The Patient Advocate's Bookshelf

During 2011, these books were mentioned on the blog, in addition to mine, Getting Your Best Health Care: Real-World Stories for Patient Empowerment:

Are Your Meds Making You Sick? by Robert Steven Gold

A Sea of Broken Hearts by John James

Cooking with Arthritis by Melinda Winners 6/17/11

Ellen in Medicaland: True Stories of How I Fell Down Medicine's Black Hole and Still Lived After All, by Ellen Kagan

Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization by Bart Windrum

Overdiagnosed: Making People Sick in the Pursuit of Health, by H. Gilbert Welch, Lisa Schwartz, and Steven Woloshin

Provider-Patient Partnerships by Helen Meldrum and Dr. Mary Hardy

Advice: Professional patient advocates should read these books.

Adverse effects of an anti-depressant: A complete 180 degrees

The story of Peter Andrew Sacco, PhD:
I had a client I was seeing a couple of years ago who came to me after seeing a psychiatrist. The individual was diagnosed with obsessive compulsive disorder, generalized anxiety disorder, depression as well as aspects of personality disorders which included borderline personality disorder as well as dependent personality disorder. This client had been referred to me from a colleague/friend knowing I am a cognitive behavioural psychotherapist who also specializes in relationships, addictions, anger management and stress management. By the time I saw this client, they were in a suicidal state.

After doing a case history, I could not believe what I had witnessed. The client who was in their late 30's had no history of chronic or clinical depression and no history of personality disorders. Rating them based on global functioning and changes, I looked to major life events or changes in the last 6-12 months. Lo and behold, they had recently gone through a relationship break-up (not their choice), a recent career change (actually a better one, but one that was extremely stressful and they were learning on the job training) and some other familial upheavals. They never had a history of chronic depression, anxiety, obsessive-compulsive disorder (OCD) or violence of any sorts.

When I inquired as to when the depression and suicidal tendencies, as well as intense OCD and anxiety reached their highest levels, the answer was two weeks before coming to see me. They had been to see the psychiatrist who put them on anti-depressants, which they should not have been on for situational depression/grief, and these meds had provoked not only greater episodes of depression, but psychotic thoughts as well. The client (the responsibility falls on them for this aspect) was consuming alcohol while on the wrongfully prescribed meds. Upon getting off the meds, engaging in cognitive behavioural counselling (CBT) and stopping their consumption of alcohol, his mood state did a complete 180 degrees!

Peter Andrew Sacco, Ph.D., is a psychology professor and author of Sweet Acceptance Vs Bitter Resistance. You can email him at psacco1@cogeco.ca.

For professional patient advocacy stories in mental health, see Chapter 6 of Ken Farbstein's book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment. Thanks to Monica Foster and Nicola Williams of Ascot Media Group for setting this up.

Healthcare billing: He's pregnant, so they billed Workmen's Comp

In getting my son off to college, I just ran across this story, which occurred just before he was born, when my wife Daryl was pregnant.

Ken's story, Sept. 15, 1989:

We've kept Daryl's pregnancy confidential until recently, hoping to restrict the news to a small circle of our parents, closest friends, doctors, nurses, technicians, receptionists, and medical records technicians. Imagine our surprise when the first bill was sent promptly to her employer!
Telephoning, I learned that of course, this information was not released maliciously; bills for Workmen's Compensation are always sent to the company. But wait! This wasn't an accident; it was a planned pregnancy. And the process that brought it about was definitely not industrial, mechanical, or manufactured. In short, it wasn't a Workmen's Comp claim, as should have been obvious from a cursory reading. Apparently, the billing clerk at the doctor's office somehow entered Workmen's Compensation as the payer. When the computer did not immediately reject the claim, the clerk assumed it was okay, as did the laboratory staff and hospital staff. The computer didn't express any surprise that my pregnant insured wife Daryl was "male," nor that a urine sample was claimed as an inpatient procedure, nor that Workmens Comp will not pay for pregnancy (which my wife, I hope, did not incur on the job!).

During my phone call, I tried to reach the only person whose name appeared on the bill, but she had left the hospital staff. Instead, I reached a clerk who had initialled the bill. Her spoken English was modest, so I explained: No, my wife does not have a baby. No, we didn't have a baby that died. Yes, my wife is fat, but I don't mean that she is at high risk because of it; she is getting fatter, and in a few months she will have a baby and then she will not be fat. And so on.


The story has a happy ending: our HMO was billed, so neither Daryl's employer nor we had to pay. More importantly, our son was born several months later, and is now a fine young man of 21.

I wrote this story on the birthday of my father, may he rest in peace, and I can hear his ready laugh.

Ken's Advice: Dispute your bill if you have to, and keep your sense of humor.

Read more stories in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Integrative medicine for pain control: He has been fired by doctors

Dr. Corey Waller’s story:
M. is a 34-year-old male with a relatively normal medical history, except that he had an injury to his hand six years ago that led to complex regional pain syndrome (formerly called reflex sympathetic dystrophy). There was injury to his spinal cord, so he required relatively complex treatment, because of the pain and swelling in his arm. His pain proved very hard to control with the opiates he got from his providers. Some of them tried some pain interventions, but no one addressed how it affected his life in general, e.g., his child, or his ability to work.

