She'll pull a Sori on him: Accompaniment by community health workers

Dr. Heidi Behforouz's story on Sori and Maria:
Sori is one of my PACT [Prevention and Access to Care and Treatment] community health workers. Sori told the story of Maria. A young woman with significant mental illness, and a cocaine user, Maria was referred to PACT with her immune system ravaged by uncontrolled HIV. For four years, Sori rode life's ups and downs with Maria, always encouraging, never forcing. Yet she was never able to help Maria consistently take her medications. Then one day, something clicked. Maria began taking her pills. She's now getting stronger and has voluntarily taken on the role of accompanying her boyfriend, showing up in his room with a cup of coffee in one hand and his psych pills in another, telling him that if he doesn't get up and take his meds, she is going to "pull a Sori on him."

With the power of such accompaniment, we have documented significant clinical improvement in the majority of our patients, and reduced preventable hospitalizations by 40%. We have been creating – to borrow a phrase – patient-centered medical homes.

Much of the care is being delivered by paraprofessionals who have not been extensively schooled in the biomedical model and don't practice office-based care. Their schooling and expertise is in the art and science of "accompaniment" – you walk with the patient, not behind or in front of her, lending solidarity, a shoulder, a sounding board, a word of counsel or caution. Empowering, not enabling. Together facing and managing challenges that neither you nor they can fix – poverty, racism, illiteracy, social isolation – so that you can help them swallow their pills every day, get to their appointments on time, and renew their Medicaid applications.

Advice to people with chronic illness: Find a Sori.

Read another story about patient partnership. Thanks to Dr. Heidi Behforouz for her source story in today's Boston Globe.

They stopped me from saving her life: Patient partnership and E.R. treatment

Lee's story:
I live here in Arlington, Massachusetts. For several years I was dating a woman named Elizabeth. She was a Type 1 diabetic from when she was 12 years old. She hadn't taken good care with her insulin when she was young because she was angry and felt adults didn't understand her. Her mom was divorced several times during her childhood, and that added to what she rebelled against by eating sugar when she shouldn't. She also feared gaining weight if she took as much insulin as she should. Most type 1 diabetics became diabetics as children, and have inner psychological battles. There's a very private inner painful world – they could die if they don't do what they're supposed to do. Some kids rebel….

When I met her, Elizabeth's condition had advanced to the point where both of her kidneys had failed, and she had received a transplanted kidney from her mother. She had had five eye operations, and was legally blind in one eye. She had neuropathy [a nerve problem] in her feet and hands, and couldn't balance well. She was an adorable, absolutely lovely and loving person, the most amazing person I ever met.

Due to side-effects of the immunosuppressive drugs she was on to prevent rejection of her transplanted kidney, her vascular condition had degenerated to that of a typical 95-year old woman (though she was only 43). At the time of her kidney transplant, the immunosuppressive drugs used caused calcium to leach out of bones and deposit in the walls of her arteries, so she had atherosclerosis, and plaque deposits in her arteries.

During 2008 she had four minor strokes, and recovered completely from each. She also developed arterial spasm events in her brain which could give stroke-like symptoms. She'd have to go the E.R. when a brain artery spasm happened, and the spasm could be immediately relieved with Compazine.

On New Year's Eve Day last year, she called me at 6 am in the middle of one of these brain arterial spasms; I rushed to her house and drove her to the E.R.

She had been through the same situation in that E.R. four or five times before, so it was all in her records what needed to be done, including a letter with specific directions from her stroke specialist; all they had to do was give her a short I.V. [intravenous, i.e., into the vein] of Compazine. But the E.R. doctor decided to review her whole case first. So she continued retching, and her retching caused a cerebral hemorrhage. Because of the cerebral hemorrhage she was taken off Plavix in the ICU [intensive care unit]. Before she completed her recovery from the hemorrhage in the ICU, she had a severe stroke – because she'd been taken off the Plavix - and she died.

During the whole time in the E.R., I was telling the nurse, "You need to give her the Compazine! Here's a letter about that from the stroke [physician] specialist!" I asked the nurse, "Can't you just give the IV?" She said, Not without a doctor's order. The letter from the stroke specialist wasn't good enough.

So she didn't get the Compazine in time. That review by the E.R. doctor effectively killed her – because of the time he spent on it.

I knew more about her condition, much more, than the E.R. doctor because I'd read hundreds of pages of information about it. The nurse asked him to come into the room and talk to me, but he did not come in until after her hemorrhage, and by then it was too late.. Doctors assume that someone who's not an M.D. is an idiot; it's not the case. Sometimes we are better educated about a condition than the doctor.

