Monday, February 4, 2013

Ignoring Families Can be Fatal

Yesterday in Heathrow Airport on my way home from Singapore I wrote a post about how US medical ethics ignores families and overemphasizes individual "autonomy." When I got home I read a painful story in the New York Times that confirmed the potential harm from the way ethics and law lead clinicians to treat individuals as isolated units: "Drowned in a Stream of Prescriptions: Addict's Parents Couldn't Halt Flow of Attention Deficit Drug.

Richard Fee, an intelligent, popular student who hoped to go to medical school, became addicted to stimulants in college. He faked symptoms of ADHD and received increasing doses of stimulants over a two year period. He ultimately became psychotic, and when the stimulants were stopped, became depressed (not unusual during stimulant withdrawal) and hung himself. The central points of the story are (1) how psychiatry has degenerated into brief "med checks" in which prescriptions are written without adequate thought about what's really going on and (2) how the pharmaceutical industry has succeeded in pushing medication use way beyond what good health and good practice call for.

But having just come from a conference on  "The Ethics of Family Involvement in Healthcare," I was transfixed by what happened when Richard's father, who was terrified about his son's deterioration, and who understood the addiction problem, tried to talk with Richard's psychiatrist: 
In late December, Mr. Fee drove to Dominion Psychiatric and asked to see Dr. Ellison, who explained that federal privacy laws forbade any discussion of an adult patient, even with the patient’s father. Mr. Fee said he had tried unsuccessfully to detail Richard’s bizarre behavior, assuming that Richard had not shared such details with his doctor.

“I can’t talk to you,” Mr. Fee recalled Dr. Ellison telling him. “I did this one time with another family, sat down and talked with them, and I ended up getting sued. I can’t talk with you unless your son comes with you.”

Mr. Fee said he had turned to leave but distinctly recalls warning Dr. Ellison, “You keep giving Adderall to my son, you’re going to kill him.”
I heard about situations like this again and again during my years of psychiatric practice. Whereas in Singapore respect for the family can lead to ignoring the patient, in the US respect for the individual can lead to grotesque stonewalling of the family. Dr. Ellison was not wrong that privacy laws emphasize the individual's right to privacy and to control access to information about him, but skillful clinicians learn how to (a) recognize the law but (b) do what's right for the patient. Law precluded Dr. Ellison from giving information to Richard's father, but it did not preclude listening to his father, explaining why he would not give out information without Richard's permission, thanking the father for his concern, and creating an opportunity for further connection.

Years ago I had a patient who (a) was in a suicidal crisis, (b) hated the hospital and had not benefitted from previous admissions, and (c) had responsible, caring friends who (d) were able to provide support and (e) would want to do so. My patient and I had a version of the following dialogue:
Patient: I won't go to the hospital!
Me: I don't want you in the hospital, but we have to keep you safe, and we'll need help from XYZ.
Patient: You can't talk with them.
Me: Since I know how much you hate the hospital and believe we can get you better without it, I'm going to talk with XYZ, but I want to do it with your permission.
Patient: You can't talk with XYZ - what about privacy and my rights?
Me: Your most important right is to be alive until  your time comes. I'd like to have your permission to talk with XYZ, but I'm going to do it one way or the other...
My  patient ultimately grudging agreed, XYZ came to the office, and we got through the crisis. But I'd meant what I'd said - if my patient had not given me permission I would have contacted XYZ. It made no sense for law to give me the power to impose involuntary hospital commitment but to forbid me from getting help from caring and competent friends without permission.

As Dr. Johnson taught us, the law can be an ass. US laws surrounding informational privacy are well-intended, but they're too simple-minded to apply to all human situations. Richard Fee might be alive if the medical establishment had not treated him as an isolated atom suffering from a deficiency of stimulant medication.

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