SCCM Pod-451 PCCM: A Hard Learned Lesson on What It's Like to Be a Patient

---

In the ICU, medical staff do all they can to assist patients and get them back to health as quickly as possible. In the process of saving lives, bedside manner and communication may suffer. Host Elizabeth H. Mack, MD, MS, FCCM, is joined by Lauren Rissman, MD, to discuss the eye-opening experience Dr. Rissman had when she was admitted to the ICU from the labor and delivery unit and the importance of having a patient advocate (Rissman L. Pedtr Crit Care Med. 2021;22:1072-1073). Dr. Rissman is a pediatric specialist in the Division of Pediatric Critical Care Medicine at Ann and Robert H. Lurie Children’s Hospital of Chicago in Chicago, IL.

*If you are unable to play the podcast please click here to download the file.

Transcript:

Dr. Mack: Hello and welcome to the Society of Critical Care Medicine’s iCritical Care Podcast. I’m your host, Dr. Elizabeth Mack. Today, I will be speaking with Lauren Rissman, MD, on the article, “A Hard Learned Lesson on What It’s Like to Be a Patient,” published in the December 2021 issue of Pediatric Critical Care Medicine. To access the full article, visit pccmjournal.org. Dr. Rissman is a pediatric intensivist and palliative care fellow in the Division of Pediatric Critical Care Medicine at Children’s Hospital Los Angeles. Welcome, Dr. Rissman. 

Dr. Rissman: Thank you for having me. 

Dr. Mack: Do you have any disclosures to report? 

Dr. Rissman: No disclosures. 

Dr. Mack: Thank you. What led you to write this piece?

Dr. Rissman: I have always been somebody who’s found peace in writing. I started writing when I was about 13 years old and bullied during middle school. I’ve found that writing has been a beautiful outlet throughout my life. With this wild childbirth experience, I found that writing was another outlet for me to feel and relive things without having to hear everybody else’s perspective, then also eventually share this story with other people. 

Dr. Mack: Thank you. It was really beautiful and moving. I’m grateful to you for putting it into writing. Do you mind sharing a little bit about patient advocates with our audience? 

Dr. Rissman: The biggest takeaway that I had from our awful experience is that my husband was really the one who saved my life. The medical system is complex and it’s evolving and it can be foreign to a lot of people, and patient advocates really do come in all flavors. In our narrative, it was my husband. It can be a parent, a nurse, a therapist, a consulting physician. In our field, at least in pediatric critical care medicine, we often associate patient advocates with the words “difficult parent” behind closed doors. But advocates should be held with higher esteem. They’re synonymous with experts. In our story, my husband was the one who was at our bedside 24 hours. He was the one who maintained continuity when others were handing off. To maintain a real therapeutic alliance, it takes an advocate’s courage and clinicians’ humility to be able to achieve it.

Dr. Mack: Thank you so much. You mentioned that your husband was that common thread and a source of continuity. What are your thoughts on family presence at the bedside, particularly in intensive care units? 

Dr. Rissman: A family’s involvement in advocacy is really the integral component in a patient’s care. They’re there, they know the patient from before they were a patient, and that speaks volumes. During COVID, with hospital restrictions, parents and, by default, advocates are often not allowed at the bedside or only during visiting hours, which potentially leads to harming a patient’s care. Especially in our case, where my husband was there after hours, and I had to pull strings and say, hey, I’m a physician here, I’m at this hospital, I work just across the bridge, and he was allowed to be there for longer periods of time because of that. So it was after hours that my husband called a physician who wasn’t in house to come evaluate me because he felt like he wasn’t getting answers or being heard by the medical team who was currently inpatient. We got lucky. A lot of people are not as lucky as we were.

Dr. Mack: Thank you so much. How does this experience translate to your practice as an intensivist and as a palliative care physician at the bedside?

