By Alexandra Mullock, Suzanne Ost, and Nancy Preston
With lawful assisted dying (AD) on the horizon in England and Wales with the Terminally Ill Adults (End of Life) Bill, and elsewhere in and around the UK (Isle of Man, Jersey, Scotland), important questions about how best to establish a service to provide safe access to AD must be addressed. Assuming the English Bill becomes law, deciding how to create a service enabling AD will be one of the most complex and ethically fraught challenges ever given to a Health Minister, especially one (Wes Streeting) who is opposed to AD.
While it seems ethically reductive to consider whether AD should be legalised on the basis of what it would cost, or indeed what costs might be saved, the financial and workforce implications will define the ethical impact, feasibility and sustainability of any service. For example, if AD ultimately saves care costs, the saving might be used to improve end-of-life care. But if the reverse is true, the challenge of funding a safe AD service without reducing resources for existing end-of-life services must be addressed. The fact that palliative care is not fully funded by the state and not universally available intensifies the challenge of ensuring that people do not turn to AD because they fear that palliative care will not be available or good enough.
According to the Government’s Impact Assessment, there is potential for possible cost savings from unutilised care costs. This will be more significant if a greater number of people die by AD. This potential has been confirmed by experiences in lawful jurisdictions, such as Canada. If many people access AD and more of those having AD die as soon as possible after being given authorisation, the unutilised health and social care cost savings may be significant. However, given the lengthy (nine-stage) process of the English Bill, which includes assessments by two doctors, two cooling-off periods, a multi-disciplinary panel assessment and other formalities, many will die before they receive approval. Others will be deemed ineligible, or lose mental capacity to consent to AD. Most people actually having an AD will be close to the end of their natural life, so the need to provide good end-of-life care and holistic support for the dying may be only minimally diminished by lawful AD. Consequently, predictions of saved care costs may have been overestimated, especially since the cost of establishing, resourcing and monitoring the AD service will be significant.
The arrangements and positioning of any AD service will be crucial in shaping the impact of lawful AD. Should the service be established within existing NHS services or as a distinct service? The model adopted in many jurisdictions involves AD that is state-funded and integrated within healthcare systems. If AD is established within existing NHS services, patients may receive care and assistance to die alongside patients receiving traditional end-of-life care. This could encourage more holistic provision of care, treatment and the potential availability of an assisted death in the final stages of a terminal illness. It might also be less costly than establishing a separate service. However, most palliative care doctors in the UK are opposed to assisted dying, which will impact on whether assisted dying can be integrated into all services. In Canada, for example, challenges have arisen where palliative care units do not allow any aspect of AD to occur on their premises; people have had to leave the unit and meet assessors in a café, or be discharged to have the assisted death elsewhere.
End-of-life care is a complex network of services provided by hospitals, hospices, care homes and at home, where GP, hospice at home services and community nurses all play a role, and so coordination of care is a key concern. Adding AD services could increase existing complexities and inequity in access to care, with a particularly detrimental impact on minoritised groups.
One alternative could be a state-funded but distinct service alongside existing provision, with signposting to the AD service from within the NHS. This may be comparable to early medical abortion services – state funded but with distinct provision outside the NHS – involving not-for-profit third sector organisations such as the British Pregnancy Advisory Service. This would avoid some of the concerns discussed, and may be favoured by medical bodies, who have expressed a preference for a separate pathway. Other problems might arise, however, such as protests outside known locations. This would necessitate safe access zones to protect patients and staff, as has recently been in place around abortion clinics.
A completely private AD service does not seem to be on the cards given the firm commitment to state-funded provision. But given the NHS funding crisis, should a hybrid, partially state-funded, partially private model be considered? Currently, much end-of-life social care and palliative care is paid for through charity funding. One way in which partial state funding of a hybrid AD model might be supported is through charity funding. While such an approach might potentially increase obstacles to access, it might avoid the unethical possibility of the State providing free access to assisted dying but not to good end-of-life and/or palliative care.
Authors: Alexandra Mullock (1), Suzanne Ost (2), Nancy Preston (3)
Affiliations:
- Law Department, Centre for Social Ethics and Policy, The University of Manchester, Manchester, UK
- Law School, Lancaster University, Lancaster, UK
- Lancaster University, Lancaster, UK
Conflicts of Interest: No conflicts of interest to declare
Social Media: Alexandra Mullock | LinkedIn; Suzanne Ost | LinkedIn; Nancy Preston | LinkedIn