Patients, caregivers give providers glimpses of their worlds

University of Colorado Hospital panelists made tangible the concept of patient and family centered care
April 13th, 2016

It seemed an unremarkable question to put to a roomful of clinical providers – at least on the surface.

Allen Wentworth, long-time director of Respiratory Care at University of Colorado Hospital and co-chair of the Patient and Family Advisory Council, said hospital leaders had for years explored various ways to better meet the needs of patients and improve their experience during times of stress and uncertainty.

Patrick Kneeland, MD
Patrick Kneeland, MD, moderated a panel discussion featuring two patients and a caregiver.

“We said, ‘Why don’t we ask a patient?’” Wentworth recalled.

The Patient and Family Centered Care program (PFCC) grew from that simple but profound insight, and the patient who spearheaded the effort a decade ago, Carl Miller, was also among those on hand to speak to an April 4 “Grand Rounds” in the Anschutz Inpatient Pavilion. Miller, who received a heart transplant at UCH 15 years ago, is now director of the PFCC and has had a hand in a host of changes and improvements led by the group.

These include unit-based councils focused on delivering patient and family centered care; the hospital’s no-smoking policy; a new waiting room for the Cardiothoracic ICU; a policy allowing families to be present during Medical Emergency Team calls; and much more.

The Grand Rounds featured a three-person panel – two patients and one caregiver – who are involved with the PFCC. They each spoke candidly of their experiences at UCH. It is important that their voices be heard, said Patrick Kneeland, MD, who moderated the discussion.

“This is a path that all of us will be on at some point or another in our lives,” Kneeland said. He then invited the panelists to relate times “they felt a high level of care” while in the hospital and to describe the behaviors and actions that have stuck with them.

Surviving tough times

All three have had arduous experiences. Bella Wong suffered from interstitial lung disease, pulmonary hypertension and pulmonary embolisms, among other ailments, and underwent a double lung transplant. Ben Martin’s rare form of heart disease necessitated a transplant nearly a decade ago. Kim Botts helped her father and other family members through Parkinson’s disease, meningitis, and other conditions.

Kim Botts, Ben Martin, and Bella Wong
From far left, Kim Botts, a longtime caregiver; Ben Martin, a heart transplant patient; and Bella Wong, a patient with a variety of respiratory problems that led to a double lung transplant, share their experiences at UCH.

Each was grateful for the care delivered by providers at UCH, but none singled out a special treatment, medical device or piece of technology as reasons. Instead, they spoke of everyday acts of kindness and attention to detail that made their time easier in what Martin called “a strange, anxiety-provoking place.”

Wong, a patient at UCH since 2009, said she had inpatient stays that stretched to five-and-a-half months. In 2012, well before her lung transplant, her pulmonary hypertension and interstitial lung disease led to incipient right-side heart failure. She needed complex intensive care from highly skilled clinicians, but she remembers most pulmonary and critical care specialist Todd Bull, MD, stopping in to see her every day. It wasn’t Bull’s medical care that sticks in her memory.

“He made me feel like a person,” Wong said. “I didn’t feel that I was just another medical chart.”

After her transplant a year and a half ago, Wong went through inhaled ribavirin treatments to prevent lower respiratory tract infections that are a post-lung transplant danger. The two-hour therapy is administered three times a day at four-hour intervals for five days. The last ribavirin dose is a double treatment that takes four hours.

“It’s not a procedure that anyone looks forward to,” Wong said, noting that the process turns the liquid medication to a powder that “gets everywhere,” and that no one is allowed in the room during it except gowned medical staff. The thoroughly unpleasant experience was bearable because of the care provided by UCH respiratory therapist Louis Giguere, RT, Wong said.

“He always came in with a genuine smile and greeting,” she said, adding that Giguere took care to explain the treatment and what to expect. Giguere confirmed the time of the next treatment with Wong, carefully cleaned the room, and generally displayed a “fantabulous attitude,” she said.

Calming influences

Martin recalled the deep sense of worry he felt before the diagnosis that led to his transplant. He’d been told his fatigue and shortness of breath were to be expected as he aged, but his mind and body told him otherwise. He communicated his concerns to UCH cardiac nurse practitioner Cathy Kenny, MS, NP, RN, who not only listened but acted. Kenny urged Martin to get to the hospital as quickly as possible. When he arrived about an hour later, she had set up all the necessary diagnostic appointments – tests that eventually revealed Martin’s heart disease.

“She told me that [the hospital] would get down to the bottom of what was wrong with me,” Martin said. “That makes a huge difference to someone who is scared.”

Throughout many days at the hospital before and after his transplant, Martin added, providers consistently offered “care, consideration, and communication,” both to him and his family members, most importantly his wife. He recalled spending a two-week stint in intensive care, relying on his family to help him get the information he would need to recover.

“Nurses and physicians spoke with them and explained what was going on,” Martin said.

Acts of kindness

Bella Wong
Bella Wong describes care she received at UCH that helped her through difficult medical challenges.

Botts remembers gestures from providers she referred to as “terms of endearment”: a gentle tap on her father’s hand and friendly words that helped to pick up his spirits. After her father suffered a fall, a nurse expressed concern to Botts about how her mother was holding up under the stress. It was an important reminder that the emotional toll of injury and illness extends not only to the patient but also to the caregivers.

“I wanted to give her a giant bear hug for that,” Botts said. Later in the discussion, she noted her appreciation for the providers who helped her to understand difficult medical conditions and provided an “emotional rock” and “notes that resonated.”

In many cases, Botts added, providers can ease worried minds with efficiency. She appreciated the white boards in hospital rooms that include plans for the day – but especially when tests or scans listed “happened when they said they would.” Similarly, Wong said a quick “I didn’t forget about you” from a nurse or other provider during busy times goes a long way toward calming anxiety.

Providers make a hugely positive impression with patients and family members simply by showing them the name and face on their ID badge, Martin added, because “it starts a conversation” and forms a human connection.

Unspoken messages

Ben Martin listens to Kim Botts
Ben Martin listens as Kim Botts discusses the seemingly small things providers have done to help her as a caregiver for her father and other family members.

Asked by an audience member to identify things the hospital could improve, the panelists again focused on points that might easily be overlooked but made a powerful impression. Wong, for example, described being awoken from sleep – a commodity hard to come by in the ICU – by the touch of a cold stethoscope.

“It’s a teaching hospital and I know people are eager to get a start on the day,” Wong said. “But not all of us are up for that.”

Botts reminded the audience that patients and family members rely on their providers and are sensitive to the unspoken messages they convey.

“I could tell when someone was overworked and tired or when there were things going on,” Botts said. “People sometimes wear their emotions and it’s felt [by us]. We can read the cues.”

She paused, then offered words that summed up the importance of everyone at the hospital staying in tune with the experiences of patients and family members.

“Anyone and everyone can make a difference,” Botts said. “You never know where a connection is going to come from.”

About the author

Tyler Smith is a freelance writer based in metro Denver.