Advance care planning and the urgency of now | Prof Brian Dolan and Corrina Grimes

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Prof Brian Dolan and Corrina Grimes outline the case for advance care planning in the context of patient time and their last 1,000 days.

We long for love. We wish we had more time. We fear death. Across the arc of our lives, how often have we experienced or talked about these emotions? For those for whom there are many more yesterdays than tomorrows, they are emotions imbued with urgency. 

They are emotions poignantly captured in the short film Your Last 1,000 Days, which looks at different characters across life’s span, except that each individual doesn’t know how many days they have left and some have entered their last 1,000 days. 

The film is a metaphor for living life to the full and understanding that we never know when our last 1,000 days may begin. If you had 1,000 days left to live, how many of them would you choose to spend in hospital? 

This is why advance care planning takes on the urgency of now. It’s not something for a future that’s washed in the uncertain grey tones of tomorrow’s promissory note, but an action propelled by the vivid hues of today so we can give those closest to us the gift of knowing what we would want when we can’t tell them ourselves. 

Advance care planning is about treating people’s time as the most important currency of all. It’s about doing the right things for people, and the right things for our health and social care system, in the widest context, including all partners in community, voluntary and independent sectors. 

For healthcare professionals, it’s about creating something routine where we put aside our own anxieties about saying the ‘wrong’ thing and respect patient’s time enough that we can have realistic and practical discussions about where and how patients would like to be cared for at the end of their life. 

It is not just an academic argument. As Dr Dhruv Khullar notes in a recent New York Times article

“Two interventions have consistently been shown to help patients live their final days in accordance with their wishes: earlier conversations about their goals and greater use of palliative care services, which emphasize symptom control and greater psychological and spiritual wellbeing – and which recognize that longer survival is only part of what patients want.”

Nonetheless, we tend to silo people into categories:
  • the people for whom we provide care, supports and interventions – the ones we usually label patients 
  • the people who are important to them – their families, carers, friends and communities 
  • the people with whom we work – clinicians, other staff and volunteers 
We are all people first and foremost. People caring for people.

To draw on Susan Sontag’s seminal 1977 work Illness as metaphor, by diminishing people into mosaics of detachable pieces and conditions, we run the risk of treating death, with all its attendant militaristic analogies, as an enemy to be vanquished, leaving them feeling they have let the side down by failing to win their war on cancer, their battle with heart disease or the invasion of whatever condition has befallen them. 

Advance care planning takes a conversation that begins with courage, beginning with the courage of the health professional to lean in and ask not ‘What’s the matter with you?’ but ‘What matters to you?’  

Of course, the irony is that those patients who do engage in advance care planning are less likely to face aggressive medical care near death and their palliative care does not have to be limited to hospice care but provides them with options to die in their own bed rather a hospital, or even a hospice bed. 

It is not only about enhancing the humanisation of care, it has operational consequences that only those who must be in hospital should be there. An expected death with robust advance care planning gives many more choices enabling hospital admission to be one option not the option. 

While our time as health professionals is busy and important, our patients’ time is sacred. In treating as such, we could enable patients to spend more of their last days with those they love most in the place they call home, wherever that may be, knowing they are loved, feeling they have enough time and, hopefully, no longer fearing death.  

Professor Brian Dolan is director of Health Service 360, UK, visiting prof of nursing, Oxford Institute of Nursing, Midwifery and Health Research and honorary professor of leadership in healthcare, University of Salford, Manchester @BrianwDolan

Corrina Grimes is palliative care lead/allied health professional consultant, Public Health Agency, Belfast @Cgrimes3 

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