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Lord Carter: This is a debate that will continue inside and outside the Chamber. I beg leave to withdraw the amendment.
Amendment, by leave, withdrawn.
[Amendments Nos. 11 and 12 not moved.]
Baroness Ashton of Upholland moved Amendment No. 13:
"(5) Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death."
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On Question, amendment agreed to.
Lord Carter moved Amendment No. 15:
"(6A) He must consider any advance statement made by the person ("P") when P had capacity to state P's preferences in relation to the matter in question.
(6B) For the purposes of subsection (6A) an "advance statement" must—
(a) be in writing,
(b) be signed by P or by another person in P's presence and by P's direction,
(c) the signature is made or acknowledged by P in the presence of a witness, and
(d) the witness signs it, or acknowledges his signature, in P's presence.
(6C) He must, where the determination is not in accordance with P's preferences as stated in P's advance statement, be able to show good reason as to why this is the case."
The noble Lord said: Amendment No. 15 refers to "advance statements". Currently, the Bill will give statutory legal recognition to only advance refusals of treatment. It would be helpful in our terminology to use the words "advance directive" or "advance direction" for refusals of treatment and "advance statement" and "wishes" to continue treatment, so that there is no confusion. I shall use the term "advance statement".
There is an argument that the positive advance request for treatment and care should also be given some form of recognition in the Bill. The amendment proposed will include advance statements made by a person as part of the best interests checklist in Clause 4. If someone has taken the trouble to express his preferences in an advance statement, there should be an obligation on those persons providing care or treatment to take the advance statement into account. I am sure that the Minister will say that that should be done, but it will be interesting to know just how that is supposed to be done.
The person providing care or treatment should also be able to provide a satisfactory explanation when the care or treatment provided goes against the preferences expressed in the advance statement. The Government have said that advance statements will be included in the code of practice. However, there is considerable research evidence, particularly in relation to people with mental health problems, that unless advance statements have some form of legal status, the experiences of patients and professionals are regularly ignored. We touched on that in an earlier amendment. That experience serves to discourage some people from setting up the procedure for advance statements.
It would be anomalous that while people with mental disorders in Scotland will have advance statements recognised in Scottish mental health legislation, there will be no legal recognition of advance statements in England and Wales in either the Mental Capacity Bill or the draft Mental Health Bill, which is currently being dealt with in a Joint Committee of which the noble Baroness, Lady Barker, my noble friend Lady McIntosh and I are members.
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Advance statements empower people to make their preferences known in advance, which make it far more likely that they will receive the treatment and care of their choosing. Advance statements will help to promote the ethos that the NHS is aiming to develop through the patient expert programme and should be included as part of the Bill.
I must refer to the Burke judgment because that is what this is about. There is a firm statement in Burke that if an advance decision to refuse treatment is, in the words of Mr Justice Mumby, "determinative", an advance statement of wishes not to have artificial nutritional hydration stopped, for example, is equally determinative. That judgment has considerable implications, as we all know. We know that it is being appealed.
I understand why the department and the GMC have joined in the appeal. On certain readings, the Burke judgment could open the door to enormous implications: a patient could demand any treatment he or she wanted, which I am sure was not the intention. It is an important area. This is a probing amendment on the subject of advance statements to see whether, if they are not given the same legal force as an advance refusal, there is some way in the Bill that we could cater for the problem that exists in this area and with the Burke judgment. I beg to move.
Baroness Chapman: I think that the noble Lord, Lord Carter, was reading from my notes over my shoulder, because he said just about everything that I was going to say. Indeed the Minister and I had a discussion this morning about advance decisions and I too think that this will be a formal recording of positive decisions requesting treatment. I hope that we will find a way to deal with that.
Baroness Finlay of Llandaff: I have tabled some amendments in this group, but I fear that I have scored an own goal because mine do not cover private practice either. I should not have criticised the amendments of the noble Lord, Lord Carter, when I have made the same mistake. They were motivated by wanting to establish a position of equipoise.
As the noble Lord, Lord Carter, so clearly laid out, the difficulty is that the legislation seems to be skewed towards one's ability to refuse treatment but makes it more difficult to have some way of legally enforcing a statement of what we would want done. I would like to use two examples. I refer to Jane Campbell, who has already been mentioned and whose case was raised by the noble Baroness, Lady Barker: her situation arose in hospital. It was not reported in the press that two or three months before she had already made the decision that in the event of her needing to be on a ventilator she would want to be on a ventilator and still work. She would like to find a way of having a wheelchair-linked ventilator so that she could get around and still hold her position of responsibility. It was not until her husband and sister were forceful that she was able to convince the clinicians. She had a legally-binding advance statement. They would not have been able to ignore her wishes when she herself was trying to express them. That is an extreme example.
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A situation that arises often in clinical practice is that we do not know on the balance of benefit versus risks and burdens what is going to be right for the individual because the decision is so individual and no decision is absolute. In other words, if a patient is being offered, say, a gastrostomy, we cannot say that they will certainly benefit or not benefit. When some patients can no longer swallow they will say, "That's it; nature's taking its course. I want to allow natural death to occur. The thought of having a tube coming out of my tummy, the risk of diarrhoea and the need to monitor my electrolytes is something that I don't want". That is their decision and they refuse treatment. Under the Bill they can write a statement to that effect.
However, someone else may say, "If I am unable to communicate or I am too ill at the time, I would like you to think about it and consider it and possibly give it a go and I accept that I may get diarrhoea with it and I realise that you will have to take blood off me every day initially and thereafter at intervals. But I would like to be considered because for me having the hope of some more days or weeks and to be able to express that wish is important to me".
The amendments do not say that the clinicians must do what is laid out, but if there is an explicit, situation-specific wish, they have to consider it seriously as part of the decision-making. The amendments seek to establish that equality, so that people can state that they would want you to try to let them keep going.
Another example may arise with people who know that when their depression gets very severe they respond to ECT. I know they are very rare cases, but there are a few people who accept that ECT may be the quickest way for them to get out of the absolutely black depth of their overwhelming suicidal depression. It would be helpful for clinicians if that were stated somewhere, because it would be easier for them to go straight into a treatment that in this day and age is a long way down the list of treatments offered.
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