End of Life Care

Lord Carlile of Berriew Excerpts

Tuesday 14th March 2017 Lords Chamber

[Lord Carlile of Berriew (Non-Afl)]

My Lords, I am sure the whole House will have been moved and instructed by the courageous speech that we have just heard from the noble Baroness. I look forward to the Minister’s response to it.

I pay my tribute to my noble friend—and indeed my very good friend—Lady Finlay for obtaining this debate and opening it with such skill. We in this House all benefit from her knowledge of palliative care, and indeed many of us have deferred on many occasions to that knowledge in quite specific circumstances.

It is a very good thing that we are able to debate the subject in this House and that so many noble Lords wish to take part. Indeed, I pay my tribute to the Government producing a document called Our Commitment to You for End of Life Care: The Government Response to the Review of Choice in End of Life Care. I cannot imagine that such a document would have appeared from a Government 10 or even seven or eight years ago. We are now beginning to talk properly about death and end-of-life care.

There must be many in this House—many of us have lost our parents, for example—who have witnessed the death of someone we love and have long loved. We heard the phrase “the quality of death” earlier in this debate. For me, one of the greatest privileges I have had was to witness a quality death in people whom I loved. Witnessing the death of someone you love and have long loved is a profoundly moving experience if it happens to you. To my mind, it is capable of being as profound an event as witnessing the birth of someone you are about to love as a parent. For death to be an event of that quality, however, good end-of-life care is essential.

I turn to children’s end-of-life care, a subject very eloquently spoken to by the noble Baroness, Lady Bakewell, and the noble Lord, Lord Suri. At the end of the 1990s and the beginning of this century I was a trustee of a children’s hospice, as it then was, on the Wales/Shropshire border. It made an enormous contribution to the lives of sick children and the lives of their families, who sometimes desperately needed respite from the difficulties that their dying children brought to the whole family, including their siblings, who often find that situation very difficult to cope with. It provided a process of death for children that was effective and moving and meant that everyone in the family was able to look back on that death as one of the most significant and historic events in the life of the family.

What worried me then, and worries me still, is that the statutory sector was reluctant, and remains reluctant, to recognise the contribution made by charitable organisations that provide hospice care for children. At the time when I was a trustee, there was barely any funding coming from the statutory sector to charities that were running children’s hospices. The situation is better now. Nevertheless, nearly one in five of commissioning groups do not commission children’s hospices at all, and seven commissioning groups refuse to commission children’s hospices to provide care just because they are charities. That is part of the very useful information that I and other Members of your Lordships’ House have received from Together for Short Lives and the Rainbow Trust, which I applaud for the assistance they have given to us towards this debate.

I shall simply ask the Minister one or two of the many questions posed by those charities. Given that it is the Government’s stated intent to make sure that commissioners prioritise children’s palliative care in their strategic planning, will the Government now take steps to make sure that clinical commissioning groups understand that they are responsible for commissioning for children’s palliative care and that they embrace the work that is done in the third sector? Will the Government also make sure that they are accountable to NHS England for delivering comprehensive children’s palliative care to end the postcode lottery that has been mentioned?

The final point I shall mention, because the hospice that I was a trustee of was in a rural area, is to ask the Government to try to ensure that rurality is not a handicap for families with dying children.

Access to Palliative Care Bill [HL]

Lord Carlile of Berriew Excerpts

Friday 23rd October 2015 Lords Chamber

[Lord Carlile of Berriew (LD)]

My Lords, I apologise to some noble Lords who spoke earlier, whose speeches I unavoidably had to miss. The noble Baroness, Lady Finlay, and I have stood side by side on the legislative battlefield on numerous occasions. I have always been willing to serve as her Baldrick, but when I use that comparison I do her an injustice because she is most certainly no Blackadder. Indeed, on all subjects, but especially on this one, she is very wise and knowledgeable, and I know that there are Members of your Lordships’ House other than myself to whom she has generously given private time when they have had issues around what we are talking about today. I support this Bill wholeheartedly.

This Bill is, of course, essentially about death. We should not have to feel gloomy about death in the way that seems so traditional in our country. I carry in my mind memories of my father’s death. I was lucky as I had a wise and wonderful father and his death was therefore a great sorrow to me. As I recall the last 24 hours of his life, every moment of which I witnessed, I can get almost a precise replay in my mind’s eye of everything that happened, everything that he said and all the thoughts that we exchanged before he was no longer able to speak, and it brings me great joy.

Today, 2,000 families in this country will face a death in the family. I wish that they could enjoy what I and, I believe, my father enjoyed on that day more than 25 years ago. My father did not want to die, but he was not afraid of dying. What occurred was almost the perfect end to life, but I am well aware that that does not happen everywhere.

Settings for death differ, and I have witnessed some of them. They include hospitals, nursing homes, residential homes and homes. I agree with the noble Lord, Lord Warner—wherever he cares to sit in your Lordships’ House—that if at all possible people should be able to die at home as long as home is the right place for them to die and the circumstances are there. Wherever possible, those circumstances should be provided. That is much of what this Bill is about.

Let us face it: in most cases death is predicted, at least within a relatively narrow timeframe. We prepare for birth over a period of nine months. We do not know exactly when the birth will occur, in most cases, but we are ready for it. We are ready to move as a family; we are ready to drop everything; we are ready to be part of a great family event at which we rejoice. I wish that we could do the same about death. In many cases, we can prepare for it and be at the side of the loved one who is departing from the family.

What has happened is that there has been almost a postcode lottery in relation to the way in which death is managed. In some parts of the country, provision has been very good and holistic; in other parts, and I have seen this too in my own family, it is, frankly, haphazard and disconnected, and you depend on the chance that there is at least one nice and sympathetic person present as the relative dies.

The Bill is about creating much wider knowledge and of creating training so that people are ready to deal with death. Dr Twycross, emeritus clinical reader in palliative medicine at Oxford University, wrote a very compact and telling letter to me about this. One of the things he said was that lectures are not enough, and that apprenticeships of an appropriate length and intensity are vital, particularly for doctors training to become specialists in gerontology, oncology, respiratory medicine, cardiology, neurology and pain medicine. I agree with him absolutely that training is about much more than lectures; it is about creating standards and knowledge. I believe that the noble Baroness’s Bill would help to achieve those high standards and good knowledge.