Who Should Be Making Patient Care Decisions?

January 12th, 2015

My mother went to live in an assisted living community (AL) nearly 18 months ago. It was a place that she had selected with my sister Jackie.

At first, she was living completely independently in her small studio apartment. All meals are served in the dining room, so there’s no grocery shopping, no meals to cook, and no dishes to wash. I continued to pick up her prescriptions for her, and she self-administered her medications. After about six months, I realized she probably wasn’t always remembering to take her meds (especially the “memory pills”), and I was struggling to ensure her many prescriptions were filled. I signed up Mom for the medication administration service at the AL community for $325 a month (not including the cost of the drug refills). Through the mail-order pharmacy, her prescriptions are ordered, and someone on staff brings Mom her meds at the appropriate times.

Part of the arrangement was that Mom was to keep her asthma rescue inhaler with her. She has a history of asthma, pulmonary problems, several bouts of pneumonia, pleurisy, etc. When she needs a new inhaler, she tells a staff person, who gets a refill from the locked medicine cart. Not long ago, Mom complained to my sister that she no longer had her rescue inhaler. Jackie told her to push her call button and tell the staff member she needed a new inhaler. She assumed Mom’s inhaler had run out and Mom didn’t remember how to get another one. Soon we were getting panicked phone calls and confusing phone messages from Mom who said she didn’t have her inhaler and didn’t understand why someone kept taking it away from her.

On my next visit to Mom, I tried to find out why. I went to see the director of patient services. She had the day off, and her substitute, Mary, didn’t have any information. Mary said she would return Mom’s inhaler to her and discuss the matter with the director the next day, which was Saturday. On Saturday, I received another panicked call from Mom about the inhaler. I went to the community and to the director’s office in the late afternoon; she was gone for the day. Going to Mom’s apartment, I took my own inhaler out of my purse and handed it to my mother. I advised her to keep it in her pocket out of sight.

Finally, one of the patient care aides, Richard, told me that the pharmacy had advised the staff that Mom was getting her rescue inhalers refilled too often and that her rescue inhaler should be kept locked up on the medicine cart. If Mom needed her inhaler, she would have to get a staff person to retrieve it for her. Once she used it, it was to be returned to the cart.

My mother has carried a rescue inhaler for at least 50 years. She has considerable short-term memory problems, so if someone explained to her why she no longer could carry an inhaler, she certainly wouldn’t remember. I’m the authorized party responsible for her, and the administrator and staff at her AL community are supposed to contact me with problems and concerns about my mother. They call me if she runs out of multivitamins or stool softeners! I was never contacted about the rescue inhaler. Her pulmonary physician was not contacted. The pharmacy was directing patient policy and taking the patient, the patient’s family, and the patient’s physician out of the loop.

My sister called the pulmonary physician and had him fax an order to the community directing the staff that Mom was to be allowed to keep a rescue inhaler with her at all times. Mom is again carrying her inhaler around with her, but I have an extra one put aside just in case …

As the Affordable Care Act is implemented, which Sen. Max Baucus (D-MT) has called a “train wreck,” will more medical decisions be made by insurance companies, pharmacies, and the Center for Medicare & Medicaid Services? For the sake of patients and their families, I hope not.