Balancing a Career with Special Needs Parenting: A Little Something Extra

By Jessica Schuster, MD

“The lows may feel lower, but the highs will be higher than you can imagine.” ―  Madison Area Down Syndrome Society board member

This was our first piece of advice given after my husband and I learned our middle son, Jacob, would have Down syndrome or trisomy 21. These words started a completely unexpected, but wonderful, journey filled with a little something extra we had not realized we were missing. It has been a hard journey with some struggles, but through it I have learned to see people ― patients, colleagues and other people’s children ― in the way I want the world to see my son. I have been taught by my experiences that it is the length of one’s journey and perseverance, not solely the final accomplishment, that are worth celebrating.

The start of this journey collided with a career scenario all radiation oncologists can relate to: Oral Boards prep. After a seemingly lifetime of preparation, I fully expected I would be encountering the “scariest” event of my life to date in May 2016 ― Oral Boards. However, in December 2015, my husband and I sat watching our second son on prenatal anatomy ultrasound. During the ultrasound, the technician spent extra time on the baby’s heart. She explained, “I am going to have the doctor come talk to you.”

Anxiously, we braced for “bad news.” The obstetrician revealed a complete atrioventricular (AV) canal heart defect. As if answering a step 1 board question, AV canal defect triggered in my mind an association with Down syndrome. Despite a desperate desire to capture and understand every word from the obstetrician and genetic counselor, I found myself sitting in silence. Swirls of words danced around me. In 30 minutes, they covered an array of different trisomies, statistics about death in utero, life expectancies, specialist visits and the need to decide about abortion. After hearing the word “abortion,” nothing more was heard as my mind started racing with a million other thoughts and hypotheticals.

Amid relentless specialist visits and further testing, my husband and I questioned our career choices. As we received confirmation of Jacob’s Down syndrome diagnosis and need for heart surgery at three months of age, I began to struggle with picturing a future as mom of a child with special needs and as a radiation oncologist. Despite knowing we needed support and help, it was challenging to share with our families, friends and colleagues. Each retelling of our baby’s diagnosis and heart defect forced us to admit our fear, vulnerability and unpreparedness to be special needs parents.

My original plans included intensifying Oral Boards prep while on maternity leave. Most parents reading that comment, including myself, will probably laugh! Caring for a newborn is wonderful, but it leaves little room for anything else. In mid-April 2016, we celebrated Jacob’s birth. But minutes later, Jacob's NICU journey would start. Within the NICU, learning respiratory and feeding supports, Down syndrome and AV canal defects, I realized I had replaced radiation oncology board preparation with “real life board preparation” by learning how to be Jacob’s parent.,/p>

Jacob made slow progress, but his oral intake was not increasing. It became clear he would not be discharged home prior to Oral Boards. The morning after my final study session, my husband and I were informed Jacob could be discharged home with a gastrostomy tube. This was our first emotional high! We were overjoyed by the possibility of our baby boy coming home. However, gastrostomy tube placement would require transfer to another facility. Outside of a few nurses, my commitments as a radiation oncologist seemed irrelevant to Jacob’s care team. We informed the NICU team that we consented to the procedure if the transfer did not happen while I was out of town for Oral Boards. Being present with Jacob on his first night in the new NICU was extremely important to me.

The day before my planned 36-hour trip to Louisville, Kentucky, a NICU team member popped in to alert me that after “some extra work,” the transfer NICU had accepted Jacob for the next day. Stunned, I stared as she left the room completely unaware of what devastating news she had delivered. This was a low moment. I was overwhelmed with feelings of being unheard and unseen. I was confronted with the fact that my two worlds seemed destined to be incompatible.

The Oral Boards paled in importance to my desire to care for my child. After wrestling with the decision, I arrived at the testing location largely due to a supportive husband gently pushing me and a gracious mother who drove me. Contrasting the devastating low of missing Jacob’s first night in the new NICU, we were able to celebrate Jacob’s homecoming and my Oral Boards results on the same day.

