History is repeating itself. Twenty years ago, a pain management crisis existed. As many as 70 percent of cancer patients in treatment at that time, or in end-of-life care, experienced unalleviated pain. Identified as a major medical problem, poor pain management became synonymous with poor medical care. In fact, prescribing adequate pain medication became mandatory for hospital accreditation.

The medications used to treat moderate to severe pain among people with cancer are the same opioids helping fuel today’s opioid crisis. Though it has turned a much-needed spotlight on the overprescription of these medications, it is overshadowing their underprescription among people who really need them, especially those with cancer. Two-thirds of individuals with metastatic cancer and more than half of those being treated for cancer report experiencing chronic pain, and 1 in 3 cancer patients do not receive medication appropriate for the intensity of their pain.

To get a sense of how people living with cancer are being treated for pain at a time when there is a growing stigma associated with opioid use, we reviewed 140 public posts on Inspire, the health social network we work for, written by 100 people with cancer and their caregivers. Although the writers spanned many cancer types, they primarily represented lung, bladder, and advanced breast cancer. In general, they described facing stigma from both health care providers and society in general.

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Some writers said their doctors now hesitate to prescribe opioids due to concerns over addiction. Restrictions on refills and their timing are barriers to consistent use of medications to treat pain. Many of the writers said they felt they were being treated like drug seekers when their pain needs are real and management is necessary. Their experiences with access were described as: “makes me feel like a druggie,” “I use a very low dose,” “treated like a pill seeker,” and “I am not part of the oxycodone EPIDEMIC.”

One individual wrote, “I have been made to feel like a criminal – from my doctor’s office…to the pharmacy worker who said very loudly to other patients in line that I was sure taking a lot of opioids. I was humiliated. I have been afraid to ask for pain relief as it seems like I am doing something wrong. During my cancer journey, I had to have a hysterectomy without pain relief…Hospitals feel they are opening the door to opiate abuses and my surgeon would not authorize pain medicine. I am terrified right now to ask for a refill on my pain medication.”

While the stigma from health care providers can affect cancer patients’ access to pain medications, it is the stigma from society that affects their use. Many writers indicated that they feared becoming addicts and worried about withdrawal symptoms. They also offered concerns about what use of high doses or multiple daily pain pills says about them.

These misperceptions aren’t alleviated by what patients are learning about opioids. Varied messaging about addiction and dependence from the media, government, and even health care providers seems to be leading to confusion and misunderstanding among cancer patients. Some of the Inspire writers said that health care providers had told them that cancer patients who need increasing doses are addicted; others wrote that their providers said they cannot become addicted because they “don’t get high.” Some providers say those who need increasing doses are addicted, while others say it means they are becoming tolerant or dependent on drugs. These contradictory views leave patients unsure, with many of them opting to live with pain rather than risk addiction.

We read several posts indicating that fear of addiction is causing family caregivers to withhold prescribed pain medications from those they are caring for. Responses to these posts advised against doing that, offering the opinion that managing pain is more important than addiction. While caregivers take this advice seriously and often follow up with a physician, we don’t know what they finally decide to do.

Some of the posts advocated for proper, controlled pain management, arguing that stigma should not interfere with care decisions. Their basic message to other group members is: “Don’t feel guilty for taking pain medication.” They recommend seeking out clinics and teams with expertise in pain management, cautioning that oncologists may excel in their treatment of cancer but are not necessarily knowledgeable about treating cancer-related pain.

Inspire members who wrote that they are not feeling stigmatized expressed confidence in their opioid use, derived from having knowledgeable pain management physicians who are not only experts in the field but who take time to explain pain management strategies and who include patients in decision making. These patients feel they are part of a team that is both instructive and supportive, and experience fewer struggles with access or worries about how to take their medications.

Two decades ago, the medical community woke up to the fact that far too many people with cancer weren’t being properly treated for their pain, sparking a movement to improve pain control that may have helped give rise to the epidemic of opioid misuse now affecting the country. In addressing this problem, the pendulum has swung too far, attaching a stigma to using opioids for legitimate reasons. While individuals treated in pain management clinics or by physicians specializing in pain management may be inoculated against or protected from this stigma, not everyone with cancer has access to these professionals.

What can be done? Education and clear messaging seem to be key. Pharmacists, oncologists, family practitioners, and other clinicians who care for people with cancer need better education about pain management. So do patients with cancer and their caregivers. Pain management awareness campaigns aimed at both patients and physicians could help counteract the stigma and encourage practices that do not hinder legitimate access or use.

People with cancer who need medication to control their pain are getting lost in the middle. They need support, not stigma.

Sara Ray is senior director of research at Inspire, where Kathleen Hoffman is senior health researcher and writer.

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  • Was diagnosed with esophagus cancer,after was given the minimum amount of pain meds when I left the hospital and now it hurts every time I eat but oncologist will prescribe no pain med.WTF????

  • My mother suffered with lung cancer and passed on 5/31/19. Her oncologist advised her to stop saying her kind pain management specialist therefore she was without one did not have any pain relief during her last week’s of life. It was really hard for her to even get pain medication throughout the two years that she was in excruciating pain. The doctors did not see this because my mom was really good at putting on the front. However I was able to witness firsthand the pain that she was on and her death. A nurse gave her a script for 14 pain poll because her oncologist was on vacation and my mother did not have a pain management doctor. She died trying to ration the pills until tomorrow however there was no tomorrow for her.

