This winter, following a third back surgery, Katrina Short found that the oxycodone her primary care physician has prescribed for several years was no longer “taking all the pain away.”
In hopes of identifying the source of her chronic back pain and addressing it, Short, a 55-year-old Strafford resident who also has stage IV lung cancer, went to see a palliative care physician at Dartmouth-Hitchcock Medical Center.
Following a first visit, the doctor prescribed a fentanyl patch to be used in conjunction with the oxycodone pills, which are made from morphine and work to treat moderate to severe pain by binding to opioid receptors in the central nervous system.
But, at a subsequent appointment on March 3, after Short said she didn’t notice much of a difference with the fentanyl patch, the doctor “discussed concern for opioid addiction” and suggested she begin taking Suboxone, which contains a combination of buprenorphine and naloxone and is used to curb cravings for opioids, and then taper off the oxycodone, according to an “after-visit summary” he provided to Short.
“I’m not an addict,” Short said in one of a series of interviews with the Valley News in recent months. “I’m not going on Suboxone.”
Short said she feels the DHMC physician was “bullying” her.
Advocates for chronic pain patients in New Hampshire say that they regularly hear from hundreds of people like Short whose doctors are declining to continue to prescribe opioids for chronic pain or even in some cases for acute pain amid the ongoing opioid epidemic.
“It’s a very hard time for people who suffer with some pretty painful illnesses,” said Bill Murphy, a Manchester resident who is a member of the New Hampshire Pain Collaborative, a team of a few chronic pain patients and one doctor who have advocated for changes to opioid-prescribing rules since 2019.
In the worst cases, Murphy said, he’s aware of two people who have died by suicide after being unable to find treatment for their pain.
“It’s hard to believe that we’re doing this to people,” he said.
The physician who recommended Suboxone to Short did not respond to an email seeking comment. D-H spokeswoman Audra Burns said the Lebanon-based health system does not comment on individual patient cases.
“We do take strong exception, though, to the use of the term ‘bully’ in referring to any aspect of our care to any patient,” Burns said via email. “Our interprofessional team of palliative care clinicians provides holistic care designed to optimize quality of life for patients and families who live with serious and often life-limiting illnesses.”
She said D-H is committed to working with each patient to “co-design an individualized plan to optimally manage symptoms, including those times when opioids are required.”
Short acknowledges that after years of taking oxycodone she has likely developed a physical dependency on it, but she says that’s different than having an addiction. The National Institute on Drug Abuse defines a physical dependency as when a person’s body has adapted to the drug, while addiction is compulsive drug use despite harmful consequences. A physical dependency can exist without an addiction, but addiction often includes a physical dependency.
“This distinction can be difficult to discern, particularly with prescribed pain medications, for which the need for increasing dosages can represent tolerance or a worsening underlying problem, as opposed to the beginning of substance use or addiction,” according to NIDA’s website.
Short said she has always abided by the drug agreement she’s required to have with her doctor and that the urine tests required of her have never shown signs of her misusing the medication.
There “are people that do need pain medication,” she said.
The pain collaborative, to which Murphy belongs, pushed for state legislation included as part of a health care omnibus bill, HB 1639, last year that was aimed at altering opioid prescribing rules that were initially implemented in 2016 in response to the opioid epidemic.
Hundreds of people in the Twin States die each year from drug overdoses, most involving opioids. Last year alone, about 416 people died of drug overdoses in New Hampshire and 157 in Vermont, which has less than half the population of New Hampshire. In an effort to bring those numbers down in recent years, providers in both states have sought to reduce the quantity of opioids they prescribe.
The new rules, which still need to be approved by the Joint Legislative Committee on Administrative Rules, are expected to roll out as the state and the rest of the country is at a point in a cycle where it has restricted access to opioids in response to overuse, said James Potter, the CEO of the New Hampshire Medical Society.
“For the last year now, I think we’ve absolutely kind of hit that point where we’re starting to under-prescribe,” Potter said.
The new rules aim to find a middle ground between over- and under-prescribing.
“Any kind of analgesic, there’s the chance for misuse,” Potter said. “That’s what we’re trying to balance here.”
While under current rules, doctors and other prescribers are required to consult a specialist when a patient receives a 100-milligram-morphine-equivalent dose for more than 90 days, new draft rules approved in early May by the New Hampshire Board of Medicine in accordance with HB 1639 would remove those limits and instead leave the clinician with more leeway to determine the appropriate dosage and duration for each patient. They also expand the definition of what is considered to be chronic pain to include pain described as “intractable,” “high impact,” “chronic episodic” and “chronic relapsing.”
The new rules aim to direct physicians and other prescribers to use opioids “at the lowest amount necessary to control that pain,” Potter said. “They do have some latitude.”
Under the current rules, Murphy said he has sat in on appointments with patients and doctors who are in agreement about an appropriate treatment plan, but the doctor has said they can’t sign off on the use of opioid pain relievers due to the practice’s policy against prescribing them for chronic pain.
“In many ways, the doctors themselves are also in a tough spot,” he said.
Dr. Bruce Vrooman, the director of the section of pain medicine at DHMC, declined to comment on the new draft prescribing rules, but said that “with any category of medications, the patient and provider need to take into consideration functionality and quality of life, which are elements of the draft document adopted by the Board of Medicine.”
Vrooman said that patients and providers have to weigh possible side effects of any medication, including non-opioids, with the benefit they may provide. In addition, both parties need to be clear about their expectations for what the medications will do and how they will measure a patient’s progress.
Compared with 10 years ago, Vrooman said, “more patients are saying, ‘Please help me without opioids.’ ”
In palliative medicine, which treats patients with serious or life-limiting illnesses, the prescribing thresholds in the state’s current guidelines do not apply, so removing them will make no difference to the DHMC palliative medicine team’s opioid prescribing approach, said Dr. Amelia Cullinan, who directs the outpatient palliative care clinic at DHMC.