My husband and I learned that happiness from accomplishment is fleeting as special needs parents. We felt a pressure to push the next milestone to help Jacob be closer to a typically developing child and prove we were “good” special needs parents. Initially, we ran ourselves and him ragged, attending every possible therapy (feeding, speech, occupational therapy, physical therapy) and specialist appointments. We read about and tried alternative therapies ― diets, supplements, etc. The fatigue and guilt from constantly apologizing either to my patients or clinic staff or Jacob’s providers was (and sometimes still is) intense. The balance between work and special needs parenting proved to be difficult.

Thankfully, during this time, my husband and I met other parents through several local support organizations who related their journeys as special needs parents while balancing career decisions. They shared an openness about success, failure and regrets. Although no one used the term “sponsor” or “mentor,” this is the role these families served for us. They modeled and shared their life as a special needs parent while staying at home, part-time, or full-time work.

I decided ultimately to remain in my career full-time. I share my story not to say one choice is better ― remaining in versus leaving the workforce, but to validate how intense and complex work-life balance decisions can be for individuals. I also share, because I was helped immensely through the openness and willingness of other parents in the Down syndrome community to share experiences.

Prior to exposure to the Down syndrome community, as a physician and parent I found self-worth in accomplishments and saw failure until the next task was completed. However, the other special needs parents I met seemed to have “a little something extra.” They had the ability to celebrate progress and accomplishment. This represents one of the true highs. Some of my highs go completely unnoticed to most in society as they are not “big” accomplishments. I celebrated with uncontrollable happy tears upon Jacob’s hospital discharge after heart surgery, when Jacob learned to walk with confidence (age 3) and when he said “Mama, love you” (age 4 ½). Jacob’s accomplishments were celebrated, but Jacob himself and his journey are potentially even more positively impactful. For example, my oldest son, James, read a book called “47 Strings'' to educate his second grade class about how people with Down syndrome have a little extra in their DNA causing some milestones achievements a little slower than others. Through loving Jacob, our oldest son is often able to recognize differences in others and respond to those differences with kindness and depth of understanding well beyond his age. By opting to remain in our careers, my husband and I have been able to provide seemingly small insights to our colleagues, such as having the family present for inpatient team rounds and improved understanding of need for work hours flexibility.

From Jacob's medical experiences, I became a better radiation oncologist. My experiences remind me that, as an oncologist, I often meet people at one of their most vulnerable life moments. I remember that this uncertainty and fear makes information harder to process. I strive to emulate medical professionals that cared for Jacob, and also served as navigators through the complexities of his care. Establishing intersectionality between the patients, their families and myself starts with learning about the patient as a person first. Patients should not be reduced to only a “cancer patient.”

The Down syndrome community highlights the importance of person-first language, meaning a person is a person first, i.e., Jacob has Down syndrome versus Down syndrome kid. So, I often start visits with social history asking, “What is your career and what do you do for fun?” Rapidly over a few minutes, “cancer patient” transforms into John, avid biker and primary caregiver for his elderly mother who now has the additional stressor of prostate cancer. Without acknowledgement of a patient’s life before cancer and guidance from medical professionals like us, patients are often unsure how to rank pre-cancer life obligations and cancer care. Through my experiences as Jacob’s mom, I have learned to appreciate the “true highs” of helping patients navigate their balance ― cancer versus life.

Although I cannot travel back in time and remove the anxiety, fear and uncertainty from my 2015 self, I can share the message that from the lows there are also highs higher than I could have imagined. These highs are not because I have accomplished more; in fact, some might argue I have achieved less. These highs stem from a blessing that has allowed for unexpected personal and professional growth. Jacob has given us the opportunity to see all people in the way I desire the world to see Jacob. He is more than just a “kid with Down syndrome,” as each of us are more than just a label.

While an individual’s accomplishments deserve celebration, I find myself often admiring and celebrating people more for their journey and perseverance than the actual accomplishment. We have so much more to celebrate over a lifetime. I have such excitement for the future where my patients and children continue to help me grow as a radiation oncologist, colleague, mom, wife and advocate for parents and individuals with Down syndrome. I share our story to empower others to recognize that their own story and journey has value and is worthy of celebration and to highlight that the seemingly simple act of sharing has the power to help others.

Join the Gender Equity Community discussion on the ROhub to share: How has your journey shaped you?

