Health quality requires looking at our caregivers

Sonia struggled to express herself through broken English. Her lively facial expressions and exuberance betrayed by her inability to string the words together fluently. One hand gesticulated widely while the other rested gently on the elderly woman’s hair.

She somehow managed to coo quietly in her companions ear, calming her, as she continued the conversation with me. Sonia’s eyes opened and closed in an exaggerated blinking manner as she questioned me further. Although she understood my words, she doubted their meaning.

***

Sonia moved to the United states five years ago to build a life with her fiancee. She took a job as a caregiver for an elderly woman with Alzheimer’s. Over the years her love affair with her beau dissipated but her relationship with her employer flourished.

She quickly became the primary care taker. She ran the house and finances. She spent every waking moment feeding, cleaning, and nurturing. Her patient — her employer — had become her friend.

***

There was absolutely no doubt her friend was dying. She walked a slow and relentless march to the grave. She no longer spoke. She couldn’t feed herself. Such simple tasks as bathing or dressing had become as complicated as quantum physics.

Sonia choked on each word.

But I can’t just let her die!

I explained that for her friend, death was no longer the feared outcome; no longer the emergency. It was suffering that was anathema. We would work together to make her comfortable. We would steer her away from the hospital and manage complications from home. Eventually she would slip away quietly and without fuss or fight.

I could see the transformation in Sonia’s posture. She understood. Her head bowed as she whispered up towards me. The tone of her statement rose at completion as if she was asking a question.

So we will no longer try to save her.

I could see the internal struggle as she paused. Her arms stopped moving and fell to her side. Nothing in her former life prepared her for this moment. It was as if I erased a large part of her essence with a sweeping motion of my hand.

***

Sonia and I would talk multiple times over the next few months. Eventually her friend would die quietly in her own bed. Sonia’s hand on her forehead with a wet cloth clutched by her side. Her lasts breaths peaceful. Her lasts moments enveloped in selfless love.

She visited me one more time before she drove to the airport and got on a plane back to Poland. She thanked me profusely and handed me a box of chocolates.

As I watched her walk out of my office I thought about the state of our country.

We talk about healthcare and quality as if they are quantities that can be hung in IV bags in high tech hospitals garnished with radiology suites and cancer centers. We cherish magazines that outline the best hospitals and the best doctors as we read through the best advertisements effacing each of their pages.

But if you really want to search for the highest quality you have to look further. You have to wend your way through the living rooms and parlors of our people. To the quiet places where the ill and beleaguered are being tended to moment by moment with careful hands and open hearts.

You have to look to our caregivers … to our families.

When are we going to start learning from them?

Jordan Grumet is an internal medicine physician who blogs at In My Humble Opinion.

Submit a guest post and be heard on social media’s leading physician voice.

email

Comments are moderated before they are published. Please read the comment policy.

  • Anonymous

    I am an occupational therapist specializing in stroke rehabilitation. 
    Family and caregiver ‘teaching’ has always been a part of my treatment program. Early on, as a young OT, if felt I had to ‘teach’ them everything they would need to do at the time of discharge…transfers in and out of the wheelchair, in and out of the bathtub or car. I ‘taught’ them their home exercise program, ADLs, etc. Then, one day, I made a shift. Instead of taking my list of family teaching tasks with me, I asked one simple question: “What are you most afraid of when they come home?”Now, the true ‘teaching’ began…I shifted from teaching to problem solving, with them ~ in a way that worked for them, not me.”How can I help you get through the first 24 hours safely?” ”How can I address your greatest fears?”"How can I help you retain your primary role as a loved one, not a therapy replacement?”I listened more. I was less intent on ‘teaching’ and more inclined to help problem-solve.The families and caregivers appreciated being heard and having the opportunity to contribute.I was addressing their fears. In this transition, my patients were better prepared to leave rehab and return home. This, in my experience, was the best family ‘teaching’.