Palliative care aims to improve the quality of life of people living with life-threatening illness and people close to them. It prevents and relieves suffering and focuses on helping people to live well until the end (Hospice UK 2020).
Worldwide approximately only 14% of people who need palliative care currently receive it. In the UK, 90% of people who die would benefit from palliative care, meaning over 600,000 people each year need it; a figure only going to increase as the population ages and the complexity of conditions from what people are dying from increases.
If the current trend continues, the demand for palliative care in England and Wales is expected to increase to as much as 47% with the total cost of hospice provision to meet this demand estimated at £947 million per year of the next ten years.
The Terminally Ill (End of Life) Parliamentary Bill has led to emotive debates over recent weeks. The news last Friday that MPs have backed proposals to legalise assisted dying in England and Wales will come as welcome news to some who see it as ‘progression’ towards a ‘dignified death’. Others however have ‘grave concerns’ for the ‘vulnerable’ in society and the negative impact the bill will have on palliative care and society as a whole.
In my role as an emergency nurse and as a researcher in palliative care for many years, I have seen what I would consider both good and bad deaths.
In countries where assisted dying (AD) is lawful, there have been clinical, social and political concerns which we must try to learn from before adopting similar practices. The first hurdle for the Terminally Ill Adults Bill has passed, and we now need to use time wisely to address five urgent palliative care priorities if AD is every likely to work in the UK
1. Palliative and end of life care needs to be equitable to all who need it
Everyone should have access to good palliative care before they consider assisted dying. Otherwise, there is no choice.
Currently this is not the case.
Palliative care eases symptoms and provides emotional and practical support to people and their families but currently not everyone has access to that service. The Health and Care Act (2022) requires all Integrated Care Boards (ICBs) to commission palliative care services for all who need it.
Recent data suggests that services are patchy, particularly in rural or deprived areas and for certain conditions that are not cancer-related.
We would hope in a country regarded as the home for modern palliative care and consistently ranked as top for quality of death that the quality of care is consistent, and must be urgently addressed.
The AD bill will have a considerably impact on Palliative and End of Life Care. The issues raised here need addressing urgently before the consequences are too severe to correct.
2. Financial sustainability is needed for hospice care that is integrated into the wider system
Hospices rely on charitable donations to run essential services that meet the growing needs of patients needing specialist palliative care and this is not a sustainable model.
As we read in our recently published editorial hospices are innovating to meet increasing demand but funds are not following. Hospices are being forced to cut back and even close service provision due to the lack of core funding.
Core funding needs to be increased to provide high quality care to those who need it and ensure that assisted dying is not the only option people feel they have in the absence of good palliative care.
3. Workforce and Public Education needs to be improved and implemented
Decisions and practices must be made on an informed basis.
There is a substantial lack of knowledge around what AD is likely to entail and the specifics of the model likely to be adopted. Surveys and polls suggest that the majority are in favour of assisted dying (between 65%-80% of the population) but people may not understand what assisted dying entails and who it will benefit – which is probably not those who need it most.
Those suffering in society such as those living with dementia or motor neurone disease will not be eligible at the time that they need it.
The UK All-Party Parliamentary Group for Dying Well highlighted that only 43% of respondents were actually informed about what the term meant suggesting caution over public support for AD.
Health and social care professionals (including those in the voluntary sector) also need better education about AD.
Whether or not it becomes integrated into palliative care (which concerns many clinicians), those that care for people at the end of life will undoubtedly be asked about AD. More knowledge is urgently needed to equip those in positions of trust and support those directly dealing concerns that their patients and carers have.
4. A solid legal and professional framework needs to be in place to support appropriate safeguards and protect the vulnerable
Developing a law that is ‘fit for purpose’ around assisted dying will be fraught with challenge.
A change in the law should equate to more people in society benefiting than being harmed. People adapt as disease progresses and what one may feel they cannot live with or live without whilst in a fully functioning state changes and quality of life is perceived differently as death nears.
The proposed safeguards are not sufficient to protect the vulnerable, particularly those who are older, frail and dependent on family or care services, some that may appear to be costing considerable sums of money and not experiencing a good quality of life.
It is very likely that people will feel helpless and a burden, and it is most likely this group of people who will utilise the AD request. The impact of such will change societal view of the older population, the infirm and dying – no legal safeguard can stop that.
5. Research is needed to provide a stronger evidence base on the involvement of palliative care in the developing practices of assisted dying
If assisted dying is endorsed in England (and other parts of the UK), there is an urgent need for additional research into the impacts on patients, health and social care staff, volunteers providing end of life care and wider communities, particularly around adequate safeguards and the impact on vulnerable people in society.
AD has fast become a public health issue that needs an evidence base to ensure the decisions being made are informed, fair and just.
Professor Cara Bailey, Professor of End of Life Care at the University of Birmingham