Justice and Home Affairs Committee, 17 Nov 1999

Meeting date: Wednesday, November 17, 1999

Official Report 311KB pdf

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Adults with Incapacity (Scotland) Bill: Stage 1

We now move on to item 2 on our agenda, evidence on the Adults with Incapacity (Scotland) Bill. We have asked a number of witnesses to come before us today and, despite the short notice, they have agreed to do so.

I ask the witnesses from the British Medical Association to make themselves known, one by one, to the committee. We have received a helpful written submission from the BMA and I would like us to proceed to a question-and-answer session, rather than hearing lengthy statements. I invite members of the BMA to introduce themselves.

Thank you, convener. I am Rab Hide, the vice-chairman of the Scottish council of the British Medical Association. With me are colleagues from south of the border and from Ireland, who will now introduce themselves.

My name is Dr Michael Wilks. I am currently chairman of the BMA's medical ethics committee. I chaired the working party that produced our most recent publication, "Withholding and Withdrawing Life-prolonging Medical Treatment".

I am Bill O'Neill, a medical member of staff at the British Medical Association. I was previously a consultant in palliative medicine.

We welcome the opportunity to give evidence on this important issue. We welcome the main thrust of the bill and hope that we can assist the committee in three areas: the initiation and possible withdrawal of treatment in incompetent adults; the question of emergency treatment, where such treatment has to be initiated extremely rapidly; and in the area of research, where we have some concerns that the bill as it stands may cause difficulties in the processing of legitimate medical research in Scotland.

Thank you very much. I would also like to thank the two witnesses who have travelled far to be here today. We appreciate that, particularly given the short notice.

We will move straight to the questions.

Good morning. Some of the witnesses who have come before us have expressed concern about nutrition and hydration being included in the definition of medical treatment. Does the BMA have a view on that?

Our view follows the consequence of the Tony Bland judgment. We believe that artificial nutrition and hydration are part of medical treatment. We used that as a guiding principle in the framework that we produced earlier this year for the withholding of medical treatment.

Reading the deliberations that you have had before, we sense a slight incompatibility in the evidence as it relates to nutrition and hydration. We draw a distinction between artificial nutrition and hydration as part of medical treatment and the giving of oral nutrition and hydration, which we see as part of basic medical care and which we think should never be withdrawn.

We define as artificial nutrition and hydration any method of giving nutrition and hydration that bypasses the swallowing reflex; in other words, any mechanical method. In providing the means to give artificial nutrition and hydration, one is undertaking medical intervention.

Do you accept the concerns of some of our previous witnesses that the inclusion of nutrition and hydration without a clear definition could lead to a withdrawal of that treatment and the hastening of death?

Section 44(2)(b) refers to

"ventilation, nutrition and hydration by artificial means".

We assume that that means the provision of nutrition and hydration by some mechanical means. We would not think that that includes oral nutrition and hydration. We are content with the wording of that section.

Your statement says that, unlike the courts in England and Wales, the Scottish courts have made clear that it is not necessary to apply to them in every case where withdrawal of artificial nutrition and hydration is considered. Do you think that the Scottish way is the better way?

The law lords in the Bland case made it clear that each case that you describe should go to court until a body of evidence emerged that might make that unnecessary. I must stress that they were talking about persistent vegetative state, which is a narrower clinical situation than we addressed in our recent document.

In Scotland, it is regarded as unnecessary to take cases of persistent vegetative state to court. We would argue that a sufficient body of evidence has arisen in England and Wales to avoid that need, and our recent document said that we do not think one should have to go to court in most cases in which a decision to withdraw life-sustaining treatment has been made.

We regard the framework that we have set up as being adequate to achieve the right consensus between the doctors and the family and we think that the courts should be involved only where there are significant and irresolvable differences between them. I think that the Scottish way is the better way.

As a practising doctor in Scotland who has been involved in this issue, I think that the solution is working very well in Scotland.

Your document suggests that, even before the bill is passed, the situation in Scotland is satisfactory. The doctor can offer or withdraw treatment, depending on his or her interpretation of the situation. Perhaps that suggests that you feel that this bill and these sections are unnecessary.

Although many areas of the bill address particular problems with much more clarity, we would not like to lose the pragmatic flexibility of the present legal situation in Scotland.

Will the bill allow that flexibility to continue?

We have to be very careful. It is up to the people drafting the bill to ensure that it does.

You have presumably read the bill that has been introduced in Parliament, as it provides the basis on which you are giving evidence today. Are you satisfied that nothing in the bill cuts across your present flexibility?

The bill admirably addresses the general concept of providing circumstances in which a doctor can initiate treatment for the patient's benefit. However, although the bill does not specifically address the issue of the withdrawal or withholding of treatment, doctors recognise that decisions about treatment might also include decisions that treatment should not be initiated or should be withdrawn. Our guidance about the framework in which such decisions are made is both robust and flexible enough not to require additional comment in the bill.

Some of our concerns about the bill are not so much related to the wording itself, but to interpretations that have been put on the wording in some submissions and committee reports. I have read that section 44(2)(b) of the bill effectively allows people to withdraw treatment. That does not seem relevant. The present situation could still hold if we stick strictly to the wording of the bill. I understand that section 44(2)(b) talks about the initiation of treatment, not its withdrawal.

The bill introduces the power of advocacy and the introduction of a third party. I am talking about the role of the courts. Furthermore, given your comments, I want to explore the wider aspects of the powers of the doctor. I am particularly concerned that, in your submission—

Can I make an intervention on that point?

Richard, you are down on the list. If you wait, you will get your turn.

I have a slight reservation about the suggestion in your submission that there is room for some experimentation or research without anyone's consent.

You raise a very important point. However, that is a slightly separate issue that touches more on concerns about research than about active treatment.

As for your first point, we have concerns about the role of the guardian or authority in a situation where such people may be at odds with doctors over medical treatment. As such, if the bill goes through without change, more limitations will apply than under the present legal position.

Can you clarify some points on the subject of nutrition and hydration? You said that the law as it stands allows the withdrawal of nutrition and hydration without petition to the courts.

Without necessarily petitioning the courts.

Okay.

On 3 November, Lynda Towers, from the Scottish Executive Office of the Solicitor, appeared before this committee and was asked whether hydration and sustenance withdrawal was possible under the bill. She said:

"If somebody seeks to withdraw nutrition and hydration, that will still have to be dealt with by petition to the Court of Session."—[Official Report, Justice and Home Affairs Committee, 3 November 1999; c 276.]

Do you want to comment on that?

Before I ask Bill O'Neill to respond, I should say that, if that is the interpretation, the British Medical Association in Scotland would have some concerns. The ideal would be to achieve a truly united response from carers, relatives and the patient, rather than to have to go through the trauma of taking cases to the Court of Session.

