Far too many people are dying from opioid overdoses. You already knew that. It’s been in the news for years. Many of the deaths are due to fentanyl. This synthetic opioid has become widely available. It is also being added to counterfeit products made to look like oxycodone or hydrocodone. Because of the opioid crisis, federal agencies have cracked down on this category of pain relievers. Many people in severe pain, even terminal cancer patients in pain, are now being denied access to the only medications that allowed them to function.
Cancer Patients in Pain
According to the National Cancer Institute:
“People with cancer nearing the end of their life are not getting needed opioids to control their pain, a new study indicates.”
The study in question reported that opioid pain prescriptions for people dying from cancer have been dropping dramatically for more than a decade (Journal of Clinical Oncology, Sept. 10, 2021).
At the same time, these patients have increased their trips to emergency rooms for pain crises due to terminal cancer.
Are Pets Treated Better Than Human Patients?
No one would allow a cat or dog to suffer unremitting pain without trying to relieve it. Listening to a pet whimper in agony is unbearable. And yet people in severe pain are often denied access to adequate relief. Here are just a few of the many messages we have received from readers of this column.
Has Our Fear of Opioids Left Patients in Pain?
Q. I am afraid the new restrictions on opioids may leave some people without good options. I don’t have chronic pain myself, but when my mother was dying of lymphoma back in the 70s, she was getting good relief from opioid pain killers.
Then her doctors, in all their wisdom, took the drugs away because they thought she might become addicted. Yes, they deprived a terminally ill cancer patient the pain relief she needed because they thought she might become an addict. I remember her screams of pain to this day.
I still feel so much outrage about this; I wish I could go back in time and sue those doctors. I hope reason will prevail now and people with chronic pain will be able to get the pain relief they need to allow them to function day to day.
Another person wrote about her experience as a patient and a mother:
“I am a cancer patient in remission who deals with chronic pain (bone and myalgia) from two stem cell transplants, three surgeries and maximum radiation to my neck. I was suicidal until my oncologist found a palliative care team who helped me manage my pain effectively, yes, with opioids.
“I live in fear that the opioid crisis will impact my ability to receive this life-saving treatment. I had no quality of life before; now I live a fairly normal life. I get no high from my meds, but they help me function. Opiates don’t completely erase the pain, but they make it manageable.
“On the other hand, when my teenage son had his wisdom teeth pulled, he received 30 oxycodone pills. He used about six of them and Advil took care of pain from there.
“I hope the government realizes that the real problems from opioid prescriptions come from over-prescribing for patients who have temporary pain. It’s not chronic pain sufferers who abuse meds. There is a place for these drugs in managing cancer and other chronic pain that does not respond otherwise.”
Still another reader reported a similar situation:
“A friend is dying of cancer and is suffering severe bone pain. The doctors have cut back on his pain medicine, and he is now unable to function. Before the cutback he was able to work part time. Now he is in too much pain to concentrate.”
These stories about cancer patients in pain are heartbreaking. We hope today’s cancer specialists and palliative care professionals are not withholding narcotics from terminal patients. However, the panic over the opioid epidemic has led many physicians to restrict such drugs for people in chronic pain.
Until we have more effective and safer medicines, opioids will continue to be an important tool for those in severe pain. We have heard from many other patients who are currently suffering because they have been cut off from opioids. Here are some of their stories.
Stories from Other Patients in Pain:
Joe A. reports torture in Texas:
“My mother-in-law is 74 and was active, taking care of herself, and getting physical therapy. Six months ago her doctor cut her medication in half. She had been safely taking it at the same level for 20 years. He is now considering cutting her off completely.
“The doctor said she was afraid of the Texas Medical Board and the DEA. The doctor also said that my mother would experience similar restrictions from any other doctor in East Texas. She is now in constant pain. She no longer is able to do her therapy and never leaves the house without assistance. A visiting nurse and therapy provider both called the Doctor and told her how bad things were, to no avail.
