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My Lords, it is a pleasure and a privilege to be able to congratulate the noble Lord, Lord Brownlow, on his excellent and deeply thoughtful maiden speech. The compassion and care with which he has approached this debate are testament to the wisdom and experience that he will bring to this Chamber. His professional success and entrepreneurial track record are matched, as we have heard, by his compassion and philanthropy. His personal charity has been an important driver in addressing disadvantage across the UK, including support for the Alexander Devine Children’s Hospice and the Prince of Wales Hospice, showing his deep, long-term commitment to the issues raised in today’s debate. It is a pleasure to be able to welcome someone with such experience to this Chamber, and I look forward to his continued contribution to this House.
I support this important Bill. As we have heard, Marie Curie estimates that one in four people in the UK does not get the care and support that they need at end of life. It is estimated that over the next year 118,000 people will die not having received adequate care. If their voices and those of their families could be heard in this place today, it would be declared a national crisis. So I thank the noble Baroness, Lady Finlay, for introducing the Bill and for her tireless work fighting for the dignity and respect of all who are dying.
The Bill does two things: it addresses the concerning gap in our healthcare system around end-of-life care; and it would ensure mediation in instances of conflict between parents and health professionals over the withdrawal or the giving of treatment. Following on from the NHS’s 10-year plan, published in January last year, the Bill addresses the failure to include palliative care as a core service of the NHS. This omission has created an unequal system whereby the standard of treatment at end of life is influenced far more by geographic postcode than a commitment to manage suffering and dignity in someone’s final days. The Bill addresses this issue by ensuring access to specialist palliative care in hospital, in the community and in places of usual residence.
Without the Bill, the crisis of care will become only more acute. Over the next 25 years, demographic changes will increase the need for end-of-life palliative care, as more people pass away each year with more complex needs. A recent analysis published in BMJ Supportive & Palliative Care found that clinical commissioning groups had significantly varying budgets for palliative care services, from approximately £51 to £2,300 per patient per annum. This is largely the result of a consistent failure to build a broad institutional approach to palliative care, as individual founders and local organisations have historically been the dominant forces in creating and funding hospices, for example. This issue is compounded by the fact that, as we have just heard, many hospices do not receive pharmaceuticals from the NHS, meaning that hospice budgets are consumed largely by the provision of essential medicines—a further inequality skilfully addressed by the Bill.
The Bill also addresses the issues raised by the tragic incidents involving the families of Charlie Gard and Alfie Evans. To lose a child is a tragedy that I believe every parent dreads, but I cannot imagine what it is like to lose a child under the glare of intense media scrutiny, with the public and professionals debating your intentions as a parent for your child. I offer those families my sincerest condolences.
For Chris Gard and Connie Yates, the pain and anguish they experienced with Charlie’s illness was exacerbated by the feeling that they simply were not being listened to. When they requested mediation and it was refused, and Charlie’s treatment was escalated to the courts, they not only felt powerless but were legally unable to access Charlie’s medical records to obtain a second opinion.
If mediation was the expected conflict-resolution pathway, the suffering of all families involved in these types of cases could be greatly eased. A recent Dutch study published in the official journal of the American Academy of Pediatrics found that, when there were conflicts regarding end-of-life decisions, by postponing these decisions until the 4% of conflicts within the administering team and 12% of conflicts between medical practitioners and parents were resolved, a consensus was ultimately met in all cases.
When our court system is so strained by parents who are failing their children, surely we want to support as much as possible those who seek to do everything right. Mediation is a crucial instrument in aligning the love and empathy of a parent and the practical medical reasoning of a practitioner. The goal of medicine is to heal and relieve suffering. As Eric Cassell warns in The Nature of Suffering and the Goals of Medicine,
“failure to understand the nature of suffering can result in medical intervention that (although technically adequate) not only fails to relieve suffering but becomes a source of suffering itself.”
Our adversarial court system is not conducive to the relief of suffering. Charlie Gard received months of intensive care that health professionals felt was contrary to his interests, all the while without receiving the nucleoside treatment that his parents desired. This treatment, I might add, did not involve any invasive surgery but was a simple powder that was to be added to his milk formula. Nobody got the outcome they wanted, and it is evident that the suffering of Charlie and his family was greatly prolonged. The mental anguish in these situations is of a traumatic nature. For Charlie’s parents, not a day goes by when they do not wonder whether, if the circumstances around decision-making had been different, they could have done more for their son. This situation could have been avoided with a focus on mediation and by ensuring that consensus was reached before any decisions were made. The Bill will stop this happening again.
Over the course of this Parliament, more than 3 million people will die in the UK. Of these, around three-quarters will have an expected death. They have the right to know that they will get the care they need when they need it and, where there is conflict over that care between parents and physicians, that mediation will be available to them. I commend the noble Baroness, Lady Finlay, for introducing this Bill, which has the power to ensure that children and adults alike receive the dignified and respectful care they deserve.