Category Archives: Miscellaneous Musings

These blog posts include my random reflections about illness narratives, literature, and medicine.

September 13, 2017 · 8:44 am

[Cancer Knowledge Network] World Cancer Day 2017

This article is also available at the Cancer Knowledge Network. Republished in honor of Childhood Cancer Awareness Month this September.

I could never have anticipated how much the field of oncology would excite me. As a teenager, I chose to volunteer with pediatric oncology patients on a whim. I found myself fascinated, and deeply humbled by the psycho-social challenges that these young patients and their families face. I found my way to medicine, and I wondered whether the medical field of oncology would be similarly intriguing to me.

It was. It was exciting for me to understand the patient population I cared so deeply about on an even more intimate level, as I began to make sense of the medical language and decision-making that so impacts these lives. As a medical student, I have had the privilege of caring for patients with a variety of cancers. I have helped care for patients with gynecologic cancers such as ovarian cancer, medically manage adult and pediatric cancers like leukemias and lymphomas, as well as surgically remove cancers like breast cancer and metastasized melanoma.

As I reflect on all my patients over this past year, my fondest memories come from caring for oncology patients. In the face of such a serious and devastating disease like cancer, I feel as though my relationships with patients were even more meaningful. I am grateful to have found a field that not only allows but encourages me to develop such intimate relationships while I care for people.

World Cancer Day is yet another opportunity for us to remember that cancer, like the human race, is inherently diverse. While we strive to find “the cure for cancer,” we must all remember how different each type of cancer is, as well as the great variety in how these cancers inhabit different bodies. Perhaps most importantly, cancer also affects each individual in a unique and unpredictable way. This month is a chance to appreciate the breadth and depth of all that people go through with cancer.

To me, World Cancer Day is a reminder that while we’ve made incredible progress over the years, we have so far to go. I am excited by the HPV vaccine, and the opportunities that we have for early cancer screening. I am encouraged by the Cancer Moonshot initiative and other efforts to fund further research. I look forward to increased awareness, as more people understand the harms of smoking and take steps toward cessation.

With this new year, I am realizing just how much I have learned about the biological disease of cancer, the clinical management and, most important to me, the challenges that people with cancer can face throughout and because of their treatments. With each new year, more people are diagnosed with cancer, but more people are also dedicating themselves to the cause of cancer. I look forward to seeing what this new year will hold.

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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Literary Narratives, Miscellaneous Musings

September 26, 2016 · 8:00 am

[Cancer Knowledge Network] What September Means to Me

This article is also available at the Cancer Knowledge Network.

Painting wooden figures is an all-time favorite craft for kids at C.S. Mott Children’s Hospital. Five years ago, a little boy with no hair sat beside me, splotching gobs of glittery paint atop a dragon made of wood. I don’t remember the boy’s name, but I remember his face, his kind eyes. When his mom came to get him from the playroom after he had been discharged, he turned to me. “This is for you,” he said. And before I could respond, he had bolted out of the playroom and was halfway down the hall, his left arm reaching up with little fingers curled tight around his mother’s hand.

I will never forget how moving it was for me, how touched I was by his altruism. This little boy, genuinely selfless, didn’t think twice about giving me his carefully crafted creation. He wanted a complete stranger to have it. Children like him inspire me.

September may be half over, but not a day has gone by that I haven’t thought about Childhood Cancer Awareness Month. Throughout my journey in medicine, although childhood cancer has been a cause that I’ve been passionate about for many years now, I have tried to keep an open mind about my career selection. But I’m the kind of person who has always known what I’ve wanted. This is who I am, and this is what I am about. I am determined, now more than ever before, to pursue a career in pediatric oncology and palliative care. I want nothing more than to dedicate myself to improving the lives of these children and their families in any way that I can.

But September is not about me. September is about all the children around the world diagnosed with cancer. All the loving parents devastated by the news. The siblings struggling to understand. The families that suffer so deeply. September is just one month, and 30 days is not nearly enough.

Let’s face it. It’s not ok. It’s not ok that so many children, instead of starting school this September, are being diagnosed with cancer. So many children are spending their days in and out of hospitals instead of in classrooms and outside playing tag at recess.

September reminds me just how important the cause of childhood cancer is to me, and how important it should be to all of us. Childhood Cancer Awareness Month celebrates the great strides that we have made in caring for children with cancer, and at the same time looks ahead at the great challenges that remain. This month calls for reflection, about how the landscapes of awareness, research, policy, and clinical care have all evolved with time. And, how much farther we still have to go.

The dragon sits atop my bookshelf. It reminds me every day of the little boy who taught me how to be selfless, who showed me the meaning of altruism even if he didn’t know what the word means.

