by Robert J. Lanz, LCSW
He had one of those terrible neuromuscular diseases that works its insidious way into your body and kills you slowly over time. Bad genetic luck. These diseases are initially difficult to get a handle on because the symptoms are both subtle and transient, and as with so many other diseases, the diagnosis is a process of elimination. At the onset, the symptoms could be related to any of a number of illnesses, but over time, sometimes years, most of those are eliminated and a diagnosis is confirmed. Most of the time there isn’t a lot that can be done for the patient. Some medications may slow the progress of the symptoms, but nothing ever cures the disease. Confirmation of diagnosis doesn’t even reveal how long it will take for the patient to die or to what degree she will suffer from the symptoms. It’s all just guessing and hoping—guessing and hoping in the face of increasingly difficult symptoms that will make performing simple tasks laborious—tasks such as walking or swallowing or even breathing.
With any luck, the right medications will keep the disease at bay and make it less invasive, stretching the guessing and hoping process out a little longer. Some day there may be a way to make these diagnoses earlier. Certainly, there will be better meds or even a procedure to tweak some errant gene. But not yet.
Until recently, medical science was pretty clueless about where these life-takers came from, but with the mapping of the human genome, we now know there is a genetic predisposition to many of these disorders. We still aren’t clear as to why and we still aren’t clear as to what to do about them. All we have is hope, and that’s not insignificant. AIDS used to kill everybody, but we sort of changed that. There is a long list of really bad diseases and conditions, and if you find yourself on that list, your life will take a hard left turn even if you are lucky enough to live through the disease or condition. You may even be lucky enough to be able to decide when you are going to die without letting some otherwise well-meaning system torture you with false hope and promises. That’s what this story is about. False hope and promises.
I’ve had the opportunity and misfortune to speak to hundreds of people who would just as soon be dead. Some of them were really sick and already near death and others knew that they soon would be. Some were old and alone and couldn’t see the sense of going on knowing they were just going to get sicker and older and lonelier. They said things like, “I’m just taking up space” or “I’m just wasting food.”
Sometimes they asked me outright, “What’s the point? I’m just going to die soon anyway, why should I continue to suffer?” When I asked if they felt suicidal (as I must and should do in these cases), they denied that they were, almost without exception. When I asked them if it would be okay if someone else took their life, many of them thought it would be. Most folks look forward to having a good life. Not these folks. They looked forward to having a good death.
The family, if the patient had one, rarely had any awareness of the patient’s death wish. The patients don’t want their loved ones to feel worried or sad, so the worried and sad stuff doesn’t get discussed openly. Families generally don’t do well with these discussions, so there exists a collusion of silence. The sick person suffers in silence so the healthy ones don’t have to. As we say in the critical care business, “no one willingly enters into the grieving process.”
But sometimes, someone like a social worker helps the family to realize that acknowledgement and acceptance are the best course, the most humane course. Then, they can begin to see that it is about what is best for the patient, not for the friends and family left behind. They will get their turn later.
So now, we return to the matter at hand: the patient, newly unconscious, with one of those terrible neuromuscular wasting diseases we couldn’t do much about. We could keep him alive with our high tech interventions. We could hook him up to a breathing machine. We could put a tube into his stomach and “feed” him. In fact, we could put a lot of tubes in a lot of places to help him with all of his bodily functions. We could even give him IV antibiotics when he got the inevitable infections that come from immobility. When he got bed sores we could take him to surgery and clean those up too. We could spend several thousand dollars a day on this prolonged torture but he would never get better. He would never go home without twenty-four hour care. He would probably never wake up, and if he had the bad luck to do so he would realize he was being tortured and that no matter what we did, he was going to die.
Allow me repeat myself. Often, saving your “life” under such these circumstances as these involves trapping and torturing you for what remains of your life. Remember those old and lonely folks I talked about?
The patient’s wife, a third generation local, asked what would happen if we admitted her husband to the hospital. When we got to the point in the discussion about the ventilator, the breathing machine, I said, “I’ve never had a patient tell me having the tube placed down their trachea was anything but frightening and painful. Everybody hates it. If it was my mother or my wife or even me, and I knew at the end of a year of that torture, the result would be going home and having some kind of life, I’d do it. But if at the end of the year, it was only death, then, what’s the point?”
When you tell people things like this, they sometimes get angry. Sometimes they go into denial. But once in a while, they get it. I like it when they get it because then it becomes about the patient, not the rest of the loved ones who will have to bear the burden of grief. The decisions are then based on pain management and palliative care. There is no way around the pain of death, only through it and the longer you wait, the harder it is. Denial is the very expensive interest you pay for not staying current with life’s payment schedule.
Mrs. J got it. She didn’t like getting it and she cried openly. She hated facing the pain, but she got it.
We admitted her husband to the hospital and over the next few days he slowly faded away, dying peacefully in his sleep. No trap or torture involved, no false hope or promises. Just the end.