We should clarify the important distinction between artificial nutrition and hydration, as specified in section 44(2)(b), and oral nutrition and hydration, to which Dr Wilks has referred. We should also clarify that, to our knowledge, the court judgments have related specifically to patients in a persistent vegetative state. The provision to which Mr Gallie referred relates specifically to such patients.

Your interpretation seems to conflict with the one that we are getting from the solicitors to the Executive. Other witnesses who have appeared before us have their own interpretations of this provision. It is incumbent on the Parliament, and this committee in particular, to ensure that any legislation that we pass is robust and is not open to a series of interpretations. Can you think of a way in which the bill could be tightened up, or does it contain a fundamental flaw?

We do not think that the bill as it stands is flawed from a medical perspective. Our aim is to allow the doctor, the health care team and the relatives to find the best way forward in the interests of the patient. The framework that we have outlined, detailing the processes that should be gone through before a decision is made on whether to withdraw or withhold treatment, is designed to achieve consensus. It is geared towards the benefit of the patient and is intended to make recourse to the courts unnecessary. In Scotland, unlike in England and Wales, it appears that individual cases of PVS do not need to come before the courts. We would hope that, if the general principles of withdrawing and withholding treatment are applied to a wider group of patients who are similarly incapacitated—those defined as having no prospect of recovery—the same flexibility would operate within the health care team and the family.

We have a broader concern about what would happen if a doctor considered that a treatment was to the benefit of the patient and somebody in authority—a proxy or other appointed person—refused that treatment on the patient's behalf. We feel that section 47, in particular, may not contain enough protection for the patient, because the doctor who is deciding whether to respond to a refusal of treatment by a third party has to be satisfied if the proxy indicates that the refusal is based on their understanding that that is of benefit to the patient. We would like the proxy to have to provide more evidence to the doctor that they are acting in what the patient considers to be their best interests. At that time, of course, the patient is incapable of expressing a view.

The questions and answers so far have already homed in on the two subsections—sections 44(2) and 47(1)—that I wanted to ask about and that seem to be at the centre of the controversy. It is in conjunction, rather than separately, that they are controversial. The first issue is that, as many people have said, section 47(1) appears to give welfare attorneys or guardians the power to refuse ventilation, nutrition and hydration.

Yes, we agree that that section could be interpreted in that way.

The second issue applies to other forms of treatment. Do you think that the bill needs to be clarified on those issues, which seem almost to be taking over discussion of this legislation? Could not the bill be clarified so that the powers of welfare attorneys and guardians are made clear?

Given the discussion that is taking place across society—let alone in this committee in recent weeks—it is important to classify nutrition and hydration by artificial means as treatment, as the courts have done on both sides of the border. If your question is, "Are we in favour of retaining section 44(2)(b)?" the answer is that we are. It is important to clarify that definition.

But section 47(1) seems to say that it is the welfare attorney or guardian who will make decisions about ventilation, nutrition and hydration. Is that the basis of your concern, rather than the fact that someone should be making decisions?

No. A competent patient can refuse any treatment. It seems appropriate that a proxy for a patient could refuse that treatment. As Dr Wilks said, we are concerned that the proxy may not have to make clear the basis on which they are refusing treatment. However, we are happy with the subsequent subsection, which gives doctors the opportunity to apply to the Court of Session to overrule the decision of the proxy.

Am I right in saying that you do not think that the cases in which ventilation, nutrition or hydration can be withdrawn need to be written into the bill? A lot of the debate has been about persistent vegetative state, which is a controversial subject, but there are many points across the spectrum. Are you saying that the law is perfectly adequate on this matter? I understand where people are coming from when they criticise this bill, because it appears to open the gateway for a welfare attorney or guardian to make decisions about ventilation, nutrition and hydration outwith cases of PVS.

Whether the bill is perfect is debatable, but it is pragmatic and realistic. When we examined the withdrawal and withholding of all forms of treatment—including artificial nutrition and hydration—we realised that there was a vast range of conditions with a degree of incapacity and a degree of what you might call poor quality of life, in which there is no prospect of recovery and in which patients are incapacitated and cannot express their wishes. To draft legislation to cover the different clinical conditions that produce that state of incapacity would be extremely difficult. Moreover, it would probably tie the hands not just of the doctors but of the families and patients. That would not be in patients' interests.

I repeat our concern over the ability of a proxy to refuse all forms of treatment, including artificial nutrition and hydration, on behalf of an incapacitated patient without having to say why. Although we are happy that a doctor has recourse to the courts if there is a conflict over treatment, we would like legislation to reflect the need for the proxy to give good evidence to the doctor that the decision that they are making on the patient's behalf reflects the wishes expressed by the patient when they were competent. Such a requirement is missing from section 47.

Dr Wilks, it would help us if you could give us a couple of examples of the kind of evidence that you think should be provided to substantiate a welfare attorney's decision that treatment should not be given.

An essential form of evidence would be some form of advance directive that specified the refusal of areas of treatment. As you will be aware, the only type of advance directive that carries any weight in law is one that specifically refuses treatment. It is essential that doctors are bound by those directives, as long as they are confident about two things: first, that the advance directive was made when the patient was competent; and, secondly, that the circumstances in the advance directive apply to the circumstances of the patient.

Other forms of evidence could be statements made to other carers—such as a general practitioner, the family doctor or nursing team—when the patient was competent. That evidence would be important. Statements would not necessarily have to be written. For example, the family doctor could be called to provide confirmation of the patient's wishes.

There is a slight difficulty with that, of course, because advance directives have been specifically excluded from the bill, although I think it was originally proposed that they be built into it. Other organisations have submitted written evidence suggesting that, regardless of whether advance directives are given standing in legislation, they will become important in practice because of the way in which decisions will be reached about the ability of people with incapacity to make known their views. It seems that, in a sense, you are now confirming that view. Do you think that, regardless of whether the bill covers them, they will become important?

Yes. We think that a competent advance directive that contains a refusal of treatment is as important as a contemporaneous refusal and should be respected.

I have two points, the first of which concerns the proxy. Do you feel that the proxy has a sufficient liability in terms of his or her duty of care? Section 73 limits the liability of guardians, continuing attorneys and welfare attorneys, stating that

"for any breach of any duty of care or fiduciary duty"

they would simply have to have

"acted reasonably and in good faith".

Am I right in saying that you think that section 47 should contain an additional provision requiring the proxy to demonstrate that he or she is either acting on the wishes of the patient or is carrying out some action that is beneficial to the patient after obtaining a second opinion?

The framework that we have produced for the withdrawal of artificial nutrition and hydration requires that, in those cases, the doctor obtain a second opinion from someone who is not connected with the case but who has expertise in the area. We feel that that should be a given, because that is the clinical and ethical advice that we are giving doctors.

