David Oliver: Should advance care planning enter the mainstream?BMJ 2018; 361 doi: https://doi.org/10.1136/bmj.k2123 (Published 15 May 2018) Cite this as: BMJ 2018;361:k2123
Contact with the acute care system, especially repeated contact, is often a sign that life expectancy is limited. Around a third of adult patients in an NHS acute bed are in the last year of their lives, although many won’t know it, and nor can doctors necessarily predict it. About 40% of over 65s will die within 12 months of leaving hospital.  Those with severe frailty are four times more likely to die within 12 months.
You might think, when someone is becoming very frail or has a life limiting condition diagnosed, that this would open the way for specific decisions about end-of-life care and its limits. Yet such advance care planning is still not the norm. It’s clear to practitioners like me that these conversations just haven’t been had or, if they have, they haven’t registered with patients or their families.
Sometimes those patients or families are in the dark about the likely natural progression of their disease. This is why we see surprised reactions, and sometimes the doctor-patient relationship is harmed during that acute care episode. Tricky therapeutic decisions are discussed for the first time during a distressing acute crisis.
We know that advance care planning has benefits. In 2016 Dixon and colleagues reported an analysis of the national survey of bereaved people, describing 22 611 of the 151 000 eligible registered deaths. They used documentation of the preferred place of death as the indicator of advance care planning. Patients with an advance plan were over six times more likely to die at home. They had significantly greater odds of good pain relief near the end of life and of receiving what their relatives described as “excellent” or “outstanding” care.
Tricky therapeutic decisions are discussed for the first time during a distressing acute crisis
Dixon et al also showed that advance care planning is far from typical. Some great initiatives have tried to ensure that more patients have advance care plans—but significant barriers arise, not least the fact that overstretched clinicians often don’t have the time to discuss these in a structured way and may lack the confidence or training to do so.
It’s also not clear whether the public is quite ready for this approach. The tabloids were outraged when, as part of the English Department of Health’s initiative to do care planning for all over 75s, district nurses were asking people about resuscitation. And focus groups carried out for Age UK suggest that older people want to discuss care only towards the end of life, when it’s clear that they’re expected to die in the next year or two. They also want to have these discussions only with trusted, familiar practitioners.
Regardless of obstacles, we need to make advance care planning a mainstream medical activity.
Competing interests: See bmj.com/about-bmj/freelance-contributors/david-oliver.
Provenance and peer review: Commissioned; not externally peer reviewed.
1 Clark D, Schofield L, Graham F, Jarlbaek L, Gott M, Isles C. Rapid response: hospital care in the last year of life. BMJ 2015. https://www.bmj.com/content/351/bmj.h4266/rr.
2 Clark D. How many people in hospital today will die within a year? University of Glasgow. 19 March 2014. http://endoflifestudies.academicblogs.co.uk/how-many-people-in-hospital-today-will-die-within-a-year.
3 Dixon J, King D, Knapp M. Advance care planning in England: is there an association with place of death? Secondary analysis of data from the National Survey of Bereaved People. BMJ Support Palliat Care 2016;pii:bmjspcare-2015-000971. http://spcare.bmj.com/content/early/2016/06/16/bmjspcare-2015-000971.