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Roula Khalaf, Editor of the FT, selects her favourite stories in this weekly newsletter.
The writer is chief executive of Hospice UK
The vote by MPs to pass the Terminally Ill Adults (End of Life) Bill represents a seismic milestone for death and dying in England and Wales. Views on assisted dying are varied, largely irreconcilable and passionately held. Yet the debate has been characterised by deep conviction and deep empathy on both sides.
The introduction and passage of Kim Leadbeater’s bill threw into the mainstream a question we often avoid, as individuals and as a society. What kind of death, and choice over that death, do we want people to have?
This is no academic question. All of us will die, and our rapidly ageing population means far more of us will do so over coming years than in previous generations. In the NHS’s next 10-year plan period, 7mn people in the UK are forecast to die, around a million more than during the previous decade Under 1 per cent are predicted to have an assisted death if available. What can the rest of us expect?
Already, too many people fail to get the care they need at the end of their lives, causing avoidable pain, distress and heartache. This is especially true within excluded communities and groups. Opponents of the bill should be thanked for the risks they have highlighted of what a change in the law could mean for society’s most vulnerable members, already marginalised from and distrustful of health and social care services and providers.
The period before assisted dying is introduced will now offer an important measure of the skill and values of the government, politicians and institutions like the NHS. To what extent can they use it to transform access to palliative care for the whole UK population, especially those in vulnerable and excluded groups?
The complexity of this potentially four-year implementation period cannot be overstated. The bill defines little about what the service might look like, or where it might sit. As the representative of the country’s hospices, Hospice UK has welcomed a clause requiring consultation with palliative care providers. But the truth is that we are all still largely in the dark.
How will hospices and other healthcare providers prepare for an assisted dying service? Will it be fully state funded? If so, can the government in good conscience continue to leave so much of the UK’s specialist palliative care services to be delivered and funded by hospice charities?
How will legalising assisted dying impact chronic workforce challenges, given how many palliative care medics have threatened to leave the sector should it be offered where they practice? And how do we ensure this issue doesn’t derail or distract from the promised critical healthcare reforms the country needs?
We surely want to be a country where everyone gets the care they need at the end of their life, including the death they choose. For some, assisted dying now looks like being an important part of that choice in future.
But a real choice can only be offered alongside a better public understanding of palliative and end of life care, as well as the benefits of advance care planning to ensure people have comfort and dignity at the end.
Choice of an assisted death needs to coincide with wider and more equitable access to palliative and end of life services, whether these are delivered by hospices, GPs, hospitals, district nurses or care homes. And this choice must be strengthened by far greater NHS investment in palliative and end of life care, with an urgent focus on delivering as many of these services as possible in or close to people’s homes.
When the law does change, nobody should ever feel they have to choose to end their life early for fear they won’t get the care and support they need.
