During a debate on end of life care in the House of Commons on 2nd March, several MPs called for children and young people to be given choice at the end of their lives. In response, a minister said he would consider how to accommodate children and young people in the government’s plans for end of life care.
The debate, which included children and adults in its scope, took place on one of three days set aside by the House of Commons each year to consider the estimates of public spending by government departments. The topic of debate on these days is chosen by the Liaison Committee and is usually based on a recent report by a departmental select committee. One of the topics chosen for debate yesterday was the recent Health Select Committee report on its inquiry into end of life care.
MPs’ contributions which mentioned children and young people were as follows:
Mark Tami MP (Alyn and Deeside, Labour): “Does the hon. Lady agree that we must also consider the families of those children who unfortunately have very short lives? We need support for them as well, and it should be available across the country.”
Dr Sarah Wollaston MP (Totnes, Conservative and Chair of the House of Commons Health Select Committee): “I agree entirely with the hon. Gentleman that this care should apply irrespective of someone’s age or the setting in which they are treated. Social care will be integral to that, and I will expand further on that issue later on.”
"We must never forget the importance of providing choice and support for children and young people at the end of their lives"Maggie Throup MP (Erewash, Conservative)
Maggie Throup MP (Erewash, Conservative): “All too often, our focus is on end of life care for adults, but we must never forget the importance of providing choice and support for children and young people at the end of their lives and of the subsequent bereavement counselling for their families. I would like to take this opportunity to pay tribute to the work done by the organisation, Together for Short Lives, in providing such counselling. The more we discuss subjects such as end of life care in this place, the more open people become about talking about such a difficult subject; they feel more able to discuss it. We did not use to discuss cancer, but now we do, so it will be possible for us to talk about end of life care in a much more open way. As individuals, as parents, as children and as spouses, we should be brave enough to talk about end of life.”
Dr James Davies MP (Vale of Clwyd, Conservative): “Clearly, there is pressure on hospice beds and community hospital beds. There is also a need to address privacy in the acute secondary hospital setting, where hospital is the right place for end of life care. We know that so many patients wish to die at home, and out-of-hours services are crucial to that. We have heard a lot about a seven-day NHS in recent times and this is one crucial area where providing services at weekends and in the evenings is so important. If a patient is waiting for a delayed period for a syringe driver, for instance, that prolongs their discomfort. We also know that there are limited community services in some instances, particularly for children.…”
Barbara Keeley MP (Worsley and Eccles South, Labour and Shadow Health Minister): “A common theme in the Health Committee’s reports has been the need to ensure that choice is on offer. People want to have choice. Will the Government review the choice on offer for children and young people at the end of their lives, as they have done for adults? I have a further concern that without proper investment in community services and specialist palliative care services, choice will remain restricted. In the previous Parliament the number of district nurses fell by 2,400, and many other community nursing posts, particularly senior posts, were cut. With such a hollowing out and deskilling of the community sector, I am concerned that the nurses who provide end of life care services are coming under increasing pressure, without the time or specialist skills to provide the quality care and compassion needed at the end of life.”
Responding on behalf of the government, health minister Ben Gummer MP said:
- he intended to take forward how to accommodate the care of young people in his plans; he also said that we need to consider those who are very young
- he will respond shortly to the recommendations of the ‘Choice in End of Life Care’ review for adults, but he wanted to get it right
- he agreed that we should be ashamed at the variation in end of life care; he said that this has to be eradicated and that different approaches were needed
- he hoped to deal with the issue of how to produce consistent measurements for quality of end of life care at a local level “in the not too distant future”
- that “we need to look at the accountability of clinicians”
- he hoped to be able to come to the House in regard to death certification in the not too distant future.
We have thanked MPs who mentioned children and young people during the debate. We are also continuing to press the minister and his officials to set out how children and young people can be give choice over where they receive end of life care.