"The cost of end of life care is biggest elephant in the room in our healthcare system." Christopher Coons, D-Delaware State Senator
Two days ago, our hospital lost one of our chronically ill patients. At a children's hospital, when this happens, this is a big deal. Chronically ill pediatric patients are like a second family to the staff of the hospital. This patient was 19 years old and had been taken care of by our hospital family for almost the entirety of his life. Let's call him, Romeo.
Romeo was a twin. His brother, let's call him, Mercutio, was born with the same genetic medical condition, cystic fibrosis.* Their lives and their families lives revolved around their healthcare for their entire lives. They had had hundreds of hospitalizations individually, and often times, they would be hospitalized together. Everyone in my residency class knew them because they had been in the hospital 3 years ago very frequently. About one and half years ago, Mercutio passed away. The process was long and arduous for him and his family.
After he lost Mercutio, Romeo had a turn for the worse. He dropped off the healthcare radar, stopped coming to his appointments, stopped taking his medications. I'm not sure what he did during this time, but rumor has it that he had a girlfriend, and when I took care of him recently, I saw he had a tattoo. As a healthcare provider, I am supposed to wag my finger at him, but in all honesty, I hope he lived life to the fullest and experienced all life had to offer during this time.
Roughly 2 weeks ago, Romeo came to our ER because he was vomiting/ coughing up massive amounts of blood. He was admitted to the Intensive Care Unit. After he was stabilized, he had a discussion with his team of doctors. He knew he was near the end. He had an advanced directive. He didn't want to die in the intensive care unit. He wanted to experience it on his terms.
The process of watching someone die is difficult for the hospital staff, as well. Why? As a healthcare provider, you (hopefully) sign up for the job to try to help people get better. When someone is dying, it's uncomfortable to watch and feel helpless. It's also hard to predict when someone's time will come when they are near the end. Sometimes, it is a slow, gradual decline while other times it can take longer. I am so humbled and honored that families of patients look to their doctors for a sense of security and order in a time of great chaos. One question I received from a family member during the process was "Will it happen tonight? When will he go?" Unfortunately (or fortunately, depending on how you look at it), even doctors have no good way of predicting such things. We can give estimates and predictions, but we are about as accurate and as variable as the weather report for next week.
I admire Romeo and his family. They had a discussion about his end of life care. He had an advanced directive and his wishes were respected and followed through. So very rarely do you see this occur in the healthcare world. Even I, in my short tenure in adult medicine, have seen too many cases of adults, the elderly, being resuscitated and mechanically ventilated in the last few days of their lives. They have tubes coming out of every orifice in their body: a breathing tube, a feeding tube, a catheter to measure urine, multiple central lines for intravenous access. Every two hours, they are being poked and prodded for labs and vital signs.
From the National Bureau of Economical Research:
... "Ten per-cent of respondents spending more than $29,000 per year and the top one percent of respondents spending more than $94,000 per year [on end of life expenditures]. These values are large relative to the non-housing wealth of a typical older household, which is about $25,000."
“In addition to its effects on patients’ quality of life, unnecessarily aggressive care carries a high financial cost. About one-fourth of all Medicare spending goes to pay for the care of patients in their last year of life, and much of the growth in Medicare spending is the result of the high cost of treating chronic disease,” said David C. Goodman, M.D., M.S., lead author and co-principal investigator for the Dartmouth Atlas Project, and director of the Center for Health Policy Research at the Dartmouth Institute for Health Policy and Clinical Practice.
wrote an article highlighting the paternalism in end of life care. The authors highlight the importance in addressing prognostication and teaching the skill of having end of life discussions with patients and families.
Americans hate talking about death. It truly is the biggest white elephant in the healthcare system. Americans want to feel that they are immune from death, and if they avoid talking about it, maybe problem will go away. It's uncomfortable, it's sad, it's inevitable, and it makes us address our collective humanity. We need to talking about it, because as humans, we deserve to die in dignity.
I pray for Romeo and Mercutio. Indeed, they are tragic heroes of this world. I pray that they are together now in peace, and that they will be united with their loved ones in whichever next life they believe in.
*Cystic fibrosis is a genetic disease that effects the chloride channels of your cells. It effects every system in your body, but they were first described in pancreas and most notoriously causes lung problems. Because you are unable to secrete chloride to create mucous and sweat and tears, you start plugging up the airways in the lungs and infections start to brew. That causes destruction and irreversible changes of your lungs, so they cannot develop properly. Plus, you can get diabetes, intestinal obstruction, and your immune system doesn't function well anymore either.
