NHS England’s newly launched Universal Principles of Advance Care Planning is a milestone for people who want to make sure their voice is heard at the end of their life. The document sets out, both for healthcare professionals and the public, the core principles for planning ahead. Importantly, these principles include that the person must be central to developing their advance care plan, and that their plan must be shareable. It has a strong focus on person-centred care, good communication and the tools people can use to plan ahead, and is jointly published with 28 other organisations working across health, social care and the voluntary sector.
At Compassion in Dying, we have championed for years the positive impact that planning ahead and putting your wishes in writing has. And not just for the future — it also makes a tangible difference to people’s quality of life now.
I have had strong feelings about the end of my life for many years and it was reassuring to find that Compassion in Dying enabled me to make a record of my views in a clear and logical way.
Service user
Family members also frequently tell us how reassuring it is to be able to understand their loved one’s wishes and have them in writing. It gives them confidence to know they are doing the right thing when decisions need to be made, and comfort to know that their loved one is receiving the end of life care they would have chosen for themselves, had they been able to.
Because the Advance Decision was in place and I had talked to my husband about it, it really did put me in a position where I knew what to do and I was able to help him die at home as was his wish.
Service user
But we also hear regularly from people who tell us it feels hard to get their voice heard, to put their wishes in place or to have their decisions respected.
I went to my GP to discuss my Advance Decision and they said this was something for a psychiatrist and that I shouldn’t refuse antibiotics. They were not interested in it at all and I’ve lost all trust and faith in my wishes being followed.
Service user
Although I was her Lasting Power of Attorney, in her final month the hospital refused to stop her treatment even though it was also in her Advance Decision as well. I wish I had known how to challenge this. I was not prepared for being ignored. It was horrible.
Service user
We know the problems some people come up against have understandably been exacerbated by the huge pressure the NHS is facing since the COVID-19 pandemic started. But as we navigate away from crisis management towards a landscape which is forced to live with COVID-19, there needs to be a universal commitment to respecting patients’ choices.
The Mental Capacity Act was introduced in 2005, and a 2014 House of Lords report highlighted serious failings in the implementation of this ‘visionary’ piece of legislation.
The publication of the Universal Principles of Advance Care Planning, endorsed by a wide range of health, social care and voluntary sector organisations is another step forward towards fully realising the ethos of the Act — to respect the autonomous decisions made by adults with capacity.
We’re not there yet though.
Sadly, through our information line, we still hear of Attorneys for Health and Welfare being ignored by healthcare professionals and valid and applicable Advance Decisions (living wills) being ignored.
“The doctor was insisting that my father had a pacemaker fitted. He said he was acting in my father’s best interest and people change their mind about Advance Decisions so he wouldn’t respect it. He was insinuating that we were not acting in Dad’s best interests. It was very distressing. It was also the first time we had spoken to any doctor. I feel brow beaten and bullied.”
Service user
Sadly this is not an isolated incident. We hear similar experiences frequently.
So, while clear guidelines for undertaking advance care planning are crucial, we also need to work to change attitudes to ensure patients’ wishes are accepted, not judged, and followed when it matters. People need to be trusted as the best person to make a decision, and supported to do so by their healthcare team.
Compassion in Dying has been providing one-to-one support for advance care planning since 2008, and we are proud to be a sustained voice for individuals’ choices at the end of life. Every piece of information, policy and guidance which recognises the importance of putting the individual’s wishes and experiences first, is a milestone. Conversations on what people want at the end of life are absolutely what is needed, The ‘What Matters Most’ philosophy is a great way to get people talking about their future care and treatment wishes. But we can and must go further.
If we embrace the idea that individuals are the best people to make decisions about themselves, then we must also take an honest look at what people need in order to do this. In a survey of people living with a terminal or advanced condition, only 16% said they have had a discussion with their doctor about what might happen as their condition progresses particularly at the end of life.
People need to be given the option of knowing as much detail as they would like about their illness…
People tell us that these building blocks of control are what they need to be able to make informed decisions. If someone approaching the end of their life feels anxious because they are not in control of their death, then healthcare professionals should seek to address that lack of control, just as they would if their patient presented with pain, nausea or a fever. To continue improving end-of-life care in this country, these things need to be part of the conversation.
Thankfully, the need to listen to each patient’s voice is now widely regarded as paramount to good care. This lesson was absolutely reinforced following the Independent Medicines and Medical Devices Safety Review, which showed that women’s voices were consistently dismissed and they were routinely not believed when speaking about their symptoms.
We need judgement-free acceptance of patients’ wishes for end of life care and treatment, and that means trusting the person who is dying to know what is best for them. We must provide them with what they need to have the death they want, even if those are choices we would not make ourselves. Let’s enable people to feel they can take control of their futures. What is right for each person is different, and as we move to patient-knows best, we need to enable each person to make the decisions that are right for them, fully and completely.