[AMA JOE From the Editor] “Nothing About Us Without Us”: Toward Patient- and Family-Centered Care

This article, excerpted here, is available in its entirety at the AMA Journal of Ethics

Around dinnertime on the second Tuesday of every month, a group of people gather in the Family Center at C.S. Mott Children’s Hospital in Ann Arbor, Michigan. Some are former patients, some are staff, and most are parents of pediatric patients, some of whom are deceased. They have been invited to share their perspectives and to help improve administrative decision making and care delivery.

I was first introduced to the concept patient- and family-centered care (PFCC) by this patient- and family advisory council (PFAC), an advisory body that promotes the inclusion of patient and family member perspectives in making organizational and practice decisions. As a student member over the past year, I’ve observed the dedication of these council members to improving health care culture by promoting PFCC values.

PFCC is built upon four fundamental principles: treating patients and families with respect and dignity, sharing information, encouraging their participation in care and decision making, and fostering collaboration in care delivery and program design, implementation, and evaluation [1]. At its core, PFCC is about including patients and families in all aspects of health care.

As part of a broader movement towards participatory medicine that advocates for collaborative partnerships in health care [2], PFCC means developing partnerships with patients and their families; recognizing their expertise by involving them as members of clinical care teams, advisory committees, and regulatory research boards; and promoting inclusion of patients and their loved ones in bedside and systems-level health care dialogues. Physicians can learn from patients and their families, and it is our responsibility to do so.

I first became interested in better understanding patients’ perspectives as an English major exploring disability studies and narrative medicine; I sought to understand persons’ health care experiences through their narratives. PFCC models of thinking encouraged me to broaden my scope and to appreciate the interconnectedness of patients’ and family members’ experiences. Although PFCC originated in pediatrics, the importance of families extends to all medical practice [3].

As I learned more about the tenets of PFCC and the many forms that PFCC takes in practice, I began to wonder about when and how striving to deliver inclusive care can be ethically complex. How should medicine accommodate families alongside patients, and what ethical challenges arise when trying to do so? Accordingly, this theme issue of the AMA Journal of Ethics considers some of the ethical challenges of implementing PFCC. In an attempt to make this issue as “patient- and family-centered” as possible, I invited feedback from the Mott PFAC and included patients and family members as authors…

 

Read the rest of this article at the AMA Journal of Ethics.

 

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[AMA Journal of Ethics] Jan 2016: Promises and Challenges in Patient- and Family-Centered Care

Over the past year, I have had the honor of being a theme issue editor for the American Medical Association’s Journal of Ethics. I am excited to announce that my theme issue about “Promises and Challenges in Patient- and Family-Centered Care” has just been published!

As someone usually on the writer’s side of things, I’ve really enjoyed this opportunity to get a better sense of the editorial process. Patient- and Family-Centered Care (PFCC) is something I’m passionate about, and putting together this journal issue was a unique opportunity for me to further explore the field.

As an issue editor, I had the chance to reach out to national experts, write up several theme-related ethics cases, and assist in providing edits of the articles. It’s been a great way for me to delve deeper into one of my areas of interest in ethics.

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[Pulse] On Earth As It Is in Heaven

I don’t know what prompted me to take this picture. In retrospect, I imagine this is what death looks like, or feels like. On death’s door, the vast promise of something more (perhaps heaven) lies ahead–pure and natural, mysterious in its perfection. But there are things that hold us back, stopping us like a red light. Eventually, something’s got to give.

on earth as it is in heaven

This photograph was featured in Pulse–Voices from the Heart of Medicine.

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[ACP IMpact] Medical Student Perspective: 10 Tips for Making the Most of Medical School

Since starting medical school a year ago, this website has become relatively silent. I’ve struggled with finding enough time to write for myself and for this blog. I’ve intentionally avoided reflecting on what it’s like to be a medical student here, because there’s just so much to say and so much that I’m still trying to figure out for myself. The American College of Physicians’ Internal Medicine Newsletter for Medical Students (ACP’s IMpact) asked current medical students “What’s Your Top Ten?,” which prompted me to take a step back and distill all that I’ve learned into a list with words of advice for incoming medical students. Although I’ll admit I wrote this list largely for myself, I hoped that it may also be of use to others going through this journey into medicine.

