Assisted dying in practice: International experiences and implications for health and social care

Research summary

The Nuffield Trust holds a neutral position on the ethical question of whether or not assisted dying should be legalised, for whom, and in what circumstances. We are committed to identifying evidence to support decision-makers in understanding the effects that legalisation may have.

At the time of this report, the UK and Scottish Parliaments were debating bills to legalise assisted dying across England, Scotland, and Wales. But key decisions on funding and implementation have not yet begun, and references to the experience of other countries are often based on partial evidence.

This project aims to assemble comprehensive international evidence from similar countries which have legalised assisted dying and faced the complex issues this creates for health care systems, patients, and staff. If parliamentarians choose a change of law in the UK, we hope this report, building on our earlier article comparing policies in different countries, can provide a resource for identifying likely issues, and enable us to learn from the challenges of others.

Our approach

We restrict our research to lessons from 15 jurisdictions in nine high-income countries with populations of more than three million people where assisted dying is legal: Australia, Austria, Belgium, Canada, the Netherlands, New Zealand, Spain, Switzerland and the US. Our focus is on evidence of the effects of assisted dying on health and care systems. Impacts on the legal system or the political or social drivers that led to initial legislation are out of scope of this report; however, we do discuss changes to legislation and the implications for practice.

Our methodology combined the insights from official sources of data and statistics in the different countries, government policy documents and reports, academic literature covering each jurisdiction, our project advisory group and patient and public involvement. In total we reviewed 258 academic papers and policy documents.

Key findings

Who receives assisted dying?

Experience in other countries gives insight into which groups of people tend to access assisted dying after it is legalised, which has been a topic of considerable debate in the UK.

• Most of those accessing assisted dying services have a diagnosis of terminal illness. Even in countries where this is not a requirement, a large majority had a terminal diagnosis – 79% in Belgium and 96% in Canada. The majority, 75% or higher, were receiving palliative care.
• People who access assisted dying services tend to be older: the median average age in each jurisdiction studied ranged between 69 and 80 years old. Cancer was the most common diagnosis, with between 55% and 80% having a reported diagnosis.
• Loss of ability to engage in meaningful activity and loss of autonomy are the most commonly reported reasons why people access assisted dying services.
• Where self-administration is a requirement, there tend to be fewer assisted deaths, as a proportion of all deaths, than where clinician administration is an option. In jurisdictions that allow only self-administered dying, assisted deaths make up less than 1% of all deaths, with the exception of Switzerland where there are well-established voluntary organisations supporting people through the process.

Infrastructure for implementation within the health and care system

The introduction of assisted dying has required new processes, data, organisations, and in some cases new types of staff to monitor compliance, ensure safety and support access to services. The complexity of establishing this system infrastructure necessitates substantial lead time. Australian states relied on intensive 18-month implementation periods during which departments of health, and care organisations, prepared for assisted dying.

Most systems have established oversight functions – in the form of committees, designated roles or boards – to monitor and assure compliance with assisted dying legislation. In some countries, like the Netherlands and Belgium, these are focused on retrospective review – examining processes and procedures once an assisted death has occurred. In others, like Spain, committees examine and review processes before an assisted death can happen, as well as retrospectively.

Almost all jurisdictions produce formal assisted dying reports, usually annually. Demographic data about individuals enable countries to monitor access and identify service gaps, which are often a serious concern with respect to equity and safeguards.

Many governments provide public guidance and information, even though restrictions may be in place about promoting assisted dying, and some countries have a government unit with responsibility for this. Western Australia provides a range of information resources, including information sheets for patients and families, in addition to signposting them to information about considerations at the end of life more broadly. In California, health care providers are required to publish their policies, so that individuals are informed about what services are offered when selecting long-term or end of life care.

Capacity and resources

Building the capacity for assisted dying has been a significant and ongoing challenge in many countries. Estimates of funding within the UK government’s impact assessment are limited to direct costs - for example, for staff directly involved. However, international evidence demonstrates that wider costs need to be considered, to develop the infrastructure to support implementation of assisted dying services.

Across all jurisdictions that have legalised assisted dying, the proportion of assisted deaths has increased over time, even when eligibility criteria have not changed. For example, in Oregon the proportion of deaths which were assisted has risen from 0.2% in 2010 to 0.86% in 2023. Policymakers in the UK need to consider that assisted dying would place added pressure on NHS, hospice and social care capacity — both  because managers and organisations will have a substantial task implementing the policy, and because of the staff time, space and resources needed to meet rising demand for it. Capacity needs to account for more people requesting an assisted death than those who ultimately have one. For example, 51% of requests in Queensland and 49% in Victoria resulted in an assisted death. Any country introducing assisted dying needs to plan for ongoing investment rather than treating infrastructure development as a one-time implementation cost. Mechanisms for paying for assisted dying, for providers and independent practitioners, also need to be considered.

Impacts on individuals, families and carers

We identified limited evidence of the experiences of people who have (or seek) an assisted death. The evidence that was available suggested that people can find the process reassuring and that it can give them a sense of control, even if they do not go on to have an assisted death.

