Why Doctors Recommend Ongoing Treatment At The End Of Life
By Leah Carey
Nov. 8, 2016
Frank Metzke had been going through cancer treatment for “quite a while,” according to his wife Linda Metzke, when the cancer markers started going up precipitously.
“And it wasn’t going down,” Linda said, “The chemo he was on, which was oral, was not working.”
His doctors recommended a different type of chemotherapy. “It was a very difficult infusion,” Linda said. “He would be really, really, really sick for two weeks. Then he’d have a good week, and then it would be another infusion.”
After two months of this, Frank asked the doctor how much longer it was likely to go on. They knew he didn’t have long to live.
Three months, the doctor said, maybe four.
“How much time if I quit the treatment?” Frank asked.
The treatment will give you about six more weeks, the doctor responded.
“And Frank said, ‘Then I don’t want to do this anymore. On the week that I’m okay, I can do my fishing, I can visit with friends. I don’t spend the time sitting on the floor in the bathroom,’” Linda remembered.
When Frank left the room for blood tests, the oncologist turned to Linda and said, “If you loved your husband, you would encourage him to continue.”
“And I said, ‘It’s because I love him that I’m listening to him,’” Linda said. “Would six more weeks and a lot of being sick have helped? … It took me a long time to get over him saying, ‘If you loved him.’ It makes you feel guilty.”
Since Frank’s passing in 2003, Linda has heard many similar stories of pressure from doctors to continue aggressive treatment.
Recently she accompanied a close friend to an oncology appointment. “She said she wanted to stop and the doctor started [trying to convince her to continue],” Linda said. “She turned to me and said, ‘You’ve got to help me here, Linda.’”
The physician’s decision
While the type of guilt that was placed at Linda’s feet is hopefully an extreme case, her story raises some important questions: how do doctors weigh decisions about recommending ongoing treatment vs. stopping treatment in terminal cases? What conscious and unconscious factors go into those recommendations?
To take a deeper look at these questions, we spoke with doctors who have spent time looking into this area and publishing their findings.
This week, we feature Dr. VJ Periyakoil, director of the Stanford Palliative Care Education & Training Program, published Do Unto Others: Doctors’ Personal End-of-Life Resuscitation Preferences and Their Attitudes toward Advance Directives at the online medical journal PLOS ONE in 2014.
Prolonging life, not death
“I am fundamentally a geriatrician, so I’m all about longevity,” explained Dr. Periyakoil in a recent interview. “The issue is when are you prolonging life? … What you don’t want to do is prolong the dying process.”
In other words: “If someone is living, you want to do everything you possibly can to increase life with quality and maintain it. But if someone is dying – and they’re connected to multiple tubes and they really cannot come back to where they used to be – and in the meantime the family is stressed and burdened and they’re afraid to make decisions by themselves, how can we as doctors help families like that?”
In her work, Periyakoil has identified several factors that lead physicians to recommend ongoing treatment or extreme measures beyond the time when they might be useful.
Attachment to patients
“The closer we are to our patient, the less our ability to be objective,” Periyakoil said. “If I really like my patient and I’m connected with them, I want them to live longer … It’s just like family, right?”
The optimism bias
“We tend to be more optimistic than not,” said Periyakoil. “I don’t want to lose them, and therefore I’m more likely to hang on to the hope that if I treat them with something new, they might live a little longer.”
In fact, Periyakoil even uses the “L” word about doctors. “They get to love you. And they want you around,” she said. “So in that sense we have the optimism bias.”
“The first thing I will say is this: no one has got bad intent,” Periyakoil said. “People that I know who are in health care are there because they care very deeply. There are very better ways with less time investment of making a good living, so people don’t come in with the specific goal of doing poorly-intended treatments toward anyone.”
With that said, our current medical system is set up in a way that favors action over contemplation.
“You do a certain thing, you’re given a certain amount of money,” she said. “The system is subliminally rewarding doing instead of rewarding ‘Let’s press pause and see where we are’ … There is no provision for that kind of planning.”
“It’s not that there are bad actors in this, it’s a bad script,” Periyakoil said. “What can we tweak in the system?”