Posted: September 28, 2021 | 2 comments

Words Matter: Presenting with a Culture of Respect

By Andrea Ng, MD, MPH, Chair, Annual Meeting Scientific Program Committee, and Christina Tsien, MD, Chair, Annual Meeting Education Committee

Words matter. As research has indicated and has been highlighted in a recent ASTRO Blog, it is important to use professional introductions, correct pronunciations of names and correct use of pronouns as well as respectful language around patients when presenting research at meetings. In an effort to improve the practice of using respectful language regarding patients and colleagues, the ASTRO Annual Meeting Steering Committee, in collaboration with the Committee on Health Equity, Diversity and Inclusion, developed Culture of Respect guidelines for presenters at the Annual Meeting.

The guidelines provide examples of appropriate and inappropriate language presenters and moderators can use to prepare presentations. We encourage all ASTRO members to review the Culture of Respect guidelines below and adhere to them when preparing presentations for the Annual Meeting and to continue to use them for all ASTRO meetings. In addition, these guidelines can help you think about the words you use when speaking with patients and their families. The guidelines can also be found under the Speaker Resources section of the Annual Meeting website.

Building a Culture of Respect at the ASTRO Annual Meeting: Language is Action

Historically, health care language has not consistently been centered on patient sensitivity. Insensitive health care language can have the inadvertent consequence of alienating and dehumanizing patients. It is increasingly recognized that “words matter” and can shape and reflect our behavior, and appropriate language is imperative to ensure that our patients and their families are treated with respect and dignity. Adopting language of respect extends also to the treatment of our colleagues. Recent studies have uncovered inconsistencies in the use of formal titles in the introduction of speakers at national and international conferences.

With an expanding audience due to increasing use of virtual technology and social media, and in order to foster a respectful, inclusive and bias-free culture, ASTRO and its 2021 President pledge to raise awareness, provide guidance and standardize appropriate language use at the ASTRO Annual Meeting. As such, the following directives, which will be continually evaluated, updated and modified, have been developed for participants of the ASTRO Annual Meeting during all ASTRO sessions and presentations:

  1. When describing research findings, or presenting the case of a patient, avoid language that:
    (i) Imply patients are responsible for their condition or outcome
  • Instead of: “20% of patients failed treatment”
    Appropriate language: “20% of patients had tumors that did not respond to treatment”
    Instead of: “20% of patients progressed”
    Appropriate language: “The tumors progressed in 20% of patients”
  1. Dehumanize patients
  • Instead of: “A 42 year-old paraplegic”
    Appropriate language: “A 42 year-old patient with paraplegia”
  1. Stigmatize patients
  • Instead of: “Substance abuser”
    Appropriate language: “Patient with a history of substance use disorder”
  1. When introducing or addressing speakers:
  1. Speakers who have a doctoral degree (e.g., MD, PhD, ScD, DMD, PharmD) should be introduced and addressed as Dr. Full Name or Dr. Last Name.
  2. All other speakers should be introduced as Mr./Ms./Mx. Full Name or Mr./Ms./Mx. Last Name
  3. Formal titles should be used throughout the entire session, including Q&A, in a consistent manner, regardless of the level of familiarity with each other
  4. Whenever possible, we strongly encourage session, panel or workshop chairs, moderators and all other speakers, to confirm ahead of time the correct pronunciation of the speakers’ names and their gender pronouns. Visit https://www.mypronouns.org/how for more information on pronouns.

ASTRO Leadership greatly appreciates the valuable contributions from all ASTRO Annual Meeting Faculty members, and their commitment to support a culture of respectful, collegial and inclusive interactions.

Posted: September 7, 2021 | 0 comments

ASTRO Advocacy Ramps Up To Thwart Medicare Double Whammy

By William Hartsell, MD, FASTRO, Chair, ASTRO Health Policy Council and Howard Sandler, MD, MS, FASTRO, Chair, ASTRO Government Relations Council

On April 28, 2021, President Joe Biden declared in his State of the Union address a commitment to “end cancer as we know it,” a goal ASTRO strongly supports. Sadly, three months later, the Centers for Medicare and Medicaid Services (CMS) unveiled two policy proposals that threaten to end radiation oncology as we know it. ASTRO was prepared for the possibility of Medicare payment cuts and is rolling out a comprehensive advocacy strategy to combat these flawed policies.