Here it is! I’d love to hear your thoughts.

After my last examination as a first-year medical student, I couldn’t resist this opportunity to write about all that I’ve learned beyond the science and clinical practice of medicine. Medical school is a learning experience unlike any other—and I know that I’m just beginning to scrape the surface—but the first year really is an adjustment for everyone. I’ve thought a lot throughout the past 10 months about how much I have changed as a person, for better and for worse. Although this list is specifically for first-year medical students, I believe many of these tips will sustain me throughout the rest of medical school. My hope is that they may do the same for you.

1. Learn from those around you. 
In medical school, you find yourself surrounded by people you can learn from: your classmates, who have all done extraordinary things and pursued unique passions to be here by your side; your professors, who have a wealth of information that they want to share with you and not enough time to do so; and your mentors, who are eager to impart their wisdom and support you personally and professionally in your journey into medicine.

2. Practice what you preach. 
This isn’t easy, not in medical school nor in a lifelong practice of medicine. Physicians have alarmingly high rates of depression and one of the highest rates of suicide (1). Only 50% exercise weekly, and many physicians struggle with being overweight (2). If we expect it of our patients, it is only fair that we make an effort to embrace the healthy lifestyles that we encourage.

3. Minimize multitasking. 
This may seem counterintuitive to the fast-paced world in which we live, but I believe it’s more efficient to focus entirely on one thing at a time. Try turning off your phone while studying or closing your laptop in class. Make an effort to be mindful and to stay focused on the task at hand despite all the other thoughts that may be running through your mind. Experiment with studying in silence.

4. Be fully present. 
Our patients will come to us to share personal and intimate details about their bodies and their lives—the very least that we can do for them is to be fully present in each moment of our time with them. The art of immersing oneself in a moment comes from being attentive and listening with both your mind and your body; it’s something we should strive to practice as a physician, a student, and a human being.

5. Understand that time is of the essence. 
I’ve found that in medical school, I’ve become acutely aware of time like never before. You learn what it really means to make the most of every minute of the day: flipping through flashcards in the few minutes before class, squeezing in a workout just before the gym closes, or talking on the telephone with friends on your walk home. When you are flooded by information in medical school you may feel pressure to rush through all aspects of your life. Instead of caving to this pressure to rush through everything; try to identify ways to work more efficiently and use your newly found time to slow down and recharge your batteries.

6. Feel.
Whether it be journaling, meditating, or talking to a close friend about the whirlwind of emotions that you feel throughout medical school, take time to reflect on your experiences. One study found that 53% of medical students had burnout (3); just as a career in medicine can be emotionally draining, so, too, can its training. Reflection in some form will help you put these experiences in perspective and come to terms with the sometimes-exhausting nature of medicine.

7. Hold on to what you know.  
Everyone comes to medical school with some idea of who they are and the kind of person they want to be in their career, whether or not you know what kind of physician that may be. Take the time to hold on to what you know, pursue what you are already passionate about, and do the things that you enjoy. Maintain and even strengthen the support system that you already have of family, friends, and loved ones.

8. Explore what you don’t. 
Nevertheless, medical school will no doubt change you. Make the most of this inevitable transformation—embrace it. While holding on to what you know, make space for trying new activities, for learning about what you may never have heard about. Be open to new relationships with the people around you, who are all facing somewhat similar experiences. Let yourself be malleable.

9. Have faith in the system. 
There’s no doubt that medical school is stressful. There is an infinite amount of knowledge to acquire, and medicine is an ever-growing field that never ceases to challenge our thinking minds. Sometimes, it can be overwhelming. It can be a daunting task to think about the sheer amount of knowledge that there is to remember. But, in the end, rest assured that this is all part of the journey.

10. Remember, practicing medicine is a privilege. 
Amidst all that happens in medical school, it can sometimes be easy to forget just what a privilege it is to be a physician. The opportunity to gain this wealth of knowledge about the human body and to study medicine, to devote a lifetime to its practice, is an honor. Being there for people at their most vulnerable is a humbling experience; medicine is gratifying to those who strive to make it so.

The first year of medical school is a time to grow not only in your knowledge but also in your own identity. I know that I’ve taken only the first steps into the field and that there is so much more for me to learn, but, for now, these realizations are enough. I look forward to carrying them forward with me throughout the rest of my journey.

