Terminally Ill Adults (End of Life) Bill

Committee (9th Day)

Clause 2: Terminal Illness

Debate on Amendment 71 resumed.

My Lords, I believe that there may be some people who wish to speak before I come to my final remarks. I certainly want to hear from the Front Benches and the sponsor of the Bill. I will therefore withhold any remarks at the moment.

My Lords, I have added my name to Amendments 102 and 106 in this group. Clause 2 is of the utmost importance because the definition of “terminal illness” underpins everything in the Bill. Without a terminal illness, the Bill does not apply and there is no ability to seek assistance in suicide, so the definition is enormously important. Clarity is absolutely necessary and would be enhanced if a list of terminal illnesses were required to be published before the clause on the voluntary assisted dying commissioner could come into effect, as Amendments 85, 894 and 896 would require. Some conditions need to be excluded, such as being elderly, as in Amendment 99. Amendment 102 seeks to ensure that dementia is recognised as a disability and not in itself a terminal illness.

Amendment 105 would exclude anyone with a congenital, genetic or lifelong condition, for which treatments are improving rapidly. Life expectancy has increased dramatically in conditions such as cystic fibrosis, COPD, Parkinson’s and Duchenne muscular dystrophy. Pathfinders Neuromuscular Alliance says:

“Many individuals with progressive conditions, such as muscular dystrophy, live far beyond their initial life expectancy due to advances in medical care. Misjudgments in prognoses could lead to premature decisions, effectively ending lives that might have been enriched by appropriate care and support”.

This Bill does not provide protection for those with such conditions, who may be coerced into seeking an assisted death.

Amendment 106, in the name of the noble Lord, Lord Hunt, and the noble Baroness, Lady Grey-Thompson, to which I have added my name, would prevent assisted dying being offered where medical negligence, malpractice or omission has occurred and given rise to disability, impairment or a terminal condition until all investigations, compensation claims et cetera have been concluded. In many cases involving medical negligence, a failure to diagnose a condition which may have been treatable when the patient first presented is finally diagnosed as a cancer at stage 4 and has metastasised. This may happen, for example, when a young woman, sometimes even a child, has cancer of the cervix or uterus: some doctors do not think they could have such a problem, because they are too young. This will be profoundly difficult for the patients and their families, and it is vital that they do not lose benefits or part of the compensation they might have received by dying of assisted suicide, rather than a death which would have been recorded as having been caused by medical negligence. Those resources may be vital for a single parent with a young family. Does the noble and learned Lord accept the need for these amendments, or what is his alternative suggestion?

The second part of the test relates to the six-month prognosis. We have heard at length about the difficulties of prognosis. The noble Lord, Lord Stevens, referred last week to the study of over 98,000 prognoses which found that the accuracy of prognoses in the several weeks or months range dropped to 32%. That means that 68% of patients receive an incorrect prognosis in that range, and they may find themselves qualifying and choose to die, thinking that this is what is going to happen to them anyway, when they could have lived so much longer and their families and friends could have benefited from them continuing to live. As Murray and Etkind, writing in the BMJ, said:

“There are no valid tools, tests, or clinical examinations that can reliably and safely identify that a person is expected to die within six months”.

Paddy Stone, former head of the Marie Curie palliative care research department at University College London, agreed:

“My research demonstrates that there is no reliable way to identify patients with less than six or twelve months to live ... At least, no method that would be reliable enough to act as any sort of ‘safeguard’ for the proposed assisted dying legislation”.

Professor Martin Vernon of the British Geriatrics Society told the Select Committee:

“Doctors and health professionals are very good at predicting when somebody is going to die within one to three days. They are also very good at predicting when somebody is likely to survive beyond one year. In between those times—a few days to one year—it is almost impossible for a doctor to give an accurate prognosis”.

We have heard so often in the course of these proceedings that those who have disabilities are terrified that their lives will be seen as of lesser value and that they will be identified as suitable for assisted death at some stage when they are suffering from pneumonia or an unhealed pressure sore, for example. We know that there is a significant risk of unconscious bias against such patients. Dr Alex Hughes of King’s College Hospital, noted in written evidence that doctors who choose to participate in assisted dying may be a self-selecting group, leading to a

“heightened risk of unconscious bias and therefore an increased risk of incorrect prognostication”.

The noble Baroness, Lady Grey-Thompson, in oral evidence to the Lords Select Committee, noted that a diagnosis of six months does not protect disabled people, arguing that the time limit could easily be eroded or doctors might intentionally overlook the six-month criterion due to inherent discrimination against disabled people.

There is also the risk of confirmation bias, particularly where a doctor decides to initiate a conversation with a patient about assisted dying. In so doing, the doctor has reached certain judgments about the patient. However, the doctor’s assessment of the context in which the patient lives may be uninformed, and when coming to a decision about whether the patient has more or fewer than six months to live, their initial judgment may be confirmed by them as a consequence of unrecognised confirmation bias. If the doctor has made a decision that something may happen but is unaware of factors which may impact on the patient’s decision-making, the doctor may well feel confirmed in his judgment after discussions with the patient. That is a significant risk, given the extent to which patients generally believe that the information and advice given by doctors is to improve or enhance their situation, and also the extent to which patients have difficulty in comprehending what they are being told during these very sensitive discussions.

This is a very difficult issue, but the evidence is very sobering when one considers that an assisted death does not just deprive the dead patient of a future but deprives those who love them of a future together which may last years. It is for that reason that I support these amendments, which seek to clarify what the standard should be.