Rethinking the UK’s approach to dying by Sarah Malik
Introduction
My thanks to Sarah Malik for writing this blog exploring Compassion in Dying’s[i] new report: Rethinking the UK’s approach to dying. Sarah sets out why the report was created, what the results were and shares why it is so important to make plans from conversations.
Bio: Sarah has an oncology and haematology nursing background but has been working in the helpline charity sector for over ten years now. She is the Clinical Lead at Compassion in Dying and is passionate about supporting truly person-centred end of life decision making.
Clare: Hi Sarah, thank you for creating this blog exploring Compassion in Dying’s new report: Rethinking the UK’s approach to dying. Can you start by sharing why the report was created and how the information was captured?
Sarah: We set out with an objective to widen our understanding of how people are experiencing death and dying in this country. The report - Rethinking the UK’s approach to dying: lessons from an end of life helpline – was compiled based on an analysis of over 5,000 calls and emails we received to our free, nurse-led information line service over a two year period. It’s provided us with this crucial insight into the factors that led people to view their loved one’s experience as ‘good’ or ‘bad’ at the end of life. We also commissioned YouGov to carry out a poll of the general public to further understand public attitudes towards death, dying and advance care planning.
Clare: What were the stand out results for you?
Sarah: Perhaps what was most striking, is just how many people spoke of a culture in healthcare that often prioritises extending people’s lives over supporting individuals to make informed treatment and care decisions based on what matters to them.
Whilst 8 in 10 people (83%) told us they want to prioritise their quality of life over living longer in their last years of life, our research found that people are experiencing so many barriers which stop them being able to plan-ahead for their end of life. For example, people tell us that when they try and have a conversation with a clinician about refusing or stopping treatment – now or in the future – it is avoided or discouraged. People also tell us that they cannot adequately plan for the end stages of their illness because they are not given realistic and straightforward information about their health prognosis or treatment options.
Clare: You know my interest in Advance Care Planning, can I ask what we can learn about how many people have completed an Advance Decision to Refuse Treatment?
Sarah: People have very strong feelings about the treatment they want to receive at the end of life. 8 in 10 people told us that if they were approaching the end of life, they would want a doctor to tell them about the option of refusing life-sustaining treatment. Our research highlighted that if people are able to plan ahead for the end of life, and are supported to do so, it can help them to have peace of mind in the present, it reduces unwanted medical interventions and unnecessary hospital admissions, and it improves relationships and communication between families and healthcare professionals.
But despite this, less than 10% of people document these wishes in advance, using either an advance decision to refuse treatment or lasting powers of attorney for health and welfare.
There is this troubling disconnect between what people want at the end of life and what they’re doing to prepare for it. This is why we strongly believe that widespread public information about how people can plan for their end of lives and why doing so can help is urgently needed.
Clare: What key message would you like to share?
Sarah: Talking about dying is not enough to ensure people’s wishes are followed. The emphasis on ‘having the conversation’ can lead people to believe that by voicing their wishes, they’ve done enough. But what we’ve learnt is that whilst it’s an important part of the process - it isn’t the whole process.
When people don’t record their wishes for end-of-life treatment and care they are at greater risk of receiving treatments that they would not want. Despite their loved one telling healthcare professionals what they do or do not want in such situations, simply knowing and explaining this to the person’s health care team is by no means a guarantee that their wishes will be upheld. If people feel strongly about the treatment they are given at the end of life, they need to record and share this in advance.
“I had to fight for my Dad because he couldn’t speak for himself and with no record of his wishes, it felt impossible to get his healthcare team to listen. I ask that healthcare professionals have these important conversations before a crisis and provide the information needed for people to make an informed choice about whether or not to take part in advance care planning. I believe in the power of information, and we’ve got a chance now to make this happen.”
[i] The purpose of this blog is to raise awareness of how we currently use existing legislation to exercise choice at the end of life. Publishing the blog is not an endorsement of work by Dignity in Dying.
To find out more about the Advance Care Planning service I offer contact me. You can also access the blog Advance Care Planning service for further information.
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