Against Medical Advice: Patient and Family Autonomy
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Against Medical Advice: Patient and Family Autonomy

IWendy Leebov & Mothert was a very disconcerting experience….signing my mother out of the hospital “against medical advice.”

My mother is 97. She passed out at home and her caregiver noticed some drooling. We thought she might have had a stroke. The paramedics took her to the E.R. and admitted her overnight for observation. I rushed to Pittsburgh to be with her.

Especially because she was as talkative as ever, the Hospitalist said she didn’t appear to have had a stroke. I never did get a diagnosis, although her primary care doctor thought the whole episode was caused by dehydration. (My mother doesn’t like to drink anything, because she doesn’t want to have to go to the bathroom a lot.)

She spent two nights in the hospital under observation, with IV hydration. As time wore on, my mom became increasingly disoriented. Now, admittedly, she has varying degrees of dementia even on a good day, but she reached the point of having severe hallucinations and paranoia. Despite our protests, she kept trying to pull out the IV fluid line from her arm and the gizmo (heart monitor), and tugged at her gown. The paper-thin skin on her hands was black and blue from multiple blood draws.

Although she ordinarily sleeps MANY hours every day, she resisted sleep, saying that she was never going to sleep again because she had nightmares. She struggled to stay awake, and she did.

Sleep deprivation, tubes, black and blue hands, paranoia, discomfort, and desperation. Was this a healing experience??

So, after her second awful night, I walked into her room and said, “Let’s get you dressed. You’re going home.” And, quite lucidly, she said, “Thank God!”

I talked with the Charge Nurse and she said the doctor would have to discharge my mother. She went to contact the doctor. When she returned she told me, “He’s with other patients. He’ll be here in about three hours.” I was exasperated because my mother was so visibly distressed. I couldn’t wait to get her out of there and back home to her comfort zone. The Charge Nurse tried to speed up the Hospitalist, but couldn’t. So, I asked for an “Against Medical Advice” form, signed it and took my mother home. I was made to feel like I was being defiant, because I wouldn’t wait the three hours for a formal discharge. But I swallowed hard, reminded myself to breathe, signed the form, and took my mother home. No one said to me, “I hope all goes well for her.”

At home, my mother remained exhausted and disoriented. It took her two more days to recognize that she was actually home. Now, thankfully, she’s back to how she was before the hospital stay.

This was a very upsetting experience for my mother—and a wake-up call for me. This experience shocked me into a new level of “family engagement.” Initially, I thought, “Good, she’s safe and comfortable under observation in the hospital where they know what’s best for her.” But then, distressed with what seemed to me to be over-treatment (except for the hydration), an unnecessary hospital stay, and the havoc this wreaked on my mother, I decided, “Never again!” And I located my Power of Attorney and her long-lost living will, wrote a letter about COMFORT being my priority for her, provided these to her PCP, the hospital, her caregivers, my nephew and cousin, and determined to protect her from pointless dislocation, testing, and treatment in the future.

In looking back, I realize that not once during this experience did anyone INVITE me into a discussion of what would be best for my mother. I had to track down the doctors. I had to assert myself about what my mother needed. I had to buck the system by signing an AMA form.

Partnering with patients and families is critical. It’s in the rhetoric more and more about what needs to happen. And we have a LONG way to go.

Please share your comments below.

Categories: Caring and Empathy, Patient-Family Engagement


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