MONTREAL—Advanced care planning (ACP) should be a bigger priority for health care professionals treating dialysis patients, according to Sara Davison, MD, who heads a Kidney Disease – Improving Global Outcomes (KDIGO) working group that is developing guidelines for end-of-life care in renal patients.
Dr. Davison, who has led an Edmonton, Alberta, team that trained the first group of ACP facilitators in North America, gave a presentation on ACP at the Canadian Society of Nephrology’s 2013 annual meeting.
“Nephrology is just so much more than dialysis. The patients are so complex and their needs are so great,” Dr. Davison told Renal & Urology News.
Most hemodialysis patients do not have advance directives, she told attendees. Those who do have directives fail to include consideration of withdrawal of dialysis. Most die in acute-care facilities without accessing palliative-care services, she said. This is despite the fact that about one-fifth of dialysis patients die every year, and withdrawal from dialysis accounts for 20%-25% of deaths.
In a study she led, 61% of patients who were nearing the end of their lives said they regretted their decision to start dialysis, 55% wished to die at home or in an inpatient hospice, and less than 10% had had a discussion about end-of-life care with their nephrologist in the previous year (Clin J Am Soc Nephrol 2010;5:195-204). Furthermore, a Japanese study found families consistently overestimate patients’ wish to continue dialysis in the face of severe dementia or terminal cancer (Am J Kidney Dis 2006;47:122-130).
ACP is “a process that involves understanding, reflection, discussion and communication between a patient, the family and/or health care proxy and staff, with a focus not merely on death and the right to refuse treatment, but also about living well and defining good care for each patient as they near the end of life,” explained Dr. Davison, Associate Professor of Medicine at the University of Alberta in Edmonton.
The first step is to identify patients most likely to benefit from ACP, she said. This is best done early rather than late, she added. Such patients are at high mortality risk and have a high symptom burden. Withdrawal from or withholding dialysis is a reasonable option, Dr. Davison said, and they may have requested to talk about end-of-life issues. The next steps are to determine patient and family readiness for participation in ACP, invite them to talk if they are ready, facilitate the discussion and then document it and follow up at the appropriate times.
These steps may sound simple, but it takes training and practice to be skilled at them, Dr. Davison said. Nephrologists and other physicians lack training in—and comfort with—supportive care, end of life discussions, and ACP. Physicians usually feel that patients and families do not want these discussions, and believe that discussion end of life issues will destroy hope, Dr. Davison said.
One way in which Dr. Davison is increasing the profile of ACP in nephrology is by heading the KDIGO group of approximately 45 health care professionals who will develop international guidelines for palliative care for patients with chronic kidney disease. ACP will be one of the five key elements in the guidelines, and the first consensus conference will be in December.
“I think increasingly nephrologists will train in this. At the moment, in Edmonton we’re looking for fellows to train in ACP who have the technical skills as well as the interpersonal communication skills to be able to deal with difficult end-of-life issues and talk to patients about them,” Dr. Davison said.