It struck me how difficult it is for some medical professionals to accept and work within the belief systems of their patients and families. The conversation brought to mind an incident that happened to me in the ICU several years ago when I had a difficult time interacting with a mother who made a decision I didn't agree with, and I shared the following story with my coworker in the hopes that she would see how judging someone by their belief system can have a potentially profound negative effect on the patient, the family, and even the medical professionals who deal with them.
My patient was a man in his early 20's with a closed head injury who'd been declared brain dead just prior to the start of my shift. His mother was at his bedside talking with my state's Organ Procurement Agency (OPA) representative about organ donation, and she was very upset and crying. After the OPA rep left and I'd introduced myself and done my assessment of her son, the mother and I began to discuss what her options were in regard to his death. This is a very difficult concept for family and friends because it's hard for them to look at a loved one who appears to be breathing and has a heartbeat, yet accept that they're dead. It usually takes a lot of time and explanation on the nurse's part.
Now, to clarify for those who don't know, you CAN be dead and still have a heartbeat. Brain activity is not required for a heart to beat, but oxygen is. So, in my patient's case, his heart continued to beat because the ventilator was supplying the oxygen that his heart needed to function. His brain, however, was so severely damaged from his accident that it was no longer functioning, therefore he would've never awakened or breathed on his own again.
His mother and I had a long talk. She told me all about her life, that my patient was her only child, and that her husband had recently died. She had no other family but belonged to a large fundamental Christian church whose members were very supportive, and she relayed that several were en route to being with her. After about an hour of talking, and giving her some alone time at the bedside, she called me over and told me that she'd decided to donate her son's organs, that she felt like she would be giving a gift of life to someone who needed it, and that it would make her feel better knowing that his heart continued to beat on inside of someone else. I made the appropriate calls to notify the OPA and let her sit at the bedside with her son while I did my nursing care. I am a huge advocate of organ donation so, while I felt sadness for this mother, I was also happy for all the people who were going to get "the call" that their wait was over.
When her "church family" showed up, they took turns coming in to sit with the mother and to see her son. There were a lot of tears and hugs. She then went to the waiting room with them to pray. About a half hour later she came back into the ICU and quietly told me that, after discussing it with her church family, she'd changed her mind and could no longer consent to organ donation.
WHAT?
I couldn't believe what I was hearing. I just KNEW that her church family talked her out of it due to some mysterious, ridiculous, misguided belief. I was furious! Did this woman, these people, not recognize that somewhere in another hospital a family was watching a loved one die while waiting for a heart? a kidney? a liver? This young man, my patient, was perfect from the neck down! I did my best to hide my anger but I know she could tell that I was very unhappy with her decision. I silently blamed her fundamental Christian friends for taking the chance of life away from other people, and for denying this mother the right to feel like her son, in death, was able to make a contribution that would be more than most of us could ever give. I was so angry that I had to walk away, and after a few minutes, she went back out to the waiting room.
About half an hour later she stuck her head in the main ICU door and asked if she could come in to see her son. She'd been coming in and out all evening without restriction and I thought it was strange that she asked this time, but I told her to come in. She walked over to the bed, and I explained that I'd gotten the order from the doctor to pull out his breathing tube, and told her that when that happened, he would not have an oxygen supply and that his heart would begin to slow, then stop. She asked several questions about whether he'd feel anything, whether he'd make noises, general things that people wonder about when they've never seen someone die. I noticed that she was trembling, and then she tearfully asked me if I was going to let her stay.
UGH.
It hit me like a ton of bricks as I immediately realized that my personal feelings toward organ donation and the religious sorts who don't "allow" it, along with my anger at this mother for changing her mind, had contributed to me having an attitude of negativity toward her which resulted in her thinking that I would not allow her to be with her son as his heart beat its last beat.
I WAS ABSOLUTELY MORTIFIED AND ASHAMED.
I apologized profusely and assured her that under no circumstances would anyone make her leave her son's side until she was ready to go. As I waited for respiratory to come and disconnect the ventilator, we talked about her son and how much she loved him. She told me that she was truly alone in the world now and had no one but her church family for love and support. I then understood a bit more her decision not to allow donation, and while I was still somewhat angry about the circumstances behind it, I refused to let my feelings and beliefs interfere with taking care of my patient and his mother. His vent was then disconnected and at her request, I stayed with her as she watched the monitor. His heartbeat slowed, then stopped, and we both were crying: her for the loss of her son, and me for the loss of a young man that I never knew. (I may have possibly shed one or two tears for the unknown people who would die as a result of organ failure, but I didn't share that with her.)
After that night I had a new appreciation for how difficult it is to be truly open-minded and accept someone for who they are and what they believe, in all manner of being. It IS possible to love someone, like someone, be courteous to someone, support someone - even when their beliefs are completely different from mine. It isn't always easy, but it's doable. In my professional life and my personal life, I strive to always be accepting of and supportive of those around me - without judgment, without lecture, without anger. I'm not always successful but the effort IS there.
I have a grieving fundamental Christian mother and her dead son to thank for that lesson, and I hope others can draw from my experience as well and provide their patients, no matter what their faith or choices may be, with the appropriate supportive care.
