Access to Palliative Care and Treatment of Children Bill [HL]

Baroness Jolly Excerpts

2nd reading & 2nd reading (Hansard): House of Lords & 2nd reading (Hansard)
Friday 7th February 2020 Lords Chamber

[Baroness Jolly (LD)]

My Lords, I, too, support this Bill. I endorse what the noble Lord, Lord Hunt of Kings Heath, has just said and congratulate the noble Baroness, Lady Finlay, on coming so high in the ballot and getting an early slot in the parade of Private Members’ Bills. I am grateful for the many briefings that I have received. I warn the Minister that the noble Baroness, Lady Finlay, is a tenacious individual. Should the Minister decline the Committee stage, for which I have an amendment ready to go, the noble Baroness will return next year, as I am sure will many of the noble Lords speaking today. We will not let this issue drop. The response from the Government last June was unconvincing and disappointing. I fail to see how the Minister today can come up with something that will not satisfy.

As has been stated, Clause 1 of the Bill applies to palliative care and support. Midwifery services are available from the state and mandated in legislation. They are freely available to all women. It seems strange and anomalous that end-of-life services do not enjoy the same ease of access and availability of medication to treat pain and prevent suffering. Why should those of us who choose to end our lives in hospices be treated differently from those who find themselves at home or in a hospital when they die? At the end of our lives, we should all have care that is totally person-centred, not one size fits all, whatever our age, colour or creed. Hospices should have the same level of access to pharmaceutical support as settings where NHS clinicians provide care. That should be the responsibility of the local commissioning body—the CCG—as recommended by the noble Baroness, Lady Barran, when she summed up the last Second Reading debate on this Bill.

I was struck by the point made by Marie Curie that 6 million of us will die within the next 10 years. Commissioners need to face that and plan accordingly. It is not something that should just happen. It is a really big number—I think that it is something like 20,000 a day, which is an awful lot. Many of us would choose to die at home, but for many reasons that is not an option.

As a society we must think more about our deaths than we do currently. Good end-of-life care is expensive and not always available from some CCGs. That should not be the case. A good death should not be a lottery. It should be a right, not an accident of where you die. That anomaly needs sorting and I hope that the Minister will not disappoint. A clarification of the department’s thinking on this would be appreciated. If the Minister is not able to offer that now, I would be grateful if she could add it to my letter.

Clause 2 clarifies the situation when treating children with a life-limiting illness. In advance of the previous incarnation of this Bill, I had the privilege of meeting the parents of Charlie Gard, who died so tragically, in the gaze of the public in a media storm, nearly a week short of his first birthday. They were determined that no family should be put through the torment that faced them when there was an impasse between the interests of the child and parents and the clinician and hospital. There was no mediation. Noble Lords will remember the tragedy unfolding on our screens almost hour by hour. Dignity and mutual respect vanished for the dying child, his parents as helpless witnesses, and the clinicians. The Bill of the noble Baroness, Lady Finlay, remedies that, but I am sure that the Minister will tell us that it should be happening anyway. We know that and I am sure that in hindsight everyone involved in Charlie’s care knows that, too, but it could happen again unless there is legislation that states clearly how such a situation should be better handled.

I hope that the Bill is committed after this Second Reading debate, as I have an amendment ready to table. The noble Baroness knows that and believes that it sits well within her Bill—I am grateful for her endorsement today. Many organisations in their briefings have expressed concerns about Clause 2(4). My amendment would insert after Clause 2(4):

“Any medical treatment proposals put forward by any person holding parental responsibility for the child must be considered by the court, unless contrary evidence is established that the proposed treatment poses a disproportionate risk of significant harm.”


The amendment would ensure that the court is able to prevent a proposed action where it is not in the best interests of the child—in other words, when it is clearly established that the proposed action or medication would cause significant harm. Such harm should be clearly established to outweigh the harms from the alternate proposed course of action.

Fortunately, very few of us have found ourselves in the position of watching a child die. I lost a cousin before his first birthday, well over 60 years ago when I was a small child, and I still remember the impact that it had on the extended family. My mother never forgot his birthday and his parents still remember it now. We owe it to society that any palliative care that is given is properly commissioned. In the case of children receiving palliative care, mediation should be readily available in all situations where parents and clinicians fail to find a meeting of minds and the court should be able to prevent the proposed action when it is not in the best interests of the child.

I am sure that the Bill, when amended in Committee, will offer a way forward that is practical and workable and offers dignity in dying to the individual and their family. The Prime Minister has announced that £25 million will be provided to hospice and palliative care services. That must be commended but, as the noble Lord, Lord Hunt, said, a one-off is fine and dandy, but it needs to be sustained. We need to make sure that facilities remain open and that the quality of end-of-life care is improved. We eagerly await the Minister’s response. I hope that we are not disappointed.