Don't Love Me Too Much

Advanced directives are a basic form that people fill out sometimes about what they would want in case they are not able to make their own medical decisions. Usually, everyone says the same thing: "I don't want to be a vegetable". Well, I am here to say no one want to be a vegetable, but that rarely helps families and medical personnel guide ones care. Everybody is different when it comes to his/her personal limit when it comes to invasive medical treatment. The goals of someone who is 50 verses 93 years old are immeasurably different. There are ways to quantify and specify the amount of medical care a person wants, and what health impairments are acceptable in defining a quality life. Unfortunately, many of these tools have come under scrutiny by the right-wing media by declaring that this is an open invitation to assisted-suicide when a persons health problems exceed the parameters that they have specified in their advanced directive. The VA Hospital has a detailed AD form that is an excellent tool, but has caused an uproar among conservative groups, and has been officially suspended by the Obama administration until flames have died down. This document spurred a backlash against progressive medical groups and the Obama administration, despite the fact that it was created and brought into use during the time Bush was President. See the example shown, and do your own exercise following the link, if you like.

http://stevebuyer.house.gov/UploadedFiles/Your_Life_Your_Choices.pdf

The point of all of this is to discuss some end of life issues that I have observed during my short career in the ICU. Please ignore any blatant political commentary that you might unearth, as my intentions are not about right and wrong, they are just feelings that have bubbled forth. Please feel free to share your own observations/feelings as appropriate.

Some themes:
The right to choose or decline medical care
The sticky issue of family in interpreting what is appropriate for their loved one
The view of medical care during end of life as a medical professional
My own Advanced Directive - which may or may not be ignored - titled: Don't Love Me Too Much

The right to plow ahead with every medical intervention possible is reoccurring theme in my work environment. This is done by both patients and families during their time of crisis. We really give them everything we have to give, but ultimately, despite our best efforts, the fight is between the patient and God. When a patient is unresponsive, or unable to participate in medical decisions, we assume that everything must be done, unless the family otherwise declines. This could be due to a terminal illness, a very poor prognosis, or the statistical indicators that this person will never return to a quality of life that is acceptable for them. These lines are very blurry, and in fact, quite subjective. As we learned from looking at the VA Life Choices pamphlet, where one person would be all right with being disabled, completely dependent, and having to spend their remaining days in a hospital; another person may find this unbearable and would want us to, in effect, pull the plug. Many times we do not know which way the chips may fall, and we can only speculate about outcomes. I have seen miracles my friends. People who should have died, being rolled out in a wheelchair for the cabulance home. That said, they seem (to me)to be a shell of what they once were. Not only do they require years of rehab, possible penile reconstructive surgery due to edema, God knows how much therapy, and the financial and emotional turmoil of the family; they will undoubtedly come back to me as a patient with some glaring infection, and we will start the process over again. I do not judge, this is what was meant to be, as it has already happened.

Some patients are scared and want everything done, even though we tell them that they will never leave the ICU. They succumb to an infection, and when they cannot communicate, a family member will assume responsibility and agree to let them go. (This has caused an ethical debate, as we knew full well what the patient wanted, and this decision would be unacceptable to them. Fortunately, we can always argue medical futility, and understand that no one wants to die, but ultimately we know everyone does.)

Some patients are stoic, and greet death as an inevitable occurrence, and these people go with grace, and the morphine drip is hung, and they are able to peacefully return to their origin. This is a rare occurrence. I had an experience where we knew this guy was going to die, but we could give him an extra week if we continues aggressive care. We could give him seven more days of torture. The pain was unbearable for him. The daily lab draws, being forced to turn every two hours, these fucking 20 year old doctors making decisions and changing their minds every day. "Screw you" the patient thinks, "I would rather die". So what do we do? Order a God-damned psych consult, cause this guy must be suicidal. Seriously, this was done. This is the dumbest crap I have ever heard. We are hypocrites for accepting a families wishes to withdraw care when someone is unable to say so, but when a patient says that it is time to stop, we gawk and feel ethically compelled to decline. This has happened to me, and I coached the family and patient on what to say in order for the doctors to allow us to stop treatment. This I felt, was my moral obligation. The patient and family were accepting, were able to say goodbyes, and the patient died the next day. I was glad for him.

