Professor Nancy Preston:

I thank the committee for the invitation. I conduct research about palliative care and assisted dying, but I take a neutral stance on the debate. Much of the debate is about whether assisted dying is right or wrong, needed or not, but, as the committee makes clear, it is also crucial to think about how provision for assisted dying might operate. There is a natural assumption by the public that assisted dying will be integrated into healthcare systems. However, from our research in the Netherlands, the US and Switzerland, where this is permitted, we know this is rarely the case, with most assisted deaths occurring at home. This is in part because institutions do not want to be associated with the practice for fear of damaging trust with their patients. Even in the US, where the Oregon system is often championed as the preferred model, hospices with religious affiliations will not allow assisted dying on their premises and will not allow staff to discuss it. Even where patients have applied for and been granted an assisted death in the US, they may find the medication prohibitively expensive because elements of the pharmaceutical industry may fear being associated with it.

There is also a potential impact on healthcare staff themselves who assist with assisted death. As one doctor who supported and helped patients gain an assisted death in the Netherlands said, it is stressful to kill somebody. The doctor managed this by limiting the number of cases they did each year. Other doctors talked about moving away from areas where they would be asked to assist, such as palliative or end-of-life care. This is challenging for healthcare systems if healthcare workers choose other specialities for fear of being asked. For others, the toll was less severe.

Often, the acts of physicians are carried out by volunteer doctors from right-to-die associations. These are people who have chosen to support assisted death and who feel less dissonance about performing the act. While they do not have a long-standing relationship with the patient and family, they are able to assist in the death. Because of the reluctance of healthcare staff to be involved in assisted deaths, it can be difficult for patients and families to navigate the system and to work out how they will get an assisted death. Even if a doctor supports assisted dying, that does not always mean they will be willing to assist and, indeed, most do not. In some of our research, doctors told us they actively discouraged patients from having an assisted death and openly admitted to keeping the decision-making procedure going longer in order that an assisted death would no longer be required.

The impact of trying and potentially failing to navigate this system is made worse because this is a relatively secret act. Patients seem to ruminate on the decision and choose to share their desire for an assisted death with just one or two people.

These people, in turn, must maintain secrecy, which makes them feel isolated. However, our research suggests that all family members seem to be pleased that they respected the decision of their loved one, even if they were happy to have supported them naturally. For the patient to be in control at a time of life when they are losing control is of utmost importance. The secrecy means that not all family members know about the death until afterwards, and some people find that very difficult. It is hard to find these people to interview, but they do express unhappiness. These conversations seem to be had on a need-to-know basis.

To help overcome some of these issues, we have proposed, as have others, a system to operate assisted death outside of the healthcare system. That is not to say we should pass a law; rather, it is saying that it is perhaps the safest way if the Oireachtas chooses to pass a law. The panel could make a judgment based on medical reports. This could include a palliative care consultation where alternatives have been discussed. All applications would be recorded in advance, which would act as a safeguard for subsequent monitoring. In most other countries, any assessment of legality is only after the death which is too late. Austria introduced a similar system last year. Switzerland's volunteer system is pretty similar. There are other options.

Overall, keeping assisted dying practices outside of healthcare could potentially smooth the process for patients and families, but it also protects healthcare workers. It would allow for greater scrutiny before and after the death and, importantly, this means all cases can be assessed to see if due process was followed. I thank the committee.