Dr. Rissman: It’s changed. I use the word “expert” directly with parents when I’m talking with them and I ask them questions in a way that I wouldn’t have before. I’m thinking in particular of some of our more medically complex patients where there’s an assumption that we as physicians know best. But really it’s the parents who know best. By taking a more humble stance and using words like “expert,” I feel like I am learning more about the patient and family and it’s changing their care. I commend parents for showing up and being present at the bedside or both showing up to clinic visits because that’s also a challenge and an important part of patient care.

I feel like I’ve been listening more and speaking less. I think in general we’re a little bit anxious about silence. I feel like now I’m taking a longer, deeper breath to allow for more silence. The silence allows for more beautiful dialogue that I wouldn’t have expected before. I acknowledge how difficult it must be to be a parent of a patient in the ICU.

Most recently in palliative care, we have a patient in the ICU and I talked about how challenging it must be with all the wires and tubes to be able to snuggle, which is an incredibly therapeutic part of patient care and maintaining that sense of what it means to be a parent. I think naming it has been a really important part of changing my practice at the bedside.

Dr. Mack: Thank you so much. What, if anything, would you change about our training as intensivists if it were up to you?

Dr. Rissman: Well, I’m biased, but I think that narrative writing has been an incredibly important coping mechanism for me. I’m imagining that if intensivists were required to sit a moment with their thoughts, I think that really beautiful things would come from that. Also biased, I would recommend that everybody does a palliative care rotation. I don’t think that everybody needs to do a palliative care fellowship, but I think that working with a palliative care team has really opened my eyes to what true advocacy means. 

Dr. Mack: Thank you so much. And the pediatrician in me of course wonders how your daughter is doing now.

Dr. Rissman: Juniper is great. She is 10 months old, about eight months adjusted, and she’s got a stellar pincher grasp, which is something that I was not expecting for this corrected eight-month-old. The real highlight of my day is coming home to her and rocking her to sleep in the big orange chair in the corner of her room.

Dr. Mack: Wonderful. Is there anything else you’d like to share, Dr. Rissman? 

Dr. Rissman: I guess the only thing I can think of is that being a patient is a real test of vulnerability. It opens your eyes into the medical system in a way that we don’t learn as practicing physicians. Being the patient is awful. In this system, you just see all these broken fragments that you’re trying to make sense of. I’ve been in it for a while now. It just opens your eyes to an incredibly unexpected aspect of what it is like to be a patient. 

Dr. Mack: I’m sorry you had to go through this. I’m grateful to you for putting your narrative out there. Thank you again for joining us on the podcast and sharing more of that vulnerability. 

Dr. Rissman: Thank you. 

Dr. Mack: This concludes another edition of the iCritical Care Podcast. For the iCritical Care Podcast, I’m Dr. Mack.

Elizabeth H. Mack, MD, MS, FCCM is a professor of pediatrics and chief of pediatric critical care at Medical University of South Carolina Children’s Health in Charleston, South Carolina, USA. Dr. Mack received her bachelor of science and medical degrees from the University of South Carolina. She completed her residency at University of South Carolina Palmetto Health and her fellowship at Cincinnati Children’s Hospital Medical Center. She also completed a master of science degree with a focus on epidemiology and biostatistics at the University of Cincinnati. Currently, she serves as chair of the American Academy of Pediatrics Section of Critical Care and is past chair of SCCM’s Current Concepts in Pediatric Critical Care Course. 

Join or renew your membership with SCCM, the only multiprofessional society dedicated exclusively to the advancement of critical care. Contact a customer service representative at +1 847 827-6888 or visit sccm.org/membership for more information. The Society of Critical Care Medicine Podcast is the copyrighted material of the Society of Critical Care Medicine. All rights are reserved. Statements of fact and opinion expressed in this podcast are those of authors and participants and do not imply an opinion or endorsement on the part of the Society of Critical Care Medicine, its officers, volunteers, or members or that of the podcast commercial supporter.

Some episodes of the iCritical Care Podcast include a transcript of the episode’s audio. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record.

Disclaimer