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Patients' Protection Bill [HL]

7.36 p.m.

Baroness Knight of Collingtree: My Lords, I beg to move that the House do now again resolve itself into Committee on this Bill.

Moved, That the House do now again resolve itself into Committee.—(Baroness Knight of Collingtree.)

On Question, Motion agreed to.

House in Committee accordingly.

[The DEPUTY CHAIRMAN of COMMITTEES (The Countess of Mar) in the Chair.]

Baroness Finlay of Llandaff moved Amendment No. 5:

(1) An offence will not have been committed under section 1(1) if any of the requirements in subsections (2) to (6) below are met.
(2) The patient—
(a) consents to the withdrawing or withholding of sustenance;
(b) does not consent to the giving of sustenance; or
(c) does not consent to the recommended intervention to provide sustenance.
(3) The giving of sustenance—
(a) is likely to cause significant discomfort to the patient, or worsen his illness or debility;
(b) is likely to result in no improvement in the patient's illness or debility; or
(c) is not likely to alter the patient's illness or debility.
(4) The withdrawing or withholding of sustenance is intended to relieve patient's suffering.

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(5) The primary purpose of the withdrawing or withholding of sustenance is not to hasten or otherwise cause the death of the patient.
(6) The withdrawing or withholding of sustenance is, in the opinion of the senior doctor responsible for the patient's care and the patient's next of kin or best friend, in the patient's best interest.
(7) For the purposes of subsection (6) above, the responsibilities of the senior doctor may be delegated to another medical practitioner.
(8) For the purposes of subsection (6) above, a "best friend" is a person, other than the patient's next of kin, so designated by the patient."

The noble Baroness said: I beg to move Amendment No. 5. This amendment, together with my other amendment, is probing, and I do not intend to divide the Committee at this stage. However, I would like to explore the ways in which the Bill will work in practice. Amendment No. 5 is designed to ensure clarity and purpose and to avoid meddlesome interventions as defensive medicine.

In her introductory remarks on the Bill, the noble Baroness, Lady Knight of Collingtree, said:

    "There is nothing in the Bill to force the patient to have a tube in his nose or a PEG in his stomach if he does not want that. Nothing in the Bill obstructs good medical practice. It does not make illegal withholding sustenance from a patient who is dying when placing feeding tubes would be unduly intrusive or the risk excessive. The Bill does not impose any requirement on doctors to strive to keep alive patients who are dying".—[Official Report, 12/3/03; col. 1403.]

The amendment seeks to ensure that those aims are clear. Without it, there will be difficulties for excellent clinicians, as was so clearly explained by the noble Earl, Lord Howe, in proving beyond all reasonable doubt in a court of law that their purpose was not to cause death.

Subsection (2) of my proposed new clause encapsulates the issue of consent. A patient must consent to what is done, whether that is to be examined or investigated or to be treated. When unable to consent, the principle is the decision deemed to be in the best interests of the patient. Consent is valid only if it is voluntary, informed and the patient is competent. Competence requires that the patient understands the information, can mentally process the information—being of sound mind—and understands the consequences of each option, including the consequences of doing nothing, and the patient must be able to communicate his or her decision.

Forcibly to impose sustenance against valid refusal would be battery. However, the patient might consent to sustenance, but not to the optimal route. For example, a patient could decline a PEG and nutritionally enriched drinks, but wish for other drinks or soups. These would not provide optimum nutrition and may carry a risk, yet they are the patient's informed choice.

Perhaps I may give a specific clinical example. A woman with motor neurone disease was assessed as having an unsafe swallow. Her neurologist recommended PEG feeding, which she declined, as in subsection (2)(c). Her speech was very impaired but she was able to move independently and was reasonably strong. She wanted her drip taken down as

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it was making her sore and she did not want it re-sited—as in paragraph (a). She wanted a cup of tea. She did not consent to sustenance, as in paragraph (b), as the cup of tea would not meet her nutritional needs. She and I knew the risks but this was her informed choice. She drank most of the cup of tea, by the way. Her husband agreed with her decision and she died peacefully a few days later—but without her drip being re-sited as that was her wish and remained so.

