Pain Patients Feel Abandoned by U.S. Healthcare System
/By Pat Anson, PNN Editor
Many pain patients feel abandoned by the U.S. healthcare system and say it’s increasingly difficult to find a doctor or obtain opioid analgesics, according to a large new survey by Pain News Network. Some patients have turned to other substances – both legal and illegal -- for pain relief, and almost a third have contemplated suicide.
Nearly 3,000 pain patients or their caregivers participated in PNN’s online survey in the final weeks of 2023.
Over 90% of those with opioid prescriptions said they faced delays or problems last year getting their prescriptions filled at a pharmacy. Nearly a third were hoarding opioids because of fear they’ll not be able to get them in the future. And over 40% rated the quality of their pain care as “bad” or “very bad.”
“I’ve given up hope of getting help for chronic, severe pain in this country. I’m planning to move to where I can receive humane treatment,” one patient told us.
“The hoops in which I have had to jump through to get the minimal help that I have gotten throughout the years is ridiculous,” said another. “I have a very extensive and very well documented history of mental and physical trauma, but I am still treated as a drug seeker. I am currently unable to get any form of medication.”
“Every pain patient worries, from one month to the next, if their doctor will cut them off opioids or force taper them to such low levels that there is NO pain relief,” another patient wrote.
HOW WOULD YOU RATE THE CURRENT QUALITY OF YOUR PAIN CARE?
“I’ve spent the last 8 years explaining my inadequate pain control and lack of sleep that has fallen on deaf ears. I’ve tried so many different doctors and now feel like no one cares at all. Honestly feel as though they would rather see me die and be rid of me,” said another.
‘Impossible to Find Help’
About one in every four patients said they were tapered to a lower dose or taken off opioids — but only a small number were referred to addiction treatment. Less than one percent of those who stopped opioid treatment said it improved their pain and quality of life.
One in five patients couldn’t find a doctor to treat their pain. Many were abandoned by a physician or had a doctor who retired from clinical practice.
20% Unable to find doctor willing to treat pain
14% Doctor retired or left their practice
12% Abandoned or discharged by a doctor
27% Tapered to a lower dose or taken off opioids
3% Received a referral for addiction treatment
0.6% Stopped opioids & pain and quality of life improved
“My primary retired. Then my rheumatologist moved to another state. Now most doctors don't prescribe and it's impossible to find help,” a patient wrote.
“Every pain management office in my area were nothing but nightmares waiting to happen. And every person I talked to… were solely concerned with either getting people off of pain medication or reducing the amount of medicine by over half,” said another.
“Doctors I talked to said they felt like they had a gun to their head and that they are being watched, so they won't prescribe or prescribe very little,” a patient wrote.
“My insurance just capped opioids to 7 days a month, so I have to choose whether to buy the other 3 weeks and cut back on my food budget, or take to my bed for 3 weeks a month,” said another.
“I am unable to find a new doctor to treat pain. A couple of years ago I was tapered from a previously working amount of pain med, so now I have daily severe pain and too many sleepless nights from pain. But the doc doesn't care. It seems my clinic system only sees me as an addict,” wrote another pain patient.
Risky Choices
With pain care increasingly difficult to find, nearly a third of patients said they considered suicide in the past year because their pain was so severe. Others adopted risky behaviors, such as hoarding opioid medication, obtaining opioids from another person, buying illicit substances off the black market, or using alcohol, cannabis and other substances for pain relief.
29% Considered suicide
32% Hoarded opioid medication
30% Used cannabis for pain relief
14% Used alcohol for pain relief
11% Used kratom for pain relief
11% Obtained prescription opioids from friend, family or black market
4% Used heroin, illicit fentanyl or illegal substance for pain relief
“I was taken off my prescription opioid twice and attempted suicide twice because the other prescriptions were not effective,” one patient told us.
“I have a therapist that has been helpful, because I have considered taking my life. He is concerned that I'm not getting adequate pain relief,” said another.
“Since suicide is against my faith, I prayed for death,” one patient wrote.
“I know so many people that have stopped going to doctors and started buying heroin off the street. They say it’s easier and cheaper,” another patient said.
“The obscenely high cost of medical marijuana made me suffer so much financially that I have been unable to make use of the compassion center’s offerings,” wrote another patient. “Why on earth do we let plants be illegal in the first place, then let them be sold for so much money that they are almost impossible to afford on a disability income?”
“We desperately need to get away from the denial of opioids as a way to deal with this crisis. So far, the results of these laws on opioids have been an abject failure. Deaths have not been reduced, but actually increased due to chronic pain patients having to resort to suicide,” said another.
“I hope that all the people who are in charge of this will one day feel what I do and have some grasp of the pain situation people are forced to live through. They take care of their dogs and cats better than human beings,” a patient said.
“I have considered suicide multiple times over the past few years. These laws, while meant to curb illicit abuse of these medications, are harming legitimate patients like myself,” another patient wrote. “The worst part is that, for the time being, it looks like things are going to get much, much worse for me and the millions of others like me.”
PNN’s online survey was conducted from November 13 to December 31, 2023. A total of 2,961 U.S. pain patients or caregivers participated. We’ll be releasing more results in the coming days.
