November 7, 2005
Transylvania Syndrome
That's how I used to refer to patients who had chronic and progressive diseases resulting in severe impairment including chronic life support with interventions like dialysis and ventilator support.
Why Transylvania ? It is the home of the living dead. I used to see many of them that way. Caught somewhere between life and death--on a machine--and not moving in either direction.
It was with great connection and emotion, then, that I read “ The Choice. Years on Dialysis Brought Joe Mole to a Crossroads” which was front page on the Wall Street Journal on November 3.
This beautifully written piece by Michael McCarthy tells the story of Joe Mole, a 41 year old man with Type 1 diabetes mellitus on dialysis and facing a decision to continue or not.
This story could have been used to illustrate any of several larger healthcare contexts. He could have made a statement about the “right to life” movement or the “right to die” movement. Or he could have talked about healthcare costs and futile care. Or he could have made a pitch for better care of chronic diseases and leaned on the patient “compliance” button. Or he could have talked about the evangelical idea that suffering is a righteous thing and any life no matter how much suffering is spiritual. Or he could have engaged the argument over stem cell research, cloning, and replacing bro ken organs with new ones. But he didn't do any of those things. He just told Joe's story.
It makes the story very compelling, especially for those of us who have assisted and supported many patients through the same decision making process. A small irony, this story comes from Elkins, WV, the state of my youth and a town that I used to visit twice a year to see my aged aunt in the Odd Fellows Home. I can picture this story vividly.
“As the winter of 2002 approached, the only things standing between Joe Mole and the biggest decision of his life were his family and friends, his faith, and an unfinished set of cherry wood pews. Mr. Mole, a 41-year-old carpenter, was debating whether to die.
He had spent most of his life dealing with complications of diabetes, diagnosed when he was 19. By the prime of his life, his vision was blurring, he had lost four toes to amputation, and kidney failure had forced him to undergo dialysis treatments three times a week.”
“…every Monday, Wednesday and Friday, he drove his Chevy truck to a clinic, climbed into reclining chair number 7, and had to sit for four hours as a dialysis machine washed toxins from his blood that his kidneys no longer could. And he was sick of it -- sick enough to start telling people he might quit the treatments even though that meant certain death.”
Many of the treatments we call “life-saving” are indeed that, in the sense that you achieve some improvement in the quantity of some type of life. The true costs are almost never captured anywhere, because much of the cost is in the form of human suffering.
Joe was a rare dialysis patient in that he was able to do some type of work outside of his illness. He was a carpenter. The vast majority of ambulatory dialysis patients go to dialysis and home. In between treatments, they recover from the treatment. Treatments often make them sick or just feel weak and lethargic. There is “disequilibrium syndrome.” Complications from dialysis are legion and include acceleration of heart and vascular disease and opportunistic infections. Hospitalization is frequent.
I used to say dialysis patients are acutely sick on a chronic basis. Of course, I only saw folks in the hospital having complications. Nonetheless, it is a less than perfect treatment.
Dialysis can be used as a bridge to transplantation. Renal transplantation is the most successful solid organ transplantation. And yet, most patients end up back on dialysis, and even while the organ is working, patients have what I call “transplant disease.” That is, they take copious medications to prevent rejection and to control their underlying disease that caused the renal failure to start with. And they have frequent contact with the healthcare system and have frequent complications requiring hospitalization.
I often advocated that the transplant physician not be the person to explain “informed consent” to the prospective transplant recipient. I have heard the pitch. It almost sounds like a muffler change or something like that. Nothing could be further from the truth for most patients. And the transplant physician has a “conflict of interest” in that all of those complications and hospital care needed for most patients are fully reimbursed to the transplant physician. Most would be hollering at me about right here, but it is a conflict of interest, recognized or not.
“People who choose death (by discontinuing dialysis) usually cite the discomfort and tedium of treatments, nausea, vomiting, exhaustion and troubles with veins. They usually have chronic, but not terminal, health woes, such as diabetes, high-blood pressure and heart problems.”
“Otherwise, voluntary dialysis quitters are often in solid mental health, and aren't usually influenced by major depression or suicidal tendencies, according to psychiatrists who have studied the issue. They don't leave family members to confront a sudden loss with little more than a suicide note. Rather, they sometimes quit treatments despite having family and friends who plead with them to choose life.”
I highly recommend reading this whole story in the original. It's quite good and describes in detail Joe and his family going through the decision making process that leads one to stop dialysis and embrace death including the role of family and religion.
It illustrates quite well the process of “informed judgment” and the principles of self-determination and collaborative care supported by The Abramson Center for the Future of Health.
It will be much better when there is no Transylvania Syndrome. When broken organs can be repaired or replaced without rejection and transplant disease and patients can be restored to healthful life. Until then, thoughtful support and collaboration to bring patients—through the process of informed judgment--the level of care and comfort that they want for themselves as defined by them should not only be our goal, it is our duty.
Robert B. Teague is a pulmonologist and business consultant who is based in Houston, Texas. E-mail him.
Read other blogs in this series.
