Embracing Care Partners

A year ago, my 82-year-old father was in the hospital with sepsis and osteomyelitis. My siblings and I (three physicians among us), assembled from different states and continents to be at his bedside. We took turns sitting with him seven hours per day (only because we weren’t permitted to be there 24 hours)–feeding him, ensuring that his hearing loss didn’t prevent him from understanding the healthcare team, streaming classical music to distract him from pain, encouraging him during physical therapy, and engaging him to prevent delirium. As a geriatrician, I know how important such interventions are to prevent functional decline during hospitalization. 

We also tried to give the team important context about him and about what we observed during his hospitalization. For example, how the well-intentioned interventions that I’ve prescribed to patients, such as opioids to relieve pain, caused him to be too groggy to participate in physical therapy. Or that the external urinary catheter, intended to minimize painful position changes, compounded his confusion and led to new incontinence when it was removed.  

Almost all healthcare systems, including world-class ones, aren’t designed to take advantage of the help and insight care partners can give. We were surprised one day when a cross-covering intern who’d never met our father informed us that oxycodone had given my dad “his best night of sleep.” And again, when I read a nurse’s progress note in my dad’s patient portal that said, “Son at bedside requiring patient to take steps. Family very involved and makes all wishes known.” The tone implied that they knew more about our dad than we did, that we were denying him comfort, and were intrusive to those who were trying to help him.  

We had become–in the words of geriatrician Louise Aronson–“The sort of family member[s] that medical teams complain about.” Yet I saw myself in the intern and the nurse. I knew that I’d sometimes seen care partners as pushy when they were advocating for their loved one, or sighed when I found visitors in a patient’s room because I thought it would delay me from getting through my to-do list.  

The experience with my dad got me thinking about ways that we can all support care partners during hospitalization: 

1. Invite care partners to provide essential care, such as helping with feeding and grooming, distracting from pain and anxiety, and engaging patients to prevent delirium. Encourage them to be involved as much as possible. 

2. Treat care partners as valued team members and encourage them to share context about the patient. Give them daily updates and ask them to share observations and concerns with the medical team. 

3. Provide information. Patients and their families are often unaware that interventions such as urinary catheters, opioids, and sedatives can cause serious harm. Discuss the tradeoffs so they can make informed decisions. 

4. Be attentive to care partner well-being. Ask them how they’re coping and acknowledge that their role is vital and difficult. Offer to connect them with services such as the Called to Care program at Johns Hopkins Bayview Medical Center.  

Although there were some bumps in the road, including a readmission, my dad thankfully recovered. He’s back home with my brother’s family, surrounded by four rambunctious grandkids. We are grateful to the healthcare professionals who gave excellent care. And yet, having seen this story play out as a physician and as a daughter, I know our healthcare system can do better by collaborating with and supporting care partners. 

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.