Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

21.Supplementary memorandum from Dr P J Howard (MIB 1204)


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 [1993] in the House of Lords and the Janet Johnson [1996] 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 to see?

  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.

October 2003

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