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Realistic choices - what matters to you?

In this special blog to mark Death Awareness Week Scotland, Juliet Spiller discusses 'Realistic Medicine', advance care planning, and the how to achieve a real shared understanding of the risk / benefit balance that lies in every treatment and care decision.

Why is it that, so often, it takes the reality of dying to focus the mind on living well? It’s as if the only true justification for taking time to focus on “what matters to me” is hearing that you are running out of time whether that is at the age of 22 or 92.

Palliative care is about controlling symptoms, of course, but it is also, and has always been, about supporting patients and their families to identify and focus on what matters to them and what can bring value for them.

An individual’s core values are what underpin their goals of care, and clarifying goals of care enables an open conversation about realistic choices for treatment and care to start to make sense.

The problem is that most people need support, or at the very least prompting, to consider what their core values are for the first time. If you are not used to thinking about what really matters you may find it hard and unfamiliar.

This way of thinking is even harder to do when faced with a diagnosis of terminal illness and a big blanket of grief and loss and suffering is covering your head.

Time and again I watch patients and families wrestle with the impossible pressure of “making the most of the precious time” when all that fills their thoughts and their view is the loss of the healthy happy future they had planned and worked for.

Learning to notice and get real enjoyment from “the moment” is a skill we all have as children but most lose in adulthood and it takes effort and practice to keep it or to get it back. When you have limited time and limited function it is a skill that can make all the difference in so many ways.

Imagine if we had a healthcare system that supported people to think about their treatment options in terms of what fits with their core values at every stage of wellness and illness. By the time a diagnosis of terminal illness came along we would be confident in what truly matters to us and expert in assessing the benefit / burden balance of an ever-changing range of realistic treatment options.

Our Chief Medical Officer for Scotland's annual report last year presented an invitation for all health and social care professionals to make this shift in the way they support patients and carers. Realistic medicine is an approach and an attitude where shared decision-making happens through respect for the individual’s values, and a focus on what matters which is truly person-centred.

This year’s CMO report provides impetus and strategy for making this vision a core part of everyday healthcare. For Palliative Care specialists it represents the “mainstreaming” of all the core aims and values of what palliative care has at its heart – a recognition that this is every care professional’s job.

Done well this approach enables the benefit / burden balance of realistic treatment choices to be truly shared and understood, and explanations about which treatments will not provide any benefit can make sense for patients and for families.

But the real experts in how to do this are the patients and their carers, and as clinicians and care professionals we have a lot to learn about how we really support individuals with shared decision-making about their treatment and care options.

Awareness of the critical importance of Health Literacy is gradually increasing but if the media interest in the Liverpool Care Pathway and on DNACPR decisions has taught us anything, it is that health professionals needs to focus much more energy on learning from the real experts (patients) about how to explain uncertainty, and how to achieve a real shared understanding of the risk / benefit balance that lies in every treatment and care decision.

No one would suggest we should all be thinking about death and planning for dying all the time – most folk just want to get on with living. But if you ignore or deny what might be ahead you may find that nagging worries about what the future holds creep into your field of vision every now and again and get in the way of enjoying the moment.

Starting an Anticipatory Care Plan (ACP) means that those worries, which take so much effort to constantly push back into the dark corners, can transform into thoughts and conversations and decisions which can be documented. These decisions will in turn be sources of reassurance that your wishes are known and will be respected even if you are too unwell to think about what you want at the time.

It will soon be expected that any health or social care professional might ask you questions like;

“Are you able to think about a time when you might be less well – what do you feel would matter most to you then?” “Who would you want to make decisions on your behalf if you weren’t able to do that?”

Discussing how any treatment options might fit with, or might risk the values a patient recognises as what matters most to them is not optional and it is not a luxury of time. It is of supreme importance for good end of life care but it is also just good care for any patient and their family, at any time. Expect to be asked “What matters to you” and if you are not asked…..please have a think about it and just tell us anyway!

Dr Juliet Spiller, Consultant in Palliative Medicine at the Marie Curie Hospice, Edinburgh.

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