Aimee Copeland & The Case for Approaching Taboo Medical Ethics Topics

This past week the case of Aimee Copeland has appeared in the media.  Aimee is a 24 year old graduate student in the University of West Georgia's psychology department.  On May 1st,  she was out with friends kayaking down a river in Carroll County, GA, and had the opportunity to play on a homemade zip line.  Accounts vary, but it seems that the zip line might have snapped and that Aimee fell onto rocks on or near the river.  She was heavily bruised, and was taken to the hospital.  She got staples in her legs and some meds, and was sent home.  Over the next days she was in and out of the hospital and doctors offices.  It was on May 4th, according to the psychology student site of her department, that she was finally diagnosed with necrotizing fasciitis.  Her left leg was amputated, she went into cardiac arrest, and she was flown to the burn center at the Doctor's Hospital in Augusta, GA.  For more info, see this article.

Aimee is on full life support.  The blood vessels in her finger and feet have died and they are scheduled for amputation once the doctors determine her stable enough to handle the surgery.  Her palms appear to also be dead, but there is some talk that if the surgery can happen soon enough, that there is a chance of them coming back to life and surviving.

My concern is about the ethics of keeping someone alive when their future quality of life is inevitably low.

This situation raised questions for me that I was not seeing addressed in her father's posts, on the student website page with her updates, and in the media.  Therefore, I turned to one of my MD friends, the most compassionate medical doctor that I know, who I will refer to as Dr. X, to hear an insider's view on the situation.  What he shared with me was illuminating enough to cause me to start this website, and to argue the case that, in his words, "just because we can, doesn't mean we should."

I hope this site can be used as a forum to help understand these medical ethic issues more thoroughly, and to help each of us to understand how significant this is in our lives, and in the lives of others.  I see much for myself to learn in this inquiry, and in advance thank all of you who help to educate and inform me on the topic.

I send heart-felt wishes for everything good to Aimee and her family, and apologize in advance if this discussion causes them any pain.  This discussion is really not about Aimee.  Aimee's situation was simply the catalyst for a really serious discussion that needs to take place.

Who Will Decide Your Fate? : Medical Interventions

So, I contact Dr. X, and ask him about what is happening behind the scenes in Aimee's situation.  What is not being discussed in the media?

The first issue Dr X approaches is that of making decisions about medical interventions.  He shares with me that the question that the doctors ask whenever they make any medical intervention is the "big question":
 "what does the patient want?"

If the patient is able to answer that question directly, when they are conscious and clear in mind, then the doctor listens to what they say and does as they request.  The issue gets complicated when the patient cannot state their choice, and when the doctor has no written statement by them, such as a living will or a DNR (do not resuscitate).  (Take note I am providing wikipedia links to these terms so that you can read about them in more detail)

Then the question is "what would the patient have wanted?"  That question inherently scares me, as I don't know many people that would know what I would have wanted.  Frankly, I haven't ever thought much about it myself.  To answer this question the doctor turns to the next of kin.  The next of kin is usually a spouse.  If the person is not married, as is the case with Aimee, then the next of kin becomes the living parents, if there are any.  

So behind the media cameras, back in a private office in the hospital, there is a doctor who is discussing the situation with Aimee's next of kin, her father Andy.  And, Andy is the one who is attempting to most accurately answer the question "what would Aimee have wanted?"  Note: the question is NOT "what would you like for Aimee?"

This question arises at every step of intervention.  Whatever is needed, from antibiotics to breathing support, from blood to amputations, the doctors do as they are told.  The doctors have to present a full list of option, and one of the options that has to be verbalized is that of doing nothing.  Doctors have to give the option of doing nothing.  

The doctor has ethical and legal parameters as to their involvement in decision making and action.  After giving intervention options, at least in the more significant decisions of the hundreds of them that happen in such situations, they have to clearly document the choices they gave and the decision that the next of kin came to.  These records, if documented clearly and timely, are considered golden in the eyes of courts.  They are proof enough that the doctor offered such options.  Additionally, those larger decisions need to be signed off on by the next of kin.  I had no idea how well documented the hospital room is.