Barriers to accessing assisted dying are a serious concern in several countries. They exist at individual, organisational and system levels and include factors such as:

• geography (particularly for people in rural or remote areas)
• health literacy
• socioeconomic factors (particularly if accessing assisted dying incurs a cost)
• illness or disability.

Evidence from family carers and people bereaved following an assisted death identifies additional burden on family carers to help individuals navigate the assisted dying process.

The lack of coordination in end of life services in the UK, and the known disparities between different groups, may intensify barriers patients face accessing assisted dying services.

Carers reported mixed feelings regarding assisted dying. On the one hand, they were glad suffering was being relieved and that they were supporting the person’s wishes by helping them to plan and prepare for the death. But assisted dying can also cause carers to feel guilt, trauma or stigma. Access to bereavement and grief support is variable, with several jurisdictions identifying the need to improve it. Australian states have developed bereavement guides, care navigators and liaison nurses to support families and individuals throughout the process

Impacts on staff and organisations’ engagement and experience

Staff involved in end of life care are often those most likely to be delivering assisted dying services, with general practitioners most often directly involved. It could be one of any number of practitioners that an individual talks to about their wishes, though, and they all need to be equipped to at least start the conversation appropriately.  

Experience from other jurisdictions suggests that health care providers must be able to step away from particular cases that cause them moral distress, otherwise they become reluctant to be involved in assisted dying at all. However, evidence from Canada and Australia shows that opt-outs can create significant access barriers for patients, particularly in rural areas and faith-based institutions.

Where data is available on numbers of staff involved it indicates that a relatively small number of clinicians are directly involved in delivering assisted dying. In Victoria, Australia, 10 physicians either coordinated or consulted on 55% of all cases in 2023/24. Training and support for staff is critical to ensure engagement, and greater familiarity with assisted dying has been found to increase willingness to participate in services.

Key staff groups such as nurses and pharmacists are often missed out from guidance and training for assisted dying, with one study suggesting nurses in Canada felt “relatively invisible” from training procedures. Social care providers and staff play a significant role in providing end of life care, but are largely missing from legislation, guidance and research evidence from the countries we looked at.

Recommendations

Capacity and preparation

• Lack of capacity, both to deliver assisted dying and to support people who request it, can be a serious issue. With organisational capacity in UK health systems already under pressure, implementing assisted dying will add complexity. Careful preparation is essential before assisted dying laws become operational, and there must be a significant lead-in time.
• Policymakers in the UK should anticipate that if assisted dying is legalised, there will need to be a range of new infrastructure and services required, covering activities such as regulation, training and data management.
• Policymakers need to be ready for regulation and oversight functions to expand as more people request assisted dying over time, and if requirements change.
• Policymakers will need to establish a system to pay providers for assisted dying. This will need to account for the combination of charitable and public funding for end of life care, and also payment for independent contractors, such as GPs and pharmacists.  

Regulation and monitoring

• Experience from other countries shows that funding and capacity for oversight functions can be a problem. The Voluntary Assisted Dying Commissioner required by the Westminster bill is a substantial and important role, which will require a secretariat, data access and expert support. Review panels will also need funding.
• Policymakers need to consider what should be specified in law or regulations, and what can be managed within policy and guidance, for example, in relation to training and staffing requirements, and steps in the process.

Workforce

• There needs to be active engagement with professional bodies during the implementation phase, alongside appropriate training and funding for staff (for example, understanding legal obligations, how assisted dying works, safety and how to have compassionate conversations).
• Plans for training, awareness and providing support are needed for a wide range of staff, not just those directly involved in delivering assisted dying. This includes nurses, pharmacists and social care staff -- not just doctors.
• Peer support networks have proved valuable to develop capacity for assisted dying in a number of countries.
• Specific support should be considered for staff who have religious or other objections to assisted dying. Strategies will need to be implemented for engaging staff from different communities and faith groups who will be involved in developing services.
• Policymakers need to ensure that there is a clear and well-understood process for staff to decline involvement in assisted dying, including on a case-by-case basis.

Equity and access

• Policymakers need to underpin new processes for assisted dying with digital infrastructure, to streamline administrative processes and improve data collection.
• Policymakers should consider strategies used in other countries to manage workload and improve access, such as establishing dedicated care navigator roles to provide information on assisted dying and how to access the service.
• Given cultural diversity across the UK, implementation of assisted dying may require local strategies or assessments at ICB or health board level to reflect different population needs, with strategies required to support equitable access to assisted dying services.

Data and monitoring

• Given the diversity of UK countries, and known inequalities in end of life care, assisted dying implementation should be carefully monitored by ethnic group, sex, region and other characteristics.
• Ensure that people directly impacted – including those going through the process, family, and people who were ineligible – are involved in any implementation in the UK.
• If assisted dying is legalised in different UK countries, the data collected should be comparable. Information on individual cases should be accessible across country boundaries, so that patients receiving end of life care and assisted dying in different countries can experience well-joined-up care.