I have finally figured out that I write this blog to cleanse my soul of garbage that weighs me down and makes it hard for me to continue the good fight day after day. The good fight is trying to help someone find their way to a death that is peaceful and pain free and in a place that they know, surrounded by people they love and trust. A good death involves the opportunity to say “I love you” one last time and to say “I’m sorry” and “Please forgive me” and “I forgive You” and “Don’t forget me”. A good death means that the last breath smells like home and my own sheets and feels like the arms of my husband and sounds like the voices of my children.
The garbage is the ridiculous behavior that “so-called” adults display every day because they cannot cope with the reality that mortality is part of the human experience. I can’t take credit for the brilliant summary of a piece of this garbage but I must share it, exactly the way it was described to me, because it is so on point. When adult children of very old and often very ill parents begin to drive the healthcare decisions for those parents, instead of listening to MDs especially trained in gerontology and palliative medicine, they cause incredible amounts of suffering and pain. On top of that, they pour money into the pockets of a health care system at the cost of their loved ones. What in the heck does that mean…..
An 89 year old woman develops a cold and has a bad cough. Her daughter takes her to her doctor who says, “You need to go get an xray and you may need antibiotics. Go to the imaging center and get a chest xray and then bring the results back to me. I don’t want to do anything that is not really necessary”. But the daughter has to work the next day and decides that it will be easier if mom goes to the ER where they will do something more serious to get her better. She also decides that the doctor in the office didn’t do any tests and mom might have a more serious problem. In the ER, the MD suggests an X ray, IV antibiotics, an overnight stay, some blood tests and the daughter says “Yes” (Of course, doctor in the office has been caring for mom for 30 years, he knows she’s 89, he knows that like almost every other 89 year old lady she will probably get a little confused in a strange place). But ER doctor has never seen mom, and when he sees her chest xray, he sees a spot on her lung. The next morning, he tells her daughter that he needs to do a biopsy because it might be cancer. And guess what else, mom is confused and disoriented today. She wet her bed twice in the night (which sometimes happens at home but daughter doesn’t know) so the nurses got permission for a catheter because they are afraid for her to try to get up to the bathroom since she is confused.
Doc comes back later, mom has lung cancer. Oncology has been asked to consult. There are some treatments that might make mom’s spot stop in it’s tracks and if that happens, she could be around for a loooooong time. (What an angel, that oncology doctor. After all, mom is 89, shes got lots of years left right? Doesn’t matter that dad died 5 years ago and she has been so lonely without him, in her house, living by herself. Thank goodness he is going to save her life.) Of course she is confused and can’t weigh in on what she wants. Oh by the way, no more antibiotics, she doesn’t even have an infection, it was just an upper respiratory virus. Chemo starts in the hospital. Within72 hours mom is super sick from the chemo, she won’t eat, her blood work looks really bad, she is out of her mind confused and disoriented and agitated, doesn’t recognize anyone and has to be restrained because she is trying to pull her IV out and get out of bed.
Two days later, now we are on another antibiotic because mom has a urinary tract infection. Not only does she have a catheter, a mainline into the body, in her bladder, but her immune system took a hit from the chemo and she can’t fight off bacteria and viruses very well. She is not eating and daughter is worried. “Isn’t there anything that can be done? We can’t let her starve to death!” she says to oncologist. He says that a feeding tube can be put in to provide mom with liquid nutrition but he doesn’t mention that since mom didn’t tolerate the chemo very well, he is not going to advise further treatments and mom appears to be declining pretty significantly with the complicating infection in her urinary tract. Incidentally, because mom is not eating and drinking, she is requiring hydration through an IV and her veins are getting harder and harder to locate and keep an IV in. So now the hospitalist is recommending a PICC line, a long thin IV that goes in the arm and runs to the large vessels near the heart.
24 hours later, mom is having trouble breathing. An xray shows that the liquid nutrition has leaked up into her airway and she has aspirated into her lungs and developed pneumonia. Now she is requiring a mask that provides pressure to help her inhale with enough strength to inflate her lungs and breath effectively. She is still restrained and in an effort to keep her calm, she is getting sedatives IV, but it’s not enough and its not frequent enough so it make her drowsy but she is agitated at the same time and hallucinating now too. The nurses won’t give her more because her MD won’t order more because he is worried that it is going to make her blood pressure drop even though she is so agitated she is not even breathing effectively and her oxygen level is unstable. She sees her husband in the room. Yeah, the one who passed a few years ago.
Mom’s regular MD comes by for a visit, after all, he has been her MD for 30 years. He asks daughter how all of this happened when he just sent her out for an xray. Daughter is furious. “Because of you, she had cancer and you didn’t even know it. This is your fault”.
“But I did know”.
“I knew that your mom is 89. I knew that our health care system is not set up to take care of folks at the end of life who are in their declining years. I knew that we have all of these aggressive procedures for younger folks who can tolerate them. I knew that all of this aggressive stuff is just too much for the 89 year old body and would just hasten her death if we went this route. And it looks like I was right. I just never knew that you would think that you, a CPA, would assume that you know more about health care for an 89 year old woman than I do.” (At least that is what I wish he would say, but he won’t. He has too much compassion).