Dan Prince

Fear, like any strong emotion, shuts down the verbal parts of our brain as it stimulates other functions like heart rate and body temperature. That’s one of the interesting things Colleen Sweeney points out in her patient fear presentations. Fearful people have a hard time expressing themselves. It’s classic psychology, borne out in Colleen’s research for Memorial Hospital and Health System in South Bend, Indiana. Colleen is Director of Ambassador and Customer Services there. She has made two presentations on patient fear for The Beryl Institute this year.

People’s inability to talk about fear when they’re in the grips of it, is compounded by a reluctance to talk about fear. Our culture equates fear with weakness. We put medical practitioners on a pedestal, and we don’t want to appear weak in front of people we look up to. We fear that even talking about our fears will expose our ‘stupidity’ to these very smart people.

We don’t know the names for all the things we fear in the hospital. The bacteria. The diseases. The procedures. The drugs. Or we can’t pronounce them. I may not express my fear when I’m scheduled for the procedure my uncle was undergoing when he died – because I’m not sure I’ll say it right.

Colleen says her biggest challenge is hiring people who “care enough to ask the question: What do you fear?” Asking the question – then listening intently and sincerely – can open the door to real communication.

Give patients a comfortable outlet

Given how hard it is to talk about fear with a healthcare professional, my first thought as I heard Colleen address this was to give patients a chance to open up and talk to someone they are comfortable with, as an intermediate step. Then let the healthcare professionals ‘listen in.’

A few months ago, I wrote about St. Louis Children’s Hospital’s patient video project, focusing on eight-year-old Benjamin Robinson who, with a little help from his parents, videotaped his interactions with hospital staff. Benjamin spent a lot of time at St. Louis Children’s during his 52 weeks of chemo after he had a brain tumor removed.

Benjamin’s video was meant to inform and reassure young patients and their families. But it seems to me a similar technique could have great power with a hospital staff audience. Here are a couple of simple approaches.

• Give the video camera to a member of a patient’s family and ask them to talk to the patient about their fears when the staff is out of the room. Be prepared for some editing; it may take a while to warm up, even when the people conversing are family.

• Identify the members of the hospital staff who are best at drawing out patients and learning what their fears are. Again, with the help of the patients’ family, capture on video what those particular staff members say or do.

I wouldn’t put a professional videographer in the room. That extra presence would make the conversation even harder to have. And professional quality is not the point.

Let staff see those who handle patient fear the best – in action

Colleen Sweeney talked about Chris, who, until recently, was a CNA at Memorial. He worked the night shift, and he invariably asked patients, ‘How can I really care for you this evening.’ Colleen told the touching story about the injured truck driver whose real fear was for his dog Roxie, left in the truck when he was taken to the hospital. Chris drove an hour and a half to pick Roxie up and take her home, photographed her every day the driver was in the hospital and managed to bring her up to the hospital room on the day the driver was discharged.

Every hospital has a few Chrises. Consider videotaping their interactions with patients as they ask questions about their fears. Capture what the staffer says to allay those fears. Colleen found that many nurses, doctors and PCAs don’t ask patients about their fears because they don’t know how to reassure them, how to find something to say that won’t make their fears worse. Give staffers a chance to watch the people who are good at it, absorb and discuss what they are doing, and then encourage them to put it into action.

Obviously, you will tell the patients, families and staff what this project is, why they are being asked to participate, who is going to see the videos and in what kind of setting. Releases and permissions will be required. Patient privacy is always paramount, and nothing is more private than patient fears.

Clips could be extracted from the videos and used in many ways: Group meetings, a special section of the hospital intranet, or released to staff over time as a “What Patients Fear and Why We Have to Know” (Colleen’s presentation title) series.

With the proper permissions, some of the clips might even be turned into a video for patients. Hearing other people express their fears and seeing firsthand how unthreatening a conversation with medical professionals can be, may go a long way in helping patients conquer their anxieties about expressing their true feelings.

Dan Prince

Colleen Sweeney has found that 96% of people suffer from “clinicophobia,” a term she coined to describe patient’s fear of hospitals, providers and the healthcare system. She has data to back that up – from a 1,080-person survey she conducted for Memorial Hospital and Health System in South Bend, Indiana. Colleen is Director of Ambassador and Customer Services at Memorial, and she has made many presentations on patient fears and why the healthcare community needs to know more about them. She was the speaker at a Beryl Institute webinar on the topic August 16.

