It is a pleasure to serve under your chairmanship, Sir Roger. I rise to speak in support of new clause 33 and new schedule 3.
I am concerned that amendment 455 will be inadequate to maintain trust in the system. Collecting comprehensive data, such as the detailed statistics outlined, in an assisted dying regime serves several critical purposes that revolve around ensuring transparency, accountability, safety, equity and continuous improvement of the system. It is about ensuring from the very start that there is good data and learning from the paucity or the blanks in other regimes and from where they have been criticised.
The Secretary of State would have the power to amend the new schedule, but Parliament’s intent and our expectation that the system will be scrutinised would be crystal clear. We need to collect data for monitoring and oversight and gather detailed information about individuals who request assisted dying, and about the process itself. That would allow regulators to monitor how the system is functioning, which would help to ensure that the law is being applied consistently and fairly, preventing misuse or abuse.
We need to safeguard our vulnerable population. Data on characteristics such as age, ethnicity, disability and mental health conditions and on deprivation indices can reveal whether certain groups are disproportionately seeking or being denied assisted dying. That helps to identify potential coercion, discrimination or gaps in care that might drive requests, ensuring that the system protects vulnerable individuals.
For the purpose of improving healthcare and support services, information about the prior involvement of palliative care or psychiatry teams, and about referrals made after requests, highlights whether patients are receiving adequate support before opting for assisted dying. If data shows low referral rates or unmet needs, it could prompt improvements in healthcare, access or quality, potentially reducing the number of requests driven by untreated suffering.
For the purpose of evaluating the process, tracking timelines—that is to say, from initial discussion to death—and procedural steps such as second opinions and panel decisions ensures that the process is efficient yet thorough. It can reveal bottlenecks, delays or inconsistencies, allowing policymakers to refine the system for both patients and clinicians.
For the purpose of understanding motivations and outcomes, collecting the reasons for requests, refusals and complications such as drug efficacy or adverse reactions provides insight into why people seek assisted dying and how the process unfolds. That can inform public policy, clinician training and patient counselling, ensuring that decisions are well informed and voluntary.
For the purpose of ensuring accountability, data on clinicians, pharmacies and panel decisions creates a transparent record of who is involved and how often. That helps to prevent overreliance on a small group of professionals, ensures that ethical standards are upheld and allows for audits if concerns arise.
For the purpose of public trust and ethical debate, detailed statistics foster transparency, which is essential for maintaining public confidence in a sensitive and controversial practice. They also provide evidence for ongoing ethical and legal debates, enabling society to assess whether assisted dying aligns with its values and goals, and for the purpose of learning and adaptation. By analysing complications, drug effectiveness and reconsideration requests, authorities can refine protocols, such as by adjusting approved substances or dosages, to make the process safer and more humane. Long-term data collection supports evidence-based adjustments to the regime.
Almost all jurisdictions around the world have systems for reporting on people requesting and having assisted deaths. However, there is a high degree of variability in the data reported around the world; very few data items are published consistently in all jurisdictions. We have an opportunity to learn from monitoring and reporting systems elsewhere, and to put the most robust possible system in place.
Research published in BMJ Supportive & Palliative Care in 2022 examined in depth the data reported in jurisdictions around the world. It identified official data reports from 16 jurisdictions in which assisted suicide or euthanasia is legal. It found that although most jurisdictions report the number of patients who die by assisted dying, only three—New Zealand, Canada and the state of Victoria in Australia—document the number of patients who make a request to die by assisted dying. The research is from 2022, so it is possible that there are now a few more jurisdictions.
Unless we know about the applications that are assessed as ineligible, we will not have adequate insight into the functioning of patient safeguards and eligibility criteria. That is a point that Dr Annabel Price made in oral evidence and in an editorial in The BMJ in 2015. We need to understand not just who has an assisted death, but who is ineligible and why, to understand how the safeguards are functioning.
The 2022 paper identified Colorado, Hawaii and Maine as reporting the number of patients who received assisted suicide prescriptions, but not the number of persons who actually die by their ingestion. In these jurisdictions, there is no record of how many of the patients ingested the prescribed drugs. This is stipulated in the 2021 data summary for the Colorado End-of-life Options Act, which states that the Act
“does not authorize or require the Colorado Department of Public Health and Environment to follow up with physicians who prescribe aid-in-dying medication, patients, or their families to obtain information about the use of aid-in-dying medication.”
The official statistics reported therefore
“reflect all deaths identified among individuals by prescribed aid-in-dying medication…irrespective of whether their death was caused by ingestion of medication, the underlying terminal illness or condition, or some other cause.”
These states do not appear to have a mechanism to ascertain the amount of unused assisted suicide drugs circulating within the community. The fate of many therapeutic drugs with the potential for abuse or use for fatal overdose, such as diazepam or morphine, is not monitored, but the doses and combinations of lethal drugs used in assisted suicide and euthanasia may present a heightened risk, so monitoring the fate of those drugs should be considered.
Concern about pressure on vulnerable groups warrants the detailed reporting of patient demographics. It is needed to ensure patient safety because it allows researchers and monitoring organisations to monitor trends to determine whether there is disproportionate participation among vulnerable or minority groups and, if so, why.
