Dr. Neel Desai is a primary care physician based in Fort Mitchell, Kentucky. He is a contributing member to The Happy Doc podcast. He wrote a book called The O.I. Connection about the rare condition osteogenesis imperfecta, a rare genetic condition of faulty collagen and bone synthesis [summary of condition]. Dr. Desai spoke with me in September from Fort Mitchell, Kentucky.
We connected because I was working on a ‘medical mystery’ article about O.I., and had, by chance, come across the Happy Doc podcast, which I loved. But you had an interesting journey in medicine that prompted you to co-develop the podcast. Share a bit of that with readers.
I’ve been working as a primary care doctor for 15 years, and about 5 years ago, it got to a point where I was becoming frustrated with medicine. I was losing autonomy to administrative burden and inefficient electronic medical records. So I wanted to look for ways to build (digital) creativity into my life and regain some autonomy. Writing my book and being part of the podcast led me to some powerful insights. I realized creative pursuits helped me address frustrations with the current medical system. I also observed another common pattern: the rigorous process of becoming a physician can suck the creativity out of doctors in training. Conversely, we observed doctors, residents, and medical students working on a creative endeavor regained energy and fulfillment in their training, as well as in their personal and professional lives.
1.What is the HappyDoc Podcast?
The Happy Doc Podcast was started by Dr. Taylor Brana, as a third-year medical student, at a time when he was becoming disillusioned with his medical training, and as a result was just very unhappy. He began asking the question, ‘are there any happy doctors out there?’. Most of what he was seeing in his attendings was not good: burnout, lack of joy in medicine, and just disillusionment with their current station in life. He connected with me online, seeing that I had been out in practice, and asked me if I was happy. I had a unique answer to that question (I was happy when it came to initiatives aimed at educating the public about OI through modern technology ). He asked me if I wanted to join his podcast. The aim was to find happy physicians, discovering what helped keep them fulfilled in their work, and give listeners practical tips to do so in their own lives. I agreed to partner with Taylor and became the guest recruiter for the podcasts, and I also run social media engagement.
2.Let’s talk about what happened in Fall 2008 which led to your interest in O.I.
My wife and I were trying to conceive our first child and she had two miscarriages prior to this third pregnancy. This third one, a son, had made it to 17 weeks. During the ultrasound, the normally chatty ultrasound tech looked at the left femur (thigh bone) and fell dead silent. She abruptly left the room. She came back with the Ob/Gyn on call. He pointed out our son’s left femur was curved and not growing. He recommended we see a maternal-fetal specialist to set up an amniocentesis. We saw the specialist the next day. I’ll never forget how she delivered her diagnosis and prognosis: she said the findings were consistent with a skeletal dysplasia incompatible with life. She shrugged her shoulders, and said “I’m just being honest.” And left us in the room overwhelmed, heartbroken, shocked, and devastated. lt’s a great teaching point for any medical professional. Don’t ever deliver news that a person’s loved one is going to die without some compassion. That life changing moment prompted me to write an ebook called “The O.I. Connection,”. I found writing was very cathartic for me, helped to process my emotional trauma, and accept my son’s diagnosis. It also inspired me to help others in similar circumstances by bringing together resources for other OI families and caregivers in a practical and interactive way.
3.What can you share about getting to your ‘new normal’ after that diagnosis
My wife and I were obviously stunned with the diagnosis. But we wanted to educate ourselves as much as possible about OI. We found an online OI family community of support on Yahoo health groups. The group included several health professionals, physiotherapists, and an emergency room doctor. They had children with OI and first hand experiences dealing OI. They gave us hope as they had successfully navigated the road ahead of us. They told us about revolutionary treatments for O.I., specifically, medications like intravenous bisphosphonates to prevent fractures and reduce pain, as well as telescoping rods which expand like curtain rods to straighten out the bones. They educated us on how these interventions help children gain more strength to grow, improve function, activity, and have a happier and healthier quality of life. Ethan was born with at least 7 fractures (unknown if he had more). He required the rods, the medication, physiotherapy, occupational therapy, and started these early after birth. By 18 months he took his first steps with a walker. By 2 years old, he was running independently. It’s interesting, because as difficult as all this was, and still can be, at 10 years old today he can walk, swim, run, jump, dive, and dance. He still has to use his walker or wheelchair occasionally for safety or longer distances. He also academically functions at a higher level. He’s really into computers and space, for instance. I think even if there are physical limitations, many of these kids often adapt with their minds.
4.What is the biggest misconception about being a parent with a child with a chronic condition. Has it changed how you see your own patients?
