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Item 3 is further evidence taking on the Adults with Incapacity (Scotland) Bill. I ask John Deighan, parliamentary officer of the Catholic Church in Scotland, Mary Kearns, chairman of the Scottish Council on Human Bioethics, and Dr George Chalmers and Dr Philip Howard of the Scottish Council on Human Bioethics to come to the table.
Could I clarify how long evidence taking will last?
Forty-five minutes.
I wish to apologise in advance: I have to leave at 10.30 am.
I ask the witnesses to introduce themselves to the committee.
I am John Deighan, parliamentary officer of the Catholic Church. I am grateful for the opportunity to express the Catholic Church's concerns on the bill.
I am Mary Kearns. I am a solicitor advocate, practising in Edinburgh. I am chairman of the Scottish Council on Human Bioethics
I am Dr Philip Howard, consultant physician, gastroenterologist, senior lecturer in medicine and fellow of the Royal College of Physicians of Edinburgh.
I am Dr George Chalmers, former consultant geriatrician, clinical director at Glasgow Royal Infirmary and fellow of the Royal College of Physicians in Edinburgh and the Royal College of Physicians and Surgeons of Glasgow. I represent not only the council, but CARE—Christian Action, Research and Education—for Scotland and the board of social responsibility of the Church of Scotland, of whose executive I am a member.
You will know that we heard evidence last week on the bill, and that many of our questions related directly to aspects of medical treatment, which is dealt with in part 5. We have asked you here because you represent organisations that are taking a rather different view from that advanced by the Scottish Executive as to the impact of some sections of the bill.
As Roseanna said, I was putting specific questions to witnesses last week. They concerned section 44, which refers to nutrition and hydration. I put it to the witnesses that some of your submissions stated that subsection (2) would allow doctors to withdraw nutrition and hydration. That might bring about the death of patients who were not already dying.
The main concern is about putting nutrition and hydration under subsection (2)(b). The setting up of a feeding tube, peg tube or whatever is covered by paragraphs (a) and (c). The effect of putting nutrition and hydration in paragraph (b) is to make food and fluids themselves medical treatment as opposed to the tube or mechanism for delivering them. We are not so much concerned about doctors refusing that treatment as we are about section 47, which covers proxy decision makers refusing it. They have the power under that section to refuse medical treatment. If food and fluids are included in the definition of medical treatment, they are given the power to refuse them.
The first thing to make clear is that there is no ethical obligation to provide food and fluids to a patient who is in the process of dying. It is usually not the practice in hospices, or with dying patients, to place drips or insert tubes, because it is normally regarded as unduly intrusive, unless it is to provide comfort to the patient.
When I put those points to the Scottish Executive solicitors at last week's meeting, they said that the matter is currently dealt with under common law, by application to the Court of Session. It was their view that the withdrawal of nutrition and hydration—even after the enactment of the bill—would still be dealt with on petition to the Court of Session. Do you accept that? I see the witnesses shaking their heads.
It is clear from the bill that there is no such safeguard, nor is there an onus on anyone to go to the Court of Session. The bill explicitly says that, on the word of a welfare attorney, the medical practitioner must withhold treatment that he may deem to be necessary. Section 1 is supposed to offer protection against that; however, it offers only some protection in the case of an action. In this case, we are talking about an omission and there is no accounting for omissions in the bill at all.
Section 47(2) shows that far from there being any safeguard, the reverse is true. Section 47 takes authority away from a doctor to treat a patient in a case where a proxy decision maker refuses consent. Subsection (2) goes on to say that, if the doctor disagrees with that decision, he can appeal to the Court of Session against the refusal of treatment by the proxy decision maker.
I have one more point. It was suggested that all that the bill—or the act—will do is to regularise the existing situation and clarify existing practices.
No. I think that Dr Chalmers and Dr Howard have a view on that point.
I wish to address the question of clarification as, far from clarifying the situation, the bill muddies the waters considerably.
Do you want to come back in, Trish?
No, thank you.