What to do?
Having insight into why a doctor might push for continued aggressive treatments is useful, but what happens when you are sitting in Linda Metzke’s chair?
How do you respond to a doctor who is pushing for intervention when you know that your loved one is ready to stop the poking and prodding and accept that they are in their final days?
Periyakoil is an advocate of thinking about this in advance and writing a letter to your doctors to let them know what is important to you.
She has helped to found the Stanford Letter Project (https://med.stanford.edu/letter.html), which leads people through the process of creating a letter to help their physician understand what is most important to them.
“I have dear patients who have real estate in my heart … some of them just stay with you. And I find that their care is so fragmented and you see them at one end suffering from things that we could have helped them,” she said. “That is one of the reasons why I went along this path – to help patients have a better dialogue with their family and to talk with their doctors.”
When it comes to dying, we can’t always be in “go mode.”
“I’m talking about knowing when to stop. We know when to start very well, and we are programmed and primed to do that for very good reasons. But we also need to know when to stop,” Periyakoil said. “You can just have a car with an accelerator, you have to have a car accelerator and you should brake when you need to, too.”
When the clock struck midnight bringing in the year 2000, I was blessedly unfamiliar with death. In the following 13 months, that would change significantly.
First, in November 2000, my 59-year-old father died of a massive stroke. It was swift and unexpected and he was dead by the time he was found, so there was no need for anyone to make medical decisions on his behalf.
Six weeks later, my 86-year-old maternal grandmother went into a Tennessee hospital and never came out again. In her case, there were many decisions to be made.
I had visited my grandmother a few months earlier and taken note of how little she was eating. Always one to keep a bottle of TUMS at hand, her mentions of heartburn weren’t unusual, but they were more frequent.
But she was busy taking care of my grandfather, who was in failing health, and would have been loathe to draw attention to her own health issues.
By the time she was admitted to the hospital, they told us that the cancer had invaded her entire chest cavity. It was so advanced that they couldn’t even be sure where it had started.
Perhaps in those first few days, chemotherapy made sense. Perhaps they thought they could buy her a few extra weeks, even months. I don’t know – I wasn’t privy to those conversations. But I can imagine that my grandmother would have chosen anything that would extend the time she had with her grandchildren and great-grandchildren. I can excuse the first round of chemo as a Hail Mary.
It’s the second round of chemo that I still have trouble forgiving, even 15 years later.
I can’t imagine that anyone could have looked at my grandmother in those final days – her body a shell, her eyes with no life in them – and thought that pumping poison through her veins would serve any useful purpose.
And yet, that is the decision that was made. Another cycle of chemo was ordered up and administered.
It seems like the ultimate cruelty – that round of chemotherapy was not given FOR her. It was given IN SPITE OF her. It was given for the doctors who didn’t want to give up, for the family members who didn’t want to admit that she was going to die.
I can’t help but think that in trying to save my grandmother, they were actually torturing her.
Last year, I saw the cancer scenario play out in a very different way with my mother.
We were sitting in the oncologist’s office, post-recurrence, and looking at numbers that weren’t going the right direction. Unlike her first time through chemo, which had gone relatively easily and put her into remission, the post-recurrence chemotherapy was brutal on her body. And it wasn’t working.
Our oncologist, Dr. Liu, was offering us other chemotherapy options, but Mom had already been thinking about the risk/reward trade-off. I knew she was considering the possibility of refusing chemo and living out the rest of her life without the punctuation of intense sickness and side effects caused by the treatments.
She asked Dr. Liu, “How much will the treatment get me?”
Maybe a couple months.
“What would you recommend if I were your mother?” she asked.
I believe that my mom was one of those people who, as Dr. VJ Periyakoil said, had real estate in Dr. Liu’s heart. There was just the hint of a smile on her face – but not in her voice – when she said, “I’d want as much time for her as possible, but I’ll support any decision you make.”
My mom chose to forgo the chemo. She chose to live life on her own terms. And one of the great blessings of having Dr. Liu as our guide through the process is that she respected the courage it took my mom to make that decision.