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”].