by Robert J. Lanz, LCSW
A ninety-eight year old patient with emphysema, congestive heart failure and a No Code order goes quickly, dying silently as he comes through the door, the paramedics, doctors, nurses, standing by the bedside watching the last easy breaths as the monitor goes flatline. Although it is never spoken, probably everybody is glad to see him go, finally some relief for the patient and the family from the process of dying that has been lingering for years. The guy he was, the one his family loved, has already been dead for some time and now his body finally caught up. The sadness of loss is tempered by the knowledge that finally, their man is whole again. A twenty-six year old however, gets everything even if he arrives with no heartbeat and he’s already turned blue. If he’s still warm, the staff will attack him with every tool available for the situation and engage every chemical and machine designed to bring him back to life.
With the twenty-six year old healthy looking guy on the bed in front of me currently trying to die, despite everything we were doing, it was a major battle and it didn’t look good. We didn’t know much about the patient yet except that he came from a convalescent hospital, which was strange for a young, normal looking guy, so we knew he probably had a head injury in the past with some brain damage. Another young guy with an old broken brain and we had no idea whatsoever as to what his “normal” functioning or as we say in the medical business “baseline” status was. Maybe he was normally almost dead and we wouldn’t be getting back much no matter what we did for him, no matter how many high tech maneuvers we used, no matter how great our chemical calculations and comebacks were. In all actuality, we had no idea what we were saving. All we knew was that he looked young and healthy but he lived with a bunch of old unhealthy folks in a nursing facility.
If you look young and healthy and come from a skilled nursing facility, the chances are there probably was enough brain left to put back together some semblance of the former self. Most of the time there is enough left to do simple tasks and unfortunately, enough to remember what it must be like to be normal and realize normal is a place you will never be again despite having your body seem that way. In a lot of brain injuries, basic aspects of the personality remain intact to some degree and physical features may be unchanged. With brain damage, you never know what the outcome will be and the process of sorting it out becomes a nightmare for friends and family, as the patient frequently seems like the same person he was before the injury because he looks the same. Unfortunately, with brain damage, the victim often lacks the endearing qualities of personality that made him lovable in the first place, like having a sense of humor, being polite, kind, giving and loving. These are often traded for being demanding, rude, confused, forgetful and hostile.
The juxtaposition of having the person seem the same yet act as if he had a personality transplant gone awry brings unthinkable challenges to the loved ones. After a certain amount of time at home the family tires of the tribulations and has the patient go to a skilled nursing facility where there is an adequate level of care and time for the family to recoup their energy. The family needs a break from reality and placement in a nursing facility is a difficult but necessary choice most of the time. Of course, at first, they continue trying to have the patient make frequent home visits but they too, become too stressful and the family shifts its visiting pattern to the nursing facility where they bring lunch over on Sunday afternoons. Pretty soon guilt starts up and the family has to deal with that and they try harder to make it work out but it almost never does.
Because of all the pains and problems, the patient often knows what is happening and has just enough brain function left to see a situation which can only get worse. In that basic level of functioning that we all have in common, he wants the same things he always wanted- to work, to have a good looking girlfriend, to go play cards with his buddies, go for a picnic on Sunday afternoon. He also knows he can’t remember how to play cards or how to drive and couldn’t get a license anyway.
Even the people who used to love him don’t visit much except for his parents and he probably won’t meet the girl of his dreams in a nursing home unless the part of his brain having to do with age related issues was destroyed. That doesn’t happen. What does happen is the patient sits around the nursing home mulling all this over with whatever brain skills he has left. He smells the urine, hears the constant groaning and crying, sees the deteriorating bodies of aging oldsters who refuse to die but cannot feed themselves and have to wear diapers. He sees them alone staring off into space and realizes this is his fate in life too.
There may be a part of a ninety year old that can accept such a fate after a full life. The movie is over, the reruns are boring, it’s time to go and there is a gentle resolution to death. But when you’re only twenty-six and see this happening and can appreciate what a totally terrible situation you are in, there is a natural inclination to walk out on the movie, it only gets worse. The young man decided to do that tonight. He was found hanging from the triangular chrome device he used to lift himself out of bed everyday. He was blue. He was not breathing. His heart was not beating.
When the ambulance arrived at the nursing home, several nurses who were supposed to know CPR and basic life support interventions were standing around watching him not do any of the vital life functions he had purposely ended. The paramedics made a valiant effort with chest compressions and medications and managed to get some cardiac activity. When he arrived in the ER we managed to high tech him into enough of a situation to be kept alive by machines even though we knew it was a useless save. His pupils were non-reactive. He had no reflexes. He was legally alive, but he sort of ended up where he wanted to be, a painless sleep, and thanks again to expensive technology, we could probably keep him there for a few days before he died.
The extra days would give his family some time to get used to the idea that the person they had worked so hard to raise, and had worked even harder to make well after some lowlife hit him over the head with a baseball bat was in a coma again. They knew what would have to be done if he lived. They had already done it once but now that torturous trip was finally over. All the time and all the love and not even all our expensive technology was going to save this one.
The hard part for me was to watch the family pray for him to survive, to have just one more opportunity to go through it all again, to have at least one more Sunday lunch on the grass. I realized that almost nobody gets loved that much in life and maybe it’s a good thing, because the only time it’s needed is when there is no hope for anything else, not even expensive machines in million dollar rooms.
I guess we all hope somebody in our lives loves us that much. And we all hope we never have to find out. Not because of what it does for us to be that loved, but for what it does to those who have the capacity to love us so much and endure such incredible pain.
I was having a late dinner about midnight and was joined by a friend of mine. She didn’t buy any food, just sat down next to me put her head on the table and started to cry.
“Half my patients have perfect brains in broken bodies and the other half have perfect bodies and broken brains.”
Pretty hard on me to see a friend cry. Especially when she was about my age and chief of neurosurgery. Neurosurgeons are some of the toughest guys on the block.
Since my retirement from the ER I’ve taken up with Giving Music, A Music Charity. We are a non-profit of professional musicians that plays mostly at skilled nursing facilities. If there is a group of folks more neglected than they are, which I doubt, we would play for them too. Even homeless drug addicts on parole have advocates. In any case, I make it my practice to visit with the youngest patients in the room after we play. I know how they feel and I want them to know I understand how they feel. Just a few extra minutes after the gig always goes well. Sometimes I take a picture of those patients with the band and bring them a print next time we play.
I’m forever jealous that the guys in the band are such great musicians and give so much of their time. Lately I’ve been hearing from some of them that they are jealous of me because I get to schmooze with the audience. Hmmm. Ever the social worker, I guess…..