So many of these young patients and their families have touched me over the years. I hope that I can someday return the favor, that I can touch the lives of those affected by childhood cancer with my own version of “glittery dragons.”

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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Miscellaneous Musings

June 18, 2016 · 1:00 pm

An open invitation for guest blog posts on illness narratives

When I first started this blog, I was excited to seize the domain illnessnarratives.com. Now several years later, however, I’ve realized that the focus of my writing here has evolved, and I’ve felt uncomfortable about how many of my posts have been about me and my writing rather than on illness narratives in general. This blog has been alive throughout a good chunk of my journey towards a career in medicine, from my undergraduate to my medical school education. It’s been challenging to find my direction, to balance sharing my own personal writing accomplishments and experiences with my thoughts on illness narratives that I encounter

To that end, I’d like to try something new. I’ve always felt it strange that I was the only voice in a blog that aspired to comprehensively survey the landscape of illness narratives.

This is an open invitation to anyone interested in writing a guest blog post. Here are some examples of what I’m hoping for, but I would welcome a post about anything that interests you related to illness narratives:

Review of an illness narrative, be it literature, film, music, or any other media
An illness narrative of your own
Thoughts about illness narratives as a genre
Ideas about the ethics of writing about illness
Any other interest you would like to explore!

Your blog post could be as short or as long as you like. It could be anywhere from a paragraph to a few pages; whatever works for you. All you have to do is email it to tkpaul@umich.edu, and I’ll get back to you as soon as I can. It’s that simple. Please don’t hesitate to let me know if you have any questions at all; this will be a learning process for me.

I’m hoping that this might change things up a bit, and that I’ll be able to breathe some life back into this website. Because it’s summer, the world is anew, and it’s time.

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Tagged as art, call for blog posts, Illness Narratives, Literature, Medical Humanities, Medicine, Narrative Medicine, writing

March 2, 2016 · 9:00 am

[Cancer Knowledge Network] Pediatric Palliative Care: A Multidisciplinary Approach

This article is also available at the Cancer Knowledge Network.

I have to admit—one of the first reasons that palliative care first piqued my interest was because I wanted to learn more about death. But as I’ve delved deeper into palliative care, I’ve come to realize just how much more comprehensive it is. While increasing access to hospice care is a component of what palliative care provides, palliative care does so much more for patients and families.

When I first started volunteering with patients at C.S. Mott Children’s Hospital, pediatric oncology jolted me to see how cancer can affect all humans, even kids. But the realization that terminally ill children face the unknown prospect of death every day was most jarring to me. Death was no longer an abstract fate for the elderly but rather a real concern for the babies I held, the kids I spent time with on Friday evenings.

As a teenager myself, it was especially hard to see other teens having to go through the experiences of being diagnosed and treated for a life-threatening disease like cancer. I became interested in how people of all ages, and especially children, understand and cope with death. I found that palliative care does not shy away from these end-of-life topics but rather starts many of these difficult conversations. Similarly, palliative care provides additional support by devoting attention to the pain that patients may be experiencing as well as the discomfort from symptoms and side effects.

The American Academy of Pediatrics (AAP) recommends that ideally, palliative care should begin (or at least be offered) when a child is first diagnosed with a life-threatening disease[1]. Pediatric palliative care aims to support young patients and their families throughout the entire experience of illness, from diagnosis to treatment, remission to relapse, and even end-of-life when applicable.

For kids undergoing treatment for cancer, imprisonment by IV pole and pain by poke may be what they know. Many have no choice but to curl into the humbling fetal position for spinal taps. These children hold on to the simple pleasures in their lives by putting a port on a teddy bear or playing with a Barbie doll that has no hair. Each child finds a different way to cope, and I have grown to admire these children. Pediatric Palliative Care, along with other health disciplines such as Child Life, provide additional support to help children cope with a cancer diagnosis and the difficult treatments that it entails.

We’ve come a long way in treating pediatric cancer over the past several decades, but it’s not enough to stop the uncontrollable growth of cancer cells without recognizing the psychological scars left behind by its presence. Cancer treatments can have life-long health consequences, and the support of pediatric palliative care involvement throughout the course of treatment has the potential to have a lasting impact on patients.

This, to me, is what pediatric palliative care is about. Pediatric palliative care is about ensuring that young patients have the best of quality of life that they can while experiencing life-threatening illness and its corresponding medical interventions. It is about devoting special attention to more than a child’s physical health but also their mental, emotional, and spiritual wellbeing. As a multidisciplinary team generally composed of physicians, nurses, social workers, psychologists, and chaplains, pediatric palliative care is able to support children as well as their siblings and parents more holistically.