The last thing any child with a chronic condition like O.I. wants is pity. What they want is compassion, understanding, kindness, dignity, and respect. A lot of people also assume that the subject is off limits for discussion, but we as an OI family embrace curiosity and asking questions, which is how all of us do better. I want people to ask questions and not be afraid to ask questions. I think keeping it taboo causes more problems. Asking questions leads to more understanding and acceptance. This goes for children with OI and answering their questions about OI as well. In regards to answering a child’s question about feeing less than or bad about why they have a chronic medical condition, I use the example of a parent I know explaining O.I. to her daughter with OI. She likens it to having blond hair or brown eyes or a birthmark: it’s just something you have, and nothing to be ashamed of. OI or any chronic illness can be hard as it affects how a family functions, but it can also affect marriages, jobs (especially with needing to take time off for fractures, surgeries, doctor, therapist, hospital visits), and can be very isolating and lonely for all involved. So one of the core lessons for me personally and professionally is the power of having a very strong supportive community to communicate with.
5.Switching gears how has this experience helped you approach your work as a doctor interested in advancing change.
All of this has really made me value strong communities. The role of community, as in having strong support networks and teams, is really important, and The Happy Doc community has been a huge part of that for me personally. A more proactive, as opposed to reactive, approach is really powerful as well.
In regards to advancing change, I think it’s time for us all to evolve in medicine. From what I’ve seen, it’s like medicine is dated and still stuck in the 20th century: there’s so much resistance to being innovative — poor EMRs, rigid traditional hierarchies, and using technology from the 20th Century (pagers, fax machines, etc) are barriers to where we could and should go. It’s 2019, and it’s time to practice medicine in the century we live in. We should embrace being proactive, innovative, and collaborative. We do this by amplifying what we value most: meaningful human connections. This occurs by reconnecting with our colleagues, our communities, and most importantly, with ourselves.
I use an analogy of it being like the medical profession was in the desert for most of the 20th Century, but now we’re in the 21st Century rainforest. The world expects us to just adapt to all the rapid changes over the last 20 years and thrive. But we can’t do this if there is immense inertia and if we don’t value questioning, curiosity, and creativity. Having outside interests – like podcasts or journalism—and integrating those creative outlets is important to develop current and future systems for the 21st century.
6.What does thriving mean to you?
Thriving means living your best life on your terms. Playing and loving your game unapologetically, unconditionally, and on your terms. Loving what you do, doing what you love. Waking up so energized that you can’t imagine doing anything else. And paying it forward and sharing your good fortune with the ones you care about most through the ups, the downs, and all the in betweens.
7.What are you most looking forward to now in general?
Creating a healthier, happier, wealthier, and wiser medical education system. A system where as healthcare professionals and patients, we are energized, enlightened, connected, and inspired. And most of all, to just enjoy the serendipity of the journey to the unknown and connecting to amazing people all over the world.
When Miguel Roger began chemotherapy for chronic lymphocytic leukemia last summer, he didn’t realize the challenges he would face with food.
“Once treatment started, I noticed a change in my appetite, and a lack of energy,” said the 65-year-old retired engineer.
His wife Jenny, 61, became his primary caregiver, and found it challenging navigating all the nutrition advice from books, their doctor, and the hospital nutrition centre.
“I once cooked him calf liver to help with his anemia,” she said, “I read it in a book, but when I spoke to Miguel’s doctor, we were told it wouldn’t help, since the anemia was not related to nutrition, but to the cancer itself and the chemotherapy.”
Nutrition is an under-recognized challenge for many cancer patients. And fad diets can cause unnecessary weight loss, disrupt treatment, and sometimes make outcomes worse.
Many patients struggle with navigating the “cancer-specific” dietary information found in popular books, blogs, and websites. A British study released last month found caregivers and patients were concerned about the lack of accurate and clear information — something Canadian health providers are keen to provide.
It’s easy for misconceptions to spread through websites, nutrition bloggers, books, and word-of-mouth.
“In clinic, I once overheard a woman saying how she was getting mega-doses of vitamin C, rose hip tea, bee pollen and antioxidants,” said Jenny Roger. “But I heard the dietitian advise that those things may not be regulated and could be contraindicated during chemotherapy.”
This is a familiar story to many cancer specialists and dietitians, including Thomas Jagoe, director of the McGill Cancer Nutrition Rehabilitation Program in Montreal.
One of his challenges is dealing with diet trends that conflict with what a patient’s oncologist advises. One trend is “short-term fasting” before chemotherapy.
“This is a hot topic of research but at this time the evidence doesn’t support that a patient who is already losing weight starve themselves for a few days,” Jagoe said.
In Halifax, it was an open line of communication that helped Stacey Sheppard, a dietitian with the Nova Scotia Health Authority, identify the real reason behind a patient’s issue.
“One patient with nasal cancer got advice from a holistic nutritionist to omit gluten. When we got to the bottom of the issue we realized that they actually had issues with swallowing crackers — so it was a swallowing issue, not a gluten issue,” she said.
