Dirty Blood
- Dirty Blood
My blood is dirty," Brian explains to the triage nurse when he arrives at the emergency room requesting urgent dialysis. He has a dialysis catheter in place and says his last dialysis was approximately one month ago. Further questioning reveals that he has autosomal dominant polycystic kidney disease (PCKD), which also afflicted his father, an uncle, and two cousins. His father died of kidney failure when Brian was a teenager.
Brian is now in his forties and has worked a series of construction jobs—some with health insurance, some without. Six years ago a doctor discovered his elevated blood creatinine level. He saw a half dozen nephrologists before beginning dialysis, but never the same doctor twice, and when asked he cannot recall any of their names. A year ago, his creatinine level reached fifteen (normal is about one) and doctors discovered fluid around his heart. This was when he started dialysis.
Brian says that since then, he has had no problem maintaining fluid balance or safe potassium levels, and he has continued to make urine. Yet he thinks he'll be dead in five years no matter what he does because every other family member with PCKD has died within five years of kidney failure. Because he wants to hike, be with friends, and travel "in the time I have left," he had asked his nephrologists if he could come for dialysis once a week. His doctors didn't agree with this plan, believing he could live for decades with adequate dialysis or a kidney transplant. They pointed out that the survival rate for patients with kidney failure has improved since his family members became sick.
Brian wasn't convinced, though, so he had looked into this claim online. According to the U.S. Renal Data System, the survival prognosis for a patient of his age and diagnosis is eight to ten years—certainly longer than his relatives, but hardly the "decades" his doctors claimed. He also refused the suggested transplant because his uncle had one and then died of cancer. His doctors denied a connection, but Brian also found medical studies on the Internet that contradicted them.
Brian had begun skipping dialysis. Finally, the dialysis social worker called his mother to ask her to persuade her son to come more regularly. Angry at this violation of his privacy, Brian stopped going altogether. When he tried to find another dialysis center, he was told he had to be referred by the first center. As a result, he now receives no regular dialysis. About once a month, he feels ill and visits the emergency room.
Emergency room medical staff arrange for Brian to receive immediate dialysis, but during it, he develops chest pain and low blood pressure. Although doctors advise him that he may be suffering a heart attack, he says he's heard that before and refuses further evaluation or hospital admission. The next morning, he is found dead in his home.
Did Brian's providers mishandle his case? Could the details have been handled differently?
- Commentary
Brian knew that dialysis once a month wasn't enough, but unlike his doctors, he wasn't convinced he needed dialysis three times a week. He valued his independence and control over his time, in part because he underestimated his survival. Conversely, his physicians overestimated his prognosis, which colored their perceptions of the burdens and benefits of more frequent dialysis. Unfortunately, Brian's skepticism and even outright distrust were reinforced by what he viewed as misinformation (or may even have viewed as deception). Mistrust undermined any progress toward shared decision-making—the ideal promoted both by practice guidelines and by evidence that new dialysis patients who report greater participation in decision-making have improved outcomes five years later.
The Renal Physicians Association and the American Society of Nephrology Clinical Practice Guideline on Shared Decisionmaking specifies that "the primary care physician or nephrologists should hold a discussion with the patient or legal agent about life expectancy and quality of life." Some nephrologists have expressed concern about this, however, arguing that survival figures will frighten patients and that available survival statistics are based on...