Palliative care, especially in the pediatric world, encompasses end-of-life and much more. As the AAP states, “Reserving palliative care for children who have exhausted every curative treatment and are dying would mean that many other children would miss out on the benefits that palliative care can offer.” It has been encouraging to see how much pediatric palliative care has become established and valued over the past several years, and I look forward to getting involved in the field in the future.

[1] http://www2.aap.org/sections/palliative/whatispalliativecare.html

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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Miscellaneous Musings

Tagged as Cancer, childhood cancer, Medicine, palliative care, pediatric palliative care, University of Michigan

January 13, 2016 · 9:00 am

[Cancer Knowledge Network] Discovering a Passion for Pediatric Palliative Care

This article is also available at the Cancer Knowledge Network.

As someone who loves spending time with kids, I was thrilled when I was placed to volunteer on the 7th floor pediatric oncology inpatient playroom at C.S. Mott Children’s Hospital. Although I was just in high school, I had an early interest in becoming a pediatrician, and Mott seemed like the perfect place for me to learn more.

From talking to teens at their bedside to playing video games or doing arts and crafts with kids, I enjoyed every minute I spent with patients and their families. These activities meant so much more to me as I began to see how integral they were to sustaining children through cancer. These children endure levels of pain that seem unthinkable at such a young age, and I helped them find distractions in board games and plastic food.

With the backdrop of illness, these normal activities were never quite the same. One minute, I was racing trains with a 2 year old. The next, I was gripping his tiny arms and legs to help his nurse draw blood. He put his entire body into his scream, thrashing wildly. But as I held him afterwards, his peaceful demeanor made me realize that I made a difference.

As I spent time with siblings and parents, I witnessed the many ways that cancer permeates the lives of loved ones. As a volunteer, I supported them in any way that I could. I came to believe that talking with kids and families, letting them engage in conversation, to get their mind off things if they so choose or voice their concerns, unleashes the therapeutic nature of the spoken word. From the weather to a child’s prognosis, these conversations illuminated different perspectives of how cancer affects lives. My experiences with these young patients and their families largely contributed to my own desires to devote myself to medicine.

When I started medical school a little over a year ago, I would tell people that I was interested in becoming a pediatric oncologist. Even then, I knew that my interests may change throughout the course of my medical training, but I also knew that this is where my heart was and where it still is, at least for now. Within just a few months, I found myself slowly gravitating towards another discipline that also works closely with children with cancer: the field of palliative care.

Palliative Care aims to improve the quality of life for patients and families, often by alleviating symptom burden, providing pain management, helping with decision-making, and furthering communication about goals of care.[1] Palliative care aligns with many of the aspects of volunteering that were most rewarding for me, as well as my own philosophies about how I hope to practice medicine. From striving to alleviate pain and relieve the suffering that patients experience throughout the course of treatment to engaging in important and intimate conversations with patients and family members about experiences with illness, palliative care prioritizes aspects of medicine that most move me.

Often, these quality of life measures are goals of medicine in general, but to have an entire medical specialty devoted to these important issues has the potential to greatly impact patients, especially those in need. The baby who won’t stop crying from the pain, the teenager who may have wishes that deviate from those of caregivers, the parents who are deciding whether a clinical trial is right for their child—there is no question that cancer diagnosis, treatment, and recovery can present a series of uncertainties, challenging decisions, unimaginable pain, and life-long symptoms and side effects.

I hope that palliative care training will help me to develop my skills and make a difference in the quality of life experienced by children with cancer. By specializing in both pediatric hematology/oncology as well as in pediatric palliative care, I believe that I will be able to develop a more comprehensive knowledge base and gain experiences to ensure that both perspectives will always inform my care. Palliative care embodies the kind of care that I hope to be able to provide for my own patients and their families some day.

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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Miscellaneous Musings

Tagged as C.S. Mott Children's Hospital, Cancer, cancer knowledge network, childhood cancer, Illness Narrative, Illness Narratives, Medicine, pediatric oncology, pediatric palliative care, University of Michigan

January 11, 2016 · 9:00 am

[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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Tagged as "Nothing About Us Without Us", AMA, disability studies, ethics, Journal of Ethics, Narrative Medicine, patient- and family-centered care, PFCC, University of Michigan

January 4, 2016 · 9:00 am

[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.

Screen Shot 2016-01-01 at 2.37.48 PM

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Tagged as "Nothing About Us Without Us", AMA, ethics, Journal of Ethics, patient- and family-centered care, PFCC

December 4, 2015 · 1:00 pm

[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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Tagged as death, dying, heaven, pulse

October 1, 2015 · 9:00 am

[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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Tagged as first year medical student, medical school, medical student, medical student perspective, Medicine, top ten, University of Michigan Medical School

September 14, 2015 · 12:00 pm