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

Part of the debate – in the House of Lords at 2:52 pm on 7th February 2020.

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Photo of Baroness Hollins Baroness Hollins Crossbench 2:52 pm, 7th February 2020

My Lords, I congratulate my noble friend on her much-needed Bill. I have been so impressed by the many thoughtful contributions today, including the compassionate maiden speech by the noble Lord, Lord Brownlow. It is a pleasure to follow the noble Lord, Lord Sheikh. Recollections of Dame Cicely Saunders remind me that she taught me when I was a medical student.

Before my retirement as an academic psychiatrist in learning disability, my own research and clinical practice included a focus on end-of-life issues, including decision-making for people with learning disabilities and autistic people. Research at Kingston University and St George’s led by Professor Tuffrey-Wijne, the first professor of palliative care and intellectual disabilities, has shown that—just as in life—people with learning disabilities are discriminated against in death. In countries where physician-assisted suicide has been legalised, there is growing evidence that despite the rhetoric of choice, this is just one more situation in which there is a lack of respect and understanding and the wishes, rights and decision-making capacity of people with some developmental disabilities are ignored. I declare an interest as a co-author of peer-reviewed publications on this issue.

Most people with learning disabilities still do not get equitable end-of-life care, despite a decade of inquiries and recommendations. Personalising end-of-life care for everyone is in the NHS long-term plan. The multisystem, multidisciplinary approach needed to get end-of-life care right for people with learning disabilities would almost certainly get it right for everyone else too and should be a benchmark for all services. I hope that my noble friend’s Bill will ensure equal access for everybody, including people who are made vulnerable by the ignorance of clinical staff about the reasonable adjustments they can put in place to ensure that this group too can die a peaceful death—a point that I shall spend more time exploring in my QSD on Monday about mandatory training for all health and social care staff on treating people with learning disabilities and autistic people.

I am so pleased that the needs of children such as Charlie Gard and their parents are being considered in the Bill. I have met Charlie’s parents several times and applaud their courage in drawing to public attention what happened to Charlie and themselves. To have a dying child and be in conflict with your child’s doctors is the worst kind of nightmare—a nightmare that can have long-term emotional consequences for those left behind. No parent should be put through that, especially not in the public glare of the media. Mediation is the least that can be offered. I commend that initiative most strongly and look forward to participating in further debate about how that can work most effectively.

I do not recognise the research quoted by my noble friend Lady Meacher, who is not in her place—I can assume only that we read different journals; nor can I accept that assisted suicide has any place in this Bill. But I thank my noble friend for admitting that she is afraid of an unbearable death. She is not alone, but it should make her a passionate advocate for better services rather than looking for a quick way out. The truth is that some people may feel fearful and helpless at the end of life; indeed, depression and anxiety are quite common. The excellent book With the End in Mind: Dying, Death and Wisdom in an Age of Denial by the former palliative care physician, Dr Kathryn Mannix, illustrates that beautifully. The fact is that mental health conditions are treatable and both psychological and spiritual healing are possible, even and perhaps especially when someone is dying. Parity for mental health applies at the end of life too. The well-known author and surgeon, Atul Gawande, says that a life worth living would be possible right to the very end if only we knew how to talk about what really matters and how to make it happen.

In a public lecture that I hosted at the National Gallery in 2018, Dr Mannix chose six works of art depicting death and dying for us to discuss. But she started by asking the audience how many had been present when a person died. About a third raised their hands. Then she asked how many had been present when five people died and I raised my hand. Then she asked how many had been present at 1,000 deaths and hers was the only hand raised. I am sure that my noble friend Lady Finlay is the only one here today who could say the same. We know that fear and unfamiliarity colour perception. Her experience is that many people are afraid of death.

As childbirth approaches, some women are afraid too, but easy access to midwifery and obstetric services reassures most, giving them the confidence that they can manage and that their pain will be well managed. Many women will choose to give birth at home with community midwifery provided by the NHS. Some women will need specialist obstetric help in hospital and some will need help from mental health-trained midwives and liaison psychiatry teams; for example, because of maternal anxiety related to their own past trauma such as a previous stillbirth, unresolved relationship problems and other worries. Childbirth classes are offered to both parents. The importance of family support is well recognised.

Much the same could be said for dying. It is going to happen so, as the noble Baroness, Lady Jolly, said, how will we prepare for it? How will we resolve our own complex unfinished business? Just as in the transition to motherhood, the transition from this life will need varying amounts of support. Some of us will be confident enough to want to die at home with the right support. Many people will die in a nursing home, and too many people will die in hospital. Some people will need specialist palliative care in a hospice and at home, and most people will need death education for themselves and their families. However, unlike at the beginning of life, we as a society do not seem to be shocked by the paucity of provision of end-of-life care. I suggest it is because we live in an age of denial and still fail to understand the nature of death. Last year, when responding on behalf of Her Majesty’s Government to a Second Reading debate, the noble Baroness, Lady Barran, argued that no other area of clinical care was mandated in primary legislation, but she was at a loss to disagree with me when I suggested that maternity care was surely mandated. Why cannot end-of-life care be accessed with the same degree of commitment as that provided at the very start?

On 23 July 2019, the noble Baroness, Lady Barran, wrote to my noble friend saying that I was correct. She said that,

“there are a small number of NHS services that are mandated in primary legislation, including midwifery services. These were set out in the NHS Act 1977, was updated by the NHS Act 2006 which replaced certain provisions, and most recently significantly revised by the health and social care act 2012.”

Can the Minister still defend the Government’s position that mandating care at the end of life is less important than mandating it at the beginning? I suggest it is time for a piece of mature, grown-up legislation. Is it not time that we accept our responsibly as a mature society? Will Her Majesty’s Government please support the Bill?