Joint Committee on the Draft Mental Incapacity Bill Written Evidence

57.Memorandum from Dr Fiona Randall (MIB 74)

  Thank you for your e mail of 11 August 2003 asking for some information about the expected impact of this Bill on my specific area of health care, namely palliative care.

  You have asked for clarification of the benefits of the Bill. However, at the same time Susan Johnson, Head of the Mental Incapacity Division, has suggested that comments on the Bill be sent to the Scrutiny Unit at the House of Commons, and so I have sent a copy of this letter to that office, and have included in it some comments on the practical difficulties of implementing the Bill exactly as it stands.

  The Association for Palliative Medicine will also be submitting written evidence on the Bill and could be asked for oral evidence if necessary, so I have copied this letter to Dr Mary Neal, current chairman of their working group on ethics, of which I am a member.

  At the outset I would mention that the primary focus of the Bill appears to be on persons who have long term learning disability or chronic mental incapacity due to illnesses such as psychosis or depression or dementia. However, the Bill will clearly also apply to patients with grave physical illnesses, which, by reason of vital organ failure and consequent biochemical disturbances, will cause either confusion or impairment of consciousness. These states frequently render patients incapacitated in terms of health care decisions, either temporarily or permanently. In the context of palliative care this incapacity may be a foreseen event, but it may also be unexpected and its onset may be sudden.

  My comments are based on my experiences as a consultant in palliative medicine, and also as a teacher on health care ethics to both undergraduate and postgraduate doctors and nurses, a role which I undertake partly as a result of undertaking a philosophy PhD in health care ethics. The comments below relate to the impact of the Bill on patients, their families, and health care professionals, particularly but not exclusively in the context of grave physical illnesses.

  I would like to make some general positive points about the Bill initially, then proceed to more detailed comments on specific clauses.

  In terms of empowerment, health care professionals already have guidance on decision-specific tests of capacity, but making the process of assessing capacity more obviously subject to clear law would be in the interests of patients and health care professionals.

  The General Authority which will protect health carers provided they act reasonably and in the patients' best interests will protect patients as well, and the Court of Protection will hopefully be able to provide a timely response to resolve difficult issues and protect all parties in the process.

  The Bill makes it clear that those making health care decisions for mentally incapacitated patients must make those decisions on the basis of the patient's best interests, and the emphasis on taking account of what can be ascertained of the patient's wishes will enshrine in law the guidance on consent already issued by the Department of Health. Unfortunately this guidance is not always followed, in that attention is not always given to what can be ascertained of the patient's current wishes, or of what those wishes might have been in the circumstances. By making it law to take those wishes into account, I believe that the decision making process for these patients will be improved, as health care professionals will be persuaded by the impact of the law that consideration of what can be known of those wishes is really important in these difficult circumstances. I am thinking here particularly of those cases where the professionals' natural instincts are to carry out life-prolonging measures on incapacitated patients with a poor prognosis, and they have a tendency not to pay attention to what the patient might have wanted in the circumstances. The Bill will tend to correct such partial and rather inadequate assessment of "best interests". At the same time the Bill allows life-prolonging treatment to be given pending a more considered decision, for example by the Court of Protection.

  The Bill gives clearer legal force to advance refusals of treatment (although there are some practical difficulties arising from its application which I have described below).

  Successful implementation of this Bill will require significant education endeavours for health care professionals and the public, and some resources will be required to enable that education to occur.

  Since the process of appointing a LPA will be quite complex, will require following a strict formula, and will necessarily entail a registration process, I think it is unlikely that many patients will appoint an LPA, at least in the near future. Written advance decisions are still relatively uncommon, and they are rather easier to formulate than the LPA and do not require registration.

  There are some items in the clauses of the Bill which I believe are likely to lead to difficulties in clinical practice, and in some places a very slight change in wording might help. I think there are more significant problems with the section on advance decisions. The following comments are in the order of the clauses of the Bill.

  Clause 2(3) states that "all practicable steps" must be taken to help a patient decide before he is treated as unable to make a decision. This is most commendable and will improve patient care, but it will also have significant resource implications in terms of the time health care professionals, in this case fairly senior doctors and nurses, will have to commit to the assessment of capacity for these patients. There is already a significant shortage of these experienced health care staff, so time taken to implement this Bill will be at the expense of other aspects of patient care and this must be appreciated.

