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The Doctor Patient Forum is a non-partisan, community-based organization that works to support pain patients and their providers with access to lifesaving pain relief and to mitigate the harmful effects of efforts to curb liberal prescribing and overdose. With a focus on disabled people, those with chronic pain, and providers who work with them, DPF provides information, practical tools, and policy analysis to strengthen patient-centered safe and appropriate medical support and advocates for approaches that reduce increasingly common suffering and death resulting from non-consensual medication reduction or termination of care.
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In 2014, one of Anne Fuqua’s best friends died from a heart attack in his early thirties – after his doctor stopped prescribing the opioids he’d taken to control chronic pain.
Fuqua, who lives in Birmingham, suspected a connection that sent her on a quest. She began collecting names of long-term pain patients who died after they stopped taking prescription opioids.
“I was shocked at how many were committing suicide, but then I thought, gosh, I would probably do the same thing if it was me,” Fuqua said.
The number of opioids prescribed in the United States has fallen since 2012, and federal regulators have created guidelines to limit the length and dose of prescriptions following a surge of overdose deaths in the 2000s. Although crackdowns on pain doctors are supposed to improve safety, patients like Fuqua said it has created suffering for stable opioid patients who suddenly find themselves unable to get medication. The combination of uncontrolled pain and withdrawal can push some patients to the edge, Fuqua said.
Fuqua began taking opioids more than 20 years ago. The former nurse suffers from a condition called dystonia, which causes involuntary muscle jerks. Even though opioids aren’t usually used to treat the disorder, they worked for Fuqua, who got her first prescription during a bout with kidney stones.
“Over the course of 15 to 20 minutes I went from being a shaky, jerking mess to being able to sit up straight,” Fuqua said. “It was like something just turned off the dystonia in my brain.”
Fuqua connected with Dr. Stefan Kertesz, a physician at the University of Alabama at Birmingham and the VA who treats veterans who have struggled with homelessness. Now he’s launched a study to determine whether ending opioids can contribute to suicides.
Kertesz and his co-investigator Allyson Varley, with funding from the University of Alabama at Birmingham, is seeking families who have suffered suicides in pain patients who lost access to prescription opioids. He said it’s an area that needs more study, so doctors can better understand how to avoid harming patients.
“When we see patients die in ways that involve our care, we are obligated to dive in and investigate it,” Kertesz said.
Kertesz has argued that some patients on high doses of opioids don’t need to change doses that exceed federal guidelines. In some cases, that could cause more harm than benefit, he said.
Other researchers aren’t so sure. Dr. Anna Lembke is professor of psychiatry at Stanford University School of Medicine who has written two books about the prescription opioid epidemic. Lembke also created a guide to help doctors reduce opioid doses in patients taking large amounts for chronic pain.
Lembke said opioids cause side effects that range from bothersome to deadly. Patients can suffer constipation, sleepiness, depression, dependence and overdose. Long-term use can cause some people to become more sensitive to pain and have symptoms of withdrawal, she said. Many patients do better on reduced doses of opioids, Lembke said.
“Patients on opioids are much more likely to kill themselves,” Lembke said. “The opioids themselves have already been shown to be a risk factor for suicide.”
Kertesz said suicide is complicated and rarely caused by a single factor, but he has found an association between it and the end of opioid prescriptions in patients in the Veteran’s Administration system.
Fuqua said she has collected about 111 suicides on her own. She has identified another 500 potential cases from social media.
“I started out on my kitchen table with a bunch of obituaries,” Fuqua said. “And then it got too much for the kitchen table and they basically turned into wallpaper. And finally I got it all scanned into a Google Drive and a spreadsheet.”
Kertesz and his team hope to go beyond that spreadsheet, ultimately getting medical records and other documents to shed light on medication and mental health history. Before they can look deeply at cases, they must find families willing to come forward.
“People with long term pain and their family members are accustomed to stigma and being scorned,” Kertesz said. “Scorn and stigma has been heaped upon them by the medical profession and the media. But as someone in medicine, it’s on us to demonstrate that this is serious.”
Kertesz has advocated for changes to opioid prescribing and tapering guidelines. Lembke said that advocacy could bias the results of the study. By reaching out to families who have lost someone to suicide after a change in opioid prescriptions, he will be more likely to find people who blame the change in pain medication for the person’s death, Lembke said.
“They are advertising to families in a way that already infers that somehow the opioid taper led to the suicide,” Lembke said. “It’s inviting people who are already constructing a narrative around the opioid taper. By the way they are sampling the population, they are already answering the question.”
Lembke said the study should expand to include pain patients who have committed suicide without a change in opioid dose. Despite her concerns about the study, Lembke and Kertesz agree on several points. Some patients improve on lower doses of opioids, but others may not.
Kertesz wants to explore the cases of those who have suffered.
“We overprescribed, and we have now caused harm by trying to overcorrect,” Kertesz said. “If all of your focus on the excess of prescribing, then you will miss the harms of overcorrection.”
Lembke said too much focus on the harms of reducing opioids could cause some doctors to keep patients on dangerously high doses of drugs, even when they might benefit from a reduction.
“Sometimes it is better to keep someone on long-term opioids,” Lembke said. “But that’s not always the best medicine.”
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California's Death Certificate Project, in which physicians were investigated and sometimes punished after patients fatally overdosed, may have resulted in a terrible unintended consequence: More, not fewer, overdose deaths around the state.
New data culled from 2019 death certificates from the state's 58 counties add up to 2,666 overdose fatalities, versus 2,694 reported during 2012 and 2013, the first and only two years examined so far under the project. That's a 98% increase over the annual average for those earlier years.