Even basic patient characteristics, including gender, age and ethnicity, are not universally reported in other jurisdictions. Although marital status could be an indicator of at-home support, fewer than half of reports include it. The level of education can be an indicator of socioeconomic position, but is not routinely reported by many jurisdictions.
Although we have been told that studies that have analysed routine statistics did not indicate a disproportionate use by lower socioeconomic groups, socioeconomic trends have changed over time and new evidence has emerged. For example, in Oregon, the proportion of assisted dying patients on state health aid has doubled in the past decade; it reached 79% in 2021. That indicates an increase in use over time by those in a lower socioeconomic position.
Similarly, an in-depth review by Ontario’s coroner last year showed that those dying by their assisted death legislation, both track 1 and track 2, were more likely to be those with longer prognoses. Given the impossibility of prognostication and the pressure being brought to bear by some campaign groups for the Bill to be wider, socioeconomic data will be very important to ascertain whether there is equity of access to assisted dying and whether financial pressures, including access to benefits, are involved in areas of higher or lower uptake.
Knowing whether patients have received care from hospice or palliative care services provides an understanding of whether patients have been provided with alternative end of life care options. That information is included in fewer than one half of the reports from jurisdictions around the world, with none providing information on the duration or scope of hospice or palliative care involvement. For example, while official reports indicate that 80% to 90% of Canadian patients who have assisted deaths receive palliative care, other studies have shown that fewer than half of such patients had seen a specialist palliative care team.
It is also essential to have information about the clinicians who participate in assisted dying, because the clinical demand of assisted suicide and euthanasia is highly time-consuming, with evidence from other jurisdictions, such as an Australian study of those participating clinicians, showing that it takes 60-plus hours of work per assisted death. Understanding the number of clinicians participating in assisted dying and their speciality is important in understanding the willingness of clinicians to participate, and how the clinical demand for assisted dying is distributed across specialities and practitioners.
Information on the drugs used in assisted deaths is critical to understanding the safety and efficacy of different drugs and drug combinations. The 2022 paper found that just six jurisdictions report the drugs used to bring about patient death. There is no one drug or drug combination that has been shown to be most effective and safe for ending patients’ lives. If that research existed, we would not see such variation in the drugs used. Data on complications following drug ingestion or administration is needed to understand the safety of different drug combinations, but it is rarely reported.
Even in jurisdictions where information on safety is included, missing data can be high. For example, in Oregon, data on complications is unknown in up to 70% of cases annually. Reporting the drugs used to bring about patient death, as well as information about the assisted dying process, including the time from drug ingestion or administration to patient unconsciousness and death, and the presence of complications, would enable the safety and efficacy of these drugs to be assessed.
As in many jurisdictions around the world, what I am proposing relies on retrospective reporting of data, after the patient has died. I suggest that this is the minimum standard that must be achieved. Ideally, we would also build in processes for prospective scrutiny, before the person has died, as well as formal review processes that scrutinise individual cases in more detail. Analyses from Belgium and the Netherlands, where review processes are established, have shown that 48% of assisted deaths in Belgium, and one in five of such deaths in the Netherlands, are not reported via the official reporting system. In some cases, legal requirements are not followed.
Setting up a post-event review panel, such as happens in the Netherlands and Ontario, would improve understanding and safety. In the Netherlands, every case is reviewed by a panel, and many cases, especially the controversial ones, are published to promote education and debate. Controversial or worrying cases will occur in England and Wales if this Bill passes, and it is essential for ongoing patient safety that these are not swept under the carpet, but that there are transparent processes to understand and learn from them.
We have heard frequently in Committee that there is no evidence of harm from other jurisdictions, but we have also heard it powerfully argued that other jurisdictions do not collect the data we would need to determine that. In Oregon, information on complications following ingestion of lethal substances is missing in around 70% of cases. Robert Clark, the former Attorney-General for Victoria, has written:
“The Victorian oversight and accountability structure can best be described as one of ‘hear no evil, see no evil, speak no evil’. In other words, it appears designed for the regulator to find out nothing, investigate nothing and report nothing that could suggest that assisted dying has been anything other than an unblemished success.”
Let us not repeat those mistakes. We can lead the way in rigorous, comprehensive data collection and transparent monitoring.
Amendments tabled by the hon. Member for Spen Valley change responsibility for oversight from the Secretary of State and chief medical officers to the commissioner. This brings a danger of bias in reporting, as there could be an element of marking one’s own homework. This means that there is even more reason for complete data reporting and transparency. Ensuring that data collected is comprehensive and reporting is transparent may go some way to assuage that concern. Importantly, strengthening data collection reporting and monitoring will not make the process harder or more lengthy for the person requesting an assisted death. It just makes the system safer and stronger.
In this amendment, I am not proposing doing anything new or radical. We are simply taking the strongest aspects of what is done in other jurisdictions and bringing them together to enable the best and most comprehensive reporting in the world. All new laws have risks as well as benefit. We must identify and be open about those risks in order to learn from harms and improve onward safety. New schedule 3 will help us to achieve that.