Would your point be answered if the principles of the bill included a general duty of care, that any decision to give or withhold treatment should be beneficial to the patient—or that such treatment should be the most beneficial, as often more than one treatment is available? At the moment, the bill says only that it should not be restrictive.
That would not be sufficient to answer our general point, as the issue of benefit has been slightly clouded by common law. That is where the Law hospital and Bland cases are probably relevant. In those cases, it was viewed as a benefit to deny food and fluids and to cause the death of patients in a persistent vegetative state by starvation and dehydration. The application of the common law definition of benefit on its own is now problematic.
Does anyone want to pick up on that point?
Many of the points that I was going to raise have been covered.
We have tried to come up with amendments that give patients the same or similar protection as that which they have at the moment, so that the protection available to incapable people is not reduced.
Would not putting everything in the hands of the doctors create a new problem, as the person appointed by the adult with incapacity would have no say?
One would not need do that, as the best approach is a team approach—the doctor, the carers and the welfare attorney would all be involved. However, someone with no responsibility should not be given the power to overrule someone who otherwise would have had that responsibility.
How would you like the procedures to develop?
We drafted amendments that we thought would cover the point that there is no duty of care.
Could you talk me through those amendments?
Yes—they are in our main submission. We have tried to be as least obstructive to the general principles as possible. We have accepted the idea of proxy decision makers, but they should be subject to appropriate safeguards. That is at the root of the problem. Our first proposal is to remove the reference to nutrition and hydration from section 44(2)(b).
I ask members to guard against getting too involved in discussing potential amendments, as we are not yet at that stage of the bill. At this stage, we are required to draft a report on the principles of the bill. We will come back to an examination of potential amendments, which I do not want us to get too bogged down in if we can avoid it.
In the papers that the witnesses kindly submitted, they highlighted their feeling that there are deficiencies in sections 73 and 74, in relation to what they call power without responsibility. Will they talk us through that point and highlight what the issues are?
Yes. However, I will cover section 1 first, which was mentioned by other witnesses who gave evidence. I have only looked quickly at their evidence, so I apologise if I misquote them. However, I understand that those witnesses said that the general principles in section 1 would protect incapable adults. I think that they were talking about section 1(2), which John Deighan alluded to earlier and which states:
Please clarify which subsection you are talking about. I cannot see a section 47(6).
I beg your pardon. I am referring to section 47(2).
Part 5, section 47(6)—is that right?
No, section 47(2). I beg your pardon. I quoted the wrong subsection number.
It is an amendment that you proposed.
Are you referring to your own amendment?
No. I am referring to section 47(2) of the bill.
It is in part 5 at page 29.
Section 47(2) is in part 5. It states that doctors may go to the Court of Session if they do not agree with a welfare attorney's decision or that of another proxy decision maker to refuse treatment.
May I comment on that?
I agree. There is a conflict in the duty of care if the doctor has to go to the Court of Session. As a remedy, would you suggest that it should be the other way round—that, if the proxy or the welfare attorney disagreed with the doctor's duty of care or medical prescription, that person should have to apply to the Court of Session?
Our view is that proxy decision makers should be made responsible for their actions by being given a duty of care. If that is done, proxy decision makers will have an obligation to seek medical advice from a doctor.
And additional medical advice, if necessary.
As they would be subject to a duty of care, if they did not agree with the medical advice, they would have to seek other such advice.
When things break down and end up in court, would you rather that the doctor had the right to appeal against the word of the proxy decision maker?
We would like the burden placed on the person who disagreed with good medical opinion. If they went to court and were scrutinised, they would have to show why they acted in the face of medical advice.
That is subsection (2) reversed.
Yes.
Good medical advice will not always be in accord with the principles that you would presumably wish to espouse. When we began our consideration of the bill, some committee members, such as Tricia Marwick, expressed concern about the fact that the bill would take away the right to make decisions from family members and so on. Paradoxically, you seem to be saying that you want that as well. You want the doctor to be in the key position, but a doctor will not always give the advice that you will want to hear.
