“Dad was 81 and was taken into hospital with sepsis due to a failed knee replacement. He was on a morphine driver and in and out of consciousness. The doctor came in and said he was going to remove his leg but Dad had previously refused an amputation and so I knew he wouldn’t want this. I told them and said I didn’t give permission but was told I had no say in it and they wheeled him to theatre. I feel as though all our wishes were ignored. I wasn’t prepared for the lack of control I had over decisions, I wish he’d have made a Living Will or a Lasting Power of Attorney, because the things he said to me verbally that he wanted were not adhered to.”
We need to do more than talk about death
In recent months, there has been a groundswell of initiatives encouraging people to talk more about dying.
Marie Curie’s recent ‘Talkabout’ campaign is full of helpful content that normalises talking about the end of life. 2019 saw the innovative Departure Lounge, an initiative from the Academy of Medical Sciences, which aims to encourage a national conversation about death and dying. The Women’s Institute has shortlisted a resolution titled ‘time to talk about death and dying’ and, if selected by its members, will take it up as a campaign later this year.
Undoubtedly for some people, dying can be a hard conversation to start. That’s why campaigns like this are important. So, on the face of it this is good right? — a big stride in the right direction towards a culture where more people reach the end of their life with their family and healthcare team on the same page as them and their wishes understood.
Saying it out loud might not be enough
Well, my issue is this: the people we support tell us, frequently, that knowing what their loved one wanted was not enough to ensure their wishes were upheld at the end of life.
So, if experience tells us we need to do much more than talk about it, I can’t help but question: Are we doing people a disservice by creating a narrative which says talking about what you want at the end of life is enough to achieve a good death?
Talking about dying is not a universal solution for avoiding bad deaths and all of us working in healthcare and the end-of-life sector have a duty to ensure people know this. That’s not to say talking about what you want at the end of life is not important. It absolutely is. But it is one step in a series of things that can help people have the death they want.
I’m talking about practical things like making an Advance Decision, Advance Statement or Lasting Power of Attorney, having a Do Not Attempt Resuscitation form, knowing the right questions to ask to get honest information and being able to make decisions about treatment that are right for you. And focusing on planning for what happens after you die (funerals, wills, digital legacies etc), whilst important for your loved ones and your own peace of mind, still leaves important unanswered questions about what you want your death, and the weeks leading up to it, to be like.
Can we go further?
Death and dying more broadly is increasingly seeping into public consciousness — Rachel Clarke’s bestselling memoir of dying and loss, and Sky’s new show The End both demonstrate a mainstreaming of death that I don’t think was the case ten years ago. It seems to me there’s now a level of ‘death speak’ that feels comfortable, even safe (both for people themselves and for the organisations who promote the importance of such conversations). But taking that further and supporting people to know how you might die and what’s more likely to get you a better death can be a bit less comfortable. Both in terms of the ins and outs of how to document your wishes and also in terms of how people feel thinking about the treatments they might not want or about what will happen if a disease progresses. Simply put, it’s easier to draw the line at ‘talking’ because the other stuff can feel harder to do (although there’s loads of free support to help you do it).
Research backs this up too. A recent study from YouGov commissioned by Dignity in Dying showed that 58% of dying people do not find death a taboo subject. However, analysis from workshops held by the Departure Lounge showed that whilst people were clear they wanted to take control at the end of life, the practical plans they wanted to make almost always concerned financial affairs or things that happen after you die, such as funerals or wills. Very few people thought about the other types of wishes that might be relevant as they were approaching the end of life.
This is compounded by the fact that that clinicians are often reluctant to initiate conversations about end of life treatment (as evidenced by our work with GPs).
The YouGov research mentioned above also found that only 16% of people with a terminal or advanced illness have had a discussion with their doctor about what might happen as their condition progresses, particularly at the end of life.
The significance of this cannot be understated.
Without a concerted effort from organisations and clinicians, the practical steps that people can take to plan for the end of their life will go overlooked. The empowering ethos of the Mental Capacity Act will remain under-utilised. End-of-life care will not be personalised and based on what matters to each individual.
We’re working towards…
We cannot shy away from these trickier topics as it’s these efforts that will ultimately translate into a better experience for people when they are dying .
Mum is 93 and has been in hospital for a few days. She has had lung problems all her life (COPD etc). She has now been diagnosed with a chest infection and is not being given antibiotics or CANH because her living will said that she didn’t want any tubes or anything like that and the doctors are giving her gel tablets and sedation to keep her comfortable. I am so grateful.
We need a more three-dimensional portrayal of end of life — with honesty about the things you can do to make it better. And we must not create a culture where people feel that if they talk about it then that’s that sorted. Because it isn’t. We have a duty of care to foster understanding of all the things that will help you to have a better death. Let’s not just talk about it, let’s document our wishes, consider what might happen, make decisions in advance and make plans. Because that’s what will make the difference between having our wishes known about and having our wishes respected.
 Literature review on the impact of Advance Care Planning — produced by the International Longevity Centre — UK on behalf of Compassion in Dying (2016)