He’d had continuing frequent use of the Emergency Department, and had been “fired” by multiple physicians who tried to wean him off the pain meds. So he was generally angry and frustrated as a result of that, which created a lot of defiance, making him ready for a fight in the doctor’s office or the E.D. So ultimately, he didn’t get good care.

He came here to our Center for Integrative Medicine in western Michigan . My RN case manager, our social worker, and I saw him. We identified some financial issues, so we had our financial counselor talk with him too. The social worker got at some of the psychological issues that were secondary to his pain. We went through some different approaches to his treatment, and settled on one option.

In his first week, he had three visits scheduled (we offer a lot of visits in a compressed time), and he showed up for all of them. He has called a couple of times, but hasn’t walked in, though we encourage walk-ins from our current patients.

So far, that has paid off for him; he has already been making changes in his life, like organizing some things, getting out of bed when he should, getting Physical Therapy, meeting our requirements for calling our social worker for his scheduled Touch Base calls, filling out the prior authorization paperwork for his insurer, etc. We put a lot in the patient’s hands, to make them responsible for their care as much as we can.

He has been fired by doctors, because of arguments with them. Now he’s following through. Contracts don’t work with these patients; poorly controlled pain or the disease of addiction trumps any contract with the doctor. A contract between a doctor and a patient for pain medications, e.g., that the patient won’t receive narcotics in another setting, is a way for the doctor to fire a patient, to justify letting that patient go. That’s appalling! If a patient has breakthrough pain at 3 a.m., and goes to the E.D., I see that as evidence that my treatment plan hasn’t worked, that I’m not doing my job. Instead of contracts, we give them trust. They become more trustworthy in doing their job as patients. "Don't mistake this as naivety. This approach was born from extensive experience with this population."

We don’t fire anyone. We see their behavior as a symptom. We use a lot of carrots, not sticks. One carrot for M. is that I’ll work tirelessly to handle his rare, frustrating and very real disease, i.e., I’ve done my reading in the medical literature, and have gotten the approvals from the insurer as needed. That’s doing my side of the bargain. And my social workers have talked to their counselors, and have done their homework. It has to be a team effort. If a patient calls us, we need to answer them in a timely fashion.

You have to deal with the psychiatric component as well as the medical and social components. We saw that M. had a financial problem, which could get in his way. He was smoking two or three packs a day – that’s a lot of money! We treated him for that to free up his money. We gave him nicotine replacement therapy with counseling and close monitoring.

This week, we’ll give him a choice among three pathways we’ve come up with. We’ll put together the risks and the benefits, and let him mix and match based on his concerns. We let the patient decide on the treatment plan when possible, because if the patient can choose the therapy, it’ll be more effective.

Dr. Waller’s advice: Ask the doctor: Give me three options, and tell me about their risks and benefits.

Thanks to Dr. Corey Waller for the interview, and to Liz Kidder and Bruce Rossman for setting it up.

Sharing doctors’ Open Notes with patients

Jan Walker and her colleagues just published an article about patients' and doctors' attitudes toward sharing doctors' appointment progress notes with patients. In an interview, she described some of the most interesting findings:

We ran the Open Notes experiment at three sites, in urban/suburban Boston, rural Pennsylvania, and inner-city Seattle over 12 months, through this summer. The published article discusses the results of surveys, before the experiment began, of both the doctors and patients about the idea of open notes. According to these findings, patient expect that reading notes will help them understand their health and conditions better. The team also surveyed patients and doctors after the 12 month period, to find out what actually happened, and hopes to publish those findings in spring/summer 2012.

So, results are pending, but the researchers have heard some stories along the way of impacts of sharing notes, and are sometimes catching things. Early on, there was a doctor who called to mention his first experience with Open Notes, saying that at an appointment with a patient, he’d mentioned a test, but had forgotten to order it. The patient read Open Notes and told the doctor the test hadn’t been ordered, and asked that it be ordered. As another example, we had a patient who went home after her appointment and thought, I remember the doctor said three things, but I forgot one of them. So she read the note, in which the doctor advised that she should check out a spot on her skin. So she had a Dermatology appointment, which was a good thing, as it turned out that the spot DID need medical attention.

So things that were missed may be picked up earlier. One doctor, who’d been dragged somewhat reluctantly into this project, said, “a few months in, I felt safer because there are more eyes”; medical care is so complicated, that the extra set of eyes really helps. We had approval to run the experiment for 12 months. At the end of the study, we notified the doctors that the official study period was ended and that they could certainly drop out and we would turn it off. Not one doctor asked to have Open Notes turned off.

This could create more trust between doctors and patients, by opening the black box, and making all this less mysterious than patients may have thought. Some patients, we learned to our surprise in the focus groups, don’t realize that doctors write notes about the visit. Patients don’t all know they have a legal right to their medical records, in the Federal HIPAA law.

We thought that the younger, more tech savvy, better educated patients would be very interested in the doctor’s notes, but not necessarily older, less savvy or educated patients. But across the board, everybody is interested. That really surprised us.

Jan’s advice: Even if your doctor doesn’t use an electronic medical record, ask to get a copy of the doctor’s note about your visit.

The article appeared in the Dec. 20 issue of Annals of Internal Medicine. Thanks to Jemma Weymouth and Morgan Warners of Burness Communications for connecting me with Jan.

Read another article on a provider that gives even their woofing patients access to their progress notes.