Medicare is planning a draconian double whammy for radiation oncology payments starting in 2022, with significant payment cuts totaling $300 million under the Medicare Physician Fee Schedule ($140 million) and Radiation Oncology Model ($160 million). ASTRO believes these cuts contradict the president’s anti-cancer goals as well as initiatives to advance health equity. Instead, these excessive cuts will jeopardize cancer patients’ ability to receive state-of-the-art care close to home. ASTRO is disturbed that practices treating rural and underserved populations will be hit hardest, limiting their ability to provide critical services to their patients and possibly forcing patients to travel long distances for treatment.

The facts are grim. If the Physician Fee Schedule cuts are finalized, payments to radiation oncology will have plummeted by 25% since 2012. The cuts proposed for 2022 for radiation oncology are among the highest of any medical specialty, with some key services dropping by as much as 22%. This follows on radiation oncology revenues dropping by 8% in 2020, according to an American Medical Association analysis, as clinics now try to recover while treating patients with more advanced disease that require more complex and costly treatments.

Meanwhile, the Radiation Oncology Model (RO Model) discount factor payment cuts are out of step with other alternative payment models and will put practices that are required to participate in jeopardy. Combined, the constant, year-after-year threats to clinics’ financial viability and out of control administrative burden will further contribute to burnout among physician staff.

ASTRO is sounding the alarm on the impact these cuts will have on cancer patient care. ASTRO’s Health Policy Council and Government Relations Council leadership, in concert with the ASTRO Board of Directors, is focused on dramatically scaling back the cuts stemming from both the fee schedule and RO Model and has developed an advocacy plan of action. The multipronged advocacy strategy will be in high gear through the end of the year and likely beyond. It’s important that members know some of the key features of that strategy so they can actively participate in stopping the cuts.

ASTRO is directly engaging President Biden and White House officials, with the goal of applying significant pressure on CMS to reverse course. In July, ASTRO sent a strong letter to President Biden and his senior staff and is following up with high-level meetings on the collective threats of the RO Model and fee schedule cuts. ASTRO already has secured numerous media reports highlighting for Biden Administration leadership the severity and impact of the payment cuts, and more public relations outreach is in the works.

ASTRO’s health policy team is engaged in extensive policy and data analysis to identify changes that must be made to the RO Model and fee schedule to protect access to radiation therapy. We’re working closely with partners in the House of Medicine on official comment letters to influence CMS.

To further influence the regulatory process, ASTRO’s government relations team is reaching out to congressional champions to contact CMS and demand changes that finally correct the RO Model and hold radiation oncology harmless from fee schedule payment shifts unrelated to radiation oncology. ASTRO has been working with legislators in the event congressional oversight is needed, and this initiative jumpstarted during Advocacy Day in late July when 100 ASTRO members met with 160 congressional offices on the proposed cuts.

ASTRO members should be on the lookout for action alerts in the coming weeks that will encourage radiation oncology team members to directly engage in grassroots efforts to urge members of Congress to support the specialty against the cuts. But there’s no need to wait, as senators and representatives are in their home states and districts for August recess and looking to meet with their constituents ― you!

ASTRO advocacy volunteers and staff will spend the next several months aggressively executing this strategy, recognizing it will be a great challenge to force CMS to change course. Therefore, ASTRO is preparing for the potential that legislative relief will be necessary before the end of the year.

For every aspect of the advocacy strategy, ASTRO is working closely with a committed group of radiation oncology stakeholders representing health professionals, patients, hospitals, office-based clinics, device manufacturers and more. We appreciate the hard work and support of our members and partners, as a unified and devoted team is essential for success against this dire threat.

Posted: August 17, 2021 | 0 comments

Presidential Symposium: Advancing Person-Centered Care

By Laura A. Dawson, MD, FASTRO, ASTRO President

I’d like to continue to share insights with you about ASTRO 2021. Today, I’ll be focusing on the Presidential Symposium. The theme is Advancing Person-Centered Care Through Innovation — innovating for clinically meaningful benefits that matter to patients. While this is innate in what we do, we sometimes don’t aim high enough or consider the patient perspective as well as we should. Let’s ask patients what matters to them.

