I always knew my mom was sick. I knew she went to the doctor a lot, sometimes multiple times a week, and that every day, she took pills from the orange bottles that lined our kitchen cabinet. But until she died in 2009, I assumed my mom’s frequent visits to the ER and our family doctor were par for the course for someone with Addison’s disease, a rare adrenal gland disorder.
Last year, to process my mom’s illness and death, and to understand my own risk for her disease, I ordered a copy of her medical records from her primary care physician. What I found astounded me: Visit after visit, my mom would show up at the doctor with an array of symptoms, from headaches and stomach pain to muscle strains and bone injuries. No matter what was wrong, she’d leave with a prescription for an opioid like Oxycontin or a benzodiazepine like Xanax.
To this day, I wonder why and how this happened. Maybe the doctor’s intentions were good, and he just didn’t know how to treat her complicated illness. But did he consider whether his treatment approach truly helped her live a better life? Did he think about her teenage daughter in the waiting room? My mom was more than a set of chronic pain symptoms. She was a wife and a mother, and a woman with interests and passions and future goals. When she became addicted to pain medication, she lost it all.
I thought about my mom’s battle with opioids when I read a recent op-ed on the concept of patient flourishing. The article, written by Harvard researchers and published in JAMA, makes a fairly straightforward argument: Too many clinicians approach patient care with an “anti-disease” mindset, spending most of their time and energy monitoring health metrics, such as blood pressure, and alleviating symptoms. But the ultimate goal of care should be maximizing patient well-being, the paper says, not merely fighting sickness.
How can doctors do a better job promoting patient well-being? According to the Harvard team, they can make patient “flourishing” the primary goal in treatment decisions. Flourishing is a multifaceted measure of wellness that accounts for physical and mental health, as well as happiness, life satisfaction, purpose and meaning, character and virtue, social relationships, and financial security. Essentially, by making a conscious, systematic effort to learn more about patients’ personal lives, doctors will be better equipped to assess the benefits of different treatment options.
I don’t know exactly what flourishing looks like for every patient with a serious, poorly understood illness. But I know it doesn’t look like the life my mom led and then lost.
“The idea of flourishing is important when physical health and years of disease-free survival might come into conflict with quality of life, or being able to continue working, or with relationships,” says one of the op-ed’s authors, Tyler J. VanderWeele, an epidemiologist at the Harvard T.H. Chan School of Public Health and director of the Human Flourishing Program at Harvard University. “In those cases, physical health may be in tension with happiness, or purpose in life, and it is important to weigh those tradeoffs.”
For example, if a patient experiences occasional but severe mental illness symptoms, should they take medication that would alleviate their symptoms but most likely cause gastrointestinal distress? What about medication that would interfere with cognitive skills essential to their job? Or a form of behavior therapy that’s promising but time-intensive and expensive? The best treatment plan for a single parent finishing out their college degree might not make sense for a childless research scientist. The details matter.
In a way, VanderWeele and colleagues aren’t proposing anything new or radical. A flourishing-driven approach to care jibes with the definition of health articulated more than 70 years ago by the World Health Organization: “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” It’s hard to imagine anyone sincerely objecting to the idea that quality of life should be an important consideration in treatment decisions.
In practice, however, clinical guidelines aren’t always conducive to flourishing. In 1996, the American Pain Society introduced the concept of pain as the “fifth vital sign.” By establishing a goal of “zero pain,” the campaign effectively encouraged doctors to do whatever they could to help patients lead pain-free lives. That same year, the pharmaceutical company Purdue Pharma began vigorously marketing the painkiller OxyContin to doctors, (criminally) misrepresenting the drug as a “less addictive opioid.” By the early 2000s, the FDA noted a substantial uptick in reports of prescription painkiller misuse. And we all know what happened next — an opioid epidemic swept over the country, derailing and ending American lives in record numbers.
I don’t know how close my mom ever was to “zero pain.” But I do know she was far from happy, or able to function, once she became addicted to pills. I don’t know exactly what flourishing looks like for every patient with a serious, poorly understood illness. But I know it doesn’t look like the life my mom led and then lost.
Some doctors have made it their mission to leave the “zero pain” campaign in the past. “We have an entire generation of physicians who have been taught to treat the pain score, when treating the causes of pain is really the way to achieve flourishing,” says Stephanie Vanterpool, director of comprehensive pain services at the University of Tennessee Medical Center. “If we are able to accurately identify and treat the cause of pain, we can help patients improve their function and quality of life, and many times, we don’t even have to use an opioid to do that.”
“Sometimes what we need to do is accept limitations. We can still flourish living with our illnesses.”
Vanterpool’s approach, called Targeted Pain Treatment, provides a framework for doctors to consider four possible causes of pain — anatomical, physiological, functional, psychosocial — and in turn, treat patients more quickly and effectively with the right combination of localized injections, pain medication, physical therapy and mental healthcare.
Flawed approaches to pain treatment aren’t the only barrier to flourishment-driven care. Another issue is time, according to Keith Humphreys, professor of psychiatry and behavioral sciences at Stanford University. “That’s just part of the assembly-line nature of American medicine,” Humphreys says. “You come in in the morning for primary care and there are already 30 people booked, and then you have walk-ins. So even if you want to, there may not be time to find out more about the person.”
Humphreys suggests incorporating more healthcare providers who aren’t physicians into primary care. “Some clinics or hospitals bring in clinicians who have more time, like a psychiatric nurse or a behavioral health specialist, after seeing a doctor,” he says. “You can talk to these people about your struggles, and they can get a little more perspective on your life as a whole.”
Still, to make flourishing an achievable goal, patients might need to recalibrate some of their attitudes too. For instance, a patient with chronic nerve pain or a recurrent injury might need to give up the expectation of a zero-pain life.
“There’s something in American life that doesn’t quite want to deal with the thought that not all problems are technically fixable, and that you can’t always be all you can be and have it all,” Humphrey says. “Sometimes what we need to do is accept limitations. We can still flourish living with our illnesses.”
These kinds of big changes are possible. They require personal work, but they also demand systemic overhauls. In 2017, my home state of Wisconsin enacted a prescription drug monitoring program, requiring doctors to review a patient’s records before prescribing medications like narcotics. The same year, the U.S. Department of Health and Human Services issued $800 million in grants for opioid addiction treatment and recovery, which supports the research of non-addictive alternatives for pain treatment. And just this year, the Centers for Disease Control and Prevention designated $475 million to fund state-based overdose prevention efforts.
A decade after my mom’s death, I keep wondering how things would have gone if her doctor had helped her accept her pain. What if she’d sought out mental healthcare, instead of relying on painkillers to get through the day? Would she still be here, playing with her grandkids? I also wonder about myself. I suspect, for me, flourishing means doing the best I can to live in the present moment — even if it comes with a little bit of pain.