Subsection (3) covers decisions where the patient is too ill to be able to make a competent decision. If a patient has cerebral oedema, which is swelling of the brain, the patient can be made clinically dehydrated with drugs to decrease pressure inside the skull, as in paragraph (a), so sustenance is being withheld for a clinical reason. This also covers those patients with enteral feeding induced diarrhoea where all bowel loads must be withdrawn to stop the diarrhoea, even though the patient is already cachexic.

Paragraph (b) covers a patient who is dying imminently. Paragraph (c) covers those patients whose disease state is advanced but who are unlikely to die in the next 24 hours or so. However, pouring in calories is futile because at a cellular level they cannot cope with a huge nutritional load. For them, fluids and some calories are appropriate, but these will not reverse the loss of body mass. Very costly parenteral nutrition would be futile and it would be invidious to accuse the clinician of purposefully withholding nutrition.

Subsection (4) covers patients in heart failure. They will be given diuretics to draw off fluid through the kidneys to decrease fluid load. Unless the load on the heart is decreased, a patient's breathlessness will worsen, as will his or her distress.

Subsection (5) covers double effect. In this situation the primary purpose is not to cause death but electrolyte disturbance is a predictable risk. This predictable risk—though at the time thought to be the lesser of two evils—is the problem that causes death.

Subsection (6) allows decision making to occur for the patient who is unconscious or incompetent through delirium or other condition and who is dying and cannot give or withhold consent. It ensures that the decision is taken between the senior doctor and the patient's next of kin or best friend and that the decision is in the patient's best interests as a person. This means that such a decision would be unlawful if the next of kin stood to gain financially from the patient's death within a short time. It would, however, allow for the designated advocate to express what the patient would have wanted if he or she had been able to make and communicate a decision.

Subsection (7) ensures that the senior doctor or doctors to whom the patient's care has been delegated carries such responsibility. This allows for being off duty and so on. It protects the patient from another healthcare professional not involved in the chain of responsibility deeming that sustenance should cease. It makes clear the lines of answerability for clinical decision making.

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Subsection (8) allows those who have no direct relative or who are very distant from them to determine their delegated representative but ensures that the delegated person cannot act alone. For example, a single lady who has fallen out with her brother, has no children or parent, may have a close friend who knows her well. This applies also to same sex relationships, where the people involved may be very loving and committed to each other; other family members may have become alienated and have no idea of the person's ideas, values and concerns. The best friend is the person the patient trusts.

I hope that I have explained the rationale behind the amendment. I beg to move.

7.45 p.m.

Lord Swinfen: I understand where the noble Baroness is coming from. She is trying to improve the Bill. I have one or two points to raise on her amendment. I am neither a lawyer nor a doctor. So if I am mistaken in the points I raise, that is the reason; I am speaking purely as a layman.

Subsection (2) refers to the patient's consent. The noble Baroness will recall that when we were previously in Committee my noble friend Baroness Knight of Collingtree withdrew Amendment No. 4 because the issue of informed consent was not referred to in her amendment. I do not see that referred to in the amendment of the noble Baroness which is before the Committee today. I believe my noble friend intended that there should be informed consent on the part of the patient.

I believe that subsections (3), (4), (5) and (6) are covered by Amendment No. 2, which the Committee will recall was agreed to the last time we met. I may be wrong about that in legal terms.

As regards subsection (7), how experienced does the senior doctor have to be? Is there a misprint in that subsection? It states:

    "For the purposes of subsection (6) above, the responsibilities of the senior senior doctor may be delegated".

Is there one "senior" too many there?

I can see where the noble Baroness is coming from but I have a feeling that the proposed new clause may need to be redrafted before we reach Report stage.

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