(Note: This guest piece was written by Lori Earnshaw, MD FAAHPM HMDC, Senior Hospice and Palliative Medicine Physician, Associate Clinical Professor, University of Louisville Department of Medicine. All opinions are the author’s own.)
Every day, I think about the patients I have seen in my practice of hospice and palliative care. You may be surprised to learn that most of them wish they had met me sooner. Their reflections are based on years of suffering in pain that was not adequately addressed by our healthcare system.
I remember a single mom who was one of my first patients. She had juvenile rheumatoid arthritis that caused joint destruction and resulted in chronic pain. Her primacy care provider prescribed methadone to treat her pain, and her rheumatologist managed her disease with methotrexate. She was able to enjoy a productive and relatively pain-free life, while she worked two jobs and supported her son.
House Bill 1 passed in Kentucky in 2012. While it targeted pill mills and attempted to shape safer prescribing practices, the unintended consequences were soon obvious. Prescribing opioids became more challenging.
My patient’s PCP moved out of state but assured her that her colleague would prescribe methadone for her. This promise would not be fulfilled. Her pain escalated, and she struggled to work and care for her son. A friend told her about a methadone maintenance clinic, where she went to find relief. The problem was that she did not have a substance use disorder and was turned away. She was wiser by the time she attended the second clinic, where she obtained methadone after claiming addiction in order to relieve her pain.
After a screening mammography demonstrated a suspicious mass, she received a new diagnosis: breast cancer. The pathology report identified triple negative breast cancer, which is one of the most aggressive types. She met me in the hospital after her first chemotherapy caused complications, and my colleagues weren’t sure what to do about her pain management, given her methadone treatment.
My consultation resulted in a year-long relationship with her as she rotated from hospital to clinic. One of the nicest complimentsI received from her was also one of the most heartbreaking: “I guess something good came out of my cancer diagnosis.” She was referring to the effective pain treatment and support she received from palliative care and later hospice care.
What makes patients so desperate for pain relief that they would view having cancer as a positive? As lawmakers, policy makers, healthcare professionals, insurance companies, healthcare organizations, and law enforcement attempt to tackle the opioid epidemic, they create a stigmatizing and inefficient labyrinth that is nearly impossible to navigate.
The problem seems to get worse, not better. When the CDC came out with their 2016 “guidelines for prescribing opioids for chronic pain outside of active cancer, palliative, and end-of-life care,” they triggered a cascade of poor decision-making from the C-suite to the bedside. Kentucky adopted one of the recommendations in April 2017, which limited opioids for acute pain to a duration of three days, with the same exceptions listed above.
I have been in healthcare long enough to know that “guidelines” often become “standards” and “policies” from which prescribers are fearful to waiver. I can assure you that the 90-year-old grandmother who falls and sustains a compression fracture from osteoporosis will not make a full recovery in three days, nor will the trauma patient who suffers an amputation. Chronic pain is created from inadequate treatment of acute pain. Common sense and experience make these “guidelines” seem absurd when interpreted rigidly.
More Americans suffer from chronic pain than heart disease, diabetes, and cancer combined. Chronic pain is the number one reason that Americans seek medical care and impacts 11% to 40% of the U.S. population. Chronic pain is a complex biopsychosocial phenomenon and is labeled as “chronic” when it occurs at least half of the days for six months or more.
While the use of opioids in treating chronic pain has been blamed as contributor to the opioid crisis, the evidence suggests that opioid use disorder in chronic pain patients is not as pronounced as one may expect.
In one analysis, consistent exposure to opioid therapy in chronic pain patients led to addiction in 3.27% of patients. In patients who did not have a current or past history of use, abuse, or addiction, the rate of abuse was only 0.59%. Of 801 patients treated with prescription opioids in a primary care setting, only 3.8% met the criteria for opioid use disorders. My patient belonged the majority of chronic pain patients who do not have or develop an opioid use disorder because they are using opioids appropriately to treat their pain.
What the opioid epidemic should highlight for all of us is the elephant in the room: substance use disorder. Restricting access to opioids cannot be the sole focus of curbing the opioid epidemic, and this strategy fails to make a significant impact.
The national CDC data on overdose rates involving opioids mirrors that of Kentucky. Despite the efforts of House Bill 1, there was an increase in overdose fatalities in 2016, with the largest demographic of opioid deaths being adults ages 35-44. Autopsy and toxicology reports from 2016 showed that 47% of overdose deaths involved fentanyl (up from 34% in 2015) and 34% of overdose deaths involved heroin (up from 28% in 2015).
A University of Kentucky study found that individuals in state-funded treatment had an increase in heroin use of 2.4% per year after House Bill 1 was passed. Until the same fervor that prompted us to address the opioid epidemic is applied to substance use disorder, we will continue to inadequately impact the suffering of both patients with pain and those with addiction.
I hope that we are open to learning the important lessons that my patients have taught me. While we must take action in curbing opioid abuse and deaths, we must also compassionately treat those with pain and substance use disorder. The approach must be multi-faceted and acknowledge the uniqueness of each population and practice setting.
Solutions should include:
- Identifying and mitigating individual risk factors
- Identifying patients eligible for palliative care and hospice much sooner
- Utilizing available resources for treatment of both pain and substance use disorder
- Improving education for pain treatment and referral to specialists
- Providing funding for research and training of pain, addiction psychiatry, and palliative care specialists
- Advocating for a holistic, team-based approach that includes social determinants of health and the value of all health profession disciplines
Congress has markedly increased funding for research into opioid misuse and pain, with the National Institutes of Health nearly doubling its investment in finding solutions. When approaches are tried and fail to demonstrate an impact, they should be phased out. I would recommend starting with onerous insurance prior authorizations and restrictions on the prescribing of opioids that consume resources in already stretched-thin physician practices.
The unintended casualties of tackling the opioid epidemic are people. They are our brothers, neighbors, mothers, grandmothers, and coworkers. I have met many of them in my practice of hospice and palliative care, and I hear the disappointment and anger that they feel in not being treated with compassion, not being heard, and suffering without relief.
We must change our approach to the opioid epidemic. Unnecessary pain and suffering are the enemies.