H

istory 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.

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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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  • There are great non-pharma solutions on the market today with No side effects that work very well treating all kinds of chronic cancer pain. The Mayo Clinic and Johns Hopkins both have done studies that show good results. The Mayo Clinic Nov. 11th Health Letter just featured Calmare. In addition, The Foundation For Peripheral Neuropathy just put out a positive report on Calmare. The article was a collaboration between Johns Hopkins and The Mayo Clinic. https://www.foundationforpn.org/2016/12/09/scrambler-therapy-for-treating-neuropathic-pain/

    • Just check out your site,,Very curious,,your survey, no-where does it give the surveyor’s thee option for using the medicine opiates??Not 1 question gives the taker the option to state opiate ,medicine is what lessens their chronic neuropathy,,,why??It would appear your survey was done to prove opiates do not work by simply eliminating the option for anyone to answer that opiates lessen their chronic pain,,Now why would u do that,,,if the truth is what u seek???maryw

    • This is a really pernicious form of marketing. These devices are just another version of the other mostly useless ones on the market. They work by distracting people, and the “research’ is not scientific. The so called “Opiate Epidemic” has been a marketing extravaganza for these quacks and frauds. A visit to Wikipedia can explain the deceptive methods they use to mislead the consumers. It is very likely the person posting this has a financial tie to this company.

      https://www.foundationforpn.org/2016/12/09/scrambler-therapy-for-treating-neuropathic-pain/

      The FDA and the FTC need to crack down on this dangerous and deceptive advertising!

  • This is a travesty! Leaving people in pain is TORTURE and that is against the law. How can this possibly be happening in the US?

    • It’s happening in the UK too… I have been prescribed slow release morphine capsules and liquid morphine for severe pain since before 2000… Since early 2018 My go surgery employed an in house pharmacist who made me reduce first my liquid morphine and now my slow release morphine…I was afraid at first but I didn’t have any problems with reducing ( the aim is to reach the so called safe dosage of 120mg per day) however 2 weeks ago my spinal pain, which I hadn’t suffered for many years, returned with a vengeance and now I am in constant agony and once again needing use of wheelchair indoors…
      I just cannot begin to imagine the pain of cancer sufferers …why oh why are those of us with chronic incurable diseases which cause insufferable pain being made to feel like ” druggies” ? I am 65 yrs old have multiple sclerosis, chronic pancreatitus, COPD, a congenital spine deformity, arthritis… I wish I didn’t need to take any medication but it’s wrong and cruel to make those of us who genuinely need strong pain relief suffer because so many people are apparently abusing opiates!

  • The Pain Community has been doing Petitions for years, and they all failed. The NIH claims they have a Task Force, and the CDC recently had some hearings. Of course over the years as the so called Opiate Epidemic claimed more victims, they ignored pain management physicians and patients. Instead of going after the Pharmaceutical Companies that bribed Congress and paid off our politicians, they went after pain patients instead. They deliberately conflated prescription pain medication with street drugs, so instead of keeping the public informed they turned this into a profitable public relations camping while people died. They had ample time to turn this around but instead they targeted patients. The mass media ran scare stories, and a range of quacks, alternative practitioners, and pharma companies all cashed in on the sick people who were desperately seeking pain relief.
    Cutting down on the prescription drugs did nothing to stop illicit drug use, in fact it helped kill even more people. While people were terrified of taking a pain pill even if they needed it, addicts turned to fentanyl and street drugs, causing more deaths. Even the numbers are wrong, because lobbyists from the medical, insurance and pharma industries told congress that counting the dead was “Government Overreach.” In fact any attempt to count the dead has been met with fierce resistance, it could be bad for profitability. There is no way to look at outcomes for drug treatment, medical care or the alternatives which they foisted on people with pain. Instead of sensible opiate prescribing physician chose to ignore patients or claim they were drug addicts, even if they had legitimate medically documented pain conditions, some were caused by the medical industry. The failure to track even surgical outcomes, since it could cut into profits, also helped create an epidemic of pain in this country. It is truly the end of Science.

  • This comes down to education, monitoring and relationship with physician. Once had major surgery. Refused opioid for the same reasons mentioned. Once the physician explained rationale of getting pain under control, things made sense.
    Things can actually worsen without pain meds, affect organs, bp, etc. Have been fortunate to have good physicians who provided knowledge .😉 Needs to be broken down by disease, point of care. All situations are not equal.

  • I have been a nurse for more than 30 years, and I am so saddened by the current situation in managing pain. In my first few years of nursing, I had to listen to physicians and nurses expressing fear of addiction in patients with terminal cancer. I was fortunate to have learned proper pain assessment and management in nursing school. Over the years, practices improved. Now, we’ve regressed. I was recently near tears over one of my terminally ill patients who needed ever-increasing doses of fentanyl and morphine. His physician told him he would not increase his dosages again unless he agreed to accept hospice services. The physician said his reasoning was that he was afraid for his license and investigation for prescribing high doses. Unfortunately, the patient was coerced into agreeing to hospice, before he was psychologically ready for that decision.

  • Refusing people in that much pain should be a crime against humanity. They should be prosecuted, jailed and given a lifetime ban against any pain relief no matter their need.

  • Interesting view, but I think the”opiate crisis”, which has been around longer than oxycodone is being fought by legislators who regulate the amount of pain medicine a health care provider can prescribe has put fear of investigation if they prescribe adequately, as well as making it somewhat cumbersome and time consuming. Legislative bodies do not treat patients and in my humble opinion have no place in directing care. Medicine did not start the drug problem, and from what I have garnered, its regulation of pain management has not saved lives from overdose or addiction, but rather increased the suffering of those with disease.

    • To Elaine,,your view is also very interesting,,however,,from the years 1991 thru 2001,,,there was a 4.5% DECREASE,, in thee amount of suicides being used to stop physical pain because a medically ill persons medicine,ie,opiates,,have been forcible taken from them..That equates to approx,4500 lives,,,that were saved w/the intro of pain management..After 2001,,the suicide rate increases steadily by approx.,2000 human lives a year,,,except 1,,,The years 2016 and up,,,Suicides in 2016 were up by 6,000 more people used death,,[directly after the forced cdc guidelines btw],,to stop physical pain from desease,medical error etc because they did not have access to effective dosages of medicines to effectively lessen their physical pain,,,and that is the definition of torture,,,jmo,,maryw

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