Highlights from the Cleveland Clinic Patient Experience Summit

The conference, in its 9th year, has a unique perspective: advancing empathy in health care.

The opening session grabbed everyone’s attention, with a 35 year old opera singer who was a double lung transplant recipient, and also a cancer survivor…plus her doctor, who wasn’t there to talk about her patient, but the physician’s own experience having a stroke (while she tried to continue doing rounds and catching up on paperwork. Doctors make the worst patients!)

Other general sessions included the founder of Death over Dinner, promoting conversations and advanced care planning (without calling it that) and the amazing story of Jonathan Godfrey, a trauma flight nurse who survived his helicopter crashing into the Potomac. The conference closed with Leilani Schweitzer, whose son died due to medical errors, and is now a patient liaison who speakers about safety culture in hospitals. Kelsie Crowe spoke about Help Each Other Out, her non-profit organization to teach empathy during tough times…to everyone.

Besides attention-commanding presentations, breakout sessions included words like holistic, joy and meaning, gratitude and fun. Phrases in the program included “hacking empathy,” “organizational grit,” “navigating uncertainty,” plus “empathy in times of suffering.” Sessions includes strategies of empathy for transgender patients, opioid addicts, difficult parents of pediatric patients and even more difficult co-workers. Multiple sessions focused on workplace culture, medical residents’ wellness groups and combatting physician burnout.

The most pervasive topic though was…caregiver burnout. CCF defines all of their employees as caregivers, so this includes physicians, nurses, admins, therapists, maintenance and food service, parking and hotel staff -- everyone. Multiple vendors, including EPIC, Microsoft and Press Ganey got a bit of scrutiny as many discussions focused on how challenging it can be to have energy for empathy when there are so many metrics to try to meet, plus tech challenges eating up the day. It’s a tightrope to walk the emphasis on technology and data as a problem solver to free up more time, while being realistic about how that actually plays out in daily practice.

One of the most compelling sessions was from a performer / doctor known as ZDoggMD, who begins as a comedy act and gets many jabs in at the “data industrial complex” that is the current trend in health care. His message was humorous and full of pop culture, skewering the dysfunctions of health care. But he also is very direct about the pain of burnout, a lack of meaningful impact in their daily work and the future of medicine should be high touch, team focused and doctor directed. Through humor, satire rap videos and his personal experience with Health 3.0 (an experimental primary care practice in Las Vegas that ultimately closed due to reimbursement issues.)

The conference itself included art therapy, self-care walking tours, lavender oil in the tote bags and healthy snacks (including little buckets of veggies.) Audio vignette sessions with patient stories were set up at multiple places with MP3 players to check out to listen, and response boards covered in Post-It notes as an interactive activity.

Overall, I found it provocative, innovative and inspiring. There are serious challenges in health care, and it’s incredibly intricate and complicated to try to know what to fix first, but rooting our efforts in the human experience will anchor us as we endeavor to help people, without burning ourselves out.

P.S. Here’s the full agenda / speakers for the conference.

Well, Doc, I Must Confess...

Anytime I go to a doctor's office, a hospital or a pharmacy, I like to think of this as "fieldwork" for my area of expertise. Because I write about health care in the real world, it's important that I know what happens "on the ground" in the physicians' waiting rooms, the hospital floors and the pharmacy counter. 

Often, my contacts at the health system or the pharmaceutical company assume that processes go the way they are supposed to. However, this is one of the things I find so fascinating about medicine -- the human element always emerges. Sometimes systems can handle that, and sometimes they can't. 

I recently had surgery, and of course, I'm a better-informed-than-average patient. I scrutinized the recommendations, the doctor reviews and cross-checked whether I really needed the surgery. Having satisfied my questions, I scheduled it. Then I had to cross the incredible bridge of surgery prep. I read the "Patients' Guide to Surgery" produced by (someone like me) in the hospital marketing department. I read the handouts from my physician (even the parts crossed out by the nurse that didn't apply to me!)

