Thursday, November 01, 2007


A friend of mine is suffering terrible pain in a hospital nearby today. In fact the hospital is inflicting this pain on her, though the medical personnel certainly bear her no ill will. You see, she's one of a class of people that the U.S. healthcare "system" routinely fails.

Oddly enough, her problem is not a simple matter of lack of access. She gets to doctors and into hospitals when she needs to -- but what happens then sometimes only makes her suffering worse.

Ten years ago, she was in a terrible auto accident; in addition to being thrown head first through a windshield, she broke multiple bones. After months in hospitals, she emerged with greatly reduced mobility and chronic pain. Other ailments followed in a downward spiral. And the pain never went away.

Naturally she lost all ability to earn a living and found herself on federal and state disability. She is very good at being poor, at finding what services exist, at cutting through bureaucracies, at making friends who will help and at demanding that she get whatever she can from medical providers. She works very hard at being poor.

She currently has an infection that won't heal. She tried calling her primary care doctor. She couldn't get a response. She got herself to an outpatient clinic. The prescription offered didn't work. Finally, after weeks, she dragged herself to a university medical center's emergency room. The ER took her in, recognized the severity of her infection and admitted her.

But, although she has a case record with this medical facility that is literally 2 feet high when printed out, the doctors are treating the infection but not the pain. They refuse to believe that she might, habitually, under her personal doctor's orders, take such high doses of pain medicine that any of the rest of us would drop dead if we ingested it. But she does. And she needs it. That medicine is what keeps her on a moderately even keel.

Today my friend is suffering, needlessly, in one of the best medical facilities in San Francisco. The doctors -- all new to her case of course -- will not allow her to have her normal dosage of pain medicine. She says this "cure" is worse than the infection that sent her to the hospital in the first place.

Apparently this kind of doctor and hospital inflicted pain is not uncommon. Jane Brody, the fitness and health editor of the New York Times had a similar problem after knee surgery. She suffered horrible on-going pain -- and her doctors hadn't a clue what to do for her. Some tidbits from her story (my emphasis):

Pain management is not generally taught as a part of medical education, not even to residents in orthopedic surgery. As a result, most doctors are clueless or unnecessarily cautious about treating pain, especially chronic pain like that caused by incurable neurological or muscular disorders. ...

... I complained about the severity of my pain, which had me crying for several hours a day [yes -- sounds like my friend] ...

When, at seven weeks after surgery, I spoke to Dr. [Jennifer P.] Schneider, a Tucson-based specialist in pain management and addiction medicine, she chastised me for not being more insistent about getting adequate pain relief. The trouble is, when you're experiencing intense pain, it's hard to be proactive about anything.

I know now from speaking with several doctors who routinely treat chronic pain patients that my story is hardly unique. Millions of people suffer needlessly year after year because their doctors do not know how to treat pain properly and don't refer patients to doctors who do know.

Many doctors are afraid to prescribe narcotic drugs like oxycodone, fearing they will create addiction problems. But that in fact rarely happens to chronic pain patients who don't have a history of addiction....

Furthermore, undertreatment of pain can actually cause a chronic problem when the nervous system changes in response to continuing pain signals. Nerves can become permanently hypersensitive to painful and nonpainful stimuli, like touch or vibration. With chronically undertreated pain, the painful area can also spread well beyond the original injured site...[yes-- that is my friend; the barest touch hurts her.]

"The way to prevent this undesirable outcome is to avoid repeated pain signals," Dr. Schneider said. ...

Surgeons may know a great deal about cutting, repairing and sewing up, but they are not experts on pain control, though I think they should be. I know of an orthopedic surgeon in New Jersey who won't see his knee replacement patients for two months after surgery because he doesn't want to see them when they're suffering. ...

First and foremost, patients need to be proactive and insist on the help they need. If patients are not able to do this for themselves, an advocate should do it for them.

Second, every person with prolonged or chronic pain should become educated about the huge range of medications, therapies and complementary remedies available to treat pain.

Good advice and I sure hope I can take it if I need it. But what good is that advice to a poor, severely disabled woman caught in the impersonal wringer of a medical center that neither respects nor believes her?


Grandmère Mimi said...

Jan, I will pray for your friend in pain. It's the least I can do, and unfortunately, the most I can do.

That's not the way it should be.

Barry Hughes, Ph.D. said...

A very discouraging story, but one that I agree is far too common. It has become necessary for patients with chronic pain (and their friends and families) to become as knowledgeable as possible and prepared to advocate for themselves.

If you combine the generally poor state of healthcare with many practitioner's biases about people with chronic pain, you get a very difficult situation.

My best wishes for your friend.


bjohanna said...

If people who are dying from AIDS can have access to self-administered morphine pumps, if morphine was in my father's hospice "dying at home" kit, and if I had a Fentanyl Transdermal Patch near the end of my cancer treatment... Well, it just doesn't make any sense for these or similar resources to not be readily available to your friend. Sorry I can't be there to be among those agitating on her behalf.

Drugs Banned, Many of World’s Poor
Suffer in Pain, NYTimes, 9/10/07.

From there go to "Experts Debate the Meaning of Addiction" 9/14/07

Anonymous said...

Post your query related to knee surgery,

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