciate
the anxieties that such refusals evoke in practice. The refusal
of Jehovah's witnesses for blood products is well established
and part of a well-recognised belief system. It is difficult to
see how such a high level of certainty regarding an advance refusal
could be made in any other context, particularly with regards
to patients who are previously unknown to the doctor responsible
for their care and where the patient's views and wishes cannot
be known with the same degree of certainty. Advance Refusals ought
not to be made legally binding on doctors.
5. Should the Draft Bill specify that a person
acting on behalf of a person with incapacity should have regard
to their values as well as their wishes and feelings when deciding
what is in their best interests?
Medical decision-making is a two stage process.
First, it requires an assessment of the patient's clinical needs
and of the risks benefits and alternatives of treatment. Second,
a decision by the patient as to whether or not to accept treatment.
Notwithstanding the clinical assessment, competent patients are
free both legally and ethically to refuse even worthwhile or necessary
treatment. In other words, a patient may act against their own
best clinical interests. However, the responsibility of the healthcare
professional is to ensure that the diagnosis is accurate and the
explanation of the proposed treatment options is sufficient for
the patient to make an informed choice. When the patient is unable
to make a decision because of incapacity, or the pressures of
an emergency, the doctor must make a decision based largely on
the clinical best interests of the patient with an emphasise on
treatment of the underlying condition, relieving pain and suffering
and preserving life. This is covered by the common law principal
of necessity, which does not apply only to emergency treatment,
but also to what is necessary even when of a rather mundane nature
such as washing and dressing or routine dental treatment. A doctor
may therefore act reasonably and ethically, if his treatment is
clinically appropriate according to the principle of necessity
and in accordance with the wishes of others involved in the patient's
care such as friends, relatives and other carers. (Unfortunately,
various studies have shown that proxies are often poor judges
as to the would-be wishes of the patient. These have been mainly
American studies in which patients and their proxies have been
asked to indicate what treatment the patient would have chosen
using a range of clinical scenarios and comparing the responses
with those of the proxies). Reliance on the assessment of relatives
and carers may also be misleading because of the understandable
duress they may suffer especially with sudden or life threatening
illness eg trauma, stroke or head injury. Hence, whilst taking
into account the values as well as the wishes and feelings of
patients is important in making decisions for the incapacitated,
it is often difficult and unreliable in practice. Such considerations
should not however, mitigate good medical decisions by doctors
in emergencies particularly where the views of the patient cannot
be ascertained with reasonable certainty.
6. As in our society people choose to adhere
to different values and beliefs, do you consider that the Draft
Bill achieves the right balance between respect for individual
diversity and respect for life? If not, what would you change?
Unfortunately, following the Bland  in
the House of Lords and the Janet Johnson  case in Scotland,
life is no longer regarded as necessarily being of benefit to
the patient. The concept of "respect for life" has therefore
become rather broad. A more important principle is that no medical
intervention should have as its purpose the termination of a patient's
life by act or omission. Unfortunately, "respect for life"
may mean very different things to different people because of
the plurality of beliefs within society. Quality of life judgements
are often largely subjective and refer to assessments by healthy
individuals on behalf of those who lack capacity. They are therefore
both subjective and potentially misleading. Whilst doctors and
other healthcare professionals have competence to decide the worthwhileness
of a patient's treatment, they are not competent or qualified
to decide the worthwhileness of a patient's life.
7. In your view does the Draft Bill distinguish
between ending life by omission and not aiming to prolong life
by inappropriate means? If not, what safeguards would you like
The Bill would clearly allow the withdrawal
or withholding of life sustaining treatment and care including
the provision of hydration and nutrition. The withdrawal of hydration
is a sure way of terminating life. Hydration and nutrition are
not treatment of any condition, including stroke, PVS or MND but
are the ordinary means of sustaining life for both the healthy
and the sick. The Bill must not allow the withdrawal of hydration
an nutrition with the intention of bringing about the death of
a patient. Similarly ordinary treatment such as insulin should
not be withdrawn with the same purpose. I agree with the statement
made by Dr Wilks, on behalf of the BMA in answer to question 227:
"Any doctor who makes a decision that someone's
life in common parlance has no value and should be terminated
and ends treatment with the intention of terminating life is acting
illegally and unethically".
8. Will giving advance refusals a statutory
basis risk the welfare of patients? If so, how might the Draft
Bill be amended to avoid this?
Advance refusals of treatment by "freezing"
the wishes of a patient in the form of a binding legal instrument,
will risk the welfare of patients and are open to misunderstandings
and abuse. A suicide note would be a valid and applicable advance
refusal that would prevent doctors from resuscitating patients
after drug overdose. Advance statements, whether they are positive
or negative statements, ought to be indicative and advisory rather
than legally binding.