Peter O’Halloran, Lecturer, Queens University Belfast
A couple of years ago I was discussing the demise of the Liverpool Care Pathway with colleagues in one of our local hospitals. We had just completed some research  exploring some of the reasons for the failure of the pathway – one of which was the difficulty clinicians of all stripes have in discussing death and dying in a timely way. Often the discussion, if it happens at all, takes place when the person is only days away from death, with the risk that communication with the patient and family takes place in the midst of fear and uncertainty. My colleagues thought advance care planning might be part of the solution to this problem.
Advance care planning (ACP) has been defined as a process of discussion between an individual, their care providers, and often those close to them, about future care. It may lead to an advance statement of preferences; an advance decision to refuse treatment (ADRT); or to the appointment of someone with lasting power of attorney. It seemed an area of practice with considerable potential – and ripe for research; but which patient group should I focus on? ‘You should look at people with end-stage renal disease,’ said my colleague, Helen Noble (@helnoble). That didn’t seem obvious to me, but it was difficult to get away from the idea – partly because I share an office with Helen but mostly because, when I looked into the literature, I discovered a group of people who might well benefit from advance care planning. Here are the facts:
The prevalence of moderate to severe chronic kidney disease (defined as stages 3-5 CKD) has been estimated at 6-8.5% amongst adults in the UK [3–5] and at over 30% in those aged 75 and over.  It’s associated with rising risks of hospitalisation, cardiovascular events, cognitive impairment and death. The rapidly growing minority of older patients with CKD who progress to end-stage kidney disease (ESKD) are at even greater risk, as they exhibit the mixture of functional decline and co-morbidity typical of frail older people.  However, a substantial proportion of patients and their families do not discuss end-of-life care (including withdrawal of dialysis, ICU admission, involvement of specialist palliative care, cardiopulmonary resuscitation, and place of death) with health professionals. To compound the matter, the high incidence of impaired cognitive capacity amongst patients with ESKD limits their ability to make informed choices and places additional decision-making burdens on their families.
Helen introduced me to an array of enthusiastic renal clinicians (doctors and nurses with a deep commitment to enhancing quality of life for their patients) and we formed a research team which included people living with renal disease, and some experienced trialists – and slowly a research proposal took shape.
Fast-forward to the present and we are just about to start a feasibility study for a trial of advance care planning with older patients who have end-stage kidney disease – the ACReDiT study (www.ClinicalTrials.gov Identifier: NCT02631200). Hopefully this deferred entry randomised controlled trial, side-by-side with a mixed methods process evaluation, will pave the way for a full multi-centre trial to see whether (and how) advance care planning really works for patients and their families.
1 McConnell T, O’Halloran P, Donnelly M, et al. Factors affecting the successful implementation and sustainability of the Liverpool Care Pathway for dying patients: a realist evaluation. BMJ Support Palliat Care 2014;:bmjspcare – 2014–000723 – . doi:10.1136/bmjspcare-2014-000723
2 Royal College of Physicians. Advance care planning. Concise Guidance to Good Practice series. London: : Royal College of Physicians 2009. http://www.rcplondon.ac.uk/resources/concise-guidelines-advance-care-planning
3 Stevens PE, O’Donoghue DJ, de Lusignan S, et al. Chronic kidney disease management in the United Kingdom: NEOERICA project results. Kidney Int 2007;72:92–9. doi:10.1038/sj.ki.5002273
4 Roth M, Roderick P, Mindell J. National Statistics Health Survey for England – 2010, Respiratory health. Leeds: : The Health and Social Care Information Centre 2011. http://www.hscic.gov.uk/pubs/hse10report
5 Jameson K, Jick S, Hagberg KW, et al. Prevalence and management of chronic kidney disease in primary care patients in the UK. Int J Clin Pract 2014;68:1110–21. doi:10.1111/ijcp.12454
6 National Collaborating Centre for Chronic Conditions. Chronic kidney disease. London: : Royal College of Physicians 2008.
7 Anderson S, Halter JB, Hazzard WR, et al. Prediction, progression, and outcomes of chronic kidney disease in older adults. J Am Soc Nephrol 2009;20:1199–209. doi:10.1681/ASN.2008080860
8 Arulkumaran N, Szawarski P, Philips BJ. End-of-life care in patients with end-stage renal disease. Nephrol Dial Transplant 2012;27:879–81. doi:10.1093/ndt/gfs028