The symposium will open on Sunday, October 24, with an introduction by me to be followed by Dr. Shekinah Elmore, who will eloquently discuss innovating with compassion. Then the session “Harnessing Scientific Innovation to Improve Person-Centered Care,” moderated by Dr. Curtiland Deville and Dr. Kristy Brock, will have a cast of world-class speakers discussing artificial intelligence, innovations in radiation delivery and imaging, ultra-high dose rate/FLASH, advanced imaging for bioadaptive radiotherapy, patient-centered radiopharmaceutical therapy and personalizing radiation therapy using molecular biomarkers. A patient advocate will help us put these inspiring talks in context.

The second session focuses on how digital health improves patient outcomes and experiences. We’ll hear from human factors engineer, Dr. Jen Horonjeff who will talk about patients and crowdsourcing. Next, Dr. Debra Schrag, a medical oncologist leader in patient reported outcomes and measurements will discuss PROMs and PREMs as the true north — why/when/how. Dr. Edmondo Robinson will discuss reducing disparities with digital innovations. Then, Dr. Ale Berlin will highlight how he helped move in-person health visits to digital health visits at a large cancer center over just a few weeks in response to COVID-19. A panel will follow, discussing how to make user-friendly changes quickly and how to innovate equitably, using advances in digital health. Dr. Nitin Ohri will share how he’s implemented wearables (e.g., Fitbits) in the radiation oncology clinic. How can we use these tools to improve patient experiences and outcomes?

Session three asks what are some of the potential future applications of radiation therapy that may expand the role of radiation therapy and improve patient outcomes? Radiation replacing surgery, for example for liver cancer — while we aren’t there yet, there is potential. Dr. Jinsil Seong will delve into this topic. This session will keep us thinking. How can we use radiation therapy in new settings with the goal of cure? How do we get there? A talk by Dr. Chandan Guha will discuss innovative targeting of the immune system and microenvironment, for example using radiation as a vaccine. Dr. David Palma will look into the future of oligometastases SBRT, beyond three, 10 and even more metastases. In another talk, Dr. Stuart Burri will challenge us to rethink pre-operative radiation therapy. Dr. Yaacov Lawrence will share how to treat the celiac plexus with SBRT to improve cancer pain. Again, a patient advocate will provide their important perspective.

The final session will be entertaining and educational. How do we best obtain evidence for new applications of radiation therapy? Traditionally we’ve use randomized clinical trials. Can trials be more efficient and equitable? Can we learn from clinical real-world data that is searchable and inclusive of patients who are not eligible for trials? A lively debate on randomized clinical trials versus real world data will be moderated by Dr. Sue Yom and Dr. Gita Suneja. Four speakers will offer points/counterpoints for randomized clinical trials versus real world data, and Jill Feldman, a lung cancer patient advocate and survivor, will provide her thoughts on this challenging topic. This will be an engaging and interesting opportunity for audience input.

The Presidential Symposium will highlight exciting advances in radiation technologies and teams who can successfully deliver high-precision treatment, keeping the goal on where we want to be and what outcomes matter to patients. Let’s elevate our specialty beyond delivery of high-tech treatment together to advance person-centered care. I hope this provides you with some sessions to look forward to during the Presidential Symposium. If you aren’t yet registered, I encourage you to learn more and make plans now to join us in person or virtually for the Annual Meeting. The Presidential Symposium will be available as part of the Digital XP programming. If there are other topics you’d like to learn more about, I invite you to drop me a note.

Learn more about ASTRO 2021 from my first blog: Embracing Change: Advancing Person-Centered Care at ASTRO 2021

Posted: August 10, 2021 | 0 comments

Embracing Change: Advancing Person-Centered Care at ASTRO 2021

By Laura A. Dawson, MD, FASTRO, ASTRO President

Not only am I embracing change, but I’m stepping outside of my comfort zone as I write my first blog post about ASTRO 2021, our Annual Meeting. I was so pleased to announce on July 8 that registration and housing have opened. We’re back in person in Chicago, and I can’t wait to see you there, as we start to step out of our “COVID hibernation.” If you’re unable to travel to the meeting, we’ve added a virtual option called Digital XP. And we’re also offering risk-free registration through September 30, so you can take advantage of early-bird registration rates (see registration fees and policies on the meeting website for more information). I encourage you to learn more about the meeting and make plans to participate!

