I curled up on the couch by a crackling fire, sipping tea and enjoying a good book. After spending the day photographing scenes of fall leaves, it was a perfect November evening until the phone rang. My chest tightened as my daughter tried to talk between deep sobs. When I asked what was wrong, she cried harder. Should I say something or wait? I waited.

“G-g-grandpa is-is in in-intensive care. Th-they don’t think h-he-he’ll make it through tha-a n-night.”

Every emergency with my elderly parents landed on Tammy after we moved to Georgia, and I hated it. However, the flurry of activity to contact my husband, Michael, make airline reservations, and pack pushed other thoughts aside. Michael drove through the night to return home from his consulting job in Florida, take me to the airport, and take our animals to Florida during my absence. As we loaded the car and headed for the airport, my mind was numb until the phone rang.

“Mom, I’m going to the hospital. They made a big mistake. Grandma got confused and let them put Grandpa on life support.” I heard fear and panic in Tammy’s voice.

What happened? Everyone was aware of Dad’s living will, given his age and poor health. The nursing home, my daughter, my son, and I had copies. Both Mom and Dad had living wills that stated they didn’t want extraordinary measures taken to save them.

“Okay, Honey, thank you. I’m on the way. Love you.“”“Love you too, Mom. Hurry. Please.”

My questions multiplied. Why wasn’t the living will in his chart at the nursing home? Was the chart present when he was taken to the hospital by the ambulance? What did the doctor tell Mom? The three-hour flight provided too much time to dwell on the horror stories I’d read about these situations.

Just before 11 pm, I landed in Phoenix, checked out a rental car, and headed for the hospital in Prescott, over a hundred miles away. Tammy was at the hospital when I arrived and said my son, Dale, would arrive the next day. Mom—pale, confused, and shaky—sat next to Dad, on a respirator, unconscious in intensive care. When the hospital staff said there was nothing we could do except wait, I nodded, too tired to argue—yet.

The next forty-eight hours blurred, but the situation became obvious. Mom was tired and confused when the nursing home staff woke her in the night to go to the hospital with Dad. Despite her age and mental state, no one called the family. Mom called Tammy long after the nurses settled Dad in the ICU.

To complicate matters further, Mom said the ER doctor told her he would only “help him breathe.” No one mentioned a respirator, and worse, despite the severity of Dad’s condition and Mom’s age and obvious confusion, no one asked for Dad’s medical directives. That’s when I realized the ER doctor manipulated her to get the response he wanted.

Anger spurred me to investigate further, and it didn’t take long to find out that the nursing home couldn’t explain why the hospital didn’t receive the proper information and records.

“After all, mistakes happen when emergencies take place in the middle of the night.”
Then, the social worker at the nursing home informed me that the spouse’s wishes always get priority over the medical directives, and the emergency room doctor stated that he just did his job. No one accepted responsibility for not following my father’s directives. Now, I’m frustrated, as well as angry. Medical directives are legally binding, not optional.

Tammy left the next day. She had two young sons at home, and she and her husband couldn’t afford more time off work. Likewise, Dale left. He stayed awake around the clock to come without missing work. Both children demanded assurance I’d do something. What? How?

My children loved their grandfather too much not to honor his wishes, and my son felt strongly about letting him keep his dignity too. I agreed, and right or wrong, I needed to get busy.
Without telling Mom, I tracked down the ER doctor. “Do you know my dad has a living will?”

“It’s too late now,” said the ER doctor as he turned and walked away.

I followed and resorted to pleading. “This isn’t what my dad wanted. He’s sick and in pain. He has dementia, and he never wanted to live like this.”

“We can take him off the respirator if your mother agrees, but he probably won’t make it.”

“What do I have to do to honor his wishes?” I was tired and fed up with the bureaucratic dance. Hospital smells make me nauseous, and I faint at the sight of the needles and equipment unless I conscientiously avoid looking at them. Dad and I were extremely close, and the struggle to separate my emotions from the duty at hand cut like a knife.

“I don’t know. I’m not in the business of killing people.”

