Assisted Dying: Does it offer real choice at the end of life?

A transformation of palliative care is urgently needed to offer individuals real choice at the end of life and to ensure that the care provided is in keeping with their wishes and preferences, says John Unsworth

The recent landmark vote in the House of Commons to progress the Assisted Dying Bill, more formally known as the Terminally Ill Adults (End of Life) Bill, brings the choice of assisted dying a step closer.

Proponents of the Bill have argued that it would give competent adults within England and Wales, with six months or less to live, a choice of an assisted death. However, the current state of palliative care and community health services means that choice for many people is already severely limited.

While many people end their life in hospital, around half of all deaths occur at home or in a care home. These individuals are cared for by GPs and community nurses. Yet since 2010 the number of GPs and community nurses has fallen. GPs have decreased by 15% and district nurses by a staggering 43%.

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The result of cuts, and unfilled posts, is less support for people choosing to end their life at home

At the same time the care home registered nurse workforce has a vacancy rate of 9%. The result of these cuts, and unfilled posts, is less support for people choosing to end their life at home.

The reduction in district nurses alone has left many people needing palliative care without access to support: 48% of district nursing teams have described having to defer care because of capacity issues and the government’s own Commission on Palliative and End-of-Life Care, set up in the wake of the Assisted Dying Bill, has raised concerns about district nursing shortages.

Alongside workforce issues, palliative care is severely restricted by reduced funding for hospice care and charity services. The hospice sector relies heavily on fund raising with, on average, only 30% of their costs being met by the NHS. The collective deficit of hospices in the UK is now £77million according to Hospice UK with many hospices reducing services. Even Macmillan Cancer Support, a long term provider of specialist palliative care services, has identified a workforce crisis and is having to reconsider funding for its helpline as well as financial hardship scheme.

All of this is a sad reflection of more than a decade of underfunding and cuts. But the UK used to be seen as a leader in the field of palliative and end-of-life care. Through a process of continuous development and national strategies the UK advanced a Gold Standards Framework focusing on choice, improved access and addressing unmet need. Advance care planning alongside preferred place of care discussions enabled individuals and their families to plan for the end of their life. Hospice services grew progressively until the late 1980s, and a wide range of specialist medical and nursing roles were created to support excellent end-of-life care.

With investment and an invigorated strategy, we can again develop outstanding palliative care services which will enable real choice. This requires a renewed focus on community health services and support for the charity sector who provide many NHS services. The Labour government has committed to a shift from hospital to home, where it is appropriate, but there is little detail of how this will be achieved.

Related Article: Health secretary ‘not comfortable’ with how hospices are funded

The Rt Hon Wes Streeting, Secretary of State, has publicly said that the Assisted Dying Bill will take money away from NHS front line care in order to ensure that the safeguards are in place.

Current plans do not detail how the government will enhance palliative care services and the long-promised reversal of falling GP and district nursing numbers are yet to materialise.

This is of concern as there is not much more ‘fat to trim’ from primary care and community health. However, current plans do not detail how the government will enhance palliative care services and the long-promised reversal of falling GP and district nursing numbers are yet to materialise.

Indeed, the government recently announced the end of funding for apprenticeships which will half the number of district nurses in training overnight. There is no credible plan to address this. If the Assisted Dying Bill becomes law, the government will have until 2029 to address more than a decade of decline and stagnation.

Without effective and universal palliative care services real choice will be impossible – there lies the danger in any assisted dying legislation. Whatever your views on assisted dying no one should be left without any choice but to accept that option. We can transform palliative care in this country to offer individuals real choice, working in partnership to ensure that the care provided is in keeping with their wishes and preferences.

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John Unsworth is a registered nurse and Professor of Community Nursing Workforce and Policy at Northumbria University. He is a former NHS director and district nurse. He is the chair of council of the Queen’s Institute of Community Nursing and a Fellow of the Royal College of Nursing and the American Academy of Nursing.