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This disconnect is especially jarring at the end of life, Dr. Bansal said, as dying is too often an overly intense process for those with failing kidneys. Chronic kidney disease raises difficult questions as it progresses, and patients and their doctors are often both uncomfortable talking about the future.
The result: Compared with other severe illnesses, fewer patients with chronic kidney disease have their end-of-life-care wishes known ahead of time through advance directives and other guidance.
Dr. Bansal cited data showing a rise in hospitalization, ICU care and inpatient death among patients who did not have an advanced care directive. Patients with such a directive were more likely to end dialysis and use hospice care.
One way to improve care is to integrate palliative care, called renal supportive care in this context, in the treatment of patients at every stage of the illness. Renal
supportive care is aimed at the treatment of symptoms and the maintenance of quality of life rather than curing the underlying illness. For example, in renal supportive care, doctors may control blood pressure, but only to control symptoms. Hitting laboratory targets would not be a priority.
By focusing on what’s important to each patient, palliative care can help them live the life they want rather than just survive.
Even so, Dr. Bansal said, “Not doing dialysis does not mean you’ll die right away.”
One study showed no survival benefits for dialysis in patients older than 80 com- pared with those who did not receive it.
Finally, Dr. Bansal added that it was important to reframe renal supportive care to make it clear that doctors are not giving up on their patients. And patients can change their mind and try dialysis.
S. John Swanson III, M.D., FACS, chief of transplantation surgery at Christiana Care.
A caregiver’s view
The symposium’s attendees experienced a poignant view of the end of life from Margaret R. Poppiti, MS, BSN, RN, whose husband passed away from PKD in 1998.
Her husband’s discontinuation of dialysis, which came after his transplant failed
and his vascular access clotted, leading
to worsening symptoms, was a difficult decision for Poppiti to accept. She tried in vain to convince him the clot was only a setback.
Poppiti said she eventually came to realize her husband was afraid of losing his hand — and his independence. After accepting his decision, she informed his care team, and her husband passed away surrounded by his family a short time later.
About 15 years earlier, Margaret Poppiti had graduated from the University of Delaware with a bachelor’s degree in nursing. The experience came to serve her well, personally and professionally — as three of her four children inherited the illness.
Formerly a nurse in a Veterans Affairs
hospital’s hemodialysis unit, Poppiti also
became an advocate and is a governor-
appointed member of the Delaware
Chronic Renal Disease Advisory Board.
CONTINUED
RESEARCH
S. John Swanson III, M.D., FACS,
chief of transplantation surgery at Christiana Care; Mia Papas, Ph.D., director of Clinical Research and Health Outcomes within Christiana Care Health System’s Value Institute; Eric V. Jackson Jr., M.D., MBA, executive director of the Value Institute and director of the Value Institute’s Center for Health Care Delivery Science; Herbert Scherrer, administrative director for the Value Institute; Claudine T. Jurkovitz, M.D., MPH, senior physician scientist at the Value Institute; and Tim Gibbs, executive director of the Delaware Academy of Medicine.
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