Dealing with the unintended consequences of the debate about assisted dying

Many of us will be aware of the ‘Terminally Ill Adults (End of Life) Bill’ that’s going through Parliament.

It proposes to allow ’adults who are terminally ill, subject to safeguards and protections, to request and be provided with assistance to end their own life.’

The Bill is currently being considered by the House of Commons and will then pass to the House of Lords, provided it gets MPs’ support in a vote scheduled for April. The Parliamentary process is quite lengthy and will not finish until later this year or next. Then, if the Bill passes, the Government and others will have to decide how to implement it and set up the practical arrangements, a crucial and complex task. This means that assisted dying will not become available in England for at least two or three years, at the earliest.

Assisted dying remains illegal

In the meantime, the legal position remains what it has always been in England – namely that assisted dying is illegal. However, at Age UK we are hearing from some older people who believe the Bill has already become law. As a result, a few are wishing to find out how to pursue an assisted death, and many more are pushing back on having conversations with health and care professionals about their advance health and care wishes – often termed ‘advance care planning’. This is because they suspect, mistakenly, that these discussions are a way to get them to consider an assisted death.

Assisted dying is a highly controversial and contested topic, with many older people and the general population holding different views. Age UK, like almost all charities, takes a neutral stance on the matter but is committed to raising the issues and questions that are important for older people. We are worried about some older people being put off from taking part in advance care planning discussions as an unintended consequence of the assisted dying debate, because we think these conversations are generally a good thing and bring real benefits.

The importance of talking about dying

We take this view because we believe that talking about dying, before we need to, can help us and the people we love to accept and have an unpressured conversation about our fears and wishes. An advance care planning conversation should allow us to document preferences that are important to us, such as where we would like our place of death to be, and what sort of end-of-life treatments we would want (or not want), if available to us. It also provides professionals with a clear idea of what matters to us, so they can help us in the right way when the time comes. Having said this, it’s important to stress that these conversations are optional, and no one needs to take part if they would rather not.

Even before the assisted dying debate gained momentum, we were conscious that many older people remain unaware of the benefits of advance care planning, confused about its remit and purpose, or suspicious of the motivations behind it. The misapplication of some Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices during the early days of the COVID-19 pandemic won’t have helped. Nor will a public discourse about ageing in our society that often undervalues what it means to be older.

Low confidence in advance care planning conversations

Research undertaken by Age UK in 2022 found low levels of confidence among both older people and healthcare professionals in conducting advance care planning conversations because of a lack of understanding, inconsistent use of language, and a general discomfort in talking about death and dying.

This research also found that although most people had heard of DNACPR (80%+), few had heard of advance care planning (23%). For those who had heard about it, it was often misunderstood as being solely about the practical arrangements associated with death, such as funerals, wills and burial plots. These things are of course important, but advance care planning conversations cover a wider range of topics, as has been described.

Providing key information

While we await updates on the progress of the Bill through Parliament, we anticipate further hesitancy among older people about engaging in advance care planning conversations with health and care professionals. At Age UK we hope we can help by sharing information about what advance care planning is really all about, and by taking steps to explain to everyone that for now and for the next couple of years at least, assisted dying remains illegal.

We know that advance care planning conversations are not always conducted as well as they should be, so looking to the future there’s a clear need for better training for health and care professionals, as well as for measures to promote public understanding of why it’s worth taking part. There’s a lot more to do to ensure that every one of us can make a plan for the end of our life that suits us, if we want to; that our wishes will be respected when the time comes; and that if we need end-of-life care it will be available and of high quality.