Jennifer, the baby daughter my wife Sarah brought into the world a few days after Christmas 2001, died after only 11 days. By day four, when the extent of her brain haemorrhage had been diagnosed, we were fully aware that all hope was gone and that she had no chance of survival. We could only sit with her, hold her tiny hand and be there for her as life ebbed away. She died in our arms. But those days we spent with her remain among the most precious days of my and Sarah’s lives. The experience of sitting with a fatally ill baby girl did not convince me of the case for assisted dying; it convinced me of the value and imperative of good end-of-life care.
We were reassured that she was not in pain. At the heart of the debate on assisted dying is our desire to prevent suffering. Almost every family is able to talk from firsthand experience of heartbreaking moments when they want to do their best by their parents, grandparents or mortally ill children – and then feel they have failed. Our sympathies naturally flow to those fatally sick patients we know who themselves fear the suffering that lies ahead of them and losing control over their final months, days, or even hours.
So both sides in the assisted dying debate share a common concern: the genuine compassion felt for all those suffering painful deaths. Making possible a good death for all is one of the last great, yet unattained causes. Yet how best to achieve this divides our country, raising as it does profound ethical and practical issues. These include how best to strike the balance between the freedom to do as you desire and the kind of society we want to be and for many, it is about the sanctity of human life itself; and whether the choice is really between dying in agony or dying with assistance. For in my view, assisted dying is not the only option available, nor even a good option when set against the palliative support that could be available in ensuring a good death.
I learned a lot about the need for improved end-of-life care when writing some years ago about the life of Dame Cicely Saunders for my book Courage. Saunders was rightly shocked by the marginalisation of those who were called the “incurables”, and what she saw as their abandonment and betrayal by the conventional medicine of the time. Her brave, groundbreaking investigations and relentless campaigning showed how the last months and days of someone’s life can be dignified, worth living and even pain-free.
For two weeks in the summer of 2009, Sarah and I volunteered in our local hospice, an NHS-run building situated in hospital grounds. Again we saw at first hand how sensitive doctoring and compassionate nursing responded to individual needs and wishes. On a more recent occasion, when I visited the hospice at Christmas time, I met a school classmate of mine, and what struck me most about our bedside conversation was how grateful she was for the help, support, care and love she was being given as she faced her last days. It convinced me that we can ensure there is such a thing as a dignified death.
Yet many will still feel they have to make painful decisions in terrible circumstances when, as Kim Leadbeater has put it, their only options are Switzerland, suicide or suffering. “Heal the sick, comfort the dying – and don’t get them mixed up,” a doctor friend advises. In the spirit of this injunction, great progress has already been made in reducing uncomfortable and unhelpful interventions, and patients can now agree advance directives that give them the power to determine, when they are well and of sound mind, their future treatment. Landmark rulings by Keir Starmer and his successor as director of public prosecutions mean anyone, including a doctor or nurse acting with compassion to help end the life of someone who had made a “voluntary, clear, settled and informed’’ decision they could not go on living, is unlikely to face criminal charges. In the past 15 years, 187 cases have been examined and only four prosecuted.
But the proposed new law has downsides left unresolved by the suggested model of two doctors and a high court judge, not least insufficient protection against pressures, however subtle, on frail and vulnerable people who may feel their lives have become burdensome to others. Already a staggering 375,000 people over 60 in England and Wales are estimated to be victims of abuse every year, and as Dutch ethicist Professor Theo Boer – who changed his position after reviewing thousands of cases – has found, many do feel under pressure to “make way”. An assisted dying law, however well intended, would alter society’s attitude towards elderly, seriously ill and disabled people, even if only subliminally, and I also fear the caring professions would lose something irreplaceable – their position as exclusively caregivers. Add to that the slippery slope with lawmakers, undoubtedly out of compassion, finding the erosion of safeguards and the extension of eligibility hard to resist.
But I also know that, as things stand, care and on-hand personal assistance is still in short supply for terminally ill people, and end-of-life care is the biggest postcode lottery of all. Estimates suggest that more than 100,000 people with terminal or life-limiting conditions in the UK who die each year do not receive the specialist care they deserve. With only one-third of overall costs borne by the NHS, many of the UK’s 200 hospices, which together support about 300,000 people annually, face cuts and redundancies.
According to the Focal Data poll I have seen, more than half of the country is not confident that the government will be able to pay for their end-of-life care, while 51% think assisted dying will inevitably discriminate against those who cannot afford end-of-life support. For these reasons, 70% of the public want to prioritise social end-of-life care before thinking about assisted dying and I believe that as part of that, a commission on end-of-life care should devise a thought-through, fully funded, 10-year strategy for improved and comprehensive palliative care.
To create change, you have to bring people with you. Britain usually moves too slowly on those matters where it should move fast. But sometimes, as now, it can move too fast on an issue where it should go slower, listen and learn. And with the NHS still at its lowest ebb, this is not the right time to make such a profound decision. Instead, we need to show we can do better at assisted living before deciding whether to legislate on ways to die.
When only a small fraction of the population are expected to choose assisted dying, would it not be better to focus all our energies on improving all-round hospice care to reach everyone in need of end-of-life support? Medical advances that can transform end-of-life care and the horror of people dying alone, as with Covid, have taught us a great deal. This generation have it in our power to ensure no one should have to face death alone, uncared for, or subject to avoidable pain.