We are interested in the suggestion that proxies should be subject to a duty of care and should be able to demonstrate their responsibility. The BMA does not have a specific policy on that and has not discussed it, but we would certainly be interested in seeing how the duty of care could be reflected in a requirement on the proxy to demonstrate that he or she was acting in the patient's best interests.

We have been discussing very serious cases in which the withdrawal of treatment would result in loss of life. However, there are many other cases in which there may be a dispute between the doctor and the prime carer or proxy. We do not want such cases to go to court, so we must think of some mechanism that will ensure that there is further discussion before those cases reach that point.

We have had evidence from Alzheimer Scotland about the general treatment with drugs of patients with Alzheimer's disease. The Scottish intercollegiate guidelines network has certainly indicated that excessive treatment with neuroleptic drugs is relatively widespread. There may be some dispute about that, and I would like to know how we can promote the good practice that the BMA has talked about to make a resolution between—

Could you speed things up a wee bit, Richard? We are struggling for time this morning.

I would like to know how a resolution between the care team and the proxy could be established. That balance needs to be struck.

The BMA in Scotland takes the view that, given the powers that are now in the hands of the proxy, there should be a requirement on that person for some duty of care. You have forgotten to mention ventilation, a matter that has not yet been addressed. There can be acute situations in which artificial ventilation has to be instituted immediately. I hope that that is covered by section 44(6), which states that medical treatment can be given

"for the preservation of the life . . . or the prevention of serious deterioration".

However, I am not confident that it is properly covered, in view of the powers given to the proxy.

My other main concern involves the point that has been addressed by our colleagues in the Justice and Home Affairs Committee—the definition of intervention. Many things are defined in the act. Section 76 gives an interpretation of many of the terms and issues. Would you like that section to include an interpretation of intervention, to cover not only positive interventions but omissions and withdrawals? The whole question of intervention would then be more specifically defined.

We would accept a definition in which a decision to withdraw was regarded as an intervention as part of the general decision-making process in clinical care. We think that there is an advantage in flexibility; we would have some discomfort about defining an intervention too closely.

This has to be seen in an international context—we are one of the few countries without a clear definition of a medical act. That is both a blessing and a difficulty. I agree with what Dr Simpson is saying in principle, but it could lead to very complex legislation.

What would the impact of the bill as it stands be on the practical day-to-day work of an intensive care unit? What is the implication for doctors doing their job in emergencies—after road traffic accidents, for example?

I am often in that situation. It is important that the bill clearly covers that situation in the same way as the principle of necessity in England does. Otherwise, as we have heard, various interpretations will be made; in an acute, life-threatening situation, it must be possible for immediate treatment to be given even if guardians, proxies or relatives are unavailable.

First, what if someone had made an advance directive and advances in medical science are such that the decision that they made in the past has been overtaken by treatment, now readily available, that could perhaps bring them back to a good quality of life? Secondly, how—briefly—would you define a medical act?

I have debated in several European forums the definition of a medical act; the concept is extremely difficult to define. I will say no more, as I do not want to detain the committee longer than necessary.

We share your concern about advance directives, which is why we are not arguing that they should be included in the legislation. As you say, things change and it is difficult to envisage an advance directive that could be sufficiently comprehensive to be always valid. We would argue that any advance directive should be taken into account, however.

I am thinking of cases in which, in the past, we did not have the same knowledge of drug treatments. Is there any study that could prove conclusively that treatments will be of benefit to patients?

There are numerous examples of treatments having moved on since the person made the advance directive. That may be over a period of three or five years, rather than 10, 20 or more years. For that reason we would not want advance directives to be enshrined in legislation. We must be able to offer an interpretation that the person had made the advance directive at a particular point in time, with a particular understanding and with access to particular treatments, which, as you say, may have changed with time.

Am I right in thinking that what you are looking for from proxies and attorneys is responsible decision making?

Yes, very much so. Given the powers that they are being given under the bill, it is very important that they have a duty of care that is enshrined in statute.

Will members make their questions as brief as possible?

You say in your submission that section 48 appears to rule out any research that does not directly benefit the incapacitated person. Do you believe that research should be allowed that is not contrary to the interests of the incapacitated person? There is quite a difference there, so could you explain your thinking?

We have concerns, which have been addressed.

As it is currently drafted, we believe that section 48 would inhibit research that is unlikely to produce real and direct benefit to the adult, according to section 48(3)(a). Someone who undertakes a research project that is unlikely to produce real and direct benefit to the adult should perhaps not be doing the research in the first place. However, limiting research to the subject alone restricts research that would help to examine the condition as well as the individual. We are unhappy about that. Such research need not be intrusive; it might be record based or minimally invasive.

We are also unhappy about the final three words in section 48(3)(f), "adult's nearest relative". The concept of involving a close relative is not present in the aspects of the bill that deal with consent or the withdrawal or refusal of treatment. We are unhappy that an adult's nearest relative is written into the process in some parts of the bill, but not in others. We are not quite sure why relatives are mentioned there.

My third point is about the ethics committee, which is dealt with in section 48(5). We fully support the involvement of local ethics research committees. We assume that the purpose of section 48(5) is to set up a new committee specifically to consider the question of research and incapacitated adults, but we would like clarification on that.

You make a presumption that the new bill will allow welfare attorneys to give consent to the use of organs or tissues on behalf of other patients. What did you have in mind?

Do you mean for transplantation?

Yes.

I would have thought that that would be perfectly appropriate in that situation, but occasionally the time scale can be a problem.

In your submission, you say that you presume that such consent will be allowed. Would you like something to be written into the bill that confirms that that is the case?

Off the cuff, my answer would be yes. That would be helpful for transplantation.

Are you concerned by the fact that there is no recognition of partial incapacity or assisted decision making in the bill? The Millan committee aims to redefine what is set out under the Mental Health (Scotland) Act 1984. Are you concerned that we may be left with an all-or-nothing situation if the new definitions do not take account of partial incapacity?

As we said in our written submission, we feel that the bill tends towards a functional definition of incapacity. Incapacity may vary over quite short periods of time for an individual or may vary for particular decisions. Someone may be capable of making a decision on one issue, but not on a more complex issue. We feel that the bill allows for that interpretation.

There is a slight problem with the bill's failure to clarify the concept of short-term incapacity. Short-term incapacity is very common; it can be seen in accident and emergency departments throughout the country every Saturday night. [Laughter.]

Richard Simpson brought up the duty of care. I have concerns about the limitation of liability in sections 73 and 74 in part 7 of the bill. There is no onus on the carer or proxy to go beyond the need to be reasonably satisfied that they acted in the best interests of the adult. There is no compulsion or responsibility for individuals to seek advice or to make informed decisions. They must only satisfy themselves that they have acted in accordance with part 1, which obviously is a less stringent level of responsibility than for a clinician. Are you concerned about that? Do you think that we should insert a recommendation that there should be a duty on the carer or proxy to make more of an informed choice?

