Between Yes and No

"No. No more."

I was absolutely clear with the ICU ward team. I had decided I would never again allow myself to be maintained on life support.

Life as I defined it was slipping away. There had been six hospitalizations in eight months, six episodes in ICU on a ventilator.

The progressively worsening lung disease ravaged my body, and the machine that breathed for me was sucking my soul dry.

Everything I valued -- family and social activities, work, independence, fun-- was all being stripped from me. I had one choice left-to say no and end my life before I became completely useless.

The arguments began. They were eager to stop the talking and get to work. A nurse wheeled the ventilator into my room. "But you're so young, we can save you." It was a familiar mantra. Save me for what? I had put my directives in writing weeks earlier, knowing that if I waited until this moment, I would be declared decisionally incompetent.

I simply intended to refuse all treatment. I had anticipated everything, everything except the remarkable man who was about to enter my life.

My regular physician was out of town, and a pulmonologist had been called in to consult. I knew exactly what was going on. The team didn't want me to die on their shift, so a high-powered specialist had been summoned to deal with me, the ultimate difficult patient. I was ready. I knew my rights and had rehearsed my speech many times about my legal and ethical right to refuse treatment.

"I can't face it again." He then threw me a curve. Instead of telling me all the the reasons why I should consent to treatment, he quietly asked me, "What is it you can't face? Tell me what we could do differently."

In that moment I had to decide whether or not I would try to trust this stranger, this person who had been sent to convince me to endure the mechanized torture chamber to salvage my physical existence. "What can't you face?" he repeated. "Is it the pain?"

"That's only part of it," I responded guardedly. I had lived with this disease all my life and had overcome the physical dimensions-I had gone to school, worked, married a man I was madly in love with. It was more than the pain.

"The restraints. I feel like an animal. They tell me I have to be restrained because I'm 'agitated', but I'm trying to get free."

He assured me he would not allow me to be restrained. He told me he would stay with me until I was stable and calm. If he had to leave, he would leave explicit orders to call him if I became restless. No one would have permission to restrain me.

"And the morphine. I don't want to be doped up all the time. I need to be able to ask for it when I need it. Sometimes it's more important for me to be alert, so I don't slip away into the rhythm of that machine, breathing in and out, in and out."

He showed me the order sheet as he wrote a prn order for morphine.

Our conversation couldn't have taken more than 5 or 6 minutes, but it was a powerful force. I could feel myself slipping into the dreaminess that would end my life if I refused the ventilator. Literally, this man stood between me and death.

He took my hands, looked at me and said, "I don't want you to die. In a few minutes you'll be unconscious, but I won't do this if you say no. We can work together on this."

Those words conquered my fear--the fear of having no control in my life. He was willing to make my wishes primary; in that moment he returned my humanity to me. I nodded agreement. He did keep his part of the bargain to honor the things I didn't want and made the next few days easier to endure.

This time the ventilator didn't possess me. It was different because I was able to say no:

• No to restraints -- I could reach the call button
• No to scheduled morphine -- I could decide if it was more important to have relief from pain or to be more conscious.
• No to isolation -- I had a pencil and paper and could communicate.

I had choices and was able to make decisions about important aspects of my care.

This brief dialogue pulled me back from the only decision I thought I had left to make. One human soul reaching out to another made space between two extreme options: either yes, agreeing to everything the doctor ordered, or the final no.

I discovered I did want to live when my values were considered.

Having the power to say no to some treatment approaches allowed me to say the ultimate yes. Yes to life.