What Do Doctors Want At The End Of Life?
By Leah Carey
Dec. 6, 2016
In the past two editions of Living With Dying, we have looked at factors that encourage doctors to recommend aggressive treatment in cases with terminally-ill patients.
Our two experts, Dr. VJ Periyakoil and Dr. Peter Ubel, cited examples of both external pressures (fear of litigation) and internal beliefs (an optimism bias that perhaps they’ll be able to pull out a miracle) on doctors.
This raises the question: What do doctors want for their own end of lives?
If a doctor received a terminal diagnosis, would they want the same aggressive treatments that are widely recommended to patients?
To look at this question, we distributed a survey to three health care agencies in our coverage area: Northeastern Vermont Regional Hospital in St. Johnsbury, Vermont; North Country Hospital in Newport, Vermont; and Ammonoosuc Community Health Services in Littleton, New Hampshire.
The survey was anonymous and non-scientific. We received 35 responses – not enough to make broad, sweeping conclusions, but enough to provide startling results.
The survey asked three questions, each providing the same treatment scenario: a patient has been diagnosed with a terminal condition. Without treatment, statistics say they have approximately 6 months to live, during which they will be able to fully engage in life. With treatment, they have approximately 9 months to live. The treatment has side effects that will affect their ability to fully engage in life.
The difference between the three questions is the doctor’s relationship to the terminal patient: in scenario 1, it is a patient in their practice; in scenario 2, it is their closest loved one; in scenario 3, it is themselves.
In scenarios 1 and 2, the doctors had the option to recommend treatment, recommend against treatment, or explain both options equally and not make a recommendation. In scenario 3, they could either choose treatment or choose no treatment for themselves.
When dealing with a patient in their practice, 76 percent of the doctors said they would explain both options equally without making a recommendation. The remaining 24 percent said they would recommend against treatment. No one said that they would recommend for treatment.
One physician echoed a frequent sentiment, “As a physician my job is to prepare and explain options to patients. My goal is not to make decisions for patients but to provide enough information for the patient and their family to make an informed decision.”
When dealing with their closest loved one, the number who would explain both options equally dropped precipitously to 44 percent, while the number who would recommend against treatment rose to 56 percent. No one said that they would recommend for treatment.
While the doctors are still ambivalent about making direct recommendations, when a loved one is involved, they are significantly more likely to suggest that treatment is not a preferred path.
One respondent noted, “I would not recommend treatment over not treatment to a patient. They may want what ever time they have. I would give them both options. To my family I would want them to have the fullest life possible and not to suffer.”
When looking at their own mortality, a staggering 91 percent of respondents said they would choose no treatment. Six percent (2 respondents) said they would choose treatment for themselves, and one respondent did not answer.
One respondent wrote, “Most physicians with pancreatic cancer close their practices, no surgery, no chemo, enjoy what life they have left.”
What accounts for the health-care providers’ near-universal rejection of end-of-life treatment in our survey?
Dr. John Koella, in particular, had a wealth of insight on that subject.
Although the survey was anonymous, a handful of doctors offered their names for further conversation. Koella, a hospitalist at NVRH, was one. [Editor’s note: The doctors who spoke with us for this series are speaking about their own experiences and beliefs, and not on behalf of the agencies they work for.]
On his survey response, Koella wrote, “The reason the patients trust us is that they presume we have experience in this scenario that can provide insight. In my opinion those of us with the most experience with end of life decisions don’t have much uncertainty about the correct course of action.”
Koella has spent close to 30 years in medicine, the majority spent in a “country doctor” type of practice in Saratoga Springs, New York.
“If you’ve been exposed to death and dying and suffering and disease … it somehow alters you,” Koella said in an interview last week.
He has joked with a friend who is an anesthesiologist that when his time comes, his friend should put him to sleep so he never wakes up. He has joked with his wife that when his time comes, they should go on a cruise and she should push him off the back of the ship (she does not find it funny, Koella said). He sympathizes with another doctor friend who jokes that when his time comes, “There’s always Smith & Wesson.”
But they’re not really jokes.
What does that say about our medical system if our medical providers don’t want to be in the system?
“You’re right,” Koella said ruefully. “That comment, ‘Wear a Smith & Wesson’ means I don’t want to be cared for in the system that I’m a part of. You’re right for calling me on that.”
And, he noted, that his generation of doctors who were trained as generalists, and are thus able to treat a wide variety of issues, are retiring. The younger generation of doctors are largely being trained as specialists, so there are very few people with broad knowledge about the entire human body.
“Where are we going to go for care? It frightens me. That’s why I’m going to call my friend who’s the anesthesiologist to take care of me. I’m not even kidding about that. The way the current system is now, it’s not very good,” Koella said.
“It frightens me to be plugged into it. So, like many of my peers when I talk to them over a beer, we’re mostly talking about being external, not being roped in.”
When I go into a computer store, I want to know that the computer technician is significantly more experienced with this equipment than I am. Since I know so little, I want to be able to trust that his or her experience is guiding the recommendations they make.
Same with a mechanic.
Same with a doctor.
They each deal with machines that I rely on tremendously, but know very little about. And whether it is my computer, my car, or my body, I gain comfort in knowing that the expert I’m speaking with has seen and experienced a lot more than I have. They have a depth of understanding about the intricacies of that machine that I couldn’t hope to achieve for one basic reason: it takes years of day-to-day interactions to know that machine from the inside out.
When I created this survey for our local medical providers, it was with an eye to learning how they view aggressive end-of-life treatment from the inside out.
As a consumer, it is distressing to learn that our small sample almost universally does not want to receive the same types of treatment that their patients are regularly receiving.
There is an argument to be made that this isn’t an apples-to-apples comparison. In order to keep the survey short and quick (and thereby maximize responses), we didn’t ask questions about how often the respondents are having end-of-life care conversations with their patients. It is possible that the people who responded most consistently that they would recommend against treatment and choose no treatment are not actually making recommendations to patients.
For instance, you may have had a long-time relationship with your primary care physician, and feel confident that they are on-board with what is most important to you. But if you are a cancer patient, you may go for extended periods without seeing your PCP because your care has been siloed in the oncology unit.
But it’s hard to imagine any medical specialty that doesn’t, at least occasionally, deal with terminal patients.
So consider the tone of some of the notes on the survey:
“As a doctor I am witness to what patients suffer when undergoing treatment. Patients are not always fully aware of what that entails.”
“To my family I would want them to have the fullest life possible and not to suffer.”
“In our health care system, there seems to be an emphasis on ‘more is better’ when it comes to treatments and interventions. There is also fear of litigation, which I think sometimes pushes providers to ‘do’ more.”
“Teaching courage to face the end is personal. Doctors cannot easily keep out their own bias.”
What does it say about our medical system if our medical providers don’t want to be treated within the system? It’s a question I keep coming back to over and over.
There is something fundamentally broken if our doctors don’t want to receive the end-of-life doctoring that they are providing.
If you are interested in more on this topic, I highly recommend Dr. Ken Murray’s 2011 essay “How Doctors Die: It’s not like the rest of us, but it should be” on the Zocalo Public Square website.