In our amendments, we did not propose changing that provision, as we think that it is sufficient to propose a proper duty of care and leave it to those involved to sort it out. If somebody has a duty of care, they will have to take medical advice in order to make a proper decision.
If the medical advice to switch off support, for example, is not morally acceptable to an individual, there might be a conflict. The medical advice and the moral imperative will not necessarily be the same.
Whether an intervention is of benefit would be covered by the general principles. Ventilation—which is an intervention—would be covered adequately by the bill; we do not have a problem with that.
As doctors, we are concerned about who is accountable for medical decisions. Because of our knowledge and because of our experience of making such decisions, we are in a good position to make decisions. In civil law, and according to our professional code of conduct, we are liable and accountable for our decisions.
Or his insistence on treatment.
Or his insistence, as this will—as you rightly say—work both ways. Some attorneys will refuse treatment for the patient. We are concerned about nutrition and hydration, but there are other forms of treatment, such as insulin for diabetics. We are also concerned that attorneys may insist on over-zealous or relentless treatment. Because of a doctor's experience, his knowledge of medicine and of the patient's condition, he will be in a good position to make such decisions, especially because, as a professional, he is detached from the patient.
You said that you wanted a duty of care attached to the attorney so that they could make the decision in that knowledge. You are now saying that the doctor is more qualified to take the decision. Who do you want to take the decision?
Because of his qualifications and experience, the doctor should decide what—in medical terms—is in the best interests of the patient. Whoever decides whether the treatment takes place should be accountable and responsible for that decision.
Who should that person be?
If the attorney has that responsibility, he must be held accountable if he goes contrary to medical advice and opinion.
Who would you prefer to make that decision, the doctor or the attorney?
We return to the concept of how a decision is made. The idea around this room seems to be that one person will make a final decision. That is not how medical care works. The first procedure is to find out the facts, which may include the perceptions of relatives, the preferences of the patient and a range of issues other than the condition and its treatment or the cessation of treatment. The decision is not simply taken by one person.
We understand your point that information should be taken from a number of sources.
An executive decision must be made.
I am trying to understand who you would prefer to take that decision. In other words, who should give consent in the place of the incapable adult: the doctor or the attorney?
Doctors can make decisions. If a patient chooses to appoint an attorney, the attorney can, under the bill, make decisions. We do not have a problem with that. It is imperative that attorneys make decisions for which they are responsible. To do that, they need to take medical advice. If they do not agree with the medical advice, they can seek other medical advice—there is nothing to prevent them from doing that. The decision should be a properly informed and they should be responsible for it. Could I return to an earlier point?
No, not yet.
Yes. I was asked to talk about protection and did not get as far as section 73, which covers the duty of care. Shall I explain why I think that the section does not give a duty of care and why it would make all the difference? I do not have a problem with the concept of asking a friend or relative to make medical decisions. The difficulty is that the duty—as there would be on the doctor—is not spelled out, so what we would be giving power without responsibility.
Can we avoid getting into the detailed amendments? You would like a duty of care put into the bill—we understand that general principle, even if at this stage we are not into the business of discussing detailed ways in which we might achieve that.
I wish to clarify some points. Dr Chalmers, you referred to withdrawal of nutrition and hydration. Do you think that that should be done only if somebody is dying?
I think that it was Dr Howard who raised that point and I would prefer to pass it to him.
If a patient is dying from a terminal illness, the provision of food and fluids may not be appropriate and may even be regarded as intrusive. When a patient is not dying, the withdrawal of fluids in particular will lead to the patient's death.
I understand that, but are you saying that hydration and nutrition should never be withdrawn from people who are in a persistent vegetative state?
The withdrawal of fluids, even in the case of PVS, is done with the intention of causing the death of the patient.
Should it never be done?
It should never be done with the intention of causing the death of the patient.
I see. It is an area in which definitions—dying, for example—are difficult. On the general principles, section 1(4) says that account shall be taken of certain factors in
Yes.