With that information as background, the question then becomes, how well can one's next of kin reflect what you would have wanted?  Or, in this case, how well does Andy reflect Aimee's wishes?  That is impossible to say.  However, Dr X said that on this topic that Aimee, as an unmarried adult, is in one of the categories of patients who likely are not understood as well by their next of kin.  When discussing how she might have preferred to not live given the situation, and of course this is conjecture not fact, he said "that's what happens when you're not married."  He suggested that unmarried adults make their best friends as next of kin, rather than the default of their parents, as those who you choose to have in your life and spend your days with often know you world-view and values better than your parents.

From the articles and photos on the web, Aimee might not be religiously aligned with her father.  Aimee might, and again I emphasize this is conjecture for the sake of examining the issue only, not have faith in the Christian ways of her parents, but rather a more holistic spiritual approach.  Along with this holistic approach to spirituality might be the ideas of reincarnation, or something like that.  To quote one such position: "there is no birth, there is no death, there is only the process of formation and transformation."  Another one I found online read something like for a spiritual person who passed: "Never born, never died, just visited this planet Earth between... this date and that date."  I have no idea if she would subscribe to such thoughts.  But, if she did, who would be the best person to answer the question "what would she have wanted us to do in this situation?"

I am married, and I trust my spouse to know what I would want.  In the situation that Aimee is in today, I would want to go.  

I asked my living parents what they would want, if I were became next of kin for them.  They both said that in this case, they would want to go.  My mother said, "I wouldn't want to be dependent upon anyone."

My spouse also would want to go.  In fact, everyone that I asked this question to said they would want to go.  Everyone.

When my body shuts down and tries to take exit, when instrumental parts of my body would need to be amputated, I would not want machines keeping me alive.  I am not so attached to my life, I am much more attached to my quality of life.  I would not want to endure the suffering.  I would not want to wake up in a hospital bed to see 1/3 of my body missing.  I would not want that trauma.  No thanks- it is not for me.

Interesting Case Studies On Parent's Power Over Their Children

Dr X shares this case study with me that his medical school ethics class reviewed.  It left a deep impression on him, and now it has done the same with me.

Some parents of mentally impaired children become worried that they won't be able to pickup and bathe their child once he/she becomes an adult.  This becomes a serious issue for the parents.  They know they are aging, and they know that even with a severely retarded mind, that the body of their child will grow to full adult size.

In some of these more severe cases the parents legally give their children a certain type of hormone that stunts their physical growth.  Thus, their adult child stays in a body of a 5 year old.  This makes it easy for them to lift them, bathe them, and the like.  They can even continue to cuddle up with them like they are a small child.  On one hand it sounds amazingly practical, yet on another hand this is a very strange situation where a next of kin can so deeply impair or effect the life of a living being.  In whose best interest is this in?  How can we even know?

Do you think it is ethical to stunt a child's growth given that situation?  It feels so wrong to me, but, I get what they are doing.

Dr X compares this to pregnant women.  He finds it strange that pregnant women can smoke, drink alcohol, even do crack, all of which mess up their baby to some extent, without any legal repercussions.  He argues that if you imposed such actions with such repercussions on a living person that you would be thrown in jail.  But to a fetus it is okay.  

He suggests that a mother who inflicts chemical damage to their fetus should be thrown in jail and quarantined, or that their fetus should be aborted.  In his eyes, the chemical abuse of the infant is clearly unethical and abusive.  If the fetus is a person, it should be given all of the rights of a person.  He finds it hypocritical that some people are anti-abortion but would not support the imprisonment and quarantine of mothers who are abusing their fetuses.  If the fetus is human life, it should be protected not just in anti-abortion laws, but it should be protected with all human rights.  And, if it is not yet considered life enough to be protected from the abuse of cigarette smoke and alcohol, then it should not be considered life enough to protect against abortion.  (Strange how abortion seems to creep into so many issues.  Let's not make this an abortion discussion- please.).

Another interesting topic that he raises is that the mother who abuses chemical substances that leaves permanent impairment in their children give birth to a liability for society.  These impaired children frequently spend their lives on the welfare dole.  Why are these mothers not liable to the state for the expenses that their children are putting on our society?  

Dr X raises many other fascinating ethical and financial implications of medicine, and I hope to write more about it as my discussions with him goes on.

Have You Discussed These "Big Questions" With Your Next of Kin

Your next of kin controls may someday have total control of all of your medical decisions.  They could be the one to answer this "big question": "What would the patient have wanted us to do in this situation?"

