By Pat Anson, PNN Editor

Overzealous enforcement of opioid guidelines has led to a significant decrease in opioid prescribing to terminally ill patients being admitted to hospice care, according to a new study that found some dying patients may have had their pain undertreated.

The study, led by researchers at the Oregon State University College of Pharmacy, looked at prescription records for over 2,600 patients discharged from hospitals to hospice care from 2010 to 2018. Nearly 60% of the patients had a cancer diagnosis.  

In 2010, researchers say about 91% of the patients were receiving opioids for pain at discharge to hospice. But by 2018, only 79% were getting opioid medication.

The goal in hospice care is to minimize the suffering of dying patients and to maximize their comfort and quality of life. Patients in hospice or palliative care are generally exempt from federal and state opioid prescribing guidelines.

"Indiscriminate adoption or misapplication of these initiatives may be having unintended consequences," said lead author Jon Furuno, PhD, an associate professor and interim chair of the Oregon State Department of Pharmacy Practice. "The CDC Prescribing Guideline and the other initiatives weren't meant to negatively affect patients at the end of their lives, but few studies have really looked at whether that's happening. Our results quantify a decrease in opioids among patients who are often in pain and for whom the main goal is comfort and quality of life."

The CDC’s opioid guideline specifically says it is “not intended for patients undergoing active cancer treatment, palliative care, or end-of-life care.” But in practice, many of those patients are being forced to follow the CDC’s recommended daily dose limit of 90 morphine milligram equivalent (MME). Some get even less.  

“I'm a cancer patient on palliative care and being forced tapered off to 20 mg when I was on 100 mg for 20 years and working, taking care of my family and myself. Now I'm in bed all day in severe pain,” said one patient who responded to PNN’s recent survey on the CDC guideline.

“My daughter is in palliative care and been on 330 MME daily for 8 years. Now her palliative care doctor wants to force taper her to 50 MME a day because he says the state is changing rules,” a mother told us. “She’s terrified of being forced to taper. I’m going to lose my daughter because she can’t be in intractable severe pain. It’s inhumane and cruel to do to a patient who is never going to get better and has a degenerative condition.” 

“I have stage IV metastatic lung cancer, it is terminal.  I have gone months without pain medication after being jerked off medication completely. I have struggled to find a doctor to treat my pain,” another patient told us. “I am in total shock that cancer patients have to suffer like this. These guidelines have terrified doctors. If they’re too scared to treat cancer pain, what pain will they treat?”

According to Furuno, more than 60% of terminally ill cancer patients have "very distressing pain.” He and his colleagues found that while opioid prescribing declined for patients heading into hospice, there was more prescribing of less potent, non-opioid analgesics.

"Sometimes non-opioids alone are the best choice, or non-opioids in combination with opioids," Furuno said. "But it's important to remember that non-opioids alone are also not without risk and that delaying the start of opioid therapy may be delaying relief from pain.”

The study findings were published in the Journal of Pain and Symptom Management.