Section 1(4) says that
The Executive has stated that it does not wish euthanasia to be introduced. The scenario that you have described represents euthanasia.
The bill says that the wishes of the adult should be taken into account. Are you saying that in no circumstances should the removal of feeding by artificial means—
To deem it to be of benefit to remove hydration and nutrition is the Law hospital scenario, but—under the bill—without the court scrutiny.
I asked a straight question. Are you saying that in no circumstances should hydration and nutrition be withdrawn?
I would say that in no circumstances should they be withdrawn. However, that scenario has been presented under common law and, in the particular situation that you describe, they can be withdrawn. To deem the removal of hydration and nutrition to be of benefit is the Law hospital scenario but—under this legislation—without the court scrutiny.
Is your general problem that you see common law going in one direction and you want the bill effectively to stop it going where it looks like it is going?
The position is that Law hospital—in a difficult case; no one denies that—introduced the prospect of passive euthanasia for PVS patients. The trouble is that it established the principle that it was all right to starve to death an incapable person who was not otherwise dying. As John Deighan says, the bill enables that principle to be applied to any incapable patient.
I will take that as a yes.
Yes.
You would like the bill to be amended to stop the common law going in the direction in which you think it is going.
To stop it going further in that direction.
Do you think that removing nutrition and hydration from the definition of general medical treatment would go some way to removing the problem that you perceive?
It would go some way to doing that, but it would still not make proxy decision makers accountable or responsible for their decisions.
Would giving proxies that duty of care and removing hydration and nutrition from the definition of medical treatment go some way to allaying your concerns?
Yes.
The definition of medical treatment in the bill is all-embracing. It includes medical, optical and nursing procedures and treatment. We would distinguish between medical treatment—medical, surgical and dental procedures and treatment, which are designed to safeguard the health of the patient—and nursing care. In the bill, nursing care—whose function is to promote the dignity of the patient through such things as hygiene and cleanliness, and to safeguard their well-being and comfort through such processes as hydration, psychological support, palliative care and so on—is included in medical care.
Your organisation contains a large number of doctors and others who are closely associated with the medical profession. Your submission describes the current position and suggests that doctors have to follow strict rules on the treatment of incapable adults. Is it your view that we should stick with the status quo rather than pursue this legislative process?
We are trying to propose amendments that do not damage the general principle of asking other people to make decisions on one's behalf but that put in safeguards to allow that principle to operate safely.
Your document says that there could be unscrupulous doctors.
I went on to say that we recognised that the vast majority of doctors, relatives and carers and so on would be completely scrupulous and would want only the best for the incapable person. The purpose of legislation is to deal with people who do not rise to that standard. It is true that there are some unscrupulous people.
In any profession.
Is it fair to say that you are, in general, in favour of the bill, but that you want an added level of responsibility injected into it?
Yes, we want it to safeguard and protect incapable people to the same extent as they are protected now.
That said, there is a lot to be said for the status quo, not least because cases rarely come before the courts—the public must be in broad agreement with the way in which the profession behaves. Our concern is the responsibility and accountability for decisions, regardless of who makes the final decisions.
I accept that medical opinion must reign supreme in emergencies. There is no question about that and I do not think that that is what the bill is trying to address.
Medicine is becoming very complicated. It seems that you will place a very onerous responsibility on attorneys. I am trained in gastroenterology and general medicine, but would feel uneasy about making decisions about neurosurgical, burns or trauma patients, for example. Attorneys, who will usually have no medical responsibility, will have to make such decisions, which are not only professionally but emotionally demanding for doctors.
I want to come back on a point made by Christine Grahame. Section 1(4)(a) talks about the past and present wishes of the incapacitated individual. If we introduce your duty of care for the proxy or the welfare attorney, there will be a conflict. In cases where the adult has expressed their wishes, what is the overriding factor—section 1(4)(a) about the past wishes of the individual, or the duty of care, which currently the doctor has, but which, under your amendments, the welfare attorney would have?
The living will was deliberately taken out of this bill. If individuals' wishes are to take precedence, living wills should be re-introduced. If that is the case, let us say it, rather than have it hidden behind the legislation.
