By Nancy Valko, RN
In the early 1970s, I was a young nurse working with many trauma victims in a state-of-the-art intensive care unit and I loved it. Because of the high number of young accident victims, I was also often involved with organ donation from patients diagnosed as brain-dead. Asking shocked and grieving relatives about organ donation was the hardest part of my work.
Back then, “brain death” was a new legal and ethical concept stemming from an influential 1968 Harvard medical school committee paper titled “A Definition of Irreversible Coma”, which concluded that severely brain-injured patients who met certain criteria could be pronounced dead before the heart stops beating.
Starting in the early 1970s, various state legislatures and courts acted to turn this “medical consensus” into a legally recognized standard for determining death by loss of all brain function. Patients declared “brain-dead” then could have their organs harvested while their hearts were still beating and a ventilator kept their lungs going. The brain death concept virtually created the modern transplant system because waiting to take organs until breathing and heartbeat naturally stopped usually resulted in unusable, damaged vital organs.
Like most people, I didn’t know the history of brain death back then and despite the tragic circumstances of my “brain-dead” patients, I was excited by the opportunity to participate in turning tragedy into the “gift of life”.
Over time, however, I developed some nagging concerns about the brain-death concept and I shared them with our intensive care doctors. I was told, as one doctor put it, “Nancy, greater minds than yours have already f figured this all out so don’t worry about it.” It took me years to realize that this meant these doctors didn’t know the answers either.
Death and Choice – Unknown to most people, controversy about brain death has simmered for years in the bioethics community. Some well-known physicians, for example, Alan Shewmon and Paul Byrne, argue that the current brain-death standard does not reflect true death. Others, such as Dr. Ron Cranford and ethicist Robert Veatch, argue that the brain-death standard should be stretched to include so-called “persistent vegetative” patients, further expanding the pool of potential organ donors.
Last August the bioethics world was rocked by an article by Drs. Robert Truog and Franklin G. Miller in the prestigious New England Journal of Medicine that made the shocking assertion that many organ donors were not really dead at the time their vital organs were harvested. This Harvard doctor and this National Institutes of Health bioethicist then proposed the radical idea that doctors should drop the rule requiring that people be declared
dead before vital organs are taken in favor of merely “obtaining valid informed consent for organ donation from patients or surrogates before the withdrawal of life-sustaining treatment in situations of devastating and irreversible neurologic injury”. This, in Truog’s and Miller’s opinion, would preserve the current transplant system and still be acceptable to the public because “issues related to respect for valid consent and the degree of neurologic injury may be more important to the public than concerns about whether the patient is already dead at the time organs are removed.”
We Are All Affected – While organ donation is a worthy goal when conducted ethically, it is very dangerous when physicians and ethicists redefine terms and devise new rationales without the knowledge or input of others, especially the public. This has been happening far too often and far too long in many areas of medical ethics and the consequences are often lethal.
Opinions about medical ethics affect all of us and our loved ones. And good medical ethics decisions are the foundation of a trustworthy medical system. We are constantly exhorted to sign organ-donor cards and join state organ registries but are we getting enough accurate information to give our truly informed consent? This question is too important to just leave to the selfdescribed experts.
Life Is Good
By Jennifer Hamann, RN, MHA
I am writing this to share a bit of my own history with you. This marks a turning point in my life during which I decided to become a nurse and gained a great passion for life and a firm resolve to defend it and cherish it even when we cannot discern its “quality” or utilitarian value. Other than me and my husband, Phuoc, all the other names are fictitious but the people they represent are real as are these experiences. I have always been pro-life, but personal struggles like those I write about here have greatly strengthened my commitment to the cause.
Life was good in the Spring of 1986. My husband had a good job. I stayed home with our children and contributed to the family income by doing licensed child care and income taxes. The previous Autumn I had been diagnosed with epilepsy but we had gained control of the seizures with medications. Actually, we figured that I had been having seizures most of my life but they had never been identified. The seizures escalated in 1985, lasting longer and leaving me quite disoriented with lingering hemi-paresthesia (numbness and tingling on one side of the body) compelling me to consult a neurologist. A simple EEG caught a seizure in action to help diagnose epilepsy.
