5 Steps for Giving a Voice to Patients with Advanced Kidney Disease

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About 662,000 Americans are being treated for end stage renal disease (ESRD), according to the Centers for Disease Control and Prevention. While ESRD can impact people of any age, the illness dramatically affects the Centers for Medicare & Medicaid Services beneficiary population. 

In people aged 65 through 74 worldwide, an estimated 20 percent of men and 25 percent of women suffer from some form of chronic kidney disease (CKD), which can lead to ESRD, according to the National Kidney Foundation.

Given the serious implications associated with ESRD — dialysis, the possibility of organ transplant and a host of other issues — doctors have tried to find ways to improve quality of care. A key part of that improvement is incorporating patient perspectives in treatment plans rather than simply being guided by tests and data.

Dr. Anne O’Hare, a professor of nephrology at the University of Washington and a physician at the U.S. Department of Veterans Affairs Puget Sound Health Care System, has spent the better part of her medical career working with ESRD patients. She believes including the patient voice is essential to treating the disease, and she laid out five simple strategies to promote this kind of care.

None of this is rocket science,” O’Hare told a crowd at the 2019 CMS Quality Conference in Baltimore, Maryland on January 29. These are easy steps to implement, but they go a long way in improving care for patients with advanced kidney disease.”

1Listening

O’Hare said doctors often fundamentally move a patient’s personhood aside when they only focus on procedures like reading charts and checking vital signs. While it might not be taught formally in textbooks, those affected by ESRD can offer as much information as medical tests.

They listen well to the lungs, but not to the patient,” she said. If you actually hear what they’re telling you, a patient can lead you to a diagnosis.”

2Making Time

Doctors are often pressed for time. They have too many patients and not enough hours in the day. But for O’Hare, that’s not an excuse to ignore the patient voice. 

If you don’t have time for patient-centered care, then make time for it,” she said. Every second you spend with your patients is an opportunity to hear them.”

O’Hare explained since most doctors who treat advanced kidney disease see their patients for years, they can carve out this time little by little. Even 15- to 20-minute visits are enough to focus on better patient care.

3Doing Other People’s Work

O’Hare implored doctors to go above and beyond their job descriptions, even if the task is far removed from their pay grade. She described a situation where a patient was supposed to be discharged, but no one took on the responsibility. That patient eventually left without understanding the next steps in their treatment.

Small incidents like that can snowball, O’Hare said, causing patients to experience worse health care outcomes. Just because a doctor isn’t ordinarily responsible for discharging a patient doesn’t mean he or she shouldn’t step up and make sure it’s taken care of.

4Rethinking Good Care”

O’Hare referenced Atul Gawande’s 2014 book Being Mortal: Medicine and What Matters in the End” as changing how she defined good health care." She said the book helped her understand how doctors sometimes make decisions meant to protect a patient, but can actually end up limiting the patient’s voice.

O’Hare offered the story of an ESRD patient who wanted to be discharged from the hospital. His team of doctors wanted to keep him admitted, even though he was adamant that he’d be more comfortable at home. 

It was just very clear that it was very important to him to go home. He was completely in his right mind and knew that it could potentially be dangerous,” she said.

O’Hare convinced the team to let the patient leave, with the promise that he’d be back the next day for dialysis. The other doctors relented but warned her that if anything happened to the patient, it wasn’t their fault. 

The patient relationship shouldn’t be adversarial like that. We need to understand what’s important to them. We need to think carefully when caring for patients about whose agenda we’re paying attention to,” she said.

5Seeing Value in Relationship-Building

If the first four steps are followed, O’Hare said, then the fifth should fall into place. She said she was trained that if nothing happened during a patient visit — like having a test ordered or prescribing medication — then the visit wasn’t productive.

It hit me that regardless of what you do, it is an opportunity to commune with your patients. Even passing a patient in the stairwell — these are all chances we have to build these relationships and understand the difficult decisions they face,” she said.