I believe most everyone thinks they know why there’s such a thing as advanced directives, but I’m not sure if they truly understand the significance. I’m uncertain if they can comprehend why as nurses and physicians we keep asking the question, “do you have advanced directives or a living will?” I’m sure our line of questioning is annoying at times, and I can also understand it’s probably unwelcome. After all, who wants to think about what should be done in the instance of the unthinkable?
I have spent many years in the field of nursing, and in that time I have had the pleasure to care for a vast array of patient populations and diagnoses, but there is one type of patient that I hate to care for. No, it’s not the alcoholic in Delirium Tremens or even the frequent flyer, narcotic abuser. While there are many types of patients that are difficult to care for there is one that especially breaks my heart, and that is the living patient who was ready to die. I’m not talking about suicide either. I’m speaking about chronically ill people who are ready for nature to takes its course, but instead are forced to remain here on earth because they forgot to put their wishes into writing, never let anyone know their wishes, or God forbid, distraught family completely disregards their desires to not prolong the inevitable.
I’ve seen it too many times, and even recently I’ve seen the torment. A body grotesquely swollen, eyes barely able to remain closed due to the protrusion of their orbital area. A once lovely, regal woman will resemble an alien form of herself. Toes and fingertips purple from diminished blood flow, the bluish color of her digits only rivaled by all the bruising from multiple, repeated pokes and prods by the medical team. Tubes, lines, and wires protruding from every orifice imaginable, and grimaces of pain, despite all the sedatives and narcotics, being the only sign that anyone is even home in there.
The scene I describe is a common one; it’s critical care. And overall it’s a great thing. It’s a great thing because we’re saving lives, and sometimes you must go through a lot of ugly trauma to find your way out to the other side. But other times it’s beyond just the usual unpleasantness we have become accustomed to. It becomes tragic. A travesty of sorts.
When a 95 year old man with several, chronic and life-threatening conditions ends up in the hospital with a critical admission related to his progressing disease process it’s always a devastating event, both to family and the medical team. But if this same gentleman has expressed desires to not prolong his life in the event that death is imminent, and his wishes are neglected, it’s a shame. It’s a disgrace to the strong, honorable life he has lived thus far when you take away his dignity and choice to pass from this life on his own terms.
As the healthcare team we fight to prolong life by all means available to us. That’s what we do. It’s our job, but it’s also our job to fulfill a patient’s wishes. And when a patient cannot speak for themselves due to their condition then that lofty, yet difficult decision falls on the shoulders of emotionally stressed and physically exhausted families. It’s honestly hard to know what to do for someone’s health care choices in the midst of so much chaos. Sadly, sometimes wrong decisions are made by everyone, and you’re left with grandpa hooked up to life support when all he wanted to do was go ahead and join grandma in heaven.
It’s a sensitive subject, and I completely understand that it’s not one many wish to have a discussion about, but it’s necessary. It’s absolutely necessary. When you have stood at the bedside and seen the futile, honestly ugly efforts to keep a shell of a body going, you would understand.
If it goes on far enough grandpa eventually dies, but not before spending his final days with a tube down his throat and another up his rectum. Then the question is what it should have been all along? Is this what he really wanted?!
In the end nurses are patient advocates, and in the fulfillment of our duty to do the very best for our patients we will encourage everyone to make educated, compassionate choices. We won’t tell you what to do, but we will offer every available avenue, and hopefully prior to having to make the tough, last minute decisions, we will emphasize the importance of making a health care plan beforehand.
That’s why we do it. That’s why we always ask about advanced directives.
We want to save future pain, heartache, and the undue suffering for a human being who only wished to let go. It’s not easy to think about what should be done in the case of physical decline, but the uncomfortable act of obtaining advanced directives is far easier than standing at the bedside and being witness to an agonizing continuation of interventions that were never wanted or deserved. Trust me.
If you have experienced a family member in this situation then I am sorry, and my heart truly breaks for you. My honest statements of care in these circumstances sound very brutal, but they are only spoken with such raw truthfulness to hopefully save you from having to experience this situation firsthand.
We don’t ask to be annoying, and certainly not to make our jobs easier. Although it does. No, we ask for the patient. We ask for you. We ask now so as to prevent pain later.
So, I guess my final question is, do you have advanced directives or a living will?
debbie ryan says
This is so true unfortunately I’ve had to be on both sides of the coin and for me it was my daughter who was very young but I knew what she wanted ,it wasn’t what I wanted
brieann.rn@gmail.com says
I’m so sorry. That must have been so hard. Thank you for commenting.