Second Report - Assisted Dying/Assisted Suicide

Our aim for this report is for it to serve as a basis for discussion and debate in future Parliaments. We have therefore endeavoured to bring together a comprehensive and up-to-date body of evidence relating to this difficult, sensitive, and yet, crucial subject. The debate on AD/AS is not new, and our report is not intended to provide a resolution to it, but we do hope that it will be a significant and useful resource for future Parliamentarians.

Throughout our inquiry, a common theme across the evidence was the pursuit of the very best end of life care, and what many witnesses called “a good death”, where the person dying was cared for with compassion and high-quality care and provided with as much agency and choice as possible. However, there is spectrum of views on how to best achieve this. (Paragraph 12) Assisted Dying/Assisted Suicide

A view put forward by some who have provided evidence to us was that the current state of the law is unclear.

During our inquiry we have heard statements from people who have been involved in assisting a loved one to pursue AD/AS abroad.

We also heard about the documentation which has had to be secured as part of the application, including a medical report for the person applying. We note that the General Medical Council’s guidance for Investigation Committees assessing a doctor’s fitness to practice following an allegation of a doctor’s encouragement or assistance in suicide, sets out that that providing access to a patient’s records where the request is made in accordance with the Data Protection Act 1998, should be considered lawful or too distant from being considered encouragement or assistance. However, the BMA’s guidance recommend that doctors should not write medical reports specifically to facilitate assisted suicide abroad. Although it is not illegal to provide medical reports in this circumstance, it does not seem to be entirely clear to doctors what they are allowed to do. We would welcome revised guidance from the GMC and the BMA enabling doctors to assist their patients.

The UK Government must consider how to respond to another jurisdiction in the UK, or the Crown Dependencies, legislating to allow AD/AS, and how it may impact jurisdictions which do not allow it. Following the recommendation by the Jersey Citizens’ Assembly, it looks increasingly likely that at least one jurisdiction among the UK and Crown Dependencies will allow AD/AS in the near future and Ministers should be actively involved in discussions on how to approach the divergence in legislation. (Paragraph 68) 96 Assisted Dying/Assisted Suicide International examples

In the evidence we received we did not see any indications of palliative and end- of-life care deteriorating in quality or provision following the introduction of AD/ AS; indeed the introduction of AD/AS has been linked with an improvement in palliative care in several jurisdictions. We also conclude that jurisdictions which have introduced AD/AS on the basis of terminal illness have not changed the law to include eligibility on the basis of “unbearable suffering”. None of the jurisdictions which have introduced it have revoked the legislation.

When we undertook this inquiry, we were keen to learn as much as we could from international examples and we hope that by putting the evidence we have gathered into the public domain, we can help to further inform the debate on AD/AS in the UK. The fact that people with very different overall views on AD/AS draw on international examples to support their arguments shows the complexity of the issue, but it is possible to look at what is happening elsewhere and to use it to learn more about this difficult and sensitive subject.

There are as many ways to operate AD/AS as there are jurisdictions which have legalised it, but there are two distinct models: one limiting its availability to those with a terminal illness and the other adding provision for unbearable suffering. What has become clear to us is that better data collection, independently verified and overseen by a dedicated body, leads to a better understanding of how the whole AD/AS process is working. The overall trend is that numbers of AD/AS will increase from the time of introduction, but opinions differ about the cause of the increase. Many of the jurisdictions we have looked at introduced AD/AS very recently, and there is still much to learn as time passes. (Paragraph 144) Involvement of physicians and assessments of eligibility and capacity to give informed consent

Medical professionals would have an important role in any system of AD/AS, although the details are for Parliament to determine should it move to legalise AD/ AS. During our inquiry we have heard from healthcare professionals who were content to be involved, from others who were supportive of the practice but did not want to participate themselves, as well as from those who were opposed to the practice in its entirety. We heard evidence that in the event that Parliament were to legislate for AD/AS a decision to participate should be freely taken by the individual healthcare professional and never imposed on them.

Practice across the world where AD/AS is legal is varied in the respect of capacity assessments for AD/AS. We heard that any such assessment should be undertaken by professionals who have undertaken necessary training on capacity assessments, particularly in relation to vulnerable groups.

Throughout our inquiry into AD/AS, the importance of safeguards and protections, and the question of whether they can be sufficient, has been a central feature, as has the related question of assessing capacity. Hearing from various representatives of healthcare professionals, as well as from healthcare professionals directly, it is clear that there is hesitation around whether it is possible to accurately assess capacity, Assisted Dying/Assisted Suicide 97 and safeguard the person, in every case. On the other hand, some people we have heard from argue that there is a similar risk under the current law in assessing capacity and safeguarding people who opt to cease treatment, or to accept end-of- life care, including palliative sedation. (Paragraph 211) Palliative and End of Life Care

The UK has long been a world leader in palliative and end of life care, but access to and provision of palliative and end of life care is patchy. The Government must ensure universal coverage of palliative and end of life services, including hospice care at home. It is important that everyone is able to choose what type of support they need at the end of their life, and that their advanced care plan is honoured where possible.

As identified in the report of the HSIB (now the Health Services Safety Investigations Body (HSSIB)) on variations in palliative care services to adults, we agree that better data on the population within an ICB catchment area needs to be acquired by ICBs so that they can more fully understand the needs of the population. This will allow commissioners to more effectively support the provision of services.

We understand that the flexible nature of the current funding model for hospices is valued by some hospice leaders, and rather than suggesting that the Government funds 100% of hospice operations, we call on the Government to commit to an uplift of funding to guarantee that support will be provided to any hospices which require funding assistance.

We were extremely saddened to read and hear about the experiences of people who had experienced a loved one taking their own life, and our thoughts and deepest sympathies remain with them.

We are pleased that the ONS in now attempting to monitor the rates of suicide for people with a terminal diagnosis, as this will facilitate scrutiny in the future. The existing data already serves as a sobering reminder that the support and care around people who are managing a terminal diagnosis must be improved.

We have heard a lot of evidence around the importance of a “good death” for both the person managing their terminal diagnosis, and their loved ones. Suffering, pain and managing a terminal diagnosis will be a subjective experience, unique to the person experiencing them, and although there may be in the future, there is not currently a medical intervention available to manage every symptom or pain.

There is a pressing need to understand how to better provide mental health support, and guidance, for people who are living with a terminal diagnosis. We therefore recommend that the Government commission such research and report back to Parliament.

The Government must establish a national strategy for death literacy and support following a terminal diagnosis. This strategy will help healthcare professionals to better support someone and their loved ones, from the moment of a terminal diagnosis. (Paragraph 308) 98 Assisted Dying/Assisted Suicide