She was making progress, but only according to our definition.
"She really wants to go home," Mr. Jenkin said to me as he arrived yet again at the nurses' station.
"I know, sir," I replied, "but her physicians don't think she can survive without her breathing tube yet."
"We know that, but she wants the tube out and she wants to go home now."
I walked him back to the room, feeling slightly irritated. After all, Mrs. Jenkin was making progress. Even with an ejection fraction of 15% and a mitral valve in poor shape, her chest X-ray was clearing up, her heart rate was down, and the ventilator was providing only pressure support.
She'd been in and out of the hospital all year for pulmonary edema. This time, however, her heart didn't respond to aggressive treatment with diuretics. Her respiratory and heart rates soared, and her oxygen saturation plummeted. After she was intubated and stabilized, an echocardiogram revealed that sometime during the year, she'd had a massive myocardial infarction. Most of her left ventricle wasn't even moving, and the mitral valve leaked badly. Now she was on strong intravenous (I.V) drugs: amiodarone, bumetanide, and milrinone. Given her history, I thought she was doing remarkably well.
"What's the matter, Mrs. Jenkin?" I asked when we reached the room, indicating the notepad on her bed. Dead is dead, she wrote, and gestured repeatedly that she wanted the breathing tube out.
"Removing the tube will be safer and easier once your lungs clear," I responded patiently. "If the tube comes out too early, your breathing might not be strong enough and we'd have to reintubate you." She glared at me, shaking her head no.
"You don't want the tube back in again?" her husband asked. She shook her head no even more vigorously.
"You may die if the tube comes out now," I said gently, "and you're doing so much better every day. We're almost over the hump!" Still she shook her head.
As I walked back to the nurses' station, I thought angrily, She's making such progress. What is she thinking, to risk throwing it all away? Yet her physicians acknowledged that even with treatment, Mrs. Jenkin's quality of life would decrease markedly, with frequent admissions and reintubation very likely.
As the nurse-manager and I were debating the next step, the pulmonologist arrived. Surely he'd be able to get through to her. I brought him up to speed on the situation. He eloquently pressed our case for patience and Mrs. Jenkin clearly understood him, but she shook her head no again. The pulmonologist asked me to call her primary physician, Dr. Redding.
As I explained the situation over the phone to Dr. Redding, I began to have some doubts about my attitude. Why am I trying to convince her to keep going, against her own wishes? I wondered. What kind of life will she have, even if she does wait?
Dr. Redding ran through a list of persuasive ideas, but we'd already tried them all. At last, he said in frustration, "Well, then, I'll just declare her incompetent. Then we can keep the tube in for a couple more days, at most, until it's safe to take it out. And we just won't put it back in."
His words chilled me. "Dr. Redding," I said carefully, "Mrs. Jenkin seems to fully understand her current condition, the need for the tube and ventilator, and the consequences of its removal. The pulmonologist had a lengthy talk with her. I don't believe she's incompetent." I paused, and the silence grew uncomfortable. "Mr. Jenkin is right here; would you like to speak to him?"
Dr. Redding, Mr. Jenkin, and Mrs. Jenkin-with her husband as intermediary-spoke for 20 minutes. Then Mr. Jenkin gestured me back to the phone.
Dr. Redding sounded defeated. "Let's get a psychiatry consult to make sure she's competent. If she is and she still wants to leave, let her. Have her sign out against medical advice."
As I wrote up the orders, Mr. Jenkin appeared at my side. "This is our 35th admission in the last 3 years," he said. "She's tired of fighting. All the doctors say she'll continue to have more episodes, and none will guarantee that she won't need the breathing tube again in the future." I realized suddenly that he was consoling me.
What had I been doing? Here was a competent woman refusing medical treatment, with her husband's support. Her prognosis was poor, and all she wanted to do was to go home in peace. My role became clear: helping her make the best choice for her, not for me or her physicians.
The psychiatrist evaluated Mrs. Jenkin and found her competent. I notified risk management; Dr. Redding and the psychiatrist spoke and saw Mrs. Jenkin together. She still wanted to go home, so I notified all her physicians of her decision. They called in prescriptions to provide her some comfort in her last days.
Entering her room with newfound serenity, I said, "Mrs. Jenkin, Dr. Redding doesn't think you should leave, but he said he won't stop you." Even the breathing tube couldn't dim her smile. "As long as you truly understand that you may die soon and don't have any questions, I'll get the paperwork ready."
Mrs. Jenkin was extubated and we made arrangements for her to have oxygen at home if she needed it. Her medications were switched to the oral form. As the nurse-manager and I watched her sign the papers, I added, "Remember, you can change your mind. You're welcome to return to the emergency department for treatment."
"Thank you for everything, Hank," Mr. Jenkin said.
"I'm the one who should thank you," I responded, and we said good-bye.
Several days later, I learned that Mrs. Jenkin had died, surrounded by her family and free from the obtrusive breathing tube, the tangle of I.V. tubing, the ear-piercing squeals of alarms.
I don't know if she made the "right" decision. But, as her nurse and advocate, I realize the decision was hers to make.
By Henry B. Geiter, Jr., RN, CCRN
Henry B. Geiter, Jr., is a pool nurse at Bayfront Medical Center in St. Petersburg, Fla.; a critical care transport nurse for Sunstar-EMS in Clearwater, Fla.; and an adjunct instructor at St. Petersburg (Fla.) College.
Copyright Springhouse Corporation Mar 2004
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