After several weeks on Dilantin and Phenobarbital I woke one morning feeling somehow strange or different. I couldn’t quite put my finger on it until a couple hours into the day. Then I realized that what I was feeling was actually what I was NOT feeling. My head did not hurt. Frequent seizures had kept me in a constant postictal state with headache pain, and I could not recall any time without pain before that.
Fall and winter passed and we were enjoying the Spring, bustling with new signs of life. I was busy taking care of our own and other people’s children (twelve in all) during the day and doing income taxes a couple evenings a week. My faith was strong. I was active in my parish and remained seizure free. Life was indeed good.
One of the day care children returned with his parents from a trip to Mexico with diarrhea -giardiasis. Even though I was careful about hand-washing and diapering, I managed to catch it. An on-call doctor informed me of the test results and ordered Flagyl.
After the first dose, I had my first ever generalized seizure. I awoke to find the children clustered around me crying. Once I regained my faculties, I called the doctor who insisted I must continue the Flagyl. He suspected the excessive diarrhea had caused my Dilantin and Phenobarbital blood levels to drop and said the Flagyl was needed to put a stop to it. The evening dose produced another generalized seizure . . . and another.
Having arranged for a neighbor to come stay with me and the children and for other day care providers to take most of my charges, my husband, Phuoc, attempted to rouse me in the morning.
The following may seem sketchy and disjointed. My awareness of people and things around me came and went. “I have to get going. Jenny?” My eyes opened but that was all I could do. I could not speak or move and Phuoc realized something was seriously wrong. He called 911.
Next thing I knew was that I was in the hospital emergency room and the doctors were telling my husband that I was in a continuous seizure state. They were loading me with drugs to try to stop the seizures but the situation was serious. My husband stayed by my side and I had a sort of surreal sense of things. I could sometimes understand things and open my eyes as a response but that was it. I was growing truly, deeply exhausted.
Where am I? I still can’t move. I can’t even open my eyes now. I don’t feel anything, except for my head. It feels like it’s going to explode. BUT I CAN HEAR!
“Hello, I’m Kathy. I’m your nurse. I need to turn you now to clean you up.” She sounds so nice; I wish I could talk to her. I’m tired. I think I’ll sleep.
“Hey, come here and help turn her. I don’t know why her husband is being so stubborn. Who would want to be tied to a vegetable?”
Who are you? I wish I could talk. I don’t like how you are treating me. I am NOT a vegetable. I am a person! . . What Lord? Pray for her? Okay.
“Hi honey, I’m here. I love you. The kids miss you and want you to get better so you can come home. They won’t let them come in the ICU to see you. Maybe that is best, I don’t know. Now you just rest and get better and we’ll have you back home with us in no time.”
Thanks honey. I want to come home too. But right now, I need to sleep. Wow, it sounds like a bunch of people coming in this time. I wonder who they are.
“Now this is a sad case, young mother with small children at home. Went into status epilepticus and coded. Only about five percent chance of coming out of the coma but then she’d be in a vegetative state at best. Essentially brain dead, but her husband just isn’t ready to face reality and let her go. Too bad. We’ve got people who could really benefit from her organs.”
“Doctor, is it appropriate to be talking in front of the patient like this?”
“Hello, weren’t you listening? I said she is brain dead. She can’t hear anything anyway.”
Hey, I am not dead and I can hear you just fine! You just wait and see. Jesus told me He has much more for me to do. I don’t know what it is yet but I’m pretty sure it isn’t to just die and prove you right.
I wish I could figure out a way to let all of them know I am still here, that I am a person, not a vegetable. When this is all over, I think I’ll become a nurse. I’ll be one of the good ones that respect patients no matter what.
Truly, life is good. I did go on to become a nurse, graduating in 1994. I continue to suffer from epilepsy and it has recently become truly disabling ending my ability to safely provide direct patient care. Working for California Nurses for Ethical Standards out of my home enables me to still serve my fellow man and make use of my knowledge as I advocate and educate to promote the cause of life.