by Robert Lanz, LCSW
In case you don’t have a TV or a newspaper or internet connection, a young woman with terminal cancer named Brittany Maynard has been in the news for the last few weeks. She was well aware of her impending death and the painful and debilitating “cure” available to her that perhaps might squeak out a few more days of life. She decided against it.
Those of us who work in hospitals know there are physicians who will buck the system and bend things around in an attempt to help someone with Brittany’s particular end-of-life wishes. But Brittany’s wishes are not the routine. To die her way, Brittany had to move to Oregon, where the medical establishment is more open and more caring, I might add, to people making Brittany’s choice.
Since then, letters to the editors of many large newspapers have been flooded with personal stories of terminally ill people who changed their minds about trying to control their process of dying. I have never read anything by anyone who thought a few weeks of torture before a sure death was a workable idea. If you have been following this blog for a while, you may know that in my first story, Dying Sooner (ninety-five stories ago,) I outlined my personal belief about the dying process and argued that it was incumbent on the social worker to help families formulate a plan for their terminally ill loved ones. That story was based on my own experiences fifteen years ago, and I’m ambivalent about the “progress” we have made with the end-of-life rules in our health care system.
To me, it is like the shingles vaccination was: I didn’t think about it until I got shingles. Fortunately, most people who had chicken pox are now aware of the vaccine. (I will add that having personally suffered the torment of chemotherapy and radiation, accompanied by some serious surgical scraping, I vigorously spread the word about the HPV vaccine too.) Like vaccinations, the Five Wishes are a good prevention for what might happen.
I’ve seen hundreds of people die, and dignity is rarely part of the equation, especially in the ER. Trauma patients are naked in a room full of strangers, each stranger working on a different part of the patient’s body: IV’s in the arms, catheter in the urethra, a finger in the rectum, a tube down the throat, and if you have really bad luck a, tube painfully placed into your chest cavity. With extremely bad luck, the surgical resident will crack open your ribs, spread them wide enough to put his hand into your chest so as to do the pumping movement necessary to squeeze the last remnants of blood from your heart into circulation. I’ve never seen it work successfully, but we try. Dignity? Well, if you’re young, one of the nurses will put a towel over your genitals. Maybe.
When your monitor flat-lines the trauma surgeon declares: “That’s all. I’m calling it. Time out 19:47.” A sheet is placed over the body and everyone exits the room. A police photographer enters, removes the sheet and snaps a few photos. Often, police will look for evidence of a crime on or around the patient. As a final act of ‘no dignity,’ the housekeeping staff enters to clean up your waste. A part of you, the detritus of our futility, is thrown into the hazardous materials bin. When we’re trying to save your life, dignity is not an issue. We in the ER, do hope you led a dignified life and we hope that is how people will remember you — instead of like this. But we did what we had to do. And we did it for you.
Non-trauma deaths (heart attacks, pulmonary embolism, sepsis and the like) are far less gruesome and usually less intrusive into your body. But even then, the necessary violence of CPR is brutal and sometimes breaks ribs. Of course, the patient is unconscious for the procedure. Eighty percent of the time, unconsciousness will be permanent. Time out 21:02. Not a lot of dignity there, either. It’s obviously why ER physicians don’t allow a patient’s family into the treatment room during resuscitation attempts. I have had more luck with patient,s families in that regard, but less with the docs, though I found the docs did soften over time. In one instance, a young man wanted to be with his father while his father died. I brought the young man into the treatment room. At first the docs gave me the stink eye, but in moments the docs forgot him, and furiously concentrated on their work to save the patient. The son held his father’s foot for almost half an hour while we desperately tried to save a life. He later told me that he was an airline pilot, and that his training had been helpful in keeping him calm and focused during this ordeal. For my intervention, he thanked me generously. As the social worker, I knew exactly what the son got out of being with his dad in those last moments of his dad’s life. I wanted be sure the docs knew, too. I suggested to the son he tell them so. He did.
On the other hand, there is “upstairs,” where some patients die after being admitted. There may be more dignity up there, but dying up there is a slow and expensive fade-out rather than the quicker death and medical beating they get in the ER. Upstairs still lacks the dignity of dying peacefully at home, the way most people died, until medical technology came along and extended lives for hours, days, weeks or even months. But upstairs still beats dying in the ER. Most of the people in my family died at home quietly in their own beds. Of course, they had a real advocate fighting for them to have the dignity (me.) That’s how I’d like to leave when I die. The dignity upstairs comes at a very high price. No doubt that price will be a big issue for medical ethics people in the very near future.
In reality, there is about as much dignity at the end of our existence as there is at the beginning. The beginning, of course, is filled with hope and promise. But, each is a bookend to the amazing thing we call life.