The only thing that we want to add to what has been said already is that we feel that that section was written with financial and other affairs in mind, rather than issues of medical treatment and welfare.

Except that it would be perverse if the person making a decision in conflict with that of the medical adviser was working at a lower level of decision making.

That will nearly always be the case, though.

They might be on a different level in regard to clinical assessment, but they might have a lot to contribute on an assessment of the patient's wishes because they are close to the patient or are aware of the case. Our point is that that information needs to be offered in evidence to back up the refusal.

Do you see trials using placebos being excluded or included by this bill?

As it stands, it is conceivable that they could be excluded. We would like them to be included, after the approval of a research ethics committee, and bearing in mind our interpretation of the clause that refers to a special ethics committee relating to those with mental incapacity.

Earlier, when talking about section 44(2)(b), you mentioned advance directives. At present, how few have those advance directives? Tragically, a large number of young people are brought in with severe head injuries. Young people, quite properly, do not think about the possibility of their dying. Roughly how long does it take someone to die after the withdrawal of artificial hydration and nutrition?

The second question is impossible to answer. It depends on other conditions that the person might have.

Many of the submissions we have had—and most of the submissions have been about section 44(2)(b)—have mentioned that it might take up to a fortnight for someone to die. Is that correct?

That is sometimes the case, but the implication of the way that the statement is made is that those patients are in some way being abandoned. The doctor might foresee that the withdrawal of nutrition and hydration will result in the patient's death, but that does not mean stopping all palliative care, sedation or the treatment of symptoms. The process of dying is important to the management responsibilities of the doctor, and the nursing team is central to that.

I suspect that the point behind your question is that doctors might make decisions about intentionally killing patients by withdrawing nutrition and hydration. The point that we made in our document, "Withholding and Withdrawing Life-prolonging Medical Treatment", is that a decision might be made that treatment such as artificial hydration is no longer giving a benefit to the patient and should therefore be withdrawn. The primary intention is not to kill the patient, but to withdraw a treatment that is no longer of benefit.

Yes, but the patient will die, of course.

To return to my first point, how many people come to hospital with any kind of indication that they have made a decision that, if they are in a terminal condition, they want treatment to be withdrawn?

I am not aware of any direct research into that but, in my experience, it would be extremely unusual for someone to arrive in hospital with an advance directive. In the acute sector, to which you referred, such a thing would be of extremely little practical benefit.

And in the long-term sector?

That is different. If it became normal practice to have an advance directive, the practice would expand. At the moment, it is not a major influence.

I thank the witnesses for their patience with the questions. If you have the time, you are welcome to stay on and listen to the evidence from the other witnesses. We expect to take evidence until about quarter-past 11.

Will the witnesses from the Royal College of Nursing please introduce themselves? One of the witnesses will give a short opening statement.

I am Alex McMahon and I am the adviser on nursing policy for the RCN in Scotland. My background is as a mental health nurse.

I am Rea Johnston. I am a member of the RCN and a teacher of nurses at Napier University.

I will make a brief statement. The RCN supports the overall purpose of the bill and recognises that this is an extremely difficult area that presents legal, clinical and ethical problems to all those involved. We are grateful for this opportunity to explain to the committee the distinctive role that nurses can and should play in caring for those who are incapacitated.

There is a perception that an instruction that is given by a doctor absolves nurses of any responsibility. That is not the case. We suggest that the phrase "medical treatment" be replaced by the phrase "clinical treatment". "Clinical treatment" more accurately reflects the input of each member of a multidisciplinary team. There is a basic standard of nursing care that all patients, regardless of their condition, are entitled to. We oppose any measures that would make it possible for a patient to be denied that level of care.

We will go straight on to questions.

I was going to raise those two points with you. Can you expand on your call to change "medical treatment" to "clinical treatment"?

"Medical treatment" is an outdated concept. There are many professionals other than doctors who are directly involved in assessment of and delivery of care. The use of the term "clinical treatment" would recognise that. Nurses have a distinctive role to play in assessing and delivering care to every patient.

You mentioned the basic level of care that every patient should receive, regardless of their condition. Your submission indicates that there is concern about the possibility of basic nursing care being withheld. What would you like to see being tightened up to ensure that that cannot happen?

There is concern that continued use of the term "medical treatment" will result in nursing care being included in that definition. If a decision was made to withdraw medical care from a patient, nursing care might also be withdrawn. As far as we are concerned, every patient has the right to receive basic nursing care regardless of their condition.

Is that within the terms of your code of professional conduct?

Absolutely. At all times every nurse works to the code of conduct that is laid down by the statutory body, the United Kingdom Central Council for Nursing, Midwifery and Health Visiting. Nurses must at all times work for patients' interests.

If the bill stands as it is, is it possible that nurses who were instructed not to carry out that basic nursing care would have to decide between their code of professional conduct and the provisions as laid down in the bill?

That is a good question. Nurses must at all times act according to that code and in the interests of patients. You would not find a nurse in the country who will stand back and not deliver the most basic level of nursing care.

Is there the possibility that the bill as it stands might create conflict for nurses between what they are required to do in terms of their own code and the requirements that are set out in the proposed bill?

Absolutely. That is why we ask for the phrase "clinical treatment" to be used rather than "medical treatment".

Paragraph 6.1 of your submission seems to indicate that you are worried about the withdrawal of life-sustaining measures. You say that hospital practice does not seem to be following legal principle, which is at odds with what the BMA has said. Can you expand on that comment?

Our solicitors in Scotland, Anderson Strathern, have brought to our attention that, at the time of the Law hospital case, a number of patients were in a persistent vegetative state similar to that of Janet Johnston. We are concerned about what action has been taken with those patients following that court decision.

Although I do not want to set you at odds with the BMA, do you prefer what has been described as the English practice, in which the court will always be involved in such decisions, instead of the more flexible Scottish practice?

In order to act in the interests of patients and to protect professionals involved in the delivery of care, we want to ensure that those professionals are acting within the law and are not liable to prosecution if their actions are detrimental to patient care.

So you are more worried about the legal responsibility of nurses than anything else?

We are worried about both aspects. Although our job is to ensure that nurses act at all times in the interests of patients, at the same time nurses must protect their own professional status.

I appreciate that you have had particular legal advice that suggests that the current practice in Scotland ought not to be happening. However, the issue of legal advice aside, would the RCN prefer to continue with the reality of a flexible approach instead of imposing on the system an insistence that every case must go to court?

That is a very good question. Every case should be taken on its own merits and decisions should be based on the patient's needs and on whether we are acting in their best interests at the time.