“She is being tortured by the CDC, Texas Medical Board and DEA. I am shocked that the medical community has not fought back on behalf of their patients. They are the only expert advocates patients have.”
“Now doctors cower in the corner and allow their patients to suffer needlessly. If mom complains, she’s an addict. If we complain, we are enablers. I pray somebody with influence reads this and many other stories and does something. I have called my Congressman, Senator and local officials. They seem to believe the salacious stories prevailing in the current news that pain medication is the root of all evil. Help, please someone, help.”
Terry in Florida wants to function:
“Sixteen years ago I was struck by a car while riding my bicycle. An artery dissected and I was concussed and have a Traumatic Brain Injury. I try every treatment offered by the medical establishment and nothing has diminished the pain other than opioids. Even the opioids do not relieve the pain, but they do provide me the ability to function and some days enjoy life.”
“I agree that there needs to be guidelines for prescribing opioids, especially for children, but the rules need to consider the impact on the quality of life of the people who depend on them to dampen the pain allowing them to live.”
Marty is one of those cancer patients in pain:
“Hi, I’m 56 if that matters. I’ve read many posts on www.peoplespharmacy.com and agree with almost all. I had a double whammy. First a bad fall from a ladder March 2016 onto my back. That was followed by stage 4 cancer two months later. The cancer treatment was successful. (surgery, chemo, radiation). I was on 10 mg oxycodone during that time so I didn’t feel back pain.
“Once the treatment was over, oxy was cut off. Hydrocodone 10/325 works fine and I take less than prescribed, usually 2. One before I plan on doing anything physical, another after I do it. Without it I stay in bed most of the time.
“My insurance company changed so I had to find a new Primary Doc. The first one assigned me without my knowledge stated by phone message, even before I saw her, she “will not prescribe opioids of any kind to anyone for any reason” period. Shallow minded, forget her. Not a board-certified Doc anyway.
“New one I will see this week. She is aware of my various conditions as I had a phone pre-interview with her staff and they have all my records, medication list. They are directly linked in the same health system that did all the cancer work. So do I go in there acting like I’m on deaths doorstep to get a relatively mild (compared to oxy) pain medication? Over the counter drugs like Advil don’t cut it.
“This so called ‘opioid crisis’ is what many have said. People, often youngsters, get hooked on stuff to get high, turn to heroin, OD, then die. Very sad but it’s making it very complicated for people with legitimate needs to get what works. The government over reacted on this. Don’t hold your breath thinking they will reverse it. They will never admit they made a mistake.”
Queenie in Cincinnati is another one of the cancer patients in pain:
“I have had 31 abdominal surgeries in 41 years. I have been on pain pills for about 20 of those years in between, surgeries. I had a lot of tumors removed and a lot of surgeries for adhesions. In 2004 I was diagnosed with carcinoid cancer. Before being diagnosed, I lived with severe pain for 6 years. I have chronic back problems with deteriorating disks.
“I cannot believe that these people should or could be allowed to take away mine and other people’s pain medication without just cause. In my case (and many others in severe pain) only opioids help. I have tried other meds and different therapies that don’t help at all. Please reconsider, and give us back our life, what we have left to live.”
What Should We Do About Patients in Pain?
It is time for government agencies, guideline committees and practitioners to recognize the value of opioids in combatting severe pain due to cancer or other untreatable conditions. To learn more about the pros and cons of opioids and other strategies for coping with chronic pain, you may wish to listen to our free podcast with Dr. Sean Mackey. He is one of the country’s leading pain experts.
Here is a link to Show 1290: Approaches for Managing Chronic Pain. The first part of the interview is with New York Times columnist, Ross Douthat. He describes his experience with chronic Lyme and severe pain. Then you will hear from Dr. Mackey. He is a kind and caring physician who specializes in treating patients who are suffering with persistent pain.
What has been your experience with pain? Have you been treated with compassion and respect? Share your experience in the comment section below.
