I was moved this morning by a piece in the New York Times written by Bill Keller. He described the situation surrounding the last days of his terminally ill father-in-law. Those days were spent in Britain, with a hospice system that honored the wishes of the dying and helped ease the pain of those who survived.
This is somewhat similar to the situation surrounding my father’s death here in Florida. Dad made it very clear to me, and to my siblings close enough to hear, what he did, and did not want. I had to all but twist his arm to go to the hospital when he did… and I’m quite sure that I was only successful because he was already mentally and emotionally spent from his rather minor ailment, that when neglected, turned into a serious physical condition.
He wanted to use the hospital we used for Mom’s cancer, which surprised me, as they had failed to find the cure, so after helping him shower and clean up, and promising that we’d protect him from the doctors, we took a ride to the emergency room. Being Dad, he drove.
When Dad was admitted they asked not only for his insurance information, but if he had a Living Will and/or a health care surrogate. We provided them copies of Dad’s wishes, and I was identified as his surrogate.
The first day was spent with tests and meeting specialists. My sister insisted that she take the night shift with Dad so that I could take the days and interact with the growing army of doctors that we were accumulating. I agreed, knowing that when the docs did come around, I’d have about 3.6 minutes to hear their spiel, process it for understanding, ask the unanswered questions that came up since the day before, then multiply that by each physician on the case.
Although advertised as a “Stroke Center”, hospital staff did not recognize his ongoing stroke the night it happened, that first night he stayed at the hospital and I left for sleep so to be sharp the next day, the night my sister (not a health care person) told the nurse that something had changed and was very wrong, the night that I let my father down by not being there.
Like too many medical people, — and for whatever reason, I’ve heard them all — the nurse ignored my sister’s comments and, with what my sister perceived as a bit of an attitude, sent aides in to clean up my suddenly unresponsive father, who had uncharacteristically soiled the bed.
By the time I arrived, he was in a coma, and did not move his left side or open his eyes again.
Forty-eight hours of life support later, we made the decision to honor Dad’s wishes, met with the attending physician, and the staff quietly disconnected all the equipment and moved him into a private ‘hospice’ room. It was a version of hospice, an interpretation of hospice, maybe an American one, maybe the ideological one of the religious organization that owned this particular hospital. Whichever, it was one that I personally found short on compassion, both for the patient and for the family. I’m grateful that it was only 6 hours, and not 6 days, or 6 weeks or months. Dad hated doctors and hospitals, not being in charge and maybe me for making him go through all of that.
I have spent years working in and around ICU’s, and have seen the spectrum of death from premature babies to centenarians. I’ve learned that death is a natural part of life, especially when it comes towards the end of our natural lifespan.
I’ve seen families both come together, and come apart, over the questions of what to do, of what is “best”? The acute care environment does much to wear us down, and does little to ease our pain. It is absolutely not the time or place to be making important decisions concerning our parents.
None of us should want to put our families through that.
So everyone should have a Living Will to spell out how we want to be treated, when the time comes, to spare our families from that way-too-tough decision. Contrary to what some conspiracy theorists out there might think, a Living Will is not an automatic way to “move up on the organ donor list”.
What it can be is a set of clear instructions, your detailed wishes, that is to be used “when the time comes” to both save your loved ones from an incredibly difficult decision, and ensure that whatever is done is done according to what you prefer.
While not required, I recommend that when working on a Living Will, find a friend, or a friend of a friend, with ICU experience, or ask to talk to someone who works in an intensive care environment. If possible, take the person who you want to be your health care surrogate, the one who can legally speak for you when you cannot speak for yourself. I believe that this is important because much of what we do when saving lives has the same label, the same name, the same connotation whether it’s used short-term or long-term. Someone with direct experience can both answer your questions and ask those questions that you don’t know to ask. In this area in particular, the devil is in the details. I’ve seen fights erupt in waiting rooms over interpretations of instructions that were too vague.
One question I asked my father when preparing his Living Will had to do with life support measures. His original request was for “no extraordinary measures” to be taken. After I explained that what he may consider ‘extraordinary’ was actually commonplace in modern emergency rooms, we got down to nuts and bolts.
“No CPR or life support” meant “No life support if I have no chance of waking up”.
Gee, there’s almost always a ‘chance’. We needed more detail. If he were to choke on his grits at breakfast, was CPR okay? Yes. If endo-tracheal intubation could remove what he was choking on, was that okay? Yes. If he had a major heart attack or stroke, then initial life support was okay, but if he lingered without meaningful chance of waking or resuming independent activity, he wanted it stopped. He also said he didn’t want tube feedings to keep him alive. And he didn’t want to be shocked more than once with a defibrillator. I blame TV for that one. Yes, I’ve seen many hearts start beating again after the third or fourth course of defibrillation.
But it’s his choice, for his body. That’s what we honored, hard as it was. I believe that everyone has that right and deserves that respect.
And hard as it was, it was a walk in the park compared to what we five siblings would have had to go through if not for Dad’s written instructions to us and the hospital care team, if not for the foresight of his Living Will.
Do your family, and yourself, a truly priceless favor. Get a Living Will.