This post is the twenty-second in a series, “Lessons from my Father, Lewis Marler,” who lived from 1921-1998. He died 12 years ago on May 26, 1998.
It was approximately a week before Memorial Day when my stepmom called to say that my dad had been admitted to the hospital, again. I drove the familiar route to the hospital and met them there.
Over the previous three years, my father had been hospitalized at least four or five times per year. He had significant dementia related to congestive heart failure, and each hospitalization left him weaker until he could no longer walk. Pneumonia, urinary tract infections, COPD (Chronic obstructive pulmonary disease), and blood clots were just a few of the illnesses he battled.
As I walked into the hospital room, the doctor was giving what I instantly recognized as the “hospice talk.” The doctor looked at me as I entered, nodded his head, and continued talking to my stepmom.
“We can run more tests, and we can try more treatments, but I cannot tell you they are going to help Rev. Marler at all,” the soft spoken physician said. “I believe he is tired, and doesn’t want to fight anymore. I can’t say I blame him. He has been through a lot these last few years.”
He continued, “Hospice can help him be comfortable, free of pain, and be at home with his family. Think it over, I will do what you want me to do. He may only have a few weeks, or a few months at most,” he added as he slipped out of the room.
I had been in on dozens of these discussions with other patients, families, and physicians in my work, but because it was my father, it took my breath away.
On one hand, I had convinced myself somehow he would rebound. Even with my training as a chaplain, I wanted to grab the doctor by his starched white coat and say, “You don’t understand. This is my father, Lewis Marler. We can’t give up.” As if my father was different than any other hospice patient. But I had been too close to the situation and had fooled myself.
On the other hand, I began beating myself up for not seeing this sooner. I wished I had more discussions with my father about his final wishes before he started getting confused, just like I had told everyone else to do.
When the doctor left, my internal struggle was interrupted by my stepmom’s question, “What should we do Malcolm? What should we do?”
I looked at her and walked over to my dad’s bedside, leaned over close to his face so that he could hear me and hopefully understand what I was about to say.
I spoke clearly and slowly, “Dad, how do you feel about going home from the hospital but doing it different this time? How would you feel about not going to any more doctor’s appointments, not taking any more medicine except that which keeps you comfortable, and never coming back to the hospital again?”
I was about to give the other option of continuing we additional treatments.
He turned his his head towards me, looked me in the eye and said with a smile, “That sounds pretty good to me.” That was all I needed to hear.
“There is our answer,” I said. And that is what we will do.
I called my work and told them I didn’t know how long I would be gone, but I wouldn’t be back until after my father’s funeral. Thankfully, I had the personal time and a supportive boss. And I went home with my parents to stay until my father died.
It is hard to let go and focus on comfort care. But quality of life is more important than quantity. This is a personal choice, of course, and it makes it a lot easier when you know the wishes of the patient.
In fact, as I write this, I am realizing this conversation needs to happen with my stepmom as well so that I know what her wishes are.
I was fortunate, we had a caring doctor who recognized it was time, and my own father who could say, “”That sounds pretty good to me.” And so it was.
Time for hospice is never an easy decision, but it can be the most loving decision we ever make.
My father taught me so.