The interesting thing to people outside of healthcare is that this is news to the people inside healthcare.

But Colleen, who has worked in hospitals her whole career, says you get inured to the sights, sounds and smells of the hospital, and you don’t perceive it the way patients do. As Colleen said, “We see dead people. We see people naked. After a while you stop realizing this isn’t normal.”

Colleen is on a mission to help hospital insiders see the place the way patients do. Her own consciousness was raised when she walked down to admitting with a woman who had come in for surgery. “The woman was shaking uncontrollably,” Colleen said. “I asked her what the trouble was. She said, ‘The last three times I’ve been here to visit people, they died.’” It occurred to Colleen that every patient had some variation of that same fear – “and they weren’t telling us!”

Colleen conducted research to confirm that intuition, including a postcard request to the community to tell the hospital what their fears are. Responses ranged from “I’m afraid I’ll see a dead person” to “I fear white walls – why do you do that to us????” (This, shortly after the hospital had spent $25,000 to paint the walls white.)

She also commissioned the 1,080-patient survey, and the results have enabled her to compile and rank her “Top 11 Patient Fears” list. I won’t share Colleen’s whole list (Be sure to see her next time she speaks on this topic!) but the top 5 are: 1) Infection, 2) Incompetence, 3) Death, 4) Cost and 5) Medical Mix-up.

The list won’t be a big surprise to people who manage and work in hospitals. What Colleen is doing at Memorial is sensitizing hospital staff to the human faces, the emotion, behind these broad, abstract categories. For example, she puts senior staff – the CEO and VPs – at the front door of the hospital for two-hour shifts every day of the week so they can have the same experience she did – walking people down to admitting, finding out what they’re there for and why it scares them.

Colleen says her biggest challenge is hiring people who “care enough to ask the question: What do you fear?” I agree with Colleen that that’s a very big challenge. But the biggest is really taking the nurses, doctors, PCAs and everyone else who’s already on board – and making them “care enough to ask the question.” An idea on how to do that will be the subject for my next post.

Dan Prince

Next Tuesday, August 16, Colleen Sweeney will be presenting a webinar on a topic that isn’t discussed nearly enough in healthcare circles: Patient Fears.

Colleen Sweeney is Director of Innovation in Customer Services at Memorial Hospital and Health System in South Bend, Indiana. Her presentation will be based on a three-year study of patient fears that she led at Memorial and about the transformation in the care culture it has triggered there.

This webinar is going to be very good. I know Colleen, and I have heard her speak. She uses everything she learned doing improv comedy years ago to make her seminars and webinars a lot of fun – and very thought-provoking.

The webinar is part of the Beryl Institute’s Conference Encore series. Sign-up information is here: http://theberylinstitute.site-ym.com/events/event_details.asp?id=163365

I was thinking about patient fears as I talked to a friend of mine about her recent experience in the hospital with her father. Her father lives far from where she does, and she stayed in the ICU with him for several days and nights. He had had emergency abdominal surgery and suffered a heart attack on the operating table.

For her, the hospital experience was predominantly about fear. She feared for her father’s life. The doctors had to stabilize his condition after the surgery and delayed the tests to see how much artery damage had been done – how serious a heart attack he had had. Were the three doctors attending him, three different specialists, really getting the priorities right?

She thought that information was poorly coordinated at the hospital, and that made her fearful, too. She and her dad had to go through his history, what had happened with the surgery and the heart attack, what his prescription medicines were – all of it several times with different nurses and doctors. Each of the nurses was entering the information into a computer system, but the next nurse down the line didn’t seem to be accessing it. She worried that some nurse or doctor, with only partial knowledge, might order a procedure or a medication – or a meal – that could turn out to be harmful.

She had other fears. She worried that he might turn over in bed and get unhooked from one of the many tubes and monitors he was attached to. She woke up often in the night to check the screen and make sure it was still showing a regular heart beat.

She worried about infection. A colleague at work had died of a staph infection contracted in the hospital. She watched every doctor, nurse and PCA and how they gloved up and handled instruments and meds, and she thought about what they might be carrying from room to room.

Many of her fears were probably unfounded. But they defined her experience of this hospital. She didn’t express them, but then nobody asked.

Colleen Sweeney says that throughout the healthcare system patients – and their spouses, daughters and sons – are rarely asked whether they’re afraid and what they’re afraid of. She is making sure that Memorial in South Bend asks. It’s starting to make profound changes in the hospital’s culture and in patient experience.