Local Doctors Talk About The End Of Life
By Leah Carey
Dec. 20, 2016
Dr. Michael Rousse, the director of hospitalist services at Northeastern Vermont Regional Hospital, has seen his fair share of death during his 25-year career.
“I can tell the difference between a nice death and a really horrible death,” he said. “We, as physicians, get really conflicted. Because when we think enough is enough, sometimes the family doesn’t think enough is enough.”
Recently he witnessed the death of a man in his 90s that said was “a very, very nice death.” The man had a heart attack and was admitted to the hospital.
“He said, ‘This is it,’” said Rousse. “He was open about it. He had a certain amount of graveside humor, and just made everybody around him feel at ease about what was going to happen. Those are the really graceful deaths.”
There was one person, though, who was not peaceful with what had happened: the man’s granddaughter. “She was in her 20s. I don’t think she’d ever seen a death and her reaction was anger – how could you let him die?”
Rousse said that dealing with death gets easier as you’re around it more. Perhaps that is why the doctors who took our survey (visit www.caledonianrecord.com/living_with_dying to see the survey results from the Dec. 6 edition) overwhelmingly said they would choose quality of life over quantity of life for themselves when it came to the end stages of a terminal diagnosis.
“In this day and age, there’s always another stent or another surgical procedure or another tube or another chemical that can be done,” Rousse said. “And so if you go by the mindset that you want to do everything that can be done, it’s going to be a long, very difficult death.”
[Editor’s note: The doctors who spoke with us for this article are speaking about their own experiences and beliefs, and not on behalf of the agencies they work for.]
The right choice for the patient
When a person gets to the very end of life, Dr. Tom Ziobrowski of Kingdom Internal Medicine said that it’s “pretty easy” to suggest that more treatment might not be useful.
“It’s just hard to tell when you’re at that point,” he said. “Except for maybe the last week or two, how to tell how somebody is doing. You can tell sometimes. But you don’t want to take away hope.”
Occasionally, he said, he encounters people who are sure enough of themselves that they choose to end treatment early.
“There’s a woman who is a good friend of ours who is in her 60s and had lung cancer,” Ziobrowski said. “She started chemotherapy and just said after the first week, ‘I’m not doing this anymore.’ Which was kind of nice to hear. She made her choice, and it was the right decision for her.”
Changing the conversation
For 30 years, Dr. John Koella was a primary care doctor in Saratoga Springs, New York. He considers himself one of the last “old country doctors.”
A few years ago, he came to the conclusion that his type of family practice was no longer viable and moved to his current “pre-retirement job” as a hospitalist at NVRH.
As a hospitalist, he is on the hospital floor seeing and treating patients after they have been admitted.
“We have a lot of 90 year olds. Yesterday I had a 92-year-old, a 93-year-old, a 92-year old, and two 89-year-olds,” he said. “We have all these older people who would never have been here 30 or 40 years ago, they’d have been long gone. But we’re better at keeping them alive.”
Our technology has outpaced our ability to talk about the ramifications of the technology.
Koella said that it’s not yet acceptable to ask people “How do you want to die?”
And yet, he said, it could greatly improve some people’s quality of life to have those conversations.
“When somebody goes on dialysis, in my opinion, it would be nice if culturally it was acceptable to start talking about, ‘You know, you’ve lost one leg, you’re going on dialysis, you’re going three days a week to spend all day at dialysis. It’s hard work just staying alive. You have to bust your butt doing all this stuff, taking all these pills just to stay alive … When do you want to stop working at living?’”
That discussion, he said, frightens people.
“I’ve been in situations where I clearly understand that somebody is ready to die. Just the way their feet are pointing,” he said. “But they’re embarrassed to say the words. Or when they do say the words, ‘I’m really tired of this, I don’t want to live anymore,’ people panic. Everybody runs around. ‘Oh no! Grandpa, we’ll come over more often!’ It’s not part of our cultural context to have that discussion.”
Occasionally Koella will see this and say something to the family. That usually leads to everyone being upset with Koella – the family is upset at him for speaking the unspeakable, and the dying person is upset at him for upsetting the family.
“When you talk to most people, almost everybody says, ‘I don’t want to struggle at the end,’” he said. “But it gets all bolluxed up.”
“We need a much better cultural context to have that happen much earlier in life, where it gets to be okay to have that discussion,” Koella said. “You’re going to die from something, so let’s just talk about it. Let’s have the discussion.”
The problem right now, according to Koella, is that the conversation is primarily being initiated by people in the medical arena. Cultural change is often initiated through the arts.
“It’s a desperate need for literature, art, theater – we need plays that bring people around to this discussion of, ‘Don’t be selfish. Think about the needs of your loved one,’” he said. “Make it okay for Grandpa to say, ‘Actually, I’m not having any fun. I love all you guys. But another year of life isn’t going to add anything to what I’ve already got.’”
It seems almost unbelievable – today is the first anniversary of my mother’s death.
It feels like the longest year of my life, and also like the blink of an eye since we were last sitting around the dinner table laughing.
There were problems with the care Mom received at the end of her life. Because I’m a curious person, this led me to wonder: how could it have gone differently?
I hatched a plan – spend a year looking at our death care systems and how we care for our loved ones as they die. What better options could we have pursued? What resources were available that we didn’t know about? And what parts of our experience were symptoms of a broken system?
It is much to the credit of the publisher, editors and advertisers of this newspaper that I have the time and the space to follow these inquiries. They have given me free rein to follow my nose wherever it takes me – and even I am surprised by some of the places we have gone.
People frequently ask me if writing this series is difficult for me because it means thinking about her death so frequently. It’s quite the opposite – this series has given me an outlet to work through some of my grief. It has allowed me to set aside my anger at specific things for a few minutes and look at the bigger picture. In doing so, my grief is manageable.
Even if I can’t retroactively change my mom’s experience, I hope this series is opening some avenues of exploration for you, dear reader. I hope that it gives you new ways of thinking and talking about the end of life. I hope that it gives you the courage and confidence to speak up for yourself and your loved ones in ways that we didn’t know we could.
We are a bit past the halfway point in this series. There is so much still to explore, and I’m looking forward to all of it.
Thank you for joining me on the journey.