  Adequate assessment of capacity to make decisions which are complex and require the patient to understand, retain and consider a large amount of (often distressing) information will necessarily require considerable time as well as experience and skill.

  It is of course possible that as some patients will prove able to make the decision and some of them may decline treatments. If this proves to be the case then some professionals' time may be saved by not undertaking treatments which consume considerable financial and human resources but which the patient does not actually want to undergo.

  Clause 4(1) states that any act done for, or any decision made on behalf of a person who lacks capacity must be made in the person's best interests. In practice this would mean that the patient lacking capacity must receive the best treatment for him/her, and must receive the care which most accords with his/her best interests. But the reality in the NHS is that treatment and personal care are effectively rationed—there are now, and will be in the future, grossly insufficient resources to give every patient what is in his/her best interests. My worry about the impact of this clause in practice is that it may force resources to be unfairly distributed to the mentally incapacitated, since by law they must have what is best for them. This would be likely to be achieved at the expense of patients with capacity who can be told the NHS does not have the human/financial resources to do what is best for them.

  For example, many patients would ideally like to be cared for and die at home, providing that 24 hour care could be provided for them there by the continuous presence of a nurse. Care in the familiar environment of home might be in the best interests of the many confused or demented patients. However, such care is expensive in human and financial terms, and if it had, by law, to be made available to mentally incapacitated patients because it was in their best interests, then mentally competent patients would have to forego it to an unreasonable and unjust extent.

  The solution to this problem is to include in clause 4, and subsequently in the Bill where necessary, the stipulation that the benefits of treatment and care must be distributed justly between mentally incapacitated and mentally competent patients, and the former cannot have their best interests pursued without consideration of the interests of the latter group.

  Clause 4(2)(d) as written appears to give equal importance to consulting any person engaged in caring for the patient and those persons who are appointed deputies or registered as having LPA's. Surely greater legal force should be applied with regard to consulting deputies and LPA's than to consulting any person interested in the patient's welfare.

  Clause 4(4) reads as though clause 4(1) re best interests will be complied with "if the person reasonably believes that what he does or decides is in the best interests of the person concerned". Unfortunately, this implies that health care professionals need not pursue the essential steps outlined in 4(2), whereas following these steps regarding ascertainment of the patient's wishes is really in patients' interests and needs to be enshrined in law. Clause 4(4) would seem to provide an undesirable "let out" clause for health care professionals who for any reason do not want to consider what the patient would have wished.

  Clause 7(1)(b) states that General Authority does not authorise a person to restrict P's liberty of movement "unless there is a substantial risk of significant harm to P". But in the context of health care it is the case that mentally incapacitated patients' movements can cause a substantial risk of significant harm to other patients, for example by persistent wandering in in-patient units, or by causing severe noise disturbance etc. The free movement of the mentally incapacitated patients sometimes has to be restricted to protect other patients—who themselves have a right to protection from harm caused by their fellow patients. Yet General Authority in this Bill seems to prevent restriction of movement of the mentally incapacitated, which is likely to be interpreted as forbidding health care professionals from restricting the movement of such patients where it is a harm to other patients.

  This problem recurs in clause 10(1)(b) and 10(2)(b) with reference to the powers of LPA's regarding the movement of the mentally incapacitated person.

  The solution is probably to include in General Authority the authorisation to restrict the movement of P where this is necessary to avert substantial risk of significant harm to P or other persons. Clearly, reasonableness as already mentioned in the clause is essential here.

  Clause 7(2) would seem to mean that General Authority does not allow health care professionals to "do an act" which conflicts with a decision made by a doner of LPA or a deputy appointed for P by the Court of Protection. But if the LPA or deputy wanted a life-prolonging treatment continued for a incurable and gravely ill patient, whilst the health care team were clear that in this particular situation the harms and burdens of the treatment exceeded its benefits, then this clause would seem to prevent the health care team from acting to discontinue the treatment they felt was inappropriate. The most obvious example relates to the highly emotive issue act of switching of a ventilator. According to the Bill, because withdrawing ventilation requires professionals to "do an act" for P, then the professionals could not do this if the LPA or deputy insisted on the patient being ventilated. I suspect conflict is more likely to occur where the patient has appointed an LPA than where a deputy is involved.

  This clause seems at variance with the principle that neither patients nor those acting on their behalf (eg LPA's) can require health care professionals to provide a treatment which they believe is clinically inappropriate.