"It represents almost a doubling of the death reports, so that obviously is a serious cause for concern," William Prasifka, who became the Medical Board of California's executive director in June. He said he plans to remodel the program. Additionally, the board investigations will now skip ahead five years and focus just on overdose deaths in 2019.
Prasifka presented the 2019 data and the program changes during the board's quarterly meeting Friday.
He said that while the board's analysts have not yet dug into the 2019 cases in detail, "there are some indications that there is a high percentage of the deaths which are related to street drugs," not drugs prescribed by physicians.
Now, board members are becoming introspective, with some wondering whether the overdose death rate was higher in 2019 in part because of the Death Certificate Project, which launched in 2015.
Doctors shamed
Many prominent physicians saw themselves publicly shamed as careless overprescribers over the past several years, prompting their colleagues to get so scared they abruptly refused to prescribe opioids again, even for long-standing patients.
That resulted in many, many patients who had depended on their doctors suddenly having to find non-medical sources, especially since pain management specialists -- already in scarce supply -- were getting slammed.
One of those introspective Medical Board of California members is Richard Thorp, MD, an internist in rural Butte County in northern California. He called the new data "eye-opening."
"It's increasingly difficult to find, as it has for the last several years, physicians willing to prescribe opiates," he said. "Just saying there's a reality for people who were denied medication [to] look for other sources, and some of those sources are extremely unsafe, of course."
Many patients were taken off their opioid narcotics abruptly, Thorp continued. They "become desperate and then many of them actually do go to the street to look for other sources of opioids rather than a more controlled way of getting medications," he said.
Thorp acknowledged that times have changed. Doctors mistakenly used to prescribe whatever pain medication a patient seemed to need. "That's clearly the wrong approach. And now we have this very restrictive policy where doctors are afraid to write pain medications because of the Death Certificate Project," Thorp said.
He noted that of the doctors earmarked for investigation, maybe 1% "were actually malignantly prescribing medications in a way that was unethical."
As part of the prior investigative process, the board sent surviving family members a letter requesting that they tell the deceased patient's physician to release his or her medical records to the state. The language in the letter implied that the board had concerns that the treating clinician used poor judgment.
A Witch Hunt
The Death Certificate Project outraged many physicians in pain management as well as those in primary care, some of whom labeled it nothing more than "a witch hunt" that required hours of their time and expensive attorneys' fees, fractured the doctor-patient relationship, and would hurt rather than help efforts to improve patient safety.
Besides, they argued, they were just trying to relieve their patients' pain as they were taught, that pain was to be considered "the fifth vital sign."
Speaking before the board, Yvonne Choong, MPP, a vice president of the California Medical Association, said letters the board sent to physicians were "highly stressful and disruptive" to their practices, leading to "fear and mistrust" of the board's disciplinary process.
She urged the board to work with independent experts in drug addiction to review how it picks out physicians whose prescribing is inconsistent with standard of care -- in particular, to identify risk factors that more accurately identify problematic prescribers.
The board also is looking at whether the yield from the Death Certificate Project was worth it. Out of those 2,694 overdoses identified from 2012 and 2013, the agency initiated 520 cases against 471 physicians out of the state's 145,000.
Some 75 accusations were filed against 66 physicians, 21 physicians received public letters of reprimand, and 20 physicians were placed on probation. Eleven physicians surrendered their licenses, including several whose accusations and lists of overprescribed medications took up nearly 70 pages.
Fourteen cases were closed because the doctor was deceased, and five of the physicians had already had their licenses revoked prior to the project.
Several consumer representatives urged the board to move ahead with the effort to punish doctors who overprescribe, but lamented that the board will skip investigations of deaths occurring from 2014 through 2018.
That leaves a five-year gap, "when overdoses will be overlooked, leaving a number of dead patients and grieving families without accountability," said Marian Hollingsworth. Consumer advocate Eric Andrist urged the board not to listen to Choong or the CMA. "Their concern is only for the poor little doctors who might get snagged for their wrongdoing, not for the huge patient safety protection that the Death Certificate Project provides to consumers in this state."
Renamed 'Prescription Review Program'
In a memo to the board, Prasifka wrote that all of the 520 cases "involve a great deal of work including obtaining records and then having those records reviewed to determine if possible violations occurred." He added, "just because a patient death occurred it does not automatically mean that a violation occurred. Some deaths were due to street drugs."
Board president Denise Pines reminded the board "that the original impetus or thought process" behind the Death Certificate Project "was that we would be looking for those physicians who were behaving badly across the state."
Perhaps, she said, the board should "modify or transform this program some way so that it's not just a disciplinary or enforcement program, but one where we can do some education of our constituent physicians, but also the public as well."
Thus, the project is getting a new name, the Prescription Review Program, or PRP, which is less inflammatory and "more positive" than the Death Certificate Project, and which, Prasifka said, "better captures the ethos and objectives of the program."
Prasifka said the agency has "learned from experience" and as the PRP gets going, will alter some of its processes, making sure that it conducts a "more robust" screening of cases before launching an official investigation.
In that way it can track what kinds of drugs the physician routinely prescribed, in what strengths, how frequently, for what reasons, and in what combinations with other drugs.
Now, the PRP will look to "the entire prescription profile of the physician" using the state's CURES database, which will address some of the concerns about how the board ran the project in the past.
Prasifka told MedPage Today that while the 2019 death certificates include many deaths related to street drugs, the board will henceforth investigate only those deaths linked to prescriptions written by physicians.
In the past, several physicians under investigation told MedPage Today that the triggering death occurred in a patient who died of suicide, drugs obtained from a different physician, or street drugs, but they had prescribed drugs for that patient months or years previously. That, they said, was grossly unfair.
