Teaching hospitals are filled with room after room of patients, all hoping to be healed. And countless doctors, nurses, pharmacists, social workers, food services, and students, may visit the patient and their loved ones while they are in the hospital, working towards that goal. So how can a patient's values, humanity and personality be integrated with the pace and procedures of a hospital?
Last week, at a talk hosted by the Hospital of the University of Pennsylvania's Ethics Committee, I observed as the co-chair of HUP's Patient and Family Advisory Council opened the eyes of clinicians to a whole new way of looking at interactions with patients. Anita McGinn-Natali recounted her experience as a caregiver during the battle she described as "our cancer journey" during her husband Clark's successful battle with oral cancer.
After her husband's initial diagnosis and their referral to HUP, McGinn-Natali recalled that "we arrived at your hospital for the first time with disbelief, fear, anxiety and hope. Hospitals are alien territory to most people. You do things here that are shocking and amazing. You speak a foreign language. For instance, when we heard the word ‘phlebotomy’ [a clinical term for a standard blood draw], we likened it to the ‘lobotomy’ we saw in "One Flew Over the Cuckoos Nest."
At home, your bedroom is a private safe haven, McGinn-Natali explained. It's a place where guests don't enter, or if they do, they knock out of respect first. At a hospital, patients are stripped of that barrier to the outside world. Doctors and nurses may enter suddenly and in a hurry, start a physical exam without introducing the residents and medical students, or make assumptions about how the patient is related to the family members in the room. "We feel less panicked when you aren't rushed, take the time to introduce yourselves, and go over your plan for us for the day,” she offered. “It may be the only time we see you that day, and we want time to ask our questions."
Through Clark's 12 surgeries and multiple visits to HUPas well as other local hospitals as an outpatient and stays as an inpatient, Anita realized how empowering it was for her to be involved with her husband's care – he trusted her and she learned new skills quickly to care for him. "We want to participate in our care. But having no control makes us feel dumb, useless or dismissed," she said. "Sometimes fear stops us from understanding what you're saying. Please slow down, look us in the eye, explain who you are and show us that you are with us."
At the seminar, clinicians filling the room were eager to better understand what they can do to improve, and how they can incorporate patient-centered care into their daily activities.
Mary Walton, MSN, MBE, RN, director of Patient/Family Centered Care and co-chair of the Ethics Committee at HUP, talked about the importance of individualizing care. It's a partnership between patients and everyone they encounter at the hospital - everyone brings value to the relationship, she advised. Data has shown that when a patient isn't intimidated, they have better health outcomes.
Penn cardiologist James Kirkpatrick, MD, who serves as the physician co-chair of HUP’s Ethics committee, shared one of his own experiences recalling a patient who would stand upon his arrival and invite him to have a seat in his room. While it was confusing to the doctor who ordinarily considered the hospital to be his space, he admired the patient's idea. "We need to give patient and families permission that this is their room while they are here," he said. Others concurred that using the term "bedroom" could help both clinicians and patients shift their mindsets, signifying that This is respected personal space, and your care team is here with you.
With such a positive response from the group, HUP's Patient and Family Advisory Council will continue looking at ways to share Anita and Clark's journey with others. The Council, which now has 18 members, continues to tackle a myriad of projects aimed at improving patient-centered care throughout the Hospital.