  Resource issues clearly come into play here also. If an LPA could insist that a ventilator could not be switched off, then another patient who could gain benefit from that ventilator and ITU bed might be denied it, since the new law would support the LPA's request to continue ventilation by preventing the professionals from `doing an act' to patient P contrary to the LPA's decision. The Bill might thus inadvertently force diversion of resources to incapacitated patients at the expense of those with capacity, or it might rarely impose unachievable requirements on intensive care units.

  Clause 7(3) does not solve the problem illustrated in the above example.

  Clause 10(4)(b) makes it clear that a LPA does not confer authority to refuse to consent to life-prolonging treatment, unless the LPA "contains express provision to that effect". I fear this may be confusing to patients appointing a LPA for welfare decisions, who will naturally conclude that the LPA has the power to refuse life-prolonging treatment.

  Clause 18(1)(h) allows "the court" to arrange the settlement of P's property. Does this mean that the relatives of a patient, who is mentally incapacitated by reason of a terminal illness such as a brain tumour and who has not previously made a will, can expect the court to determine what should happen to the patient's estate? Many patients are mentally incapacitated for a period just prior to death, and a significant number have not made a will. Can the court really undertake to determine what should happen to the property of this potentially large group of people?

  Clause 24(2)(b) states that an advance decision is not valid if subsequent to making it the person confers authority to consent or refuse treatment on a doner of an LPA. This means that an LPA's decision always overrides or effectively negates a prior advance decision because the latter is considered invalid. Patients would need to have a very clear understanding of this legal position, as they might (reasonably) think that their own written advance decisions should have more weight than those of a LPA subsequently appointed by them.

  Clause 24(2)(c) states that "an advance decision is not valid if P has done anything else clearly inconsistent with the advance decision" previously made. This is a problem, as it is difficult to judge what is clearly inconsistent with a particular decision. The problem is important, as this clause could be used to make an advance decision invalid. For example, a patient I now know has a "Living Will" refusing life-prolonging treatment, and indeed he has refused hormone treatment for his prostate cancer. But recently he bled from a tumour in his tonsil, and then agreed to a blood transfusion. This decision seems inconsistent with his advance refusal of life-prolonging treatment and according to the Bill would invalidate the advance decision. I think the patient would be surprised and dismayed to have his clearly thought out and recorded advance decision so easily invalidated!

  In practice, patients who are competent often agree to life-prolonging treatments, for example antibiotics, whilst at the same time stipulating an advance decision to refuse life-prolonging treatment when they are mentally incapacitated. Unfortunately this Bill would mean that a decision by a competent patient to accept one life-prolonging treatment effectively invalidates an advance decision, which the patient intended to be respected when he/she became incapacitated. I think this problem needs much more consideration.

  Clause 24(4)(b) and (c) make it easy for health care professionals to declare that an advance decision is not applicable. Indeed, the more specific the circumstances mentioned in the advance decision the less likely it is to apply in the exact circumstances which later arise. Unfortunately it is relatively easy for professionals (and possibly family members) to declare that some circumstances exist which the patient did not anticipate, and so to declare that the advance refusal of treatment is not applicable.

  My most serious concerns about the clauses on advance refusals of treatment are that the conditions imposed for establishing validity and applicability make it rather too easy for others to declare the advance decision invalid or not applicable. Thus the patient's wishes can be rather easily overridden, albeit by well-meaning others. I think this problem needs more consideration.

  Clause 28 makes it clear that the Bill does not permit anyone to make decisions regarding donating organs for transplants on behalf of an incapacitated patient. What will happen if the law changes to one of "presumed consent" to organ donation? Will no-one then be able to refuse to donate the organs on the incapacitated patient's behalf—even an LPA who knew the patient's wishes?

  Clause 30(1)(a) to (e) makes it clear that much will turn on the details contained in the codes of practice the Lord Chancellor will prepare. Moreover, clause 30(6) will mean that it will be the duty of every health care professional, enshrined in law, to know about and have regard to the codes of practice. Implementing this will require resources for education of at least all trained nurses and doctors, and probably some other health care professionals as well.

  I hope these detailed comments are helpful. Sometimes it is difficult to envisage what exactly will be the effects of changes in the law for patients, their families, health care professionals and the public.

August 2003

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