Assisted dying and end of life care: how can learning from overseas inform what happens next?

After a long and controversial battle, the Terminally Ill Adults Bill – which would have legalised assisted dying in England and Wales – last week ran out of time in the House of Lords, and will not now be able to pass in this parliamentary session. Just a few weeks ago, the Assisted Dying Bill in Scotland was also voted out by the Holyrood parliament.

Yet with continued public support for legalising assisted dying, there is a strong likelihood that either the England and Wales bill, or a similar one, will return within the next few years, and possibly as early as the next session in parliament. Many parliamentarians who spoke or voted against the bill in Westminster or Holyrood cited concerns about the details of the particular bills (such as who is eligible and how safeguards operate), rather than being ethically opposed to assisted dying. 

From our study of how 15 jurisdictions in nine countries implemented assisted dying, we know there are lessons that are relevant for what might happen next. Understanding how assisted dying operates in practice elsewhere will be crucial if future legislation is to be workable, equitable and aligned with existing end of life care. 

Important findings from other countries have received little attention in recent debates, with two issues in particular deserving more focus when the subject is yet again under the spotlight in the UK. They are how assisted dying services may operate alongside palliative and end of life care, and how access is ensured for those who are legally eligible.

How can assisted dying services operate alongside palliative and end of life care?

The question of whether or not assisted dying is part of health care has been a point of division, with former chief executive of the NHS Lord Stevens being one of a number of high-profile opponents who have argued that assisted dying should not be part of the health service.

However, most people seeking assisted dying are also users of end of life care services. International evidence shows that people who access assisted dying services tend to be older, over half have a cancer diagnosis, and most are also receiving palliative care. People seeking an assisted death have end of life care needs and should continue to receive care in parallel with requesting an assisted death. 

In almost all of the countries we looked at (with Switzerland being the exception), assisted dying is part of the health service. Infrastructure to support assisted dying has been established within existing health systems to support referral, manage eligibility, train clinical staff, oversee drugs used in assisted deaths, and monitor the process.

A thorny issue for the UK, which has not been well addressed by the legislative process so far, is how assisted dying services will be funded. In most of the countries we looked at, with the US being an exception, funding for assisted dying is part of citizens’ entitlement to health care, whether that is funded via insurance or public benefits. 

In the UK, over half of specialist palliative care provided by hospices is funded through charitable giving, leading to inequalities in access to care. There is already an urgent need to develop a more sustainable approach to commissioning and funding models for specialist palliative care – a point highlighted during debates about the bills in Westminster and Scotland. Introducing assisted dying without addressing the already fragile funding model for palliative care risks compounding existing inequities in end of life support.

What needs to be considered to ensure people who are legally eligible for assisted dying can access it? 

Debates about the bills understandably focused on safeguards to protect individuals from being coerced to have an assisted death. However, based on the 15 jurisdictions included in our study, breaches of statutory safeguards are rarely reported in official monitoring and evaluation reports. 

Instead, we found that reviews and oversight bodies were much more concerned about barriers to accessing assisted dying. They included factors such as geography (particularly for people in rural or remote areas), negotiating complex administrative systems, and socioeconomic factors (particularly if accessing assisted dying incurs a cost). 

Features of how assisted dying has been implemented (such as workforce requirements, or whether telehealth could be used for assisted dying conversations) can also create obstacles or delays. Balancing having the right safeguards with enabling access for eligible individuals who seek assisted dying is an ongoing issue for jurisdictions where assisted dying is already legal.

Assisted dying can mean additional roles for carers or family members, depending on how it is implemented, such as navigating the assessment process to determine eligibility, providing ongoing support to the individual requesting assisted dying, and preparing for the assisted death itself. This has implications for how policymakers think about support, providing information, and respite for families involved in the process.

For these reasons, some countries have established specific roles or services to support people requesting an assisted death.

Implications for end of life care and helping people have a better death 

Both opponents and proponents of the recent bills acknowledge that far more needs to be done to improve the quality and consistency of end of life care, to mean that everyone dies with comfort and dignity.

Current gaps in palliative and end of life care services that lead to variation in access, support and experience have gone unaddressed for too long, regardless of when legislation on assisted dying returns. We know from other countries that even if assisted dying became legal, the vast majority of deaths are not assisted, and so would not have been affected by this bill.   

There are significant gaps and inequalities in palliative and end of life care services across the country. Provision from hospices and specialist services is patchy and underfunded, there is an overreliance on hospital care at the end of life, and community services (such as district nursing) are stretched.

These gaps in end of life care provision are exacerbated by a lack of experience and willingness among clinicians to discuss death and dying, along with the difficulties that individuals face when making care plans and talking about these with families and loved ones. Together these can lead to medical interventions that escalate by default rather than choice – missing opportunities to align care with what people actually want at the end of life. 

The recent discussion and debate on assisted dying have potentially opened up broader conversations about how we best care for people as they approach death. This is not only important for individuals and their families, but society as well. Death and dying are too often seen as taboo, but if we cannot talk about it directly then it’s hard to improve experience at the end of life in a way that reflects individuals’ needs and preferences. 

Future debates are also an opportunity to continue to learn from other countries and how they’ve treaded the fine line between safety and access, and to reflect on how different models of oversight, data collection and evaluation operate internationally. 

Learning how other countries have approached oversight, data collection and evaluation – and how they’ve continued to learn and adapt following such a societal shift – can also help ensure transparency and public confidence, whatever legislative path is ultimately taken. Whether and when further legislation on assisted dying returns to parliament, confronting long-standing shortcomings in end of life care must start today.