Contribution
My Lords, I have five amendments in this group and I beg noble Lords’ indulgence—I will get through them as quickly as I possibly can. I have tabled Amendments 179, 182 and 185 and I am a signatory to Amendments 262 and 263. We have talked a lot about choice, and I believe that patients should have real choice, not partial choice, which is why I have tabled amendments that focus on specialist palliative care.
In another place, the Public Bill Committee accepted Amendment 108 in the name of Polly Billington requiring doctors to offer palliative care support, but this could almost be a case of, “This is what you could have won”. Without a guarantee of that support being made accessible, it does not offer patients the choice that they may be expecting. We have seen cases such as Canada, where they are told, “Yes, you can have this, but we’re not going to fund it”. If the Bill is to be the best in the world, we genuinely have to offer patients every choice that is available. On the previous group, we talked about cost. We were not able to cost this up, but if patients feel that they have no choice but to end their life, we are stripping choice away from them.
Amendments 179, 182 and 185 are in my name. The Bill does not require a medical practitioner to ensure the patient has access to specialist care for their consideration. During the conversations, I believe it is important that the patient is automatically referred to specialist care, ensuring that they have a real choice about the treatment that they may choose to have. It is very important that my Amendment 179 goes beyond what the Bill says, which is just offering to refer, and says they must be referred. Until you are in that situation where you have been given a terminal diagnosis, even if you have a family member who is going through it, it can be slightly different when it is you. How does a patient know about all the different treatment options unless they are given them in a way where they have the time to understand them?
Amendment 182 is about needs being assessed by an appropriate health or social care professional, and proposed new subsection (5A)(b) states that patients must
“be provided with palliative and end of life care in line with their assessed needs”.
We should not be doing this as a case of, “This is what you could have won”—I apologise, but I cannot think a better way of saying it—but we see that in other jurisdictions, such as Canada, you are told, “You can have it, but we’re not funding it”. That puts patients in a really difficult and impossible situation. Amendment 185 also refers to the specialist support that I think is important.
My Amendments 262 and 263 are amendments to Amendment 261 in the name of the noble Baroness, Lady Ritchie. They would add the specialist part of it. I am struck by the number of people I have spoken to who say they have had access to palliative care, but when I have interrogated it, it turns out that they have had access to some medical support. It might be a district nurse, but it does not necessarily mean somebody who has had specialist training. That is incredibly important.
I have lost both my parents. I thought my mother had access to good palliative care, and this is a sense of guilt that I and others feel. It was only when my father was dying that I realised what that could and should look like. They died eight years apart in the same hospital. You would have expected a similar level of treatment and support, but it was very far from that. My father was involved. He had a multidisciplinary team. There was lots of information that we were given time to understand. He was given time to understand what the situation might be.
One of my concerns with the Bill, and why it is so important that the specialist element is there, is that when we were having discussions about my father, we were told he was approaching end of life. We were told that it was very serious, we could let him slip away and that was what we should encourage to happen. That is what he was encouraged to think about. This is why I have real concerns with many parts of the Bill. At that point in my father’s life, he had had his foot amputated. He was told that he would not have a normal life and that he would not be able to live in the same house. It was the house I grew up in, and it was vaguely adapted. He was told it would not be possible to get a wheelchair. If there was one thing I could do for my father, it would have been to get him a really good wheelchair.
This comes back to one real issue I have with the substance of the Bill: how it could be misused by families who are not caring, loving or kind, or by doctors under huge pressure who encourage people to consider ending their life. It is important that the full gamut of options is available, so that individuals can make genuinely open choices about how they choose to end their lives.