So, although you agree with the BMA, you are concerned about the confused legal position in which nurses find themselves at the moment?

Yes.

That is a slightly different issue. I am sorry, Maureen—I butted in. Do you want to come back in?

In paragraph 8.1 of the RCN submission, you say that death should be "peaceful and dignified". Obviously that is in connection with PVS patients. Do you think that you can give people a peaceful and dignified death if artificial means of nutrition and hydration are withdrawn?

Yes. Nurses are skilled professionals and their care would ensure that patients' dignity and comfort are maintained. We hope that, in the appropriate circumstances, pain relief would also allow for a pain-free death.

As many of my questions have already been asked, I will just raise a few brief points. Is there a clear-cut division between a doctor's responsibility and a nurse's responsibility? Are there any grey areas between medical and nursing issues?

Nurses are trained to assess patients for nursing interventions and to follow out medical prescriptions. However, they are also responsible for assessing whether to go ahead with medical prescription if a patient's condition calls that into question.

Does that mean that you refer back to the doctor daily?

Yes. If any nurse thought that any prescription should not be carried out, they would report that to the doctor for a review.

I heard what you said about the rights of the attorney in respect of the code of conduct. Do you have any suggestions about how to include such principles in the bill?

Steps should be taken to ensure that welfare attorneys take sound advice from the professionals who are directly involved in the delivery of care at that time—perhaps from two people rather than one.

What is the status of the professional code of conduct?

It is legally binding.

I would like you to clarify something in your submission. The word "benefit" is used in the bill, but you suggest that the term "best interests" be reintroduced. What is the difference?

You also suggest that the term "medical treatment" be replaced by "clinical treatment"; What would be gained by that change?

A large group of people have come into the public gallery. I understand that they are prison officers from the demonstration that I mentioned earlier. I remind committee members that at our next meeting we will take evidence from Tony Cameron, the chief executive of the Scottish Prison Service, and from the trade union side on yesterday's announcement. More prison officers may come into the gallery, so members may hear a little noise.

Using the term "best interests" would benefit patients where, for example, a confused patient is in a ward with doors to the outside. It may be that a nurse decides to lock the doors. In that situation she is acting in the interests of the patient, who may be so confused as to wander out and harm himself or herself. Obviously, that is not of benefit to the patient, because they are being denied access to the outside, but the nurse is trying to limit any danger that may come to that patient.

Do you feel that retaining the word "benefit" would exclude that form of care?

The individual needs of the patient must be considered. At times, acting in the best interests of the patient might not be of benefit to the patient.

I want to allow you to put on record your concern that the assessment of incapacity is currently, in effect, being left to doctors. It is your view that there should be nursing input, because in some cases it may be nurses who have had most contact with patients. Also, the BMA has expressed to us its wish to see specific evidence in support of any welfare attorney's decision that treatment should not be given. Can you elaborate on those two points?

In our submission to the Millan review of mental health legislation, the Royal College of Nursing asked that nurses be considered for mental health officer status. We did that because nurses deliver 80 per cent of patient care and are in a good position to identify what patients require. Often nurses cannot readily get access to a doctor or social worker; if they had mental health officer status, they could instigate the process of assessment. I do not say that every nurse would fit the criteria—the competency of the nurse would be a factor—but there is scope for that measure.

In your written submission you identify with the position of the BMA on the issue of evidence for not applying treatment. Do you have a view about what you would expect to see as evidence in support of such an instruction?

We would hope to put in place a mechanism to ensure that anyone acting on the patient's behalf, if outside a professional field, takes soundings from the professionals who are directly involved in the delivery of care, and that that advice is considered in planning any further treatment for the patient.

That was not quite the point. You make a specific statement in your submission:

"With the right to withhold consent, the welfare attorney or person authorised to intervene has a power which is not sufficiently counterbalanced."

You are concerned that the bill sets out no criteria for the parties or the court to apply when resolving differences. What, in your view, would make things more balanced?

We would like to see direct involvement with the professionals providing the care, but a mechanism should perhaps be in place to ensure that a balance is reached in making the decision.

I would like an answer to my second question, as to why you want "medical treatment" replaced with "clinical treatment".

This next question follows on from Roseanna's point. In paragraph 5.2 of your submission, you say that

"a welfare attorney who exercises his or her right to withhold consent to medical treatment would also have the ability to differentiate between different types of treatment."

Are you saying that the welfare attorney would perhaps not be sufficiently knowledgeable on medical treatment to make decisions?

Rea could perhaps pick up the first point, on "clinical treatment".

We thought that the word "clinical" could be used in section 44 of the bill, so that, as we have stated before, no nursing care is omitted by default. The nurse's accountability would be taken into consideration. Section 47 talks about the welfare attorney. That person would be able to refuse consent for medical treatment. "Clinical" could be used to designate overall care, but if somebody wants to intervene and stop treatment, they would be discontinuing medical treatment, not omitting by default some basic care necessary for patient dignity and a reasonable death.

Are you saying that the attorney would not have adequate knowledge and would not be able to make such decisions?

That is possible, but, in our opinion, our proposal would safeguard the patient.

So you feel that clinical judgment should overrule any decisions that an attorney might wish to make?

No. We are saying not that attorneys' decisions should be overruled, but that clinical judgment should be considered if the attorney does not have the expertise.

If subsection 44(2)(b) was passed with no alterations, do you think that there would be a considerable increase in the number of cases in which artificial feeding or the provision of fluids is removed?

I do not think that I could answer that question at this time.

I gather from your evidence—correct me if I am wrong—that it is the nurses who spend most time with the patients, but who are most excluded from the process. The doctors may not see the patient often, but they have a major decision to make, as do the welfare attorney, relatives and others. Is your main concern that nurses should be involved in the decision?

Absolutely. We are calling for parity among professionals on decision making.

I am also concerned that nurses may feel that they will experience more stress because of such withdrawals of treatment. Is that also one of your concerns for the profession? Some cases must be stressful at the moment.

I take your point, but the same thing applies across the professions. Doctors and physiotherapists also experience stress when dealing with patients who are in a persistent vegetative state. We want to ensure that everyone is working in an environment with which they are happy, and that they are not being unnecessarily exposed to stress.

At the end of the day, it would be the nurses who had to see the patients through the 10 or 14 days—or however long it took them to die—following the withdrawal of fluids and artificial feeding.

Yes.

We have tended to concentrate on part 5 of the bill, but part 4 would also have a significant effect on nurses. It refers to the management of patients' or residents' finances in residential or nursing homes. You have already indicated the importance of patient-nurse relationships. Do you have any concerns about nurses being caught up in the effects of part 4?

