Before You Go

When I do nursey stuff, I work in a ventilator unit. I say "when" because I used to do it full time. Now I do it part time and every time I work, I remember why I can't work there full time. When the house is full, I am responsible for up to 13 patients. On any given day, half of those patients are in a persistent, vegetative state, one fourth are "awake" and one fourth have an actual hope of going home. Of those folks who are "not awake" some are DNR/DNH (do not recussitate/do not hospitalize) and those who are not, should be. DNR means that if I find you unresponsive, I will not initiate any life saving measures such as CPR and I will not send you to the hospital. Do not hospitalize means that if you have something wrong with you like lethally abnormal electrolytes, we will try to manage the situation in-house, but we won't send you to the hospital. It is one of the steps the road to hospice or comfort care.

This weekend, I cared for a woman who was actively trying to die. It is a privilege to care for people in this state. Sometimes you're the last touch they feel, the last voice they hear. If you are the last bridge between this world and the next, you always hope you made the "here" better for them. This woman was in agonizing pain when the morphine wore off. It hurt when I wiped her mouth or repositioned her hand. So my job for the day was to make sure the morphine didn't wear off.

By now, we all know that hearing is one of the last senses to leave when someone is dying. In my practice, I recommend the patient be surrounded by family talking about the positive things that are happening. If the TV is the patient's only company, I make sure it's tuned to music. What a patient should not be hearing is "I don't want to send my mom to the hospital for a blood transfusion, I already told that stupid doctor that!" What we have here is an ambivalent son. He doesn't want his mom to suffer, but he doesn't want to let her go.

At this point, I suggest we step into the nursing office. I explain that the Responsible Party (the person who has legal authority to make health care decisions on a patient's behalf) canceled the "Do Not Hospitalize" order on Thursday and with blood work as abnormal as this patient has, I have to follow the orders of the on-call doc unless the on-call speaks to the Responsible Party directly.

(It should be noted the the on-call doc has NEVER seen this patient and practices medicine in such a manner as to keep the patient safe and not get sued. I leave it as an exercise to the reader to decide the order in which these occur.)

At this point, the son is actively trying not to wring my neck. He is frustrated because he knows he argued his step-dad into canceling the DNH order earlier in the week. Step-dad knows the score and understands that his beloved is not going to recover and is suffering. Son is not ready to let go of his mother. Who is? I tell the son that I will not send his mom to the hospital if he will help me get the step-dad in touch with the on-call. It's the only way. Son gets on the cell phone - it goes to voice mail. Step-dad is on his way home, somewhere between Philadelphia and the Poconos.

Finally we are able to get the step-dad connected with the on-call and a new DNH order is obtained. End of shift, I go home.

But I'm still thinking about work. What happened here is mostly avoidable. Mom is probably in this situation because she did not have a living will. Without the living will, this family had to go to court to decide that the spouse and not the son would would make decisions on behalf of this lady. This case is not isolated. Many of my patients are not married to their companions. But without any document indicating who should make decisions or who should execute the decisions you have already made, you will be kept "alive" until your heart gives out (not a good death), some other party will choose for you, or your companion will have to go to court to "prove" that you are a family.

You don't have to be married and you don't need a lawyer. For a few dollars, organizations like Five Wishes provide living wills in simple language. All you have to to is fill it out, get it notarized, then give it to your doctor or make sure your companion has it. The red tape in a nursing home is ten-fold. Your family has enough to worry about with you in a coma. Before you go, do them a favor and execute a living will.

Grids

When you're in nursing school, part of your clinical training is to fill out all the paperwork that is required in the care and keeping of a patient under your. There are admission forms, daily flow sheets, physicians' orders, incident reports, medication forms, transfer forms, consultation forms, discharge forms...I'm sure other nurses could list more forms. These are just the ones that I use almost daily. The one I find most disturbing are what we affectionately call “The Skin Sheet”.

When you are admitted to our facility, we strip you naked and inspect your skin from head to toe. Any bruises, moles, scars or potential for skin injury is documented on a form. But if you have an injury that moves into the realm of “wound” (think bedsores), we fill out the Skin Sheet. The Skin Sheet is a grid on which we record the date we found the wound, stage of the wound, the size of the wound, if it's draining, if it is tunneling, if it smells, and if it hurts. It's meant to be an objective tool that tells us how to treat the wound and allows us to monitor the progression of the wound. What the Skin Sheet doesn't explain is how the wound got there, what kind of neglect this patient experienced before admission to our facility, or how anyone who claims they are in health care could allow this to happen?

I often disagree with much of what goes on where I work but there are some things I think we do particularly well and that is prevent and heal wounds. If a patient comes in with a clean bottom, it stays that way while they are with us. If they come in with a wound, we do everything we can to improve it or heal it. But when a patient comes into the facility with wounds that are so large and so invasive, it becomes clear that somewhere down the line, the patient was the victim of neglect.

The Skin Sheet I fill out every week on this patient only tells me if these wounds are getting bigger or smaller. They don't explain why this person sat in his own filth for so long that his skin started dissolving to the bone. The boxes on the Skin Sheet only allow me to what kind of drainage is coming out of the wound. There is nowhere on the grid where I can document how fast the room was spinning the first time I stripped off the old, soiled dressing and saw what was there. I can document on the Skin Sheet if I think the wound causes pain for the patient. But there is nowhere on the Skin Sheet where I can document my rage that whoever was responsible for what happened to this man (who cannot speak or move of his own volition). There is no place on the grid for me to document how useless my emotional reaction is to this man. Every time I initial the sheet, I bear witness to what I believe is neglect that has caused harm.