Did a doctor really say that? I wanted to punch him. Fortunately, he was halfway down the hall when I recovered and sat down, shaking with anger. I wanted to go kick the car tires or cry, but there wasn’t time for either.

The next stop was the hospital social worker I met last night. Since I am an only child, I had to handle this carefully. Working in a bank’s trust counsel office gave me a deep understanding of will, probate, and estate laws. Nothing is simple.

However, without a large family, the hospital legal department can poll about a decision. I expected only one chance to straighten this out. Dad’s wishes didn’t come first with anyone else. Although Mom’s competency was questionable, I could do nothing without going to court. That night, when I called with an update, my husband said, “Dad can’t sue them in his condition, but Mom can. Why listen to what he wanted?”

My problems won’t be over after I talk to the social worker, either. Mom adamantly avoids those who inquire about personal details. She challenged the nursing home staff daily, and everyone knew social workers and psychologists topped her list of people to avoid. Now, I had to decide whether to alienate Mom to carry out Dad’s wishes.

Luckily, the hospital social worker proved to be experienced and understanding. After a brief discussion and showing her the legal documents, she scheduled a meeting between Dad’s primary care doctor, Mom, and me, and I asked her to attend too. No matter whom I alienated, I wanted no questions about whether my mother willingly made this decision, and I knew she could still say no.

While we waited for the meeting to start, the ER doctor appeared and tried to bully Mom into doing things his way, which reinforced my suspicion that he manipulated her. He played on guilt, badgered her until she was in tears, and responded rudely when I intervened. My urge to slap him returned.

Sadly, I discovered the truth behind the horror stories I had read. No one makes it easier. The opposite occurred, and everyone ignored the fact that living wills, organ donor cards, and do not resuscitate (DNR) orders are legal documents of instruction.

Our meeting began with a review of the medical situation, and I learned Dad coded twice before arriving in the emergency room. How in the world did they handle that in an ambulance with a seventy-seven-year-old disabled spouse in the way? After hearing all the details, I asked the doctor my questions. I also asked Mom a few. She stared at the floor as she answered and said nothing else, while the social worker sat quietly in the background—an impartial witness to our heart-wrenching decision-making process.

Finally, I said, “Mom, do you think Dad would want to live this way?”

She stared at her hands, clenched in her lap. “No.”

For the first time, a doctor, Dad’s primary care doctor, said, “Do you want to take Ron off the respirator?”

Tears running down her cheeks, Mom nodded and said, “Yes.”

Despite the effort it took for Mom to maneuver her walker any distance with badly crippled hands, she didn’t argue about going out for lunch. We ate in silence, avoiding conversation, but I didn’t want her at the hospital where we could only wait. It takes hours to work through the steps of removing the respirator. It’s not quick like on television.

After lunch, I drove aimlessly to waste more time before we returned to the hospital and slowly navigated the long corridors to the ICU waiting area.

The doctor met us at the door, smiling. “He’s breathing on his own. He made it. I don’t know how, but it’s up to him now.”

I left Mom sitting at Dad’s bedside crying while I called the children and my husband.

Within hours, Dad was alert, and within days, they moved him out of the ICU. Within two weeks, he returned to the nursing home infirmary. He lived long enough to meet his fifth great-grandchild and celebrated five more Christmases with the family he adored, but there was also a downside.

Dad lost most of his sight to macular degeneration, and he had dementia. Watching him fade and seeing the pain he endured from transfusions for a bone disease, I don’t believe he would have chosen to go through those things. Because they did not honor his directives, he lost the chance to die quickly when nature and his body said it was time.

Some resources suggest prolonged respirator use decreases chances of recovery, and he wouldn’t have wanted to live that way indefinitely.

Dad feared leaving life-altering decisions in Mom’s hands because he didn’t trust her to follow his directives. That’s why Dad listed me as his primary power of attorney and the children next. However, shortly before my husband and I moved to Georgia, someone suggested he put Mom back on, and he did—secondary to me. In retrospect, because of the tendency to honor the spouse’s wishes over all else, it may not have mattered, but it should. Dad named me because he knew I would honor his instructions over all else.

He had the right to have his wishes respected, and I had the right to honor them.

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