For quite a number of years, nurses have been responsible, at ward or nursing home level, for the management of patients' funds. In the case of incapax patients on psychiatric wards, for example, the charge nurse often has the responsibility of ensuring that some of their money is spent in the interests of the patients. That is sometimes, perhaps, an inappropriate burden to place on nurses.

Has your organisation considered the implications of part 4, or would you like to come back to us after having considered it further?

I think that I will take the opportunity to come back to you at a later date on that one.

Would the RCN be in favour of proxies being given a duty of care, along with the other professionals who are mentioned in the bill?

I am sorry, I am not sure. How would that work?

They would have a duty, for example, to seek and to take medical and nursing advice. At the moment, proxies are required only to act in the interests of the patient. If they were given a specific duty of care in the same way that professionals are, would that go some way towards allaying some of the concerns over the withdrawal of basic nursing care, for example?

We would like attorneys to take advice from professionals. I might add that in practice, and certainly in my experience, the best decisions are made when relatives—or next of kin—and professionals take decisions together.

Thank you very much. That concludes the evidence from the Royal College of Nursing. As a result of some of its evidence, I wonder whether I could ask someone from the British Medical Association to come back in on the issue of nurses' involvement in the decision-making process. The RCN made the point that nurses should perhaps, when decisions are being made on who is ultimately responsible, be given a more explicit role. I saw Dr Wilks nodding his head at one point, so I thought that it would useful to get the BMA's view on record.

There have been some unfortunate disagreements that have gone as far as either the General Medical Council or the courts. Part of the background to the disagreements has often included some confusion between doctors and nurses in the health care team. We have made it absolutely explicit that the process leading to, and the decision to withdraw or withhold, treatment, should be consensual among doctors, nurses and the family. We also understand clearly that when a decision has been made to withdraw or withhold treatment of any type, it is primarily the nurses who have to pick up the consequences of that decision for short-term or long-term nursing.

Once a decision has been made to withdraw or withhold artificial nutrition and hydration and the death of the patient is foreseen, it is important to note that the focus of the care changes from maintaining the patient in their condition to managing, as compassionately as possible, the process of dying. That puts different responsibilities on the nurses which are unique to their profession and do not necessarily involve the doctors to any great degree.

So your view is that this is and ought to be a team decision, rather than one person laying down the law?

Yes. We would be unhappy with a one-person decision. They tend to be wrong.

Thank you for coming back before the committee.

Our next witness is Professor Sheila McLean from the University of Glasgow. I see her sitting at the end of the row, which may not be the best place for her to sit while giving evidence. Perhaps she could move forward.

Thank you for coming, Professor McLean. You have been listening with interest to the evidence that we have heard so far. I hope that you have also had an opportunity to examine some of the evidence that has already been submitted to us in respect of the bill. From that, you will know which aspects of the bill have given witnesses and members of the committee cause for concern. We want to hear from you because it seemed appropriate that, in your capacity as a professor of ethics, you should be given an opportunity to comment on some of the difficult subjects that are being discussed. Perhaps you would like to take two minutes to make a short statement, before we go to questions.

Thank you. I am actually professor of law and ethics in medicine, which is a pretty cumbersome title. I mention that because my background is in law—I am not a health care provider or purely an ethicist.

I had not intended to make anything approaching an opening statement, but perhaps I can give you the lawyers' view on the current position in Scotland in respect of the withdrawal of nutrition and hydration. I sat through the Janet Johnston case and was present for the final judgment. My understanding is that individual cases do not need to be brought before the Scottish courts—in other words, that the decision can be left to the clinicians. On the other hand, immediately after the Law hospital decision, the Lord Advocate said that he would guarantee not to prosecute doctors who were involved in removing nutrition and hydration only if the Court of Session had authorised them to do that. That is slightly different position from the one that people had assumed.

My interest in the bill has been spiced by what I have heard this morning, and I wonder whether I may ask a question. It is my presumption that the main intention of the bill is to close a legal loophole that left nobody authorised to consent to treatment on behalf of an incapacitated adult. If that is the case, it seems to me that a number of the points of difficulty that have been raised are not relevant. This is a bill that confers positive powers. If section 47 is read in the light of the conclusion of section 44(1), which refers to the

"authority to do what is reasonable in the circumstances to safeguard or promote the physical or mental health of that adult",

some of the concerns that have been expressed in the media and outside this chamber should be assuaged.

That is the view that most of us held prior to taking evidence. Our difficulty is with what one might call the law of unintended consequences. We all know of pieces of legislation that have become subject to interpretations that are at odds with what was originally intended by them. We have heard a number of witnesses express concern about the possibility that that might happen with this bill. I know that this is rather like crystal ball gazing, but that is why we go through the process of taking evidence.

From the evidence that you have seen, you will know that certain organisations have raised specific concerns relating to omissions as opposed to acts. Members of both the Justice and Home Affairs Committee and the Health and Community Care Committee would find it useful if you could comment on any potential unintended consequences of the bill. From the text of the bill—leaving aside its stated intention—and from the evidence that we have been given, do you believe that those concerns are justified?

My impression from the evidence that I have seen so far, and from the bill, is that it is remarkably clear. When the Scottish Law Commission report was produced I had hoped that the Scottish Parliament would be enabled to look at advanced directives and at the distinction between acts and omissions, which, in my view, is a distinction without a difference in legal terms. The bill is clearer than it might have been because those issues were excluded from it. That allows people to focus on what the bill does, which is to supplement common law capacities with a statutory basis.

Several witnesses have encouraged us to look at introducing a duty of care for the proxy or welfare attorney. What do you think about that?

I understand why that is being suggested and the intention is good, but it would create legal difficulties. We have no tradition of a duty of care between individuals and the community, as opposed to between the individual and those with a professional responsibility to them. For example, we have no duty to rescue; it is against the law to commit an assault but not to fail to prevent an assault from being committed. To impose on an individual, non-professional person an equivalent to the duty of care expected from professionals would be to create something novel. It could be difficult to impose because it turns our legal tradition on its head. It would be extremely difficult to enforce—what would you do if the person failed? With groups that have a duty of care, such as doctors and nurses, there are sanctions available if they fail in that duty, either through litigation or through their professional associations. I do not know who would implement or deal with a breach of a duty of care in an individual.

Apart from it being an onerous duty to take on the power of attorney, particularly if we introduced an additional duty of care, are you saying that there are legal consequences for that person? Could it mean they would be open to litigation by other parties who felt that they had made a negligent decision?

I am not sure on what basis you could challenge them because a proxy decision maker could always say that they had acted in good faith. All the evidence is that proxy decision makers get it wrong more often than they get it right, but that they do so in good faith. To give a duty of care to an individual would make significant inroads into an established legal process for little gain. Those who believe that a duty of care is important might decide that they would rather not act in that capacity. Equally, there may be those who think that it does not matter because all they have to do is say that they acted in good faith—how would you prove that they had not? That is especially difficult since they are not in a professional role.

