My mom was a steel magnolia (i.e., southern and perfectly charming), but she had a steel rod up her back. After her first surgery for stomach cancer at age 53, she refused pain medication because she said that she “could take it.” She was young and strong and committed to “beating cancer.” After nearly two years of chemotherapy, radiation and two more surgeries, the cancer won. Eventually, I watched her beg nurses to give her “a shot” minutes before another was scheduled and be told they were sorry but she would have to wait. I could tell by the expressions on their faces they truly were sorry.
Calls of Desperation
When the Center for Practical Bioethics began more than 30 years ago, I frequently had calls and letters from other family members telling me that an elderly loved one was dying in terrible pain and that the care team refused to give pain medication more often than scheduled or to increase the dose because they were told their loved one might become addicted and/or because a higher dose of morphine might affect the patient’s respiration and hasten death.
·ICU nurses regularly reported calling physicians and pleading for orders to increase pain medication only to be told, “Absolutely no and do not call again!”
·Physicians told me about patients who refused medication and suffered unnecessarily because they believed their pain was punishment from God and that their pain was “redemptive.”
·A case I will never forget involved a father who coaxed his son dying of bone cancer to “be a man” and refuse the pain meds his doctor had prescribed. The father, who adored his child and was deeply grieving his impending death, told me, “At least he will never be a junkie.”
·In one study of nursing home residents with cancer pain, nearly a third reported receiving nothing for their pain – not even Tylenol.
Progress and Problems
Efforts to address the under-treatment of pain in the United States led to more abundant prescribing of opioids and reduced suffering. At the same time, the rate of addiction rose dramatically, particularly addiction to pain medications, specifically opioids. Thousands of unintended deaths associated with these powerful drugs led to a well-organized national campaign to reduce their being prescribed.
Let me be clear, in some cases opioids have been prescribed too freely and physicians need much more training about when and how to prescribe them. I cringe when I hear about the dentist who prescribed a 30-day supply of OxyContin for a teenager who had her wisdom teeth extracted. My heart breaks when I hear about the young man who died of an opioid overdose a year after being given a prescription for pain meds after spraining his ankle in a football game and the young mother who was given Percocet after a caesarian birth, used them to help with the stress of a new baby and became addicted to them. These are tragic situations.
The opioid epidemic is a wicked problem, and it must be addressed. However, I believe that current efforts that focus almost exclusively on reducing opioid prescribing do not address the complexity of this problem and will have serious unintended consequences for those who struggle to live with chronic pain and even, possibly, those who are dying. Those were the concerns that caused me to speak out against the CDC Guideline for Opioid Prescribing for Chronic Pain published last year, which is, in my opinion, primarily an attempt to contain the opioid epidemic – NOT an effort to improve chronic pain care.
In recent months, stories have begun to emerge from people who live with chronic pain being told that their physician will no longer prescribe opioids or that their pharmacy didn’t have an adequate supply of opioids to fill their prescription. Last week, two things happened that caused me to write this blog.
First, Judith Paice, PhD, RN, and Director of the Cancer Pain Program at the Feinberg School of Medicine at Northwestern University, wrote the following email to me which I share with her permission:
This has been a horrible month for trying to manage pain. January is always “prior authorization” month, meaning I have to call and fight the insurance companies to get medications approved – working in oncology has always provided a slight advantage in that with some extra documentation, peer-to-peer review and conversations with medical directors, I could usually get the medication approved. Not this year. I could not get a patient with mouth sores and metastatic breast cancer a fentanyl patch. And an HIV+ hemophiliac who has been on OxyContin for 8 or 9 years was denied access despite receiving good relief without any aberrant behavior. Even long-acting morphine is being denied. And I have PCPs calling me to prescribe opioids for their patients “because the CDC guidelines prohibit them from doing so” (not true, but they are frightened).
Thank you and all on this email for all you do. We simply cannot return to our previous practice of withholding opioids except for the dying.
Second, I received a call from Jonathan, one of our PAINS Project Citizen/Leaders, a group of 50 people who live with or care for a family member who lives with chronic pain. Jonathan called to tell me that his insurance provider had refused payment for his pain meds which cost $3,500 per month.
Jonathan is one among many in his family who was born with HbS beta thalassemia, a rare form of Sickle Cell Disease (SCD). He is in his mid-to late forties and very close to his family, which owns and operates a home remodeling business. Currently, there are four generations in his family living with SCD, and Jonathan appears to me to be the patriarch of his clan. He is a tall, thin, handsome young man who is readily memorable for his boyish smile, the mischief in his big brown eyes, and his commitment to helping others. He limps; most often he wears a boot on his right foot, and sometimes he needs to walk with a cane. The cold weather exacerbates his pain, and his limp is worse in the winter months. He describes the pain in his joints like a “giant toothache” in whichever joint (or joints) is affected by platelets taking their revenge.
Access to and reimbursement for Jonathan’s pain medications will NOT solve his problems associated with Sickle Cell Disease. That requires a comprehensive chronic disease management program, including integrative pain care that includes opioids. Like most chronic pain sufferers, Jonathan’s situation is complex. It cannot be resolved with just an opioid prescription, but the meds help him to function.
A Wicked Problem
Simple solutions will not solve the opioid epidemic or the under-treatment of pain – two critically important public health issues confronting our country. Both are wicked issues.
In 2007, the Australian Public Service (APS) published a report on addressing “wicked” social policy issues. In a letter at the beginning of the report, then APS Commissioner Lynelle Briggs wrote,
“The Australian Public Service (APS) is increasingly being tasked with solving very complex policy problems. Some of these policy issues are so complex they have been called ‘wicked’ problems. The term ‘wicked’ in this context is used, not in the sense of evil, but rather as an issue highly resistant to resolution. Successfully solving or at least managing these wicked policy problems requires a reassessment of some of the traditional ways of working and solving problems in the APS. They challenge our governance structures, our skills-base and our organizational capacity. It is important, as a first step, that wicked problems be recognized as such. Successfully tackling wicked problems requires a broad recognition and understanding, including from governments and Ministers, that there are no quick fixes and simple solutions.”
We simply cannot allow people like Jonathan and the nearly 30 million Americans living with “high impact chronic pain” – pain that is disabling or those who are seriously ill and dying – to become collateral damage from policy efforts to contain the opioid epidemic. We need access to comprehensive pain care for all those who live with chronic pain and addiction.
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