References 
1. Hays LR, Cheever T, Patel P. Medical student suicide, 1989-1994. Am J Psychiatry. 1996;153:553-5. [PMID: 8599405]
2. Medscape Physician Lifestyle Report 2012. Medscape. 2012. Accessed at http://www.medscape.com/features/slideshow/lifestyle/2012/public on July 17, 2015
3. Dyrbye LN, Massie FS Jr, Eacker A, Harper W, Power D, Durning SJ, et al.Relationship between burnout and professional conduct and attitudes among US medical students. JAMA. 2010;304:1173-80. [PMID: 20841530] doi:10.1001/jama.2010.1318

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Returning to where it all began- WMU Medical Humanities Conference 2015

It’s strange to think that I attended and presented at my first conference two years ago to date; I have fond memories of that WMU Medical Humanities Conference as being one of my best presentations yet. This year, I was excited to return to talk about my illness narrative class, Grand Rounds: Exploring the Literary Symptoms of Illness through Narrative, and to discuss the role of illness narratives in pre-health education.

I love medical school, don’t get me wrong, but I miss this. It was so refreshing to have a conversation with humanities enthusiasts about the great educational impact of illness narratives, both from literary and medical perspectives and when considered at various stages in one’s career. It’s been a while since I’ve been so immersed in dialogue about illness narratives, so I enjoyed delving back into it and reflecting on how they’ve got me to where I am today.

It was nice to see some familiar faces in the crowd and to have a diverse group of people, most from humanities backgrounds but everyone with some interest in illness narratives and/or medical education. I decided to structure the session as an interactive discussion since I had more time, which was a bit unconventional at this lecture-based conference. But I think that as a group, we were able to further develop many of our personal thoughts and ideas regarding illness narratives as well as engage and interact with each other more, which I know that I found to be a rewarding and illuminating experience.

WMU lesson plan-Introducing Illness Narratives in Pre-Health Education

WMU Medical Humanities- Grand Rounds

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Bowties, Butterflies, and Band-Aids: a journey through childhood cancers and back to life

Bowties, Butterflies, and Band-Aids. That’s what childhood cancer looks like, according to Lyndsey VanDyke.

bow-ties-butterflies-band-aids-journey-through-childhood-paperback-cover-artThis memoir shares VanDyke’s “journey through childhood cancers and back to life.” From her first diagnosis with Wilm’s tumor at 11 to her relapse at 13 to her secondary thyroid cancer at 21, VanDyke’s coming-of-age has been especially scarred by cancer. With the voices of her family, friends, and care team alongside her own, VanDyke contextualizes her experiences within the views of others. She provides a more holistic perspective through this multiple lenses.

She organizes her reflections as The Cancer, Aftermath, and Reconstruction. In doing so, she illuminates her post-cancer experience, such as the paranoia from her numerous encounters, her experiences living in  fear. Even after pursuing a career in journalism, VanDyke realizes that her heart lies in medicine. She sets out on the path to medical school, eventually finding her place in Osteopathic Medicine.

“It occurred to me that medical school really wasn’t all that different from a cancer experience. It would be exhausting. It would strain my relationships. It would be insanely expensive” (307). And now, she’s Dr. VanDyke.

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a haiku

I’m not much of a poet, but I wrote a haiku!

Check it out in Pulse–voices from the heart of medicine.
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‘Wavin’ Flag’ at UNC Children’s Hospital

“When I get older, I will be stronger…”

Here’s another great video created by the Department of Pediatrics Hematology/Oncology at the University of North Carolina Children’s Hospital. This video doesn’t seem to be soliciting donations for research or marketing its programs; instead, it is merely “honoring and celebrating” these children and families affected by childhood cancer.

What I love about this video is its informality. While parts of it seem skillfully designed and planned, other moments are simple scenes from that the family retreat, which acknowledges that childhood cancer is an experience that permeates into the lives of loved ones as well. 

http://www.youtube.com/watch?v=DOd-6d4hvM8

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A noon conference for pediatrics residents with Chronicling Childhood Cancer authors

Perhaps it was the ambience of a brightly lit conference room overlooking downtown Ann Arbor. Maybe it was the audience of pediatrics residents at C.S. Mott Children’s Hospital, doctors devoting their lives to caring for children. Or it may have been this event’s focus on teens sharing their own advice for doctors based on their personal experiences. Whatever it was, something was very different about the Pediatrics Noon Conference that I led about the Chronicling Childhood Cancer book project from last year’s Literati book reading/signing event.

