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Voices Online Edition
Vol. XVII: No. 1
Autor's note: The following was published in the November, 2001 issue of the New York State Nurses for Life's newsletter.
Eileen Doyle, RN, president of New York Nurses, is one of my favorite people as well as a tremendous resource for me. I had called her about reprinting the pamphlet mentioned in the article and during our conversation, I told her Katie's story. She asked me to write it up but, as I told her, I was not writing articles for awhile in order to help with my dying Aunt Jane.
But one night, I woke up at 3 am and felt compelled to write this story. I didn't know why I felt such an urgency. It was as if something or Someone wanted it written right then.
I sent the story to Eileen the next day and she e-mailed me back that it was just in time for the next newsletter.
Four days later, the planes flew into the World Trade Center.
I am so grateful to have been able to contribute something -- anything -- to such a fine organization, especially at such a time of crisis.
In over 30 years of being a nurse, I've seen many amazing recoveries. But none were as gratifying as that of a woman I will call "Katie".
I was working in an oncology unit when we were notified that we would be receiving an 84-year-old woman who was comatose from a massive CVA (stroke). Due to unusual circumstances, she was a permanent resident at our acute care hospital but the orthopedic unit where she stayed was being remodeled and we had an empty bed.
When Katie had her stroke, the doctors soon felt it was a terminal event and recommended to her out-of-town family that she just be allowed to die. IVs were stopped and Katie appeared to be in a coma. She wound up in the orthopedic unit to die. But one nurse told the doctor that Katie would open her eyes if "ice cream" was shouted into her ear and begged the doctor to at least give her IV fluids for awhile. The doctor reluctantly agreed and allowed a peripheral IV with a protein solution we called "TPN lite". The IV could not sustain her indefinitely but it was something at least.
When Katie came to us, I was told by the off-going nurse that Katie was indeed totally unresponsive and I was warned that no one wanted to hear me say that she wasn't. You see, for many years, both in ICU and this unit, I had been an advocate of talking to comatose patients and many of them unexpectedly "woke up" or improved. I was often teased about this and, after one incident, a fellow nurse half-seriously asked if I was a witch. Of course I wasn't; I'm a practicing Catholic. I just believed that hearing was probably the last sense to leave a person and so I always talked to apparently comatose patients as if they were awake. I was surprised myself when many such patients eventually started to respond. Some even made a full recovery.
When I first met Katie, she did indeed seem unresponsive. But when I turned her to wash her back, I felt a slight resistance from her. I told the other nurses that I felt there was some consciousness there but they just laughed. But I felt it also helped preserve her dignity to be treated as if she could hear everything.
Katie was incontinent of stool constantly so we nurses were cleaning her up several times a shift. Some of the nurses resented that we had to spend such a large amount of time with a high-care patient as well as care for our very ill cancer patients..
Then something amazing happened. Within a few weeks Katie started to respond and even to speak.
At first, she just would just mutter nonsense but she would look at us when we spoke to her. The other nurses were delighted with this progress and soon Katie became our unit's "project". The IVs were getting harder and harder to maintain with time, so an order was received that we could try to feed her by mouth. It turned out she was really hungry and soon the IVs were stopped completely.
Katie was still confused but she was obviously responding to us. She seemed to plateau indefinitely at that stage when I got the idea of getting her a doll. I had heard that such doll therapy had helped some Alzheimer's patients and I thought "Why not try it on a stroke patient?"
My daughters contributed one of their soft, washable dolls and Katie's progress escalated and she became less confused. She clutched the doll constantly. We nurses couldn't wait until her doctor saw her.
It was a couple of months after we received Katie before her medical doctor came by. I was told by the other nurses that his response after seeing Katie was "Well, ladies, I don't think you did her any favors". The nurses were disheartened and wondered how he could say that. I said that he was obviously a bit biased because she was still 84 years old and didn't have a job. I said we would just have to work harder with Katie.
And thus began a kind of "charm school" for Katie. We nurses demanded that she say "please" and "thank you" appropriately and two nurses worked on teaching her how to flirt. Katie's confusion was eventually totally resolved and she even seemed to recover most of her long-term memory. She could finally even feed herself with a spoon! However, our requests for physical therapy were rebuffed so she still had to travel by wheelchair.
