We had a fascinating and very rich discussion around this topic. Each panel member brought a unique perspective to the conversation.

The full, edited, transcript and audio are available to My Future Care Community members; the following is a short summary of the discussion.

We are not seeking a definition for quality of life as such but what it is for each person, and what we do with that information when we have it. There are some common elements such as physical and mental health, financial security, the ability to live according to one’s personal, cultural and religious or spiritual values, to be socially connected in some way with other human beings. What constitutes quality of life will change as our circumstances change.

Medical advances have given us longer lives but we live many of those extra years in mediocre or poor health.

Advance Decisions to Refuse Treatment are useful for some black and white scenarios but it’s not always clear cut. For some, their red line is when they lose independence, for others it is only when they can no longer recognise their loved ones that they would not want to be kept alive. We must make our wishes clear in case we do not have capacity to express them.

It’s very personal, and different for each person. It can be challenging for some people to discuss but it’s an important conversation to have. We don’t necessarily know how we’re going to feel about something we wouldn’t choose, like being incontinent or living in a wheelchair. Extreme care must be taken if discussing this with someone with depression. The ideal situation is to be able to have a number of conversations spread over time.

It is much easier in the community than in an acute hospital because you have the chance to build a relationship with the person. Planting a seed in people’s minds can get them thinking about what’s important to them. This is not at all about extinguishing hope. Bringing it up when a person is discharged from hospital is a good time to encourage them to think about what they would want next time. But really we need to start much earlier, at 18 or even in schools. It is a process, people may need help to understand the issues, and it needs regular reviewing.

Anna Wharton, co-author of the late and much-missed dementia campaigner Wendy Mitchell, shared Wendy’s story at the event. Wendy initially expressed her wish to avoid letting dementia take full control of her life, saying she “didn’t want to go over the edge.” As her dementia progressed, Wendy refined her thoughts and was prompted to consider various scenarios where she would or wouldn’t accept medical intervention. As Wendy’s wishes became clearer, Anna suggested writing a third book, focusing on the case for assisted dying and exploring related topics about having a good death. During their research, they learned about VSED (voluntary stopping eating and drinking), a practice where a GP can provide support if they are willing. After Wendy was hospitalised due to a fall, she agreed to surgery in hopes of regaining some independence. This highlights that even when someone sets boundaries, decisions can change. Ultimately, Wendy chose to proceed with VSED. As a result, Anna advocates for clear guidelines for medical professionals regarding assisted dying and emphasises the importance of continuity in care, especially with GPs, so they can truly understand and honour a person’s wishes.

The dementia diagnosis rate is much lower amongst the South Asian community, and they are just as reluctant to talk about or make plans for death, despite planning massive funerals. It is multilayered, with each country and even communities having individual cultures within cultures. Death is still generally a taboo subject and the idea of assisted dying is not something they’d ever consider. The priority for first generation immigrants was to survive and help their children become successful. But even younger generations won’t discuss it. We are slowly opening up the conversation but death is still mostly a no go area.

The final part of this discussion highlighted the importance of having expert input to ensure that every eventuality is covered, so a scenario doesn’t arise that is not covered in some way by one’s written instructions. Also how important it is to have numerous conversations, to have documents in place but to be sure that your attorneys are totally clear as to what your wishes are.