Preview Mode Links will not work in preview mode

I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

Use the search bar above to search episodes by topic. Search "phawareMD" to discover podcasts with medical professionals.

Get our custom smartphone app (for iPhone™, Android™, and Amazon™ devices). It's the most convenient way to access the phaware™ podcast.

The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on phaware.global and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

To learn more about PH visit www.phaware.global. phaware® is a 501(c)3 organization. © Copyright 2015. All Rights Reserved.

Generously Supported in part by Actelion Pharmaceuticals US, Inc., Bellerophon Therapeutics & CVS Health.

Michelle Liu, MD - phaware® interview 163

Jun 15, 2018

Michelle Liu, MD discusses how physicians can use “PEARLS” to build relationships with patients. The mnemonic PEARLS – stands for partnership, empathy, apology/acknowledgment, respect, legitimation, and support. Dr. Liu is a Parent, Caregiver and PH Support Group Leader. Her daughter Ester Grace is a former PH patient who received a double lung transplant in 2014.

I'm Michelle Liu, I'm a parent of a former PHer, and also a physician. My daughter was diagnosed with PH in 2012 when we were living in Europe. She had a sudden cardiac event, and it was right in front of me. She had been jumping on a trampoline, and I thought she had hit her head, because she was tumbling, and she was two and a half at the time. The CT scan was negative, and she was sent to a pediatric hospital in the Netherlands where we were visiting. She was diagnosed with PH very quickly after her Echo.

I've had different types of communication with different physicians, all have been good, but just different styles. That his motivated me to learn more and study communication, because I think that is key to how our kids survive, and how the parents navigate this very tough course with this rare disease.

I am a physician, I'm a surgeon, I have many difficult conversations. I do elective surgery, so not much life and death, but I do have cancer patients, I treat kids. Having a child with a serious illness has definitely affected how I treat my patients, how I listen to them. The listening is key, and I really try to connect with their emotions and understand why they may or may not refuse certain treatments. I know in my profession a lot of us can be short when people are faced with decisions, and it's easy to walk away from someone who says no to surgery sometimes. To really try to understand why they say no and make sure that they have the knowledge they need to make the right decision for them, or for their loved one is very important.

I have related a lot to parents of kids with PH who are confused and scared and looking on the Internet for information. Sometimes, even when you're talking to your doctor, you feel like do they really know what's going on with my kid? Do they know what's going on at home? You don't always have time to get the full story out, and there's always something new with PH, and you want to make sure that they have the information you've obtained on the Internet, which sounds kind of strange, but that's what a lot of parents are facing. A lot of the people who fall through the cracks are victims of poor communication. Poor communication between docs, poor communication between the patient and the caregiver. The more we can improve that, I think we can save lives.

These are ways that we can easily try to remember how to navigate through tough conversations. They can be used with your child, they can be used with your spouse, I've done it. They can be used with colleagues and with your patients, so PEARLS…

P is for partnership. I know this is tough, let's tackle this together. I know you're having a hard time losing weight, I'm here for you, I'm going to work with you on this.

The E is for empathy, which sounds like it can be easy, and it's easier to say, "I know what you're going through," but that's not necessarily what you should say. The empathy is really trying to understand their side of the story, and even if you can't walk in their shoes, show them that you want to understand the situation they're in, and help them to move forward. An example is a child who's afraid to take medication, or embarrassed to do certain things that are good for them. Really trying to connect with them in that emotion and navigate that together.

The A is for apology, we do make mistakes as parents, we make mistakes as physicians, and having the guts to say, "I'm sorry this happened, I'm sorry we dropped the ball, let's move forward together," goes a long way. Acknowledging people's fears and even anger is a way to move forward together.

R is for respect, which is a given, but sometimes when you're disrespected, it's hard to respect someone. That's an example of a difficult conversation, but respecting people for their efforts, respecting people for their research. Some parents do a lot of research online, and as a physician, sometimes that's hard to take, but being able to say, "Hey, I haven't heard about that therapy honestly, let me look into that a little bit," takes some humility, but it's honored very much by the parents and the patients on the other side.

L is for legitimization, legitimizing people's fears, their feelings, is very, very important. People who are worried that their child is going to die, or they have concerns about quality of life, need to be legitimized.  Anyone dealing with that would be scared.

And S is for support. Support goes without saying. Even giving your number to a patient can be a way to support them, and I think a lot of providers are afraid to do that. I personally give my cell phone, not to everyone, but to patients I think may need me in the middle of the night, and they only use it when necessary. That's what I want, and I've had my doctors do the same for Esther.

My name is Michelle Liu, and I'm aware that my daughter Esther Grace is rare.

Learn more about pulmonary hypertension at www.phaware365.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instagram, youtube & linkedin Engage for a cure: www.phaware.global/donate #phaware #phawareMD