Summary
Exploring 15 jurisdictions across the world, this study from the Nuffield Trust is the most detailed look to date at what the UK can learn from other countries as the UK and Scottish Parliaments debate bills to legalise assisted dying and potentially set up assisted dying services. It finds that that safe and effective implementation will require substantial planning, infrastructure and funding, all of which are scarce in today’s NHS amid staff cuts, reorganisation, tight finances, and patchy access to end of life care.
Content
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.
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