Where should a final decision about medical treatment lie: with the medical professionals or with the proxy?

If there is a dispute between the proxy and the health care professionals, the courts should be involved. I would say that about any decision that makes an avoidable death unavoidable—for example, by withdrawing nutrition and hydration. We should not be hesitant about taking such a decision to court because it is much more than medical; it is a matter of human rights.

We have been concentrating on the medical and care aspects of the bill. My original understanding of the bill was that it was to look at the life management of individuals and to move away from the costs of curators bonis to give individuals the right to manage an incapable adult's affairs. If you have had a chance to look at the other parts of the bill, do you feel that it achieves its original aims and have you any concerns?

I have not been able to consider the rest of the bill in much depth. I had a look at some of the stuff on guardianship and wardship. It seemed to me—and I am not an expert in this area, so I am reluctant to say anything—that the bill tackled fairly head-on the problems that the Scottish Law Commission, among others, identified. Those problems concerned the lack of accessibility to certain kinds of protection, through either cost or time delay. In the little that I saw—and speaking as a non-expert—the bill seemed to me to deal with those fairly clearly and well.

So, you have not really analysed the detail of other parts?

No.

All the examples that have been given today have been based on the scenario in which a doctor wants to give medical treatment but the welfare attorney or guardian does not want that treatment to be given. What is the situation if the reverse happens—if a doctor wants to withhold treatment and the relative, or whoever it is, wants it to be given? That would include decisions about hydration, nutrition and ventilation. Do you think that the bill will alter the situation, in those circumstances?

My understanding of the current legal position is that no doctor or other health care provider can be obliged by anyone else to provide treatment if doing so is against his or her professional judgment. The existence of another person with some kind of authority would be insufficient to override the clinical decisions of the health care providers.

The paradox is that, if the reverse happens and the doctor wants to give the treatment but the other proxy person—a spouse or another relative—does not want it to be given, the doctor's views would, in most circumstances, override the other's. One of the things that concerns me is the extent to which the bill appears to be trying to give considerable powers to relatives. I have two concerns about that. First, this is a novel situation in law, as that is the kind of problem that is being tackled. Secondly, people have traditionally misunderstood the role of relatives in the provision or refusal of consent. Unless we spell that out clearly, that kind of misunderstanding might be perpetuated.

Organ donation is the clearest example. Although the legal position is that somebody has said in advance that they want their organs to be removed or there is no reason to believe that they would have objected to it, it is still practice to invite relatives to comment on whether organs should be removed. That is perhaps a humane thing to do, but it is the result of a fundamental misunderstanding of what the law requires. We must clarify exactly what powers we are handing over to relatives. There might be confidential information that clinicians would otherwise not want a relative to know, which they might have to disclose if that person has a significant power.

Your second question was about the extent to which the bill, if enacted, would change current practice. My suspicion is that its terms fit quite clearly into what doctors and nurses already think of as good practice. Practice may not change dramatically, but the bill might provide health care workers with the reassurance that what they are doing is lawful as well as good practice. That is something that people have felt has been missing for some time. I do not imagine that there will be radical changes in practice, but I would like to think that health care providers will feel more comfortable, and that they will be working within a framework that they understand.

I would like you to clarify the position. We are all agreed that, in the bill, the welfare attorney or guardian will have a significant power in the withholding of treatment. Are you saying that they will have no powers in demanding treatment, including hydration, nutrition and ventilation?

Yes. The only case law that I know of concerns a couple of English cases, in which the Court of Appeal moved as far away as it could from saying that anybody could force doctors or nurses to treat individual patients. I have every reason to think that the Scottish courts would take precisely the same attitude.

The answer is yes, you may give somebody powers to make less than life-threatening decisions, and you may give them powers to agree in circumstances in which no one else could. However, unless the common law is breached, you are not passing on to the guardian or welfare attorney the power to compel clinicians to treat.

I have two questions. You pointed out to Pauline McNeill the difference, in some situations, between doing something and doing nothing—if one assaults someone, it is a crime, but if one stands by and does nothing, it is not. In the context of omissions, in particular, and of withholding treatment, you said that, as far as you were concerned, there was no distinction between an act and an omission. Could you explain that concept further?

Certainly. It goes back to the example that I gave. The relationship between individual members of the community is such that there is a clear distinction between an act and an omission. That is the legal order—one is not obliged to go to someone's aid, but one is obliged not to harm them. The difference with a professional relationship is that the nature of that relationship establishes a duty of care, the core content of which is that one is as responsible for one's omissions as for one's acts. Out on the street, there is a difference between acts and omissions, whereas in the peculiar nature of the professional's duty of care to the client or patient, an omission is as culpable as an act. That has been the legal position for a long time.

So a doctor is no more entitled not to do something as he is to treat wrongly.

Absolutely. If the doctor—or nurse—failed to provide treatment in circumstances that were subsequently challenged, their omission to provide the treatment would be just as culpable, if it were negligent, as an act would be.

My other question, which may be personal only to me, relates to what one of the doctors said earlier. He said that as a person could refuse treatment—which is right—it would be reasonable for a proxy to refuse treatment. I instinctively drew in my breath at that, as I was not entirely at ease with that statement. Obviously, I can refuse treatment, as I am an awkward, bolshie human being. Regardless of whether it is in my interests to do so, I might just say, "Who cares?" That is my right—as the play says, "It's my life." However, the idea that a proxy would have that power and that one could equate the two positions left me feeling uncomfortable. Do you have any views on that?

Yes, I share your view. The proxy, in any event, is not being asked the same question. You would ask yourself, "Do I want this treatment?" You might not, because you might want to go to a party tomorrow night and the treatment would get in the way. The proxy is not asked that question—the proxy is always asked to act in the best interests of, or for the benefit of, the third party. It is not the same decision. You are entitled to deny your best interests and no other person can be given that power. You can say, "I know it's in my best interests to avoid this party and get this treatment, but I do not choose to do that." No other person can be given that power over your life and treatment.

That brings us back to the definition of the proxy's duty of care, which is what I find difficult.

As I said, I understand that the proxy—or whatever that person is called—will fill the gap that existed in law, which was that no one could make a decision for an incapacitated adult. The proxy is being offered a limited range of decisions—inevitably, as there are some issues that they could not decide—or a limited opportunity to act in the best interests of the incapacitated adult. Almost certainly, that decision would almost always be to accept recommended medical treatment. The bill puts the health care provider in a safer position legally, because they will know that the proxy has some authority. It also allows the person who is incapacitated to receive treatment that otherwise they may not have been able to get. I see that part of the bill as a positive provision of authority rather than a negative removal of treatment.