Do you even know who your next of kin is?  Do they understand you well enough to represent you?  Have you shared with them what you would want?  Do they know what would you done if you were in Aimee's situation?

And, who are you next of kin for?  A spouse, a parent, a child, or a sibling?  Maybe several people.  Do you know what they would want you to do if they were in Aimee's position today?

Dr X shares with me that incredible guilt comes from having to make decisions as next of kin when one is not prepared and informed.   It is difficult to say "At this point he/she would want us to let her go.  Please stop the interventions."

For me, it is time to open up these conversations with ALL of my loved ones.

The Power of the Written Document

Did you know that if a man arrives in a hospital and the doctor is made aware that he has a DNR (do not resuscitate) in his wallet or on file, that if his wife says "resuscitate him," that the doctors are legally obligated to ignore the wishes of his wife and follow his written instructions?

I always thought the doctors were foremost obligated to help someone survive.  This is not true, according to Dr X.  Instead, doctors are obligated to do as is best determined to be the wishes of the patient.

If the doctors do not like the decisions of the patients, they cannot go against them, yet they can turn the case over to a doctor who is willing to support those decisions.

If you are unfamiliar with the DNR, living wills, and other advanced healthcare directives, see this wikipedia page on the topic: living wills.  If you don't make decisions now, you might not be able to make them for yourself later.  This is of particular importance to gays and other adults who are not married.   If for the married, it relieves the emotional burdens on your spouse and cuts the possibility for guilt, if you have your wishes predetermined.

The Fear for Aimee

Dr X said that her father's choice to keep her alive at all costs could lead to Aimee committing suicide.  Now I have thought of this before, because I would likely commit suicide myself if I was handed the situation of no hands, one leg, and no feet.  But, he was speaking in a different way.

Aimee has returned to consciousness.  She is soon to realize the losses that she has faced physically.  That is traumatic, which itself could be fatal.  I would give up the will to live at that point.  We have no idea if she will.

But then there could be a point where Aimee returns to making medical decisions.  The torch might pass back to Aimee from her father.  And at that point, Aimee will have to make the decision of whether she stays alive and dependent upon machines, or whether she wants to leave the body.  The doctor would present her the option - he has to.

According to Dr X, doctors can never say that there is no chance of recovery, as that would yield legal consequences.  They cannot be definitive.  They can only speak in words like "strong inclinations" or "strong senses" that ___.  They can state an argument one way or another, but they can never make the decision.

When Andy hears the arguments he hears it through one filter.  When Aimee hears them they will come through another.  Aimee might then be put in a place where she wants to go, wants to stop the interventions.  Andy, being father and not spouse, might have a parental reaction of "no," instead of a non-parental response of "I don't want to see you suffer.  Whatever is in your best interest or wishes is what you should do."

So, Dr X fears, that medical interventions taken too far could lead Aimee to the point of being conscious of being at a dead-end, and having to choose to say goodbye to this world (if her organs can't return to normal functioning).  And, instead of getting this response met with the unattached loving compassion of a spouse, it could be met with the challenge of a parent.  He could challenge her for not believing in Jesus, and not trusting that she will be healed, and that she is a miracle child.

The whole thing is really messy.  And, I am glad to be approaching the topic myself today, so that it doesn't fall onto me unknowingly tomorrow.

I urge everyone to be really clear with their loved ones on this topic.  It is the only way to avoid adding tragedy to tragedy.  And if your loved ones aren't in support of your wishes, make sure you document it on paper, and get it to your primary care physician as soon as possible.

This is Not About Aimee - It is About You & I

This whole discussion is not about the girl that we know through the media.

This discussion is about you and I.  This discussion is about how any of us could one day wake up in a hospital bed with no arms and no legs, just as a torso and head, all because of the choices of our next of kin.

That is scary.

I suspect the reason that this story has traveled across the country and the world is due to our ability to relate to  her situation.  Happy and healthy one day; waking up without limbs the next.

When I see her in the news, I see myself.  When they broadcast that she is going to lose her fingers and the remaining foot, I feel it happening to myself on some level.  And, I think- "Dad, no, don't do this. I don't want to live like this.  I would rather go out in a bang, then drag on my life in a less than full way."

Do you have a voice like that too?

The hard part is that there is no clear line.  And, in some ways, the father (my father) should be the last one to decide when to set her (me) free.