Last week I finally got to catch up with some John Stewart and The Daily Show. I happened to see this clip:
Betsy McCaughy on The Daily Show
While I think most people have realized that “death panels” were nothing more than hyperbole and fearmongering, I think the underlying issue–how do Americans plan end-of-life care–still merits discussion.
In the interview with John Stewart, Ms. McCaughey seemed particularly concerned that there would be a checklist for doctors to go through with families, detailing their thoughts on hydration, nutrition, antibiotics, etc. THAT’S AWESOME. I think most people believe that if a patient chooses to have a DNR, then nothing will be done for them if they come to the hospital. Absolutely not! A DNR/DNR (Do Not Resuscitate/Do Not Intubate) covers what to do in a code situation–a person’s heart has stopped or they have stopped breathing. This does NOT help doctors know what a patient would want if they have a UTI or pneumonia and can’t vocalize their wishes. And while it seems callous to ask someone if they want nutrition in these situations, it’s an important question to ask. This does not mean starving someone who can eat for themselves. It means if I am so demented that I can’t eat by myself, do I want a tube inserted into my stomach so that someone can pour a can of Ensure down every 4 hours? HELL NO. If there is little or no chance that I will make a meaningful recovery from my illness/injury, than LET ME DIE. DO NOT FEED ME THROUGH A TUBE. DO NOT HYDRATE ME JUST TO KEEP ME ALIVE. LET ME DIE. A checklist is a great idea, because it takes the conversation past just the last few minutes of life (essentially what a DNR/DNI covers) and broadens the discussion to the quality of life issues than can arise in the last few days/weeks/months of life. And I’m not saying everyone needs to feel how I do. If you want a g-tube and Ensure, then by all means, you should get it. What this proposal is doing is allowing people to think about these issues and vocalize their desires. And that is a good thing.
Another reason I’m so glad that this is in the draft of the bill (although given the hoopla surrounding it, I doubt it will make it in to the final cut) is that doctors can now be paid for having a discussion with patients about end-of-life issues. Working in the emergency department, I often grumble that primary care doctors aren’t talking with their patients enough about end-of-life care, even if they have a severe or terminal illness. Then the patient arrives in the ED, sick as shit, and I have to figure out what they would like to have done. I grumble, but I realize that a minimally adequate conversation on this topic can take a half hour or more. In a pressured, tightly scheduled primary care practice, there simply isn’t time to do this and still cover the overhead (my feelings on how insurance companies have choked the life out of primary care doctors can come another time). If, however, the conversation can be billed separately, then doctors can allocate the appropriate amount of time, and still pay their rent, their staff and their malpractice. Trust me, doctors don’t want to get paid for this because it’s going to be quite the money-making scheme. They want to get paid because given the amount of time it takes, they need to be paid for it. You wouldn’t expect a surgeon not to get paid to take out your appendix, would you? Well, a good surgeon can take out an uncomplicated appendix in less time than it takes a primary care doctor to discuss options, answer questions, explain alternatives and reassure patients that their wishes will be respected.
And why is McCaughey so up in arms about the possible penalties that doctors face about NOT having these conversations? The government and various regulatory bodies have already decided that some specific measures should be implemented–certain vaccines for those over 65, antibiotics within a certain time frame for pneumonia, an aspirin and beta-blocker for those with acute coronary syndrome and so on. Data is collected and doctors and hospitals must meet a certain threshold or they will lose money under the Pay for Performance structure. So, assuming that it’s good if patients get a chance to say what they want done if they are sick and can’t speak for themselves, then why shouldn’t it be part of Pay for Performance? (The benefits of Pay for Performance can be debated another time). It seems as if the proposal is simply trying to be consistent in how it approaches quality measures.
My last beef is that McCaughey feels that it is inappropriate for doctors to be assessed on how well they are adhering to advance directives/living wills. If a patient and their family sits down, thinks about the options, discusses what should be done and then makes it into a binding legal document, is it not reasonable for doctors to adhere to that?
This issue is particularly fresh in my mind as I had a very challenging case the other day. A family brought in their 97 year old grandfather. He was very sick–his heart was pumping twice as fast as usual and his blood pressure was tanking. His abdomen was rigid, a sign of possible infection or air within. The usually spry and feisty man was simply lying in bed, murmuring occasionally in Russian. I knew almost immediately that I had only a few minutes to intervene, but no matter what I did, I likely would not be able to change the outcome. I said to the family, “Your grandfather is very ill. I can be aggressive in his care but I may not be able to save him. What would you like me to do?” They said, “Do everything you can do.” And so we did. Several people held him down so we could put a large IV in his groin and a catheter in his penis and a tube down his nose. We were thinking that soon we’d have to put him on a ventilator. There were complications, leading to more needles and pain. All throughout, I kept thinking, “This poor man. Is this really how he wants to die?” I knew that even doing everything I could, he was too sick, his body was too old for me to make a difference. After two hours, we finally had the reason he was so sick. An ulcer in his stomach had eroded through the stomach lining, realizing air and bacteria into the abdomen. I went back to the family and explained that even if I could convince a surgeon to take him to the operating room (a VERY big if), he likely would die in surgery or shortly after. I asked if they would like to stop intervening, stop being aggressive, stop trying to save his life and instead focus on treating his pain, on making him comfortable, on letting him die with dignity and grace. With tears in their eyes, they said they would. So we pulled out the tubes, we turned off the monitors and we let his son and daughter-in-law and grandsons gather around him and hold his hands and tell him how much they loved him. It was beautiful. And I know, beyond a shadow of a doubt, that it was the right thing to do. My only regret in his care is those first two hours–the pain, the restraints on his wrists, the turmoil in the room as we tried to do a thousand things at once.
Please, please, please, talk with your family members about what they would like at the end-of-life and what you would like. Be informed. Know the options. Discuss it with your doctor and put it in writing. Five Wishes is a great way to learn more. This is your body. You should choose.