Professor, you will have heard my question to the BMA on the limitation of liability in section 73 of the bill. I want to return to the point about duty of care. Would you be satisfied that that limited liability puts enough pressure for the person responsible to be informed, to their satisfaction, about the benefit to their charge of any intervention, as under section 1(2)?

Again, I have sympathy with the concept but, pragmatically, I cannot see how any more of an imposition could be made on people's good faith, which is what one has to rely on in institutionalising proxy decision making.

I do not see how we could create an additional duty of care. Oddly enough, the best safeguard is to ensure that only some people are entitled to be proxies. Some problems could be screened out before people are given authority. I am not clear on how much more could be done.

Could one ask for a second opinion?

One could certainly ask for a second opinion.

A relevant question that we have not touched on is who decides that a person is incapable. People have quietly accepted—the bill certainly seems to accept it—that the decision on whether somebody is incapable for these purposes is made by the clinician. I suggest—this relates to the issue of a second opinion—that there are fine decisions to be taken about incapacity. Some decisions are obvious—for example, when the patient is unconscious. Other patients, as my colleague from the Royal College of Nursing mentioned, may have capacity in some areas but not in others. Radically, I think that lawyers and not doctors should decide on capacity in grey areas, as incapacity is a legal, not a medical, concept. It might be that, to ensure that a decision is properly reached, one would want to take a second opinion from somebody who did not come from the health care professions.

Are you saying that there is no way of putting a safeguard on the actions of a proxy?

I cannot think of any way that would do more than allow us to make the presumption that the person is acting in good faith. If the doctors or nursing staff who are in charge of the patient felt that a decision was manifestly being taken in bad faith, or directly in contradiction of the patient's best interests, they could pursue the matter through current common law—a decision could be challenged.

That could be a lengthy and impractical option.

Yes, it could be.

On that issue, would it be sufficient in the guidance to require the proxy to seek further advice or to demonstrate evidence to back their decision? We have to find some midway course. I think that I accept that a duty of care would not be appropriate, but we have to find some way of putting a greater onus on the attorney than is allowed under the bill at present.

I understand the intention, but I find it difficult to imagine how that could be done. A lot of these issues are heavily dependent on good faith. I know of no test to discover in advance whether someone is likely to act in good faith.

We know that proxy decision makers are pretty inaccurate. Most of the research on this subject has been done in the United States. If the person who has appointed the proxy is asked what they would want their proxy to say, and then the proxy is asked what they think that the person would want them to do, the evidence is that there is very little congruence between the two views. Some surveys suggest that the incidence of congruence is no greater than chance. The same often applies to what the doctor thinks that the patient would want and what the patient would actually want, so we are scuppered there.

Other legislation has the notion of good faith built in—abortion legislation requires people to testify in good faith that, for example, they have a conscientious objection. Even in such cases, however, the law requires only a statement on oath that a decision is made in good faith. I cannot see how the law could be made any more rigorous for a proxy decision maker, although I understand why you might want it to be.

You have certainly increased rather than reduced my anxiety.

Do you have any comments about research in relation to the European Convention on Human Rights and Biomedicine, to which, I suspect, we will sign up? Do you think that it should be incorporated?

I rather like the way in which the section on research is phrased. However, my medical colleagues have some difficulties with it, because they believe that it will limit research. The section is much closer to the Nuremberg code—the initial international agreement about the use of human subjects in research—than it is to the Helsinki declaration, which is the principal ethical guidance nowadays and which permits proxy consent for research. I think that I am right in saying that the Helsinki declaration does not even outlaw non-therapeutic research. The Nuremberg code, however, makes it clear that someone can be involved in research only if they can give free and informed consent. The partial move towards allowing research in circumstances in which the individual is unable to do that is a reasonably satisfactory compromise between the absolute position and the need to find ways of improving diagnosis and treatment.

Do you feel that that would allow, for example, genetic research with minimally invasive procedures and randomised, controlled trials with a placebo?

Only, I would have thought, if that was justified in the circumstances or if the person had been capable of giving consent. The genetic issue is more complicated, because for the moment—as you are almost certainly aware—it seems that people are being extraordinarily cautious before allowing any kind of genetic research to be done. I would have thought that the sensitivities of genetic information were such that the terminology in the bill would not necessarily permit it. It would depend what is meant by risk or minimal risk. If risk is the disclosure of confidential or private information, for example, through genetic information, that would not be a minimal risk in anybody's terms. I know that the language in the bill has been chosen fairly carefully, but I am sure that there will be difficulties down the line in interpreting what is meant by minimal risk.

My first point is on research. Section 48 appears to rule out any research that does not directly benefit the person with incapacity. The British Medical Association said that it would prefer the section to say that the research would not be contrary to the interests of the incapacitated person. There is a clear difference. Would you come down on the side of the bill, which says that research must be of direct benefit to the person with incapacity?

Yes, I would. The concept that the BMA favours is becoming popular, for good reasons. In the context of research, however, I would still err on the side of caution. The bill should at least contribute to minimising the number of incapable people who are involved as research subjects, even though I understand why research needs to be done and the benefits for patient care that it may lead to. The provision represents something close to a balance—it will satisfy neither the extreme human rights view nor the clinical view, but it is somewhere reasonably in the middle.

Thank you. I have one other point of clarification. You threw in at one point your view that you would like a decision on incapacity taken not by the doctors and clinicians but by somebody independent—a lawyer, for example. We have not had ample opportunity to explore that. You probably heard the evidence from the Royal College of Nursing, which would like the involvement of one person who is independent from the hospital institution or the day-to-day care team. Would you see that as a compromise? Would it satisfy you that an independent person would be involved as well as the clinician, or do you hold to your view that the decision should be taken out of the hands of the medical profession completely?

As I said, in some circumstances it is quite clear that there is an incapacity, because it is temporal—it is about loss of consciousness. The biggest problems arise when the decision about capacity or its absence is taken in respect of somebody who is conscious. This is going to sound very cynical, but the question of somebody's capacity to accept—or refuse—medical treatment will arise only when the person does not want to accept the medical recommendation. The same is true with children. That is the point at which health care providers start to say whether a person is competent.

Given that human beings, especially adults, are given the absolute right to make decisions that are completely irrational and that do not necessarily follow medical recommendations, I am concerned that there might be a temptation to over-use the notion of incapacity. I am not suggesting that there is a conspiracy, but if there is an intransigent patient and the health care provider knows that medical treatment can help them, there would be some benign temptation. That is the rationale for having someone independent from the care team—which has an interest in doing the best for the patient, in clinical terms—to make such judgments. Ideally, that person would be a lawyer, because incapacity is a concept with clear legal overtones, not medical ones.

Thank you, Professor McLean, for coming at relatively short notice.