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The author is the CEO of Hospice UK
The votes by lawmakers to pass the terminal adult (end of life) bill represent earthquake milestones for death and death in England and Wales. The views of dying vary widely, mostly inconsistent and passionately held. However, the argument is characterized by deep beliefs and deep empathy on both sides.
Kim Leadbeater’s introduction and passing of the bill has thrown the questions we often avoid, both as individuals and as a society, into the mainstream. What death, and what choice do you want people to have over that death?
This is not an academic question. We will all die, and our rapidly aging population means that many of us will do much more than our previous generations. The NHS’ next 10-year planning period is projected to kill 7 million people in the UK, with roughly 1 million people predicting that there will be supplementary deaths if available, between less than 1% in the past decade. What can we expect from the rest of us?
Already, too many people are unable to get the care they need at the end of their lives, causing avoidable pain, pain and heartache. This is especially true within excluded communities and groups. Opponents of the bill should be grateful for the risks that highlighted what changes in the law mean for the most vulnerable members of society, and are already marginalized and distrusted by health and social care services and providers.
The period before death will come to provide important measures of the skills and values of governments, politicians and institutions such as the NHS. To what extent can they use it to transform access to palliative care for the population across the UK, particularly vulnerable and excluded groups?
The complexity of this potentially four-year implementation period cannot be overstated. The bill has little definition of what the service will look like or where it will sit. Hospice UK, as representative of the country’s hospice, welcomes provisions requiring consultations with palliative care providers. But the truth is that we are all still mostly in the darkness.
How do hospice and other healthcare providers prepare to assist their dying services? Will it be entirely state funding? If so, can the government, in conscience, leave many of the professional care services of British professionals, be provided and funded by hospice charities?
How does legalized dying death affect chronic labor challenges? And how can this issue not derail or distract from the promisingly important health care reforms the nation needs?
We certainly want to be a country where everyone has the care they need at the end of their lives, including the deaths they choose. For some, helping them die now appears to be an important part of that choice in the future.
However, actual choices can only be provided along with the benefits of precare planning to ensure that people have comfort and dignity in the end.
Supplementary death choices should coincide with broader and more equitable access to mitigation and end-of-life services, whether provided by hospice, GPS, hospitals, district nurses, or nursing homes. And this choice must be strengthened by much greater NHS investments in palliative and end-of-life care, with an urgent focus on providing as many of these services as possible to the homes of as many people as possible.
When the law changes, you probably don’t think that no one has to choose to end their lives early, fearing that they will not be able to get the care and support they need.