Cullinan said the palliative medicine team and their patients abide by the other safeguards to protect patients, including urine tests, assessing patients for their risk of developing an opioid use disorder, seeing patients often and signing agreements.
“In order to have a trusting relationship, those are the safeguards that we standardized,” she said.
(Neither Cullinan nor Vrooman have treated her, Short said.)
Dr. David Nagel, a Concord-based physician specializing in pain management and physical medicine and rehabilitation, said there are a range of factors that can contribute to people’s pain and it can be difficult to measure.
It’s “not like we have a meter on our forehead that tells people how much pain we’re in,” said Nagel, who along with Murphy is a member of the New Hampshire Pain Collaborative that pushed for the new opioid prescribing rules.
When a patient has been on a stable dose of medication for a long period of time and their pain changes, Nagel said the clinician has to assess what’s going on with the person, including their disease process, social issues and their mental health. It can’t be done in a five-minute visit, he said.
“So many factors play a role when you’re trying to figure out what’s going on with this individual,” he said.
Because insurance companies often reimburse providers at the same rate for a short or long visit, Nagel said most practices won’t allow doctors the time they need to do a full assessment. Some pain management groups in the state are moving away from opioid treatment entirely, he said.
Nagel said that doctors ought not to deny people access to opioids, but instead “maximize alternative options for care.”
Both DHMC doctors interviewed for this story said they take a “biopsychosocial” approach to addressing patients’ pain, ranging from medication and surgery to therapy and spiritual counseling.
“Frequently, our patient population has tried many medications, all of which/many of which have failed,” Vrooman said. “Many patients have lost hope and focus on pain and how debilitating it is.”
By identifying the root cause of a problem and treating it with an effective mode of therapy, doctors can help resolve the pain, restore mobility and function and “also restore hope,” he said.
Being treated as an individual is precisely what Short would like and what she says was missing in her March interaction with the doctor who said he was concerned about her having developed an addiction. Short met with that doctor in person twice; it was during the second session that Short said she felt he bullied her. She also spoke to him once on the phone, she said.
Rather than look at Short as a whole patient, in the midst of cancer treatment, who had cement inserted into her spine in December and who has previously had ribs removed as well as part of her lung, Short said, the doctor was focused solely on getting her off opioids.
“People need to know about these doctors,” Short said. “They have a protocol that they’re trying to follow up there.”
Short’s medical issues date back to 1990, when she was injured while working as a nurse’s aide in a nursing home. She developed thoracic outlet syndrome, which causes pain in shoulders and neck, as well as numbness in fingers due to compression of blood vessels or nerves in the space between the collarbone and the first rib. But it was at first misdiagnosed as another pain disorder, which delayed treatment, she said. She hasn’t worked other than odd jobs since that injury.
Now, her condition is further complicated by osteoporosis and the stage IV lung cancer, for which she is undergoing a second round of chemotherapy. Her husband, David, has left his job as a housekeeper at the White River Junction VA Medical Center in order to care for her. The two of them spend much of their time at home together with their dogs, Lucky, Lucy and Dudley.
As things stand now, Short takes 50 milligrams of oxycodone each day and wears a 100-micrograms-per-hour fentanyl patch. She spends much of her time on her couch, bed or in her bathtub, which she said “makes me feel weightless.” During an interview at a picnic table outside her Strafford home in April, Short was unable to sit at the table for more than a few minutes without having to stand up to relieve pressure on her back.
The pain is such that she has trouble eating. Last month, she weighed 107 pounds, but 21 days later she was down to just 101 pounds in spite of the her best efforts to put on weight.
“When I get the pressure pain, it makes my stomach turn,” she said.
If she needs to go shopping, she can make it to just one store per trip.
“I can’t go anywhere,” she said.
Short said doctors have also presented her with alternative medications including gabapentin, which is used to treat seizures and restless leg syndrome and which she is allergic to, as well as antidepressants. While she said she’s not opposed to taking an antidepressant, she doesn’t like when they are presented to her as a possible treatment for her pain.
“That makes you think that they’re not being honest with you,” she said.
Short said she is limited in the types of treatment she can pursue. Though she’s tried things like physical and occupational therapy in the past, “with the osteoporosis (there’s) not really anything that I know of outside of surgery and medication,” she said.
Since that March visit, Short has started seeing other doctors both in palliative care and in the pain clinic at DHMC. She now feels anxious before medical appointments, except for those for her cancer treatment because she says the providers in the cancer center are more responsive to her needs. The new doctors have conducted more tests, and an MRI revealed that the back surgery she had in December seems not to have worked, perhaps due to her osteoporosis, and may be contributing to her pain.
She now hopes she’ll be a good candidate for a pain pump, which would administer medication through a catheter directly into her spine. A psychological evaluation she had recently to help determine whether she’s a good candidate for that treatment went well and she is waiting to find out the next step, she said.
While she doesn’t expect her stage IV cancer will ever go away, she hopes the chemotherapy keeps it in check and the pain pump is able to better manage her pain. Should she get the pain under control, she’d like to get back to doing some of the things she enjoys, such as riding in the car with her husband, shopping, fishing and playing bingo.
Short also wants to go to Virginia to visit her mother, who is now 83. She hasn’t been down there since 2017.
At that point, four years ago, she said, “my pain was there, but not to this degree.”
Nora Doyle-Burr can be reached at ndoyleburr@vnews.com or 603-727-3213.
Correction
Dr. David Nagel is a Concord-based physician specializing in pain management and physical medicine and rehabil itation. An earlier versio n of this story incorrectly described his specialty.