With the computer system at that hospital, there's no way for a standing order to be placed in the system to dictate what to do during an E.R. visit with a particular problem. So someone with a recurring condition (as most stroke patients have), cannot take advantage of their stroke specialist's prior knowledge of what has to be done.

I've called every major vendor of healthcare software in the U.S. No system has a feature allowing it to hold a standing order for the E.R. If such a feature existed, Elizabeth would be alive.

Back up four months: When we learned first about the brain arterial spasm problem that Elizabeth had, and how critically she'd need Compazine, I asked if I could have a vial of Compazine and a syringe to use in an emergency. Their answer: the standard dose is by I.V. and not syringe injection. Our policy is that we don't allow people to have Compazine at home. I had specifically tried to be responsible in a way to save her life, and they stopped me, like they did later in the E.R. too.

I'd tried to save her another way, too. When we were in the car on the way to the E.R., I called ahead, and asked them to please get the Compazine ready. They answered, "No, you’re not an ambulance."

I don't want to pursue a legal case unless that is necessary to change their system. Not every doctor will be good; the guy that was on duty in the E.R. was horrible. I want a capability so a person can prevent damage from the stupidity of an inadequate doctor by acting ahead of time.

This business of preventing people who are highly responsible for their health from helping themselves and the ones they love is insane!

The hospital wouldn't let us have a Compazine for an emergency they knew would predictably occur. What do you mean, she can't have a syringe?! She gave herself insulin about four times a day!

I could be trained. I'm a very competent person. I taught at MIT and I designed medical equipment for years at Hewlett Packard. If I'd known a spasm could kill her, I'd have done whatever it took to have that Compazine at home. If I had to, I would have stolen the stuff.

Lee's Advice: If you or someone you love has a recurring condition that needs to be treated at the E.R., write a letter to the hospital urging them to put in place a standing order at the E.R. for how to treat your condition. Urge them also to put in place a policy of preparing for your arrival based on a phone call from you. If there is a treatment you should be trained to give at home, push to be trained to administer that treatment.

Please feel free to send a copy of this along with your request, and please let the writer of this blog know what response you get.


Thanks to Lee Weinstein for sharing Elizabeth's story.

Read about a near-miss in matching a patient’s home medications with hospital medications [“medication reconciliation”].

Around an upcoming Bruce Springsteen concert: Patient control over cancer treatment

"At almost any age, there is a desire to exert some control over your environment," says Dr. Holcombe Grier, a pediatric oncologist at Dana-Farber Cancer Institute. "Medical residents need to be thoughtful in doing rounds with me and ask a child, 'I have to listen to your chest. Do you want me to do it here, or do you want to stand over by Mommy?'" Dr. Grier recognizes the importance of respecting young patients' intellects and easing their anxiety by always including them in conversations and decision-making about their care.

When it's clinically safe, physicians will occasionally put off starting a new series of chemotherapy drugs or steroids for a few days so a patient can enjoy a birthday party or other major event. One woman remembers her husband working with his doctor to rearrange a chemo treatment around an upcoming Bruce Springsteen concert.

Advice to cancer patients: Find a doctor who can partner with you against your disease.

Thanks to Saul Wisnia for the source article in the Fall/Winter 2008 issue of the Dana-Farber newsletter, Paths of Progress. This is an excerpt from that article about ways for cancer patients to cope with the ups and downs of treatment.

Each of us has had a serious error: Testimony on patient councils for hospitals

Here is the testimony to the Massachusetts Executive Office of Health and Human Services that I delivered this afternoon on the health care law that Gov. Deval Patrick signed on August 15:

Dr. Bigby, Mr. Wilkinson, and Commissioners,

It's very late in the day, and I appreciate your patience in hearing our testimony on Chapter 305.

I'm a member of Health Care for All's Consumer Council. Each of us has had a serious error in our family.

We're very happy with the quality sections of the newly signed law, Chapter 305, and urge you to request a lot of money in your departmental budget for the next fiscal year for monitoring hospitals' reporting of serious events and hospital infections, and encouraging rapid response teams in hospitals.

In the interest of time, I'll focus on hospital patient and family advisory councils. Elsewhere in the country, these councils have greatly raised patients' satisfaction levels. And, since patients are trained on how to care for themselves, fewer need rehospitalization, and fewer come back to the E.R., after leaving the hospital. So there can be big cost savings, too, IF people receive solid training on how to be effective council members. At a few thousand dollars to train a team at each of the 70 hospitals in the state, that comes to a few hundred thousand dollars. That money would be well spent.

Thanks for your consideration.

Advice: Look for opportunities to create and influence laws for patient partnership.

Read another story about testimony on Massachusetts legislation.