“Revamping Palliative Care: Five Essential Changes Needed by 2025 for Successful Assisted Dying”

Palliative care focuses on enhancing the life quality of individuals facing life-threatening illnesses and their relatives. It alleviates and prevents suffering, concentrating on supporting individuals to live well until the very end (Hospice UK 2020).

Globally, only around 14% of individuals in need of palliative care currently receive it. In the UK, 90% of people who pass away could benefit from palliative care, translating to over 600,000 individuals annually requiring it; a number that is poised to rise as the population grows older and the complexity of diseases increases.

If the existing pattern persists, the demand for palliative care in England and Wales is anticipated to rise by as much as 47%, with the total expenditure for hospice services to meet this need projected at £947 million annually over the next decade.

The Terminally Ill (End of Life) Parliamentary Bill has sparked passionate debates in recent weeks. The announcement last Friday that Members of Parliament have supported proposals to legalize assisted dying in England and Wales may bring delight to some who regard it as ‘progress’ towards a ‘dignified death’. Conversely, others express ‘serious concerns’ for the ‘vulnerable’ members of society and the detrimental effects the bill might have on palliative care and the community overall.

In my experience as an emergency nurse and as a researcher in palliative care for many years, I have witnessed what I would categorize as both positive and negative endings.

In nations where assisted dying (AD) is permitted, there have emerged clinical, social, and political challenges from which we must learn before considering similar approaches. The first obstacle for the Terminally Ill Adults Bill has been overcome, and we must now use this time effectively to tackle five pressing palliative care priorities if AD is ever to be implementable in the UK.

1. Palliative and end of life care must be accessible to everyone in need

Everyone deserves access to quality palliative care prior to contemplating assisted dying. Without this, there is no real choice.

This is not presently the situation.

Palliative care alleviates symptoms and offers emotional and practical assistance to individuals and their families, yet not all have access to this service. The Health and Care Act (2022) mandates that all Integrated Care Boards (ICBs) provide palliative care services for everyone who requires them.

Recent statistics indicate that service availability is inconsistent, particularly in rural or disadvantaged areas and for certain non-cancer conditions.

We would expect that in a nation esteemed as the birthplace of modern palliative care and commonly rated highly for the quality of dying, the standard of care ought to be uniform and must be addressed immediately.

The AD bill will have a significant influence on Palliative and End of Life Care. The concerns highlighted here require urgent attention before the repercussions become too severe to amend.

2. Financial durability is essential for hospice care that is integrated into the broader system

Hospices depend on charitable contributions to operate vital services that address the increasing demand of patients needing specialized palliative care, but this model is not sustainable.

As indicated in our recent editorial publication, hospices are innovating to meet rising demand, yet funding is not keeping pace. Hospices are compelled to reduce or even cease service delivery due to insufficient core funding.

Core funding must be increased to deliver high-quality care to those in need and to ensure that assisted dying does not become perceived as the only viable option in the absence of adequate palliative care.

3. Enhancement and implementation of Workforce and Public Education is crucial

Choices and practices must be made based on informed understanding.

There exists a vast gap in knowledge regarding what AD is likely to involve and the particulars of the model likely to be adopted. Surveys and polls indicate that a majority support assisted dying (between 65%-80% of the populace), yet many may not fully grasp what assisted dying entails and who it may benefit – which is likely not those in greatest need.

Individuals suffering within society, such as those coping with dementia or motor neurone disease, may find themselves ineligible when they truly require it.

The UK All-Party Parliamentary Group for Dying Well has drawn attention to the fact that only 43% of respondents were genuinely informed about what the term meant, hinting at caution regarding public backing for AD.

Health and social care professionals (including those in the voluntary sector) also require enhanced education about AD.

Whether or not it gets integrated into palliative care (a concern for many clinicians), those caring for individuals nearing the end of life will undoubtedly face inquiries about AD. Greater knowledge is urgently required to empower those in trusted positions to address the concerns of their patients and caregivers.

4. A robust legal and professional framework is essential to support appropriate safeguards and protect the vulnerable

Crafting legislation that is ‘fit for purpose’ concerning assisted dying will be riddled with challenges.

A legal change should lead to a greater number of individuals in society benefiting rather than being harmed. People adapt as diseases progress, and what one may feel they cannot live with or without while fully functional alters, with perceptions of quality of life shifting as death approaches.

The anticipated safeguards are inadequate to protect the vulnerable, particularly the elderly, frail, and those reliant on family or care services, some of whom may seem to incur significant costs while not enjoying a satisfactory quality of life.

It is highly probable that individuals will feel powerless and like a burden, and it is most likely these individuals who will utilize the AD request. The ramifications of such will alter societal perspectives regarding the elderly, the ill, and dying individuals – no legal safeguard can prevent this.

5. Research is necessary to establish a more robust evidence base on the involvement of palliative care in the evolving practices of assisted dying

If assisted dying is approved in England (and elsewhere in the UK), there is an urgent requirement for extensive research into its effects on patients, healthcare and social care staff, volunteers providing end-of-life support, and broader communities—particularly regarding adequate safeguards and the effects on vulnerable individuals within society.

AD has rapidly become a public health matter that requires an evidence base to ensure decisions made are informed, equitable, and just.

Professor Cara Bailey, Professor of End of Life Care at the University of Birmingham