  • I guess I’m another statistic of ” opiate discrimination” . Was completely cut off last week because the BS drug screen my oncologist gave me. No seal on specimen container and strangely my test came back ” negative”. No balls to tell me to my face just made up a fake drug screen and out the door. This is my oncologist btw. Also was informed ( and laughed at) by his nurse and told CML does not cause pain. Been a patient there for 7 years on Oxy for 6 years no problems, same pharmacy , same thing like I was told to do and still kicked to the curb. I run out of chemo next week and my pain meds. Have no idea what to do ? pos doctors

  • I am a RN who is in kidney failure since 2011. So in 2018 I was diagnosed with basil cell and had that removed. In Feb 2019 I was diagnosed with Stage 4 aggressive squamous cell carcinoma of the mouth. The pain was excruciating. The dental surgeon who did the biopsy gave me all he was legally allowed to give but there was a one week period, I had no pain meds before the surgery I had to remove it. The surgeon had a policy that he didn’t give pain meds till after surgery and referred me to PCP for that. In spite of my pain, the facility made me wait another 4 days before they would give me an appt with the PCP. She called in sick the day I was to see her. Another Dr at the facility wrote me Tramadol but only 1 per day. It did not even touch the pain. So after I went to surgery I had pain meds in the hospital and a script when I left there for a few days supply. I got a massive infection and a chin that is crooked and swollen to the size of a tennis to baseball after surgery on March 13. I was readmitted approx 25 days later and no change in my chin which is extremely painful. Upon discharge from second admission, I received no pain meds. I met with a cancer radiologist for radiation and he wrote me a script in May but the amount ha wrote for Tramedol was an amount none of the pharmacies had so I remain in pain until he comes back to the radiation clinic next week. I have basically been in pain this whole year. I have never had drug issues and are appalled at the treatment having been a full time RN for over 20 yrs till 2012 and the kidney failure.

  • Hello,
    I was originally prescribed OxyContin for chronic back pain while undergoing chemotherapy and radiation treatments for Hodgkins Lymphoma. Since that time, opioids are the only reason that I am able to live a relatively ‘normal’ life. The spot that was radiated is the exact area that still suffers what I would call excruciating pain. Fortunately, with one cruel exception, I have had doctors who were willing to prescribe this medication while searching for a pain management group that had a substitute which might bring relief. 21 years and numerous pain management alternatives later, I have found nothing which can touch the pain. The only ‘help’ offered typically consists of suggestions to cut back on the amount of opioids I consume. Gee, thanks.
    Every time I hear talk of the ‘battle against the Opioid Epidemic’ I fear that I will be a victim of the heroes who want to eliminate these drugs. There are people who benefit from these medications! How can I remind legislators that some of us have no alternative to opioids, that they give me a chance at a normal life?
    Thanks for any suggestions

  • How is nerve pain different than cancer pain after all it’s the nerves that tell the brain how severe the pain is.Neuropathy can be unbearable and devastating pain!! I had effective pain control for 14 years until those who didn’t need it made it impossible to care for people like me.Apparently our government officials would rather have us ending our lives rather than being an embarrassment to our country!! We should not be all thrown into the same category. I have had severe nerve pain for years and have tried everything from aspirin to fentynal electrical spinal therapy everything with duragesic patches being the only relief I have found.I have went to every kind of Doctor and specialist there is with no avail I have run out of options only wished I could find a doctor that would take time to follow dea and fda guidance to those doctors who decided to just deni medical assistance shame on you if you are among those doctors that decided to abandoned me you will haft to own what you have done!!

  • Why can my wife not get medication for her cancer. It has been a 4 years now and they just figured out she has cancer. She is over 3000 on her ca 125 blood test. She was first told she has Pots by Mayo Clinic. Then they found a pituitary tumor about six months ago from the MRI they did 4 years ago. She has a pain management person but it doesn’t come close to giving her relief. Please tell where I can get help for her.
    John

  • Request permission to copy and reprint te article, Opioid stigma is keeping many cancer patients from getting the pain control they need, with proper credit being included for use in helping my wife. She is a Stage IV Breast Cancer patient who is under medicated for chronic pain.

  • This is an Advertorial for industry funded patient groups. The opiate hysteria, and misinformation is hurting patients across the spectrum. Misinformation and lies about pain medication have ruined lives and driven people to suicide. They have also0 destroyed families, as they attack sick family members. the misinformation, lies and draconian drug policies are killing drug addicts too. In post fact America even opioid deaths and chronic pain are an opportunity for corporate greed and profiteering.

  • I forsee a day not too long from now when there will be no pharmaceutical opioids at ALL. Period. The DEA will ban them. Major surgery, terminally ill and those with broken bones (doesn’t matter how many or where) patients will be denied any pain relief, except maybe one Tylenol a week. Cancer patients won’t get that because Tylenol can damage your liver. If you have chronic pain, a disability or terminal cancer, you’ll be euthanized by the state.

    On the flip side — and it’s already happening in some cities — those with heroin and fentanyl addictions will be catered to. Clinics will open where addicts can get their drugs onsite, as well as clean needles. Patients will be welcome to ingest in the clinic with nurses on hand to make sure they don’t overdose.

    In other words — ban the patient, help the addict.

    • The government would never be merciful enough to euthanize you. They’d deny you the pain medication and let you suffer to the point you euthanize yourself. At all points the government is trying desperately to cull the number of old and disabled people from programs that drain funds from them such as SS and disability. It won’t work. The number of people who are brave enough to commit suicide is miniscule compared to the number of people who are willing to suffer with the pain.

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