An End of Life Quandary

The New York Times posted a nurse's account of a terrifyingly and heartbreaking end of life situation where a young patient died after receiving all manner of advanced treatments.

We recently had a patient on my hospital floor who painfully brought to mind that suffering child and the story of Omelas. He was young, in his 20s, and had undergone an allogeneic stem cell transplant as the only chance of curing his cancer. He had many of the more severe complications that can occur with this treatment. A virus had turned his urine red with blood. His immune system waged a battle against the transplanted cells, leaving him temporarily blind and causing his skin to age unnaturally. His liver was slowly failing. He had almost constant diarrhea and for long periods got his only nutrition intravenously.

For months he stayed on our floor, slowly getting worse. In the end he couldn’t live without constant transfusions. Every time he stood up he leaked blood. Then his mind started to fail, too.

His doctors continued to throw one last-ditch treatment after another at him. Not one of them made a real difference in the patient’s condition, and each came with its own set of potentially dangerous side effects. Finally, and against the express wishes of at least one of his doctors, his parents decided to stop all medical care. Soon after they watched their son die.

Scenes like this are all too common in U.S. hospitals today. That is why proponents of health care reform call for provisions that would encourage patients to talk about end-of-life treatment long before they get there. For this patient, a lot of money was spent on care that made him worse when it could have been used to make someone else better. But more than that, we prolonged his suffering, racked his body with one toxic treatment after another, and held out false hope to him and his parents.

The nurse, and some of her coworkers, say that they don't think that this was a worthy expenditure of health care dollars.

I'm not sure I'd agree.

Scenes like this are all too common when it comes to cutting edge technologies and treatment options. Medicine is littered with millions of patients who benefit from improved treatment because of new technologies and treatment paths that weren't possible before.

I think to my own family's experiences with cancer. Two relatives died of cancer in the early 1980s - before the advent of MRI, CT, and other nuclear imaging. The doctors at Memorial Sloan Kettering, where both received treatment - were tops in their field (and in the world) and yet they could do nothing to keep either from wasting away and dying. They tried radical cutting edge chemotherapy treatments that we now take for granted, but in the end, radiation treatments and chemo didn't get it done.

Now, those same cancers are treated with completely different outcomes - long term remission and cures. Advances in nuclear imaging and radiology allow pinpoint treatment and customized chemotherapy, giving a much better outcome. Yet, there are some cancers are still stubborn (see Kennedy's glioma or pancreatic cancer) and are perceived as a death-sentence. Even with gliomas and pancreatic cancer, there is a better chance of short term survival now than only a few short years ago, and the more that researchers and doctors get to treat such conditions, the better options become available.

The only way doctors gain the knowledge and expertise in treating incurable cases (which later become treatable and curable) is to treat them. Pursuing other options means that the pace of knowledge and advances in medicine slow.

I think that is an incredibly short-sighted approach.

So, while it is imperative for the families and doctors to discuss end of life treatments, making sure that all are aware of the outcomes and to prepare for death, it should be their combined decision taking all those factors into account.