New Orleans There are no good ways to die, but emphysema is a tough way to go.
I watched my grandfather die that way as a child. He was weak and housebound in his last years. The main medical palliative in the middle-to-late 1950s was to encourage him to get a color television. My relatives used to say that Albert Wade Ratliff had one of the first ones in the whole Mississippi Delta. His signal in Sunflower County produced only two colors, red and green, but since my brother and I didn’t have a television at home, on our seasonal visits there, we were enthralled.
Almost exactly five years ago, I watched my brother die of emphysema as well. Unlike my grandfather, he was tethered to a breathing machine and in his last year pretty much lived on the couch in the den of my parents’ home where the color television was always on and a computer was propped up near him which he used when he was able. A couple of years short of Medicare, he resisted going to the doctor, except when forced. In his last emergency visit they had held out hope that he might qualify for a transplant though, and that sustained him stoically and silently for a while, even though it turned into a mirage.
We are always led to assume that the problems in getting transplants is supply, but reading an article in the Wall Street Journal by Dr. David Weill, who is an expert in this area and the former director of the Center for Advanced Lung Diseases and the Lung and Heart-Lung Transplant Program at Stanford University Medical Center, it seems clear that it is the chaos and dysfunction of the system itself that is refusing to save critical patients. The numbers prove the system is failing. Thirty percent of lung patients “on the waiting list never get a transplant. Among transplant candidates waiting for all organs, an average of twenty-two die each day, or about 8000 each year.” Weill states flatly that the organs are there, tragically thanks to the opioid crisis, but the distribution system doesn’t work.
Unbelievably, there are sixty not-for-profit organ procurement organizations that are each responsible for a single geographical area of the United States. Although under the supervision of the Department of Health and Human Services, the system continues to resist reform. Time and distance are not coordinated efficiently. Despite equipment that could sustain organs and keep blood flowing 24 to 48 hours, most hospitals still pack coolers that can keep them viable for six hours while flying from place to place. Surgeons are often not available. “Quality concern” is the default reason for rejecting transplants when received, but that too often is simply the default box that is checked for everything including unavailable personnel to do the job along with scheduling and coordination problems.
Regulation and supervision by DHHS are virtually nonexistent. Weill argues that,
“Transplant programs are not evaluated by regulatory agencies to determine how well they use the organ donors available to them. Instead, they are judged primarily on how many of the patients they transplant are alive one year after surgery…. The emphasis on one-year survival makes transplant programs overly cautious, letting viable organs go unused instead of using organs that they fear might harm their report card.”
To put it bluntly, that means that the patients die while waiting in line.
Maybe a national health care system for all would solve this problem. Maybe DHHS actually doing its job would be enough. If they can’t do it, I hate to say this, but if Amazon and UPS get a piece of merchandise to us overnight, they might be able to figure out the logistics and distribution system for something even more vital, when it’s actually a matter of life and death.
None of this would necessarily have saved my grandfather or my brother. They both had stubborn streaks a mile wide, but no matter how stoically they accepted their fate, they were both smart enough that they would have taken advantage of a system that worked, if there had been one that did.
Wade Rathke is founder and chief organizer of ACORN and ACORN International. You can find Wade’s recent past posts here Chief Organizer Reports. And you can link to his website here Chief Organizer ACORN/ACORN International