A couple months ago, I learned that residents hardly have an opportunity to interact with pediatric patients and their families outside of clinic visits. I was surprised–while medical school is peppered with patient presentations and opportunities to learn more from patients about their experiences, it seems as though these opportunities drop off in residency since residents have patients of their own.

That was unsettling to me, though. Especially with pediatric patients, I think that giving teens and young adults the chance to share their own experiences and perspectives can be invaluable, both for these youth as well as for people who are devoting their lives to caring for these individuals. It’s also a reminder of what it means to embrace PFCC, or patient- and family-centered care: the recognition that we as clinicians must view our patients as partners in their healthcare, and in doing so, acknowledge how much we can learn from our patients. Events such as these demonstrate that there are an infinite number of ways that we can improve and better care for our patients by hearing what they have to say.

At this event, I gave a brief overview of the research project before turning it over to three of the young authors themselves. Each individual shared some of their personal experiences and advice for doctors about just how much of an impact their interactions can have on patients. While the discussion was centered largely on the teens, their parents also contributed some insight. Overall, this was a change from the typical noon conference lecture, and it sounds like many appreciated what this unique noon conference had to offer.

I was more anxious preparing for this event than I have been in a while, and I think it’s because I’m more aware of how precious time in medical education can be. I know how much people fight over this time to make an impression on doctors in the making. It truly is incredible to me that I have had this opportunity; it’s crazy to think that I have been a part of their education, that I may have been able to influence the kind of physician that some of these residents may be with their patients.

One of the highlights for me was the very end. A number of people had to leave immediately since the event concluded right at 1pm, but I was amazed by how many people still chose to stick around and speak at length with each of these patients and their families. That meant so much to me, and I know that it meant a lot to the young authors. Instead of just getting their books signed and leaving, these residents took the time to connect with the teens and their parents. In the end, I know that this was the point of it all: to give residents a chance to get to know and learn from teens with cancer in a different way, and to make space for teens to share their personal experiences.

Pediatric Noon Conference- Outline

Pediatrics Noon Conference- Slides

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Childhood Cancer Awareness: September is just the beginning

Every year, I am energized by the month of September. There’s something about Childhood Cancer Awareness Month that brings me back to the Friday evenings that I’ve spent with pediatric oncology patients and their families over the years. I am reminded of the time I devoted to getting to know these children and teens through my research; I have been so moved by these children, teens, and families. This month reawakens in me my desire to raise awareness of childhood cancer, namely by helping to spread the word about the Chronicling Childhood Cancer book.

It takes an incredible amount of courage and strength to do what these young authors, these children and teens, have done– to share their personal experiences with cancer. That’s why I want these stories to be heard by as many people as will listen. I believe that the Chronicling Childhood Cancer book really is unique and compelling, that anyone and everyone can learn something from it. I guess that’s why I’m so motivated to share these stories and shamelessly promote the book.

I’ve blogged extensively (and perhaps annoyingly) about the book, but here’s the rundown:

UnknownChronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer is a book that was created from a project that I started with C.S. Mott Children’s Hospital patients for my Honors thesis in English. All of the proceeds of this book are donated to Mott: 50% to the Block Out Cancer campaign for pediatric cancer research at the University of Michigan and 50% to the Child and Family Life Program at Mott.

This month, I’ll be sharing daily excerpts from the book via Twitter to raise awareness about childhood cancer. It feels strange to be taking these quotes out of context and into the 135-character tweets, but my hope is that this is a way for me to make them more accessible to a larger audience. To offer a sneak preview of sorts, into the Chronicling Childhood Cancer book as well as into the personal lives of these young children and teens with cancer.

While September gives me momentum, I know that this one month is not enough for this important cause. So much has to happen, and to pretend as though one month were enough time to raise ‘enough’ awareness (if there even were such a thing) is absurd. So stay tuned for more about what I have planned for this year!

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