My father passed away unexpectedly on May 11, 2013 at the University of Minnesota Medical Center, Fairview Hospital from complications after a minor surgery to remove cancerous skin spots that had spread to several lymph nodes in his neck. After the operation he experienced a major stroke on the left side of his brain. My sister and I were left to make any decisions regarding our father’s life, as he never remarried after he and our mother divorced. This was the only thing he had made perfectly clear to one of his sisters a couple of years earlier. At the time of his death, neither my sister nor I had passed our 31st birthday. We hadn’t expected to face this hard decision at such a young age and were not emotionally prepared for the decision we were faced with. We were left to our own judgments. My father had completed a health care directive before his triple bypass heart surgery a couple of years earlier but he had managed to leave out any details regarding what to do in situations like the one we were presented with. He could not communicate in any way. We had no idea what he was thinking or how much he understood, and were left to guess what was going on inside his head. When it came time to make the decision of whether or not to keep him on life support or to let him go, he could not talk or comprehend language; he literally had no say in his fate.
My sister and I met on a Friday morning, 10 days after his stroke, with his team of physicians. This meeting was intended to give us the knowledge to move forward confidently in our decision of whether or not to keep him alive. We sat around a long conference table with pictures of my father’s brain on an overhead projector screen, large portions blacked out and others bright white. I remember hearing words spoken by his doctors, but the entire meeting was a blur. I knew my father was going to die.
Comfort Care: this is the direction in which we decided to move. We knew he was not going to get better. At best, he would live in an assisted living facility, wheel-chair bound and in diapers—a far cry from the bow hunting and ice fishing in western Minnesota that he so enjoyed.
That afternoon my family met in his room. The hospital chaplain came and said a prayer while the entire family held hands. Some of us placed our hands on my father. Next came the respiratory therapist to discontinue his ventilator. He was not moving much on his own, and it was hard for us to tell if he was heavily sedated, sleeping, or just unable to move from his stroke. His breathing tube was left in place to avoid an unpleasant passing for both him and the family. Without it, he would have choked and suffocated immediately. With the tube left in place, he was able to slow his breathing on his own while being comforted by the constant Morphine drip that was being monitored and increased as needed by his nurse.
When the ventilator stopped, he opened his eyes. I was standing on his left side holding his hand. He looked at me, made eye contact, and I knew he was there. I wanted so badly for him to say, “Stop, I will be okay,” or “I love you, please let me go,” but I had none of these hints, just a deep, sad gaze. I squeezed his hand and got nothing back. I stroked his forehead, and he seemed to be calm. We sat like this until he took his final breath, six and a half hours later.
I looked at his face, pale and frozen. His hand had become stiff and cold. All I felt was sadness. Clichés about being in a better place and not hurting anymore were in a different hospital room. The only thing I knew was my dad had died and it had been my sister’s decision and mine.
I hope I made the right choice, but none of that matters now. All I know is the pain I experienced in choosing death over life without clear intent of what my father really wanted. It is easy not to think about death when we are living. Completing a health care directive is something that all capable people should do, but there is more to it than filling in a few blanks. Though it may be difficult, it is important to write in as many details as possible. If needed, talk to your doctor to see if he or she can help brainstorm scenarios that might occur so that you are granted your true wishes. No one should have to go through what my sister and I went through. Avoid unnecessary pain and hard choices forced onto those who love you most and prepare when you are able. It is your life—and death—after all.