The Care That Matters

When experiencing a life-altering illness, returning to normal and creating a new normal are profoundly different concepts.

Patients and families frame their expectations and requests for care on the premise that returning to the way things were before the illness is what will happen. Conversations suggesting otherwise are rarely offered before cure-focused treatments are initiated. Listening for the heart of what matters most helps ensure that the care that matters is the only care delivered.

                                                                      ****

It has been three years since Mr. Leo Thelonikis' initial admission to the ICU. Over those years, the palliative care team has been called to support others in the Thelonikis family, including Leo's wife, who developed her own life-altering illness, as well as their daughter, who specifically requested the presence of our team to celebrate the birth of the Thelonikis’ first grandchild. 

"No medical emergencies," the nurse from the labor and delivery unit quickly says over the phone. "It's the first time I've ever been asked to call your team. The family simply wished to share their joy with people they know and love. And apparently that is you." 

When the team learns of Leo's return to the hospital, we are grateful to know the Thelonikis family has enough self-advocacy to demand their primary team involve us in their care.

“Can you tell me why he is here?” I ask the primary team's intern, who sounds like a messenger caught in the middle and uninterested in discussing details. 

“He has dementia and fell and broke his hip. No one saw it when it happened. The plan is to take him to surgery in the morning." 

My team reminds me of Leo's prior medical history which includes a recent heart attack.

"That means he's on blood thinners," our team nurse, Kim, says. "He also had a really hard time coming off the ventilator last time he was in the ICU." 

"Yeah, that's right. The ICU team was thinking they would need to trach him, and we were looking into possibly needing to place him in a long-term care vent facility," our social worker, Noemi, says. I feel my gut wrench at the last line. The thought of putting Leo back on a ventilator is scary enough. With his worsening dementia, recent heart attack and new broken hip … I can't help wondering why the automatic reflex is to take him to surgery. 

“Is he in pain?” I ask the intern, trying to find my footing, imagining some way to support the medical team while still helping the family navigate this new life-altering condition amid a plan that is as good as done.

“Nope, he doesn’t seem to be in any pain,” the intern says with confidence.

“So why are you planning to repair his hip?”

The silence is broken with a slight, “er” followed by a shuffling of papers.