Does your patient advocate have access to stop the medicalized death train?

My mom has Alzheimer’s dementia and lives in memory care. During her February 4th, 2022 health visit, her chart reflected stage FAST 7A (a 7-step staging system for dementia). I am her patient advocate, durable power of attorney for health care (DPOA-HC) that was activated two years ago. I was clear with her care team from the beginning that my mother is a DNAR and, when she became hospice eligible, we would make that transition.

My mom fell last week, the sentinel event I knew was coming, had tried to prepare my family for and discussed at her recent care conference. Initially, after her fall, she was up at lunch in a wheelchair with an initial negative assessment. It was a few hours later, when the care team tried to toilet her, they realized there was a problem prompting her ED evaluation.

I was out of town visiting my stepmother a year after my father’s medicalized death. My husband was able to be at my mother’s side in the ED and help me advocate from afar. I asked him to let me know the ER doctor’s name.

I am a full-time palliative care physician. I sent a secure message to the ER physician. “Hi there. My mom is under your care. I am her power of attorney. She is a DNAR. I am not sure I want her to have surgery if she does not have to. I worry she won’t be able to rehab this time around because her dementia is too advanced. I would even consider hospice enrollment sooner than later. I know it may be too early to be thinking this — also want you to know where we are in her plan of care.”

The ER doctor offered to chat on the phone. The train was preparing to leave the station. My mom had refractured her same leg after a previous fracture that led to her memory care stay 2+ years prior. This time, the fracture was more complicated, fracturing her femur just below the hardware from the previous repair. They were considering a transfer to a larger hospital with more specialty support. I reminded the ER physician of my message and wanted to opt for a more comfort-focused approach.

He was worried about pain and joint stability. We compromised on not transferring my mom, having her admitted for pain control, a local ortho eval the next morning and my request for a hospice consult.

By now, it is evening. My husband left when my mom was in her room, sleeping soundly after receiving pain medicine. My number was on the whiteboard for the admitting team to contact me. It was also in the chart. I kept my phone on all night. I emailed the case manager to update her on my hopes for my mom. I called the memory care facility to let them know about her fracture. My goal was to get her back there with hospice and to ensure their ability to provide care and accept her back.

At 7:30 the next morning, I called the hospital and asked for the nurse. She was in report, so I left a message. She called back at my mom’s side to provide a current update, including the plan for a repeat head CT. She noted my mom was refusing care, putting her hands over her mouth when offered Tylenol and had tried to hit a few team members trying to provide care. I asked the nurse for her repeat CT of her brain to be canceled (she already had one done in the ED) and for the medical team to call me. I was upset no one discussed her care before placing additional orders. My mom cannot speak for herself. I told her my plan was to focus on comfort and get her back to her facility with hospice.

I then called the hospice agency and told them to anticipate a referral from the hospital. I asked that if they were unable to enroll my mom today, to let me know so I could move on to a different hospice agency. All health care teams have staffing shortages, often delaying plans of care for days. I was not going to wait for their availability.

The family medicine resident called. She explained the plan of care. I was direct with my requests and asked her to help me understand why repeat a head CT? She noted pupillary changes. I asked how this would change the plan of care for my mom? She had access to my mom’s outpatient notes as on the same EMR, and the care is provided by her team in the outpatient setting. The note from 2/4/22 clearly documented FAST 7a in a patient no longer on a statin for her high cholesterol or blood thinner for her atrial fibrillation. I told her my wish for comfort care and discharge today with hospice. I asked her to cancel the repeat head CT. She asked if I wanted a palliative care consult.

The case manager by now had gotten the email and is helping advocate for my mom. She let the care team know the goal of comfort and discharge today with hospice. My mom was discharged at 1 p.m.

My mom had a clear care plan that had been discussed for the previous two years with a chart reflecting her ongoing decline that was viewable in the same hospital EMR. I acknowledge my privilege in having access to the ER physician, the case manager’s email, and through my work, understanding how the system works. Despite these measures, I am sadly discouraged by the additional steps it took to help navigate her care in a system that often only sees the “current” problem in determining how to proceed — fall-fracture specialty consult surgery. The train was leaving the station and required multiple conversations to derail it so we could get her back to her home.

And we did it in less than 24 hours.