The Geriatrics and Life Stages department was tucked at the back of the clinic, down a long, grey corridor. After struggling for 25 minutes to get Robert out of the car while parked in the fire lane, we were finally on our way to his appointment. I led Robert by the elbow for our first meeting with Dr. Canio.
A new doctor
Robert was transitioned from Family Practice to Geriatrics following his dementia diagnosis. Dr. Canio was his new primary care physician, but we had yet to meet. We had come to see her that day because I was struggling with Robert at home. He’d begun to be very directive about his needs.
“Put the food right here,” said with a heavy smack on the dining table in front of him. “I need to go on my walk right now,” as we’re preparing to leave the house for grocery shopping. His behavior would be rude coming from a person without dementia. Even though I knew, logically, he couldn’t control how he spoke, I felt that his ill manners were directed at me. Was I to be his servant for the rest of his days? I was already scrubbing pee off the bathroom floor every morning.
Catch me before I fall
I exchanged a few messages with Dr. Canio through Robert’s online medical portal. She is very intuitive. She can sense when an email exchange is at risk of going sideways or when a family member (me) is teetering on the edge of the abyss, at risk of falling into the deep end of despair. Dr. Canio suggested that we make an appointment to see her.
Our first meeting pulled me from the brink and also pushed me further to face the new reality of our lives. (I say “further face the new reality” because it seems there are stages of acceptance and understanding. Even now, with Robert at end-stage dementia, I am shocked by my occasional effervescent bout of magical thinking.)
An amazing doctor
Dr. Canio’s white coat fell all the way to her mid-calf. She is a powerhouse in a small package. With her smart, gold plaid cropped slacks, bright orange, pointy-toe ballet flats, and open smile, she radiated extraordinary positivity. It was hard not to smile when she entered the room.
Wynnelena Canlas Canio is an exceptional doctor. Compassionate with her patients and their families and passionate about improving California’s preparedness for the growing dementia crisis. It is rare that we are cared for by “rock stars” in any profession, but even more unusual that we get the best of the best in Geriatrics. Dr. Canio is a rare practitioner.
An updated assessment
She greeted us in the exam room with openness and acceptance. Robert, increasingly frail, and confused in new situations warmed to her immediately. After brief introductions and assurances that she was a friendly presence, Robert was easily led to another room to complete an MMSE diagnostic that would provide Dr. Canio with an updated snapshot of his cognitive function.
Dr. Canio administered the exam herself. After she scored the test, Robert was greeted by another practitioner who kept him busy while Dr. Canio returned to her office where we could talk.
Did I understand?
Dr. Canio rolled over on her swivel, doctor’s stool. We sat knee to knee. She flipped over the well-worn clinic binder and laid a laminated card on its face. The card showed a smiley face scale with a green smiley face for MMSE scores of 30 to 24. A score of 19 or below featured a red, sad face.
I remember thinking to myself, “I’m a reasonably intelligent person, why is the doctor showing me a smiley face chart? Do I seem like I can’t grasp what she is telling me?” She explained that any score below 19 indicated some level of cognitive impairment. A score between 10 and 18 indicated moderate cognitive impairment. Robert had scored 15 on his exam; clearly impaired.
Advance Healthcare Directive
I was still puzzling over why the simplified chart when Dr. Canio changed the subject.
“Do you have a POLST for Robert?”
“What is a POLST?” I asked.
“A POLST is the Physician’s Order for Life Sustaining Treatment that medical personnel use to determine treatment for the patient.”
“I already have an Advance Healthcare Directive for Robert. For both of us.”
“That’s good. But emergency personnel will disregard the Advance Healthcare Directive. The POLST is the only thing they’ll pay attention to. The POLST is a document signed by a doctor clearly stating what treatment protocols you wish emergency personnel to follow.”
The POLST
She pulled out a bright pink 8.5 x 11 sheet of paper and asked if I’d like to complete the POSTL that day. She directed my gaze to Parts A through C of the form. I stared at the options for care in the categories of CPR, medical interventions, and artificially administered nutrition. Part A was straightforward enough, “If the patient has no pulse or is not breathing…Do Not Attempt Resuscitation/DNR (Allow Natural Death)”, but Parts B and C were a bit more nuanced.
“I’m not sure about Parts B and C. I need to talk with Robert about what he wants to do.”
“No, you don’t. He no longer has the cognitive capacity to make these decisions. This is up to you now.”
And that explains why everyone, including a “reasonably intelligent person” is presented with a simple smiley face chart to communicate their loved one’s condition. We hold onto our partners, parents, and siblings as they were, even in the face of evidence that they are not the same person anymore. Even a “reasonably intelligent person” sometimes needs to confront reality with simple, childlike cues.
Sobered, we completed the POLST. Dr. Canio signed it and I walked out of the clinic with the one document that would determine the next steps in any emergency treatment Robert might receive.
Standing by the POLST
Robert’s POLST calls for comfort-focused treatment only. I thought that once I had the POLST in place, his care plan would be clear to me and the decision-making burden would be lifted. “He is in pain. Let us administer morphine.” But in fact, comfort care decisions are not so easy. Recently, Robert developed a deep, infected abscess on his hip. I had to decide whether to treat the infection with antibiotics. Ultimately, I did have antibiotics prescribed because I did not want Robert to be in pain. However, there were more invasive options I declined. This is just one example. I find it difficult to withhold readily available medical treatments simply because Robert has dementia.
In future stories, I’ll share more examples of these difficult decisions. My hope is that in sharing what I have learned, the path will be a little less distressing for others in a similar situation. In the meantime, I strongly urge anyone caring for a loved one with dementia, to complete a POLST. Though the POLST can’t absolve us of all decision-making responsibilities, it does provide a “care plan” we can fall back on when faced with unexpected medical events.
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To learn more about POLST in your state, visit the nonprofit National POLST. And please schedule an appointment with your loved one’s physician to complete the POLST even if you already have an Advance Healthcare Directive in place.
I have worked with Dr. Canio going back eight years. The thing that makes her ideal for her position (besides her warmth and intelligence) is that she is board-certified in two specialties: gerontology and PSYCHIATRY. In my career of working with advanced dementia, I quickly realized that neurologists can be helpful up to a point, but their ability to contribute diminishes quickly once behavioral issues become the central focus of dementia care. With her combination of gerontologic and psychiatric skills, Dr. Canio is well versed in managing the many (and extraordinarily varied) manifestations of psychosis that can develop in people afflicted with moderate to advanced dementia. I never realized how critical this is until I lost Dr. Canio as a resource. Fortunately I have another geriatric psychiatrist I can lean on, but I miss Dr Canio sorely.
Thanks for sharing your perspective, Dan. It’s really important for all of us to understand the breadth of skills required to be an effective physician for dementia patients. And, yes, Dr. Canio is a gem!