I am just asking you about this. At present, there is no priority in the bill. Simply inserting a duty of care for the welfare attorney will create a conflict unless priority is specified. Which would you like to be the priority—the duty of care or the present and past feelings of individuals?
The duty of care.
There is a serious problem. An incapable patient is by definition incapable of making a decision on their present wishes about the treatment on offer. Could I refer quickly to a case?
Very quickly, as we are running out of time.
It is the case of Marjorie Nighbert in Florida in 1996. I have a cutting about the case that I can leave with you—I was worried about copyright so I did not copy it. Marjorie Nighbert appointed her nephew, I think, as her welfare attorney. A few years previously, while watching a television programme showing someone being tube fed, she had said to her nephew that she did not want to be tube fed. When she had a stroke and was taken into a nursing home, and a decision had to be taken, the welfare attorney refused consent to feeding. At one point Mrs Nighbert clutched the arm of a nurse and begged to be fed and given food and water. The case had to go to court to decide whether she had the capacity to overrule her previous directive. The court decided that she did not. I will leave the cutting with you.
I am not happy about this—I realise that it is now on the record. The bill would not allow such a situation to arise, so it is misleading to mention it. I am not happy that that is left on the official record without some comment.
It is on the record because it is the evidence that the witnesses wish to give.
I want to put on record that I do not accept that, as the bill stands—
Pauline, we cannot dictate to witnesses that they can give only the evidence that we want to hear. People may not like what they hear or consider it appropriate in the context. We will a take decision on that.
We are not trying to establish priorities for one person over another. We are trying to give to each person concerned an equal responsibility for their decisions. If one takes into account—as one should and as, medically, one does—the feelings, opinions and perceptions of the patient, relatives and everybody else, one must weigh them in relation to the situation as it is. If there is any priority, it should always be the patient's welfare and best interests, the promotion of their health and the maintenance of their comfort and dignity. We need to get that right. We are not setting one person against another; we are seeking to concentrate the care of medical and non-medical people on the person.
The problem is, of course, that people have different definitions of what is in the best interests of patients. This discussion is about those differing definitions of what might be considered appropriate.
My concern is—
I did not put that as a question.
Could we ask others to comment?
We could write to them and ask them to comment. It would be helpful if we could direct them to the Official Report of last week's and this week's meetings. Clearly, that is a practical difficulty that needs to be overcome.
And someone from the Court of Session—for example, a delictual judge, who might see the issue from the point of view of the role of the courts. Matters have been raised—for example, what would be done in an emergency—that mean it would be good to have input from the judiciary.
Can we agree that we will write to those organisations and individuals and ask them to comment in writing on some of the issues that have been raised?
We should put it to the rest of the committee to ask how members feel.
No, we do not have time.
I do not want to keep going over the same ground.
Do not do it, because you have said it already.
Christine makes a valid point.
Yes.
Other people could give evidence, so why impose a time scale?
The time scale is imposed on us; it is not of our choosing. We need simply to deal with it. Because of the extensive consultation that has gone into the production of both the bills that are before us, there is less requirement for us to take evidence. However, we can address that issue in future. I appreciate the points that are being made—they are being felt by everyone—but we have to move on and do the best that we can, given the circumstances.
If you are happy that individual members of the committee do that, then we shall. I find the subject to be a difficult one because it raises a lot of ethical questions. I would like to hear more practical information from the RCN and the BMA, and also from the medical ethics council.
I remind everyone that, when the bill comes back to us for stage 2 consideration, we will look at it in great detail. At that time there will be the opportunity to revisit what we have discussed today. Members should bear in mind the fact that we are preparing a draft report on the principles of the bill. I think that we are beginning to psychologically prepare ourselves for the amendment stage, but we are not at that stage yet.
Can you confirm that when we move to stage 2 we will not be seeing witnesses?
It is not planned that we will see witnesses, but we can address that issue. Undoubtedly, many submissions will provide background information to the amendments.