Sunday, April 17, 2011

Heroic Measures

Steve's nephrologist, Dr. Smiley Thakur, called after Steve died. We talked about Steve's final days, and the many difficulties Steve had endured over the past three years.

On the morning Steve actually died, I had called Medic One. Steve was essentially unresponsive. The paramedics asked if I wanted him intubated (i.e. on a ventilator) if his condition deteriated on the way to the hospital. I declined intubation - should that be considered. En route to the hospital, the lead paramedic called me to clarify that I wanted no further intervention, as Steve had just gone into cardiac arrest.

While Steve had always been a "full code," i.e. full emergency intervention, his situation had clearly changed. As his Durable Power of Attorney for Health Care, I knew that Steve didn't want to go on if his quality of life were even more severely limited.

He wanted to go "when the banter stopped."

Steve had every conceivable intervention possible over the past three years: a kidney transplant which failed - leaving him with a wound that could have admitted a housecat into its depth, a major open heart surgery, sepsis, critical illness myopathy, gangrenous toes, a leg amputation.

Dr. Thakur commented, "You know the difference: when you're doing things to him, rather than for him. You saw that, and made the right call."

Steve's home care was complicated. His blood sugars could vary from 30 to 300 in the span of a day.

And, of course, we did Home Dialysis - both hemo AND peritoneal dialysis. Because of Steve's impaired blood circulation, blood pressures were unreliable. And weights couldn't be obtained because of his mobility problems. So, we'd make an assessment of his volume status by using the cues we had: his appearance, his edema, thirst, how he felt. I could estimate his fluid status by checking the places in his body where fluid gathered. I so remember how the hospital residents would check his legs for this - but the fluid wouldn't be there. When he was fluid overloaded, he'd collect edema in his neck, his arms, his back.

With none of the conventional means to evaluate Steve's volume status, we were left to the most basic tools: good clinical observations.

In my opinion, these were the "heroic measures."

Steve's medical condition was far too complex to be "typical" of a home dialysis patient. Yet, dialyzing Steve at home meant far more normalcy in his life. I will never regret the decision we made to pursue this; it gave his final years far more dignity - and far greater contact with his family and friends.

I am also immensely grateful to Dr. Thakur for supporting our home dialysis care. It took courage on Smiley's part, too.

Steve's obituary is posted on

Take care,
Linda Gromko, MD

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