And still, in this fieldwork, I found some mysteries. Why couldn't I wear nail polish? Did that include toe nail polish? I knew I couldn't eat anything after midnight, but not even tea? no water? This was arduous for a person who constantly hydrates like me. What I wanted more than instructions was the rationale. (See Gretchen Rubin's Four Tendencies -- I'm a Questioner.) I'm happy to comply when I know why! 

So I did my own searches on the internet. I asked my nurse friends and relatives. I looked at recovery yoga breathing videos. And I went in prepared. In fact, the last thing I remember before going under was talking to my nurses about all the services that my health communications company provides. #alwayshustling

But, not everyone asks the questions, even if they want to. And more importantly, how many people don't follow the instructions because they didn't read them, they didn't understand them or they fibbed about when they did them?

The answer to the nail polish question is: it can interfere with the pulse oximeter, so you need ONE nail free of polish, and it doesn't apply to the toes. 

The answer to the water question is more complicated. It's to avoid aspiration of food particles or liquid into the lungs while under anesthesia. But there's some controversy over whether two hours prior is enough time. More on that as the research evolves. 

This week, I interviewed a surgeon about the very same type of surgery that I had last week. I thought maybe I could just not mention it, but turns out -- I had to, because I have what's known in the industry as "lived experience." This is one of the most interesting challenges for medicine today, I think -- the integration of clinical knowledge and procedures with how things actually work in the real world. It's a constant striving to make things optimal (the cleanest incision, the tightest margins, the fastest recovery) while acknowledging that everyone has their own particular situation (their health history, their phobias, their home environment.) 

I'm happy to continue my fieldwork, but let's hope it's all outside the operating room for awhile!

Baseline: Why You Should Go to the Doctor Even When You Aren't Sick

There's a very famous family story where I made my husband go to the urgent care with me because I thought I had strep throat and if I did, he must too. It all started when one of my co-worker's sons had strep and she was telling me about it. I woke up the next day with a scratchy throat and knew it was time to go. In my family, both of my parents worked at hospitals and we were fairly quick to be seen if it appeared to "be something." My husband's family, on the other hand, not so much. These cultural influences play out as adults, as we try to make our own choices. I convinced him that we needed to go to the urgent care. We each got that awful gag-inducing swap and...he didn't have strep. Neither did I. He thought that was a wasted trip, and was very embarrassed that he'd gone to the doctor when he wasn't sick. 

But wait. Let me make the case for going to the doctor when you aren't sick. As a person who works in health care now, raised by people who had easy access to professional health care -- I'm shocked by the number of people who just don't want to or can't access health care. This means that they wait and see as their main method of dealing with health issues, and when they see that it's not getting better, they head to the drug store. Not to pick up a prescription called in to their doctor, but to browse the over-the-counter aisles to see if anything matches their symptoms. (Here's a great article from Altarum about lower income people's health habits.)

With increased health care access through insurance, these habits are still hard to break. Many people want to "save" going to the doctor for when they really need it. But here are three reasons to go now:

1. Build a relationship with your doctor and talk about your current health. How do you feel? What could you be doing better? What advice does the doctor have for you? Are you due for any screenings?

 2. Think about your health. If you are avoiding the doctor because you think she's just going to tell you to lose weight -- think about that. What are your obstacles in losing weight? How do you think it's affecting your health? What are your goals, for your health and your life?

3. Get your vitals taken. These data points help provide a baseline for the future, when your doctor might notice a spike in your lab results, your blood pressure or your weight. These things can help catch serious problems sooner (when they might be solved more easily) but they can't catch anything if you don't go in! 

In short, don't be embarrassed to go in for a check up, or just to check in about your health questions. Your health is an important part of your life, and these maintenance appointments can help in the long run. As for my husband, he is still more doctor resistant than I am, but he's getting better. My work is not clinical, it's patient experience and patient-centered qualitative work -- so I consider every encounter a learning experience. Try to schedule an appointment when you don't need it so you can improve your experience when you do. I try to schedule an annual check-up near my birthday as a kind of self-care, and my very smart PCP always makes me tell him what's on my mind so we can work together on it. Try it!

(Originally published on LinkedIn June 13, 2016)