Today, I’m excited to share my personal thoughts with you about the Annual Meeting and the meeting themes of “person-centered care” and “embracing change.” I will start with person-centered care, which focuses on the whole person as a unique individual, beyond their cancer diagnosis. Patients are someone’s child, friend, partner and/or parent. A person’s work and hobbies are often disrupted by a cancer diagnosis and treatment, and we are in a unique position to care for and support people during some of the most challenging times of their lives. Placing an individual at the center of their care, partnering with them and personalizing treatment based on a more holistic approach that incorporates various dimensions to well‐being, including a person's individual preferences and beliefs, is “person- centered.” This approach acknowledges physical and financial barriers to care and other determinants of health. It should lead to more compassionate care and trusting relationships with patients and their families and ultimately, can help to improve health care system efficiency and effectiveness for the whole community.

A special person-centered session at this year’s meeting will be The Science of Hope: Why and How to Approach the Most Difficult Situations in Oncology. It’s sure to be inspiring. Hope is important to patients; it’s appropriate, necessary and a critical component of quality care. In this session, we’ll cover why hope matters, the psychoneuroimmunologic basis of hope and finally, how to cultivate and sustain hope in clinical practice and in clinical trials.

No matter what scientific innovation is being discussed at the meeting, it should come back to a person-centered approach. Let’s aim high — for clinically important improvements in outcomes and experiences that matter to patients and their families. We also need to look after ourselves and have empathy for each other, as we have had different degrees of loss and burnout, especially during the past year and a half. Creating a more supportive, nimble work environment may allow us to be more accessible to patients, which should in turn improve the patient experience and outcomes, as well as caregiver satisfaction and wellness. 

The second theme is embracing change. I picked this topic because I’d like to see us be more open to new ideas and different ways of thinking to help shape the future of radiation oncology. Let’s prioritize strategies to improve diversity in our field, which will help to improve person-centered care. Be open minded when someone suggests an idea that conflicts with your own inherent biases and thoughts. Let’s think of new ways to more efficiently demonstrate the benefits of radiation therapy innovations and applications, for example, with novel pragmatic trial design and/or new ways of producing evidence.

As we think about change and the profession, we can also think about new roles and new team members. Radiation oncology is a team involving physicists, radiation therapists, engineers, other oncologists, nurses, social workers, dieticians and other health care professionals. Radiation oncologists never work in isolation. As we implement new technologies and artificial intelligence (AI), all our roles will continue to evolve, and we must continue to advocate for clinically important advances. Who should be part of the team to ensure that such change occurs in an equitable manner, reducing disparities in access to treatment and cancer outcomes?
Computer scientists who are experts in machine learning and AI are playing an increasingly important role in radiation oncology, making them an obvious new team member to radiation oncology departments. One of our Keynote speakers, Dr. Fei-Fei Li, an expert in AI and computer vision, will share her views on the future of AI in health care as part of the Digital XP program (also available to all full conference registrants).

We also can learn from human factors engineers, implementation scientists, behavioral scientists and economists. I’m excited about Dr. Dan Ariely’s Keynote that will address why people do the things they do, which is a consideration in how to provide the best care for patients, how to successfully implement innovations and how to advocate for our specialty. His book, “Predictably Irrational: The Hidden Forces That Shape Our Decisions,” focuses on the behavioral research behind decision making. I expect to gain some great insights into behavior during this address.

Dr. Wendy Dean, a social scientist, will talk about the structure of medicine and how some structural changes have led to burnout and languishing during her Keynote address. We don’t usually have a social scientist on the stage, so this will be a treat. There’s so much that they and other scientists have to offer to the field. Let’s learn from them about how to improve person-centered care. Learn more about the three Keynote speakers.

I’ve provided some background and an overview of select sessions we have planned for ASTRO 2021. I hope you’ve enjoyed learning more about what you have to look forward to this year. In my next blog post, I will share more information about the Presidential Symposium. If there are other topics you’d like to learn more about, I invite you to drop me a note or even better, talk to me in person in Chicago!

Registration is open with many options to attend “your way!”

Posted: August 3, 2021 | 1 comments