Baroness Finlay of Llandaff (CB)

My Lords, we move on to a group of amendments that are extremely important and, in some ways, complementary to those in the previous debate. Autonomy is the lodestar of the Bill. The amendments in this group are designed to reinforce and respect that patient autonomy; they do not block access to an assisted death but aim to ensure that people have accurate information to make informed decisions. For a decision taken, people must have three things, whatever that decision is: accurate information, the capacity to make the decision and to be making it voluntarily. Those are the fundamentals of respecting a person’s autonomy. These amendments are to ensure that the patient has the opportunity to know what is available. They do not force a patient to be looked after by a palliative care team, and they do not stop a patient from proceeding with an assisted death. There is clear evidence from studies that underserved groups have poor access to palliative care, and there is poor understanding generally of what palliative care is and can do. General doctors often do not understand palliative care, so how can an assessing doctor give good, accurate information to a patient if they themselves have a deficit in their knowledge? It is worth noting that in a five-year medical training course it has been estimated that the average time spent on learning about palliative care is only 20 hours, and only recently has palliative care come into the finals questions. So there are thousands of doctors out there with almost no education in palliative care. Many patients and the public do not understand palliative care either. A significant number think that assisted dying is palliative care or hospice care, while others think that palliative care simply hastens death. Sadly, misunderstandings are widespread. When patients access appropriate specialist palliative care, the desire for a hastened death is often alleviated, and they experience an improvement in quality of life that they never believed possible. But that does not apply to everybody. The role of this amendment is simply to give everyone the best opportunity to access the care that they need, whether or not they continue to pursue an assisted death and whether or not they decide to take up the opportunities that may be revealed by such an assessment. The processes relating to an assisted death can occur in parallel with, but not as an integral part of, palliative care provision. There has been concern that palliative care teams could not cope with a sudden influx of referrals, but currently any palliative care team prioritises a patient who is in such despair that they want to die. That is basic care, a core part of the job. Palliative care will not turn its back on patients who are in despair; teams want to deliver gold standard care. In Oregon, 92% of assisted death patients are recorded as being enrolled in hospice services. Palliative care needs assessment gives patients options to make an informed decision. The patient may conclude that there are other options that they have not been aware of and want to try, or that they simply want to pursue an assessment for an assisted death. Evidence from Canada has shown that some patients seeking referral for medical aid in dying are actually asking for palliative care; they seek assisted dying as a way in which to get their problems sorted out. A palliative care needs assessment must always be non-judgmental. I stress that this is not a bad faith amendment; it is to ensure that patients know what they could have and are making an informed choice, respecting their autonomy. For every decision in life, we want the best information, whether it is knowing that the house we are buying is not full of dry rot or that a car or sales loan has not been mis-sold to us. The Bill’s processes must ensure that applicants are fully informed. This is not a costly option. There is high-quality evidence that specialist palliative care reduces the chance of dying in hospital and increases the cost effectiveness of home and hospital-based care for those with a poor prognosis. Therefore, the adequate provision of services to ensure that every patient seeking an assisted death can have their needs assessed will decrease, not increase, costs to the NHS. Home specialist palliative care is associated with reduced costs of nearly £8,000 per person and increased quality life-adjusted years. In the hospital sector, costs also reduce but only by about £6,500 per patient, again with increased quality-adjusted life years overall. Provision of specialist palliative care to ensure, wherever the patient is, that they have the option of accurate information with which to make their decision has been estimated to reduce system expenditure by over £800 million per annum. Unfortunately, I fear that the Bill’s proposers have rather misunderstood multidisciplinary care working, and I am afraid that my friend and colleague Dr Sarah Cox, who I respect enormously, has indeed been slightly misquoted. As the noble Baroness, Lady Gerada, said in our last debate, modern care is delivered by multiprofessional teams, which come together around an individual patient, comprising doctors, nurses, physio, occupational therapy, social work, et cetera, depending on the needs of that individual patient. Patients often communicate more readily with the lowest paid in the team, such as the carers, to whom they feel they can talk freely, as there is not the power differential that exists between patient and doctor. That multidisciplinary and multiprofessional team reviews and monitors things together. That is quite different to bringing a panel of three different disciplines together specifically to make one decision and then move away from it without that continuity of knowing people. It is important that we are clear what we mean in clinical care. In the hospice, I used to always have the care assistants as part of our weekly multidisciplinary review of patients. They had valuable insights and much to contribute. A mandatory assessment would ensure that people knew what was available. It is up to the person to decide whether to try one route or another. Why make this mandatory? Unfortunately, the amendment to the Health and Care Act 2022, which I pushed for very hard and was glad to see come in, and which stated that palliative care is a core service, has not resulted in commissioners adequately commissioning services, in part because they themselves are ignorant of what to commission. If assessment is mandatory, commissioners must make sure that patients seeking an assisted death have a service that can provide a proper needs assessment and give them information. The patient can choose whether to try or not try. I know that my noble friend Lady Hollins has an amendment about this, and there is indeed a definition in an amendment that has also been tabled in relation to what specialist palliative care is. To try to summarise that very quickly, it is about having the appropriate specialist skills in every setting, with advice available at all times of the day, every day, equipment and medication available, and a point of contact so that people can go back and explore and discuss things as they think more about the complexities of their situation, and they can access the support that they need. As my colleague, Dr Rachel Clarke, pointed out when she gave evidence previously, the moment of people having a diagnosis of severe life-limiting illness is their time of peak vulnerability. Is the patient’s request for an assisted death a knee-jerk reaction to a new diagnosis that terrifies them? Have they been plunged into a suicidal depression that might pass? Might a desire to die be replaced by a desire to live when they receive the patient-centred care that they need? Is a malign partner lurking in the background, putting insidious unvoiced pressure on the person to believe that he or she would be better off dead? In New Zealand, we hear about patients seeking an assisted death when they are clearly caught up in a cycle of despair and hopelessness, while actually they want and need to know what is available but often the services are not there for them. I hope that my colleagues who have tabled amendments in this group will speak to them, and I have tried to lay out a background template for why the mandatory ability to have an assessment of need is important. I beg to move.