It was a couple of months later when her doctor returned and this time Katie just astounded him. I was there when he came out of her room and said, "Ladies, write this up! It's a miracle!" Straight-faced, I replied that it was really no miracle and that we accomplished such things every day. I predicted that if he gave us another week, Katie "would have a man AND a job". The doctor laughed and said that he didn't doubt this.
Katie became part of our unit's family and everyone loved her. Unfortunately, we never heard from her real family and Katie never asked. But our unit had changed and Katie inspired us all.
Even our patients in supposed comas at the end of life would often wake up to acknowledge their loved ones before they died because we talked to them and encouraged family members to try to communicate with them. What a priceless gift!
It seemed that Katie's story was having a happy ending and she would stay with us forever. But that was not to be.
Apparently, our medical director had never been informed that we had a non-cancer patient on our unit. Despite our pleas when he found out about Katie, he wrote a transfer order back to the orthopedic unit and even though we told the orthopedic nurses about Katie's mental recovery, they were very unhappy about the transfer. There were many tears when Katie left us.
We oncology nurses continued to visit her but the trauma of the transfer took its toll. Katie soon regressed. She finally became confused again and would only mutter "I want a beer". She stopped feeding herself and it wasn't long before we heard she was found dead in bed. We oncology nurses all felt like we had lost one of our own family members.
But Katie's story is a true testament to the power of love and respect for life. In our "right to die" society, it is not surprising that Katie was slated for death by withdrawal of treatment because she was considered a hopeless case. She only lived because we nurses took on the system and we won, not only for Katie but also for other patients written off by a callous new medical ethic that insists such people are "better off dead."
It's been several years since Katie died and I am now back working full-time in a general ICU. Once again, I'm having to fight attitudes that some patients are better off dead than possibly severely brain injured. One of my colleagues has even nicknamed me "cutie pie", not for my looks (obviously), but because he laughingly says that when I refer to patients as "cutie pies", these patients are usually "confused, combative, or demented".
But I have seen the power of labels such as "hopeless" or "difficult" when applied to patients and I have seen the power of affirmation even save a life.
I remember Katie and smile.
Several months ago, I was called by a mother see her 19-year-old daughter in a nursing home, who had been severely brain-injured in a car accident nine months earlier. At the time of the accident, "Chris" (as I will call her) was so critical that her mother said she had even been approached about donating her daughter's organs. (And this was a Catholic hospital!)
However, after a few days, Chris was able to get off the ventilator and progressed to what the doctors labeled a hopeless, "vegetative" state. Rehab efforts were considered futile at that point and, like many patients, the choice was between removing the feeding tube or sending Chris to a nursing home after a couple of months. What a choice! Death or 'warehousing'. Why are there so few long-term rehab facilities for such patients or support for families who want to take their loved ones home? It seems that such severely brain-injured patients are the only ones doctors routinely give up on so soon and label family members who resist withdrawing basic medical care as "in denial".
When I started with Chris, her eyes were often open but her mom said no one knew if she could see or hear. I started working with her as a volunteer for about a half hour once a week. I told the mom I couldn't promise anything.
That was last winter.
Now, Chris has made so much progress that no one doubts that she is conscious. She smiles, cries, moves her legs on command, turns her head to look at people talking to her and now appears to be trying to vocalize! Just this week, a tech said she seemed to laugh when he choked on a soda. Chris's doctor now recommends that she be taken home for more stimulation than she gets at the nursing home. (Since I wrote this in September, Chris has improved even more. She now eats yogurt by mouth and today when I visited her, she finally said Hi! )
Many of Chris's nurses and techs are really excited. I brought them Jane Hoyt's wonderful pamphlet "A Gentle Approach: Interacting with a Person who is Semi-conscious or Presumed in Coma" and the head nurse was interested in reprinting it for the other employees. I discovered this pamphlet through New York Nurses for Life and I believe it is a wonderful tool for nurses and families.
Chris's story -- like Katie's -- show that when nurses get 'turned on' to a 'hopeless' patient, great things can unexpectedly happen!
Nancy Valko, RN
The foregoing essay was published in the November, 2001 issue of the New York State Nurses for Life's newsletter. Reprinted by author's permission.
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