Asking to see videos and memorabilia from a patient’s past may help us connect with each person in a more personal and complete way.
Connecting with Patients | September 6, 2022 | 3 min read
“This is mom celebrating her birthday last month,” the daughter said. She’s trying hard to keep her eyes open as she swipes through photographs on her phone in the dim hospice room. She just worked the night as a tech at a nearby hospital, and would soon be taking her own daughter to an intensive outpatient therapy program. I wondered when she would possibly find the time to sleep before her next shift. Despite the exhaustion, she still came see her mom, and tell me, the hospice doctor for the day, about the beauty of her mom’s personality. The photos showed it all: elegant clothing, vibrant jewelry, the embrace of a husband, a brilliant smile. The patient was now lying unresponsive, mottled, and ashen in the hospital bed across the room.
I finally found the words to break out of my own sadness. “What’s been your source of strength?”
The daughter pointed to her wrists. Chakra bracelets in all the colors of the rainbow. “One for stability. One for confidence. One for love. One for communication. One for balance. And one for money,” she laughs. She then shows me her cancer survivorship fleece personalized with her name. “We made these as a family to celebrate her cancer cure journey.” A few months ago, her mother had been back at work and making summer travel plans. Then came the unexpected and devastating news that the cancer had come back with a vengeance. First a bowel obstruction and then seizures.
“You can no longer even tell she’s my mom,” the daughter told me. The patient died the next day, before I was able to see the daughter again.
Since formally training in hospice and palliative care, and now working as a hospice physician, I’ve found myself not feeling as deeply for the patients and families that travel transiently through my care. This feeling has worried me, as I’ve always prided myself for going into medicine because of my deep love of people. I’ve reflected on what has changed.
One of the greatest fortunes of my medical education was completing my residency training at a hospital that had both hospitalists and comprehensivists. The term comprehensivist is unknown to most, but it means essentially what everyone used to think of as a doctor: a clinician who cared for you both in the hospital and in the office, often forming relationships over decades. I saw the love and familiarity these comprehensivists had for their patients, as well as their exhaustion trying to balance a busy office practice and rounds in the hospital, as well as evening call. The hospitalists didn’t have this same level of connection to the patients. It made me realize how essential continuity and familiarity are to caregiving, especially for medically and psychosocially complex patients.
Now, at a hospice facility, I’m the final stop for patients. Admission often happens in the last few days of life when people are no longer able to safely swallow oral comfort medications. By this time, patients are often unresponsive. Or they are conserving the last bit of energy for a final goodbye with a loved one frantically getting on a plane. Caregivers are often exhausted too, from prolonged hospitalizations to trying to manage care in the home.
The longer the patient stays, the more I get to know the families and friends that are at the bedside. I try my best to elicit stories of their dying loved one, encouraging and participating in life review. But nothing is as impactful as asking to see photographs and videos of the near and distant past. This allows me to visually travel through the life and illness journey. To see the person at their best, when they felt the most like themselves. At weddings, family reunions, vacations, birthdays, graduations. It’s become a new standard of care for me to ask families to bring memorabilia to medical facilities and to leave them at the bedside. I encourage all clinicians to do this. Photographs are now my lifeline to empathy.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.