Some families are not ready to let go. This is usually the case, and it is very difficult for all of us to come to terms with the mortality of both the patient, and our medical efforts. I think that it is hard for these young blossoming residents to accept defeat. They will try everything, and even try some more, though the statistical evidence is staggering that the patient will not make it. This drive from the residents, fuels the family belief that all will be well, until the inevitable moment where defeat is called and the families are blown away that all of their hope was for nothing, and their loved one should be let go. Sometimes this still does not sink in and we are forced to keep these poor bastards alive to the point of morbid horror, when either they code and have a traumatic end, or we finally convince the family that it is over, and the patient dies within a minute of removing life support.

Sometimes we are able to have a therapeutic and peaceful death, where families and medical personnel work together. This is the most gratifying part of my job.

The point of these scenarios is to demonstrate that rarely Advanced Directives are actually followed, and the fact that they are so vague with the resignation of "I don't want to be a vegetable", they are worthless without thorough thought and disclosure. The ultra-conservatives that are against in-depth death discussions want us to believe that every medical intervention should be made possible for all patients. This is a careless waste of resources, and it does not help families make educated decisions about how to manage the medical care of their loved one. Many of the interventions and ways to prolong life are not what doctors and nurses would have done for themselves. An example of this is the mundane flu shot. Doctors and nurses recommend this all the time. I myself gave over 50 flu shots in one day last year. If however, you do an informal poll like I did last week, you would find that the only nurses who get the flu shot are in management, or are kiss asses. The same goes for the doctors. It is not that we don't think the flu shot is beneficial, or that it can be lifesaving for certain individuals, we all have a deathly fear of rare complications. It is stupid, we all know, but if anyone is going to get some crazy Guillain-Barre, it will be us. We see enough weird shit, that as a superstitious measure, we protect ourselves from a 1:1,000,000 chance of drawing the short straw. The same goes for all of the other things we do. I am scared of needles. I am scared of doctors. I am scared to get my blood pressure taken. I urge all politicians to poll medical staff about how they rate quality of care before shoving it down the throat of average citizens simply because they are afraid to face their own mortality and that of the people they love. Bam.

This is a long, drawn out morbid topic I know. I will edit and condense for the book version, I assure you.

In conclusion, I will tell you my own personal advanced directive. Please do not take this as medical advice, as I am full of it, and frequently, a hoppy fermented beverage. I will also say, as another older nurse has said to me a few times before:"just wait till you get to be 83, you will feel a lot different than when you are 33" Well, thanks for the wisdom, this is my disclaimer, and I will reevaluate my goals of care through the years, and I urge you all to do the same.

I will first say that all of us nurses and doctors are scared of many things that we hope to Christ we don't get. These will act as indicators to guide my care, if I have these, I am pissed. The first is liver failure. The worst, bloody, metamorphosis a person can have. The rest in no particular order: MS, cystic fibrosis, oral cancer, severe heart failure, pancreatic cancer, severe dementia, crazy bowel problems, and renal failure. Oh, and severe COPD, leukemia, lymphoma, Tourettes...the list keeps coming. OK poor exercise. Nobody wants to get sick. Exercise more, smoke less.

If I have more that 3 organ systems failing, with less than a 30% chance of leaving the HOSPITAL, not just the ICU, please let me enjoy my time with my family and friends. Sneak me in a margarita and put it in my feeding tube. Give me lots of drugs, and play some Bonnie Raitt while I listen to the laughter of those who know me best. Let me keep my dignity, my joy for life, and don't make me haunt you. To sum up: Don't Love Me Too Much. (I promise to do the same for you)