NHMH NO HEALTH WITHOUT MENTAL HEALTH A 501(c)(3) non profit   San Francisco - Washington DC Director’s blog


Published June 25, 2015

[Prefatory Note from NHMH:  Every now and then a family reaches out to NHMH to share their personal story with our NHMH followers and readers.  The following story, sent to us by Linda Knaack from Massachusettts, is such a story.  It is reprinted exactly as sent to us.

Pam’s case speaks for itself.  NHMH would only add that cases like Pam’s show the need for:

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Pam had refused to talk to family for several years and none of us had seen her recently. We first learned something was wrong 7/31/14 when her psychiatric nurse contacted me to say that she had lost 86 pounds over the previous couple of years, with 4 pounds lost in the previous month. My sister’s case manager was on maternity leave without being replaced, so it was up to him try to convince Pam to see a doctor. She agreed to an 8/26/14 appointment with the PCP. She still wouldn't talk to us. My brother stopped by her apartment and she let him in for a few minutes. He reported that she was thin, but not emaciated, and was complaining of a sore throat. Because of her heavy smoking, he immediately thought of throat cancer. Her psychiatrist told the psychiatric nurse to keep an eye on her but apparently did not see a reason to have her come in right away and scheduled an appointment for 9/9/14.

When her PCP appointment came up on 8/26/14, Pam refused to go. The psychiatrist and psych nurse decided they would check her weight again when she came in for her psychiatrist appointment on 9/9/14. When she came in she had lost an additional 19 pounds. The psychiatrist decided to wait two more weeks until she came in for her risperdal injection to decide whether or not to section her.

On 10/7/14 when she came in to get her injection, which was actually four weeks later rather than two, she had lost eight more pounds and the psychiatrist finally agreed to section her to the emergency room. The psych nurse went with her and explicitly told the ER staff that this was a medical, not a psychiatric, issue. The next day they turned her over to a psychiatric facility without notifying anyone. Although I am my sister's legal guardian, when I tried to get information from that facility, they refused to confirm/deny that she was there, had no interest in getting a copy of the guardianship court order, and I was unable to get any information about her. They also refused to talk to the psychiatric nurse. The nurse had to have his site supervisor call, and by the time she did, on 10/9, my sister had been moved to the psychiatric ward of a hospital 60 miles away from where she lives, and nowhere near either my brother or myself. Again, I was unsuccessful in talking to them. They were invoking HIPAA, but my sister's lawyer said that they had to talk to us, and we were willing to fax the court order, but they were uninterested, and would not confirm or deny that my sister was there. I told her lawyer that I had done all I could and asked if he could he help us. He refused, saying that his purview was restricted to her meds.

When the psychiatric nurse finally talked to a social worker at that hospital on 10/17/14, he was told that my sister was not being treated for medical issues, had been diagnosed her with, of all things, conversion disorder, and was scheduled to be discharged on 10/22/14. I thought that diagnosis went out in the 50's, and my sister had schizophrenia anyway and had been for 40 years. They would have learned that if they had asked any of us (which, BTW, they could have done even under HIPAA). By this time we knew that my sister was not eating anything and had been on a strictly liquid diet for at least weeks, possibly months. Essentially she was starving to death.

The hospital kept her for 11 days, then discharged her on 10/20/14 with the conversion disorder diagnosis and sent her home. We know now that by that time my sister had advanced stage esophageal cancer that had metastasized to her lungs and liver. (Her medical records show that they had detected “something suspicious” in her liver on an x-ray, but there was no follow up.) But they SENT HER HOME in a cab without a word to her family or mental health providers. They arranged a follow up with her psychiatrist two weeks out.

Two weeks later on 11/4/14. when she didn't show up for her risperdol shot, the nurse called her and discovered that she was too weak to come in. He had an ambulance bring her to the emergency room again. This time her psychiatrist talked to the emergency room staff and in great detail explained that this was a medical issue, not a psychiatric one. According to the psych nurse:  “On admission she was dehydrated and her blood sugar was 600 (toxic). She is currently on intravenous fluids She has lost well over 100 pounds, has a black eye and you can see her bones through the skin. She told me she doesn't eat because her throat hurts too much...I spoke with the attending and Pam will be admitted later today. They will do a complete swallowing work up. He expected it would include barium imaging of her throat.”  They admitted her to the hospital, but when my brother went in to see her, they were treating her for diabetes (her blood sugar was off the charts because she hadn't eaten in weeks). When he told the doctor it was about her throat, they finally did a scan and found the cancer. But my sister had spent 3 months in misery when we could have been working to make her more comfortable.

There were some unconscionable actions by medical and mental health facilities here that indicate the refusal of the medical and psychiatric communities to acknowledge that a mentally ill person can have medical issues just like the rest of us and that they need to be treated appropriately and with respect. As the mentally ill population ages, this is going to be a bigger and bigger concern and the time has come to cross train both medical and psychiatric providers to ensure that our family members receive the medical care that they are due.