But patients keep looking for answers outside the system. And it’s all about control, says Jonathan di Tomasso, a nutritionist who works with the cancer rehabilitation program at McGill.
“People often lose control over many aspects of their life when they are diagnosed with cancer. Food is something they can control, but the roar of misinformation out there is deafening,” he said.
Toronto-based naturopath Daniel Lander, who has an undergraduate degree in nutritional science, works closely with physicians to offer evidence-based nutrition advice.
“Patients are generally relieved when I tell them they don’t have to follow those strict diets, and I focus on making sure they are getting enough calories and important macronutrients,” Lander said.
He advises a Mediterranean-style plant-based approach that has lean-protein sources, lower animal products and lots of fruits and vegetables and whole grains.
“It’s nothing too exciting or flashy but from the science, that’s the best we can tell people to do,” he said.
In terms of good online sources of information, Daniela Fierini, a registered dietitian at the Princess Margaret Hospital, recommends the American Institute for Cancer Research, BC Cancer Agency and Nourish Online, but still cautions against the “one size fits all” model.
Due to a good response to chemotherapy and radiation, Roger’s cancer has been in remission for the last month.
“Now my appetite’s normal. I lost around 10 pounds at the start of the treatment but I think I have gained it all back … my energy level is fine and I’m no longer swollen,” he said.
The Rogers were cautious about following popular cancer diet trends and maintained open communication with their doctor.
“You can get caught up with reading things on the Internet and I think everyone should be working with their doctor. People need to have a bond of trust with their doctor. Some people don’t, and so they look elsewhere, which can sometimes be overwhelming and can cause more harm than it helps,” said Jenny Roger.
[by Amitha Kalaichandran and Shuang Shan] **Originally published in the Canadian Press/Toronto Star**
Here we were, 80 eager physicians from across North America in a large teaching kitchen in Northern California.
Surgeons have the best knife skills.
That might sound obvious in the operating room, but here we were, 80 eager physicians from across North America in a large teaching kitchen in Northern California in February.
Our white coats had been traded in for white aprons as we learned the first lesson of the day: The best way to dice an onion is to keep the root intact.
The veteran surgeon from Alaska was encouraging as I attempted to chop the onion into even cubes, as he had humbly done in less than 15 seconds flat. No tears were involved.
Next we went on to preparing grains like farro and cooking plant-based proteins like quinoa and lentils.
Much of the day was also spent addressing nutrition myths (for instance, low-fat diets don’t necessarily lead to weight loss), learning motivational interviewing techniques to help patients identify their readiness to make diet and lifestyle changes, reading nutrition labels, and most important, cooking nutritious meals on a budget — all with the aim of teaching doctors so that they can better educate their patients.
This wasn’t exactly cooking school — it was a three-day “culinary medicine” conference, which just completed its 15th year this past spring. Called Healthy Kitchens, Healthy Lives, there are several others that work along similar lines: Nutrition and Health Conference, Food as Medicine Conference, and most recently the Health Meets Food Conference.
Culinary medicine is an emerging field that teaches doctors to cook while also imparting practical nutrition information, and is defined as “a new evidence-based field in medicine that blends the art of food and cooking with the science of medicine.”
A 2008 study found that doctors coming out of medical schools in the United States lacked the knowledge to effectively counsel patients about nutrition. Similar findings have been reported among Canadian medical students and European residents. Even specialties like gastroenterology and cardiology, which often deal with diseases that have a large dietary component, include little training in nutrition.
I can relate: once in clerkship and residency, it struck me that what I thought I knew about nutrition was totally inadequate to address the questions patients would ask, and left me unprepared to understand and decipher the myriad new nutrition research and ever-changing recommendations that patients get bombarded with everyday.
The movement is gaining ground across North America as well as around the world, with researchers looking into how it could improve health outcomes for chronic diseases such as diabetes, obesity and heart disease.
As physicians themselves aren’t typically the best models for nutrition — long hours and on-the-run meals are common — bringing doctors into the kitchen may also be a way to encourage self-care as well, both through the mindfulness inherent in food preparation and the consumption of wholesome foods.
There are at least 10 culinary programs in the United States that are backed by a hospital, medical school or school of public health. As part of the medical education curriculum, they reach more than 2,500 doctors and other health professionals each year.
Each school approaches the field slightly differently. For instance, since 2012, Tulane University School of Medicine has offered a compulsory culinary medicine curriculum for its medical students while also reaching over a thousand medical residents through online courseware it has licensed to seven American residency programs. Dartmouth School of Medicine provides culinary medicine workshops to medical staff members, patients and the community through teaching kitchens. And Baylor College of Medicine’s Choosing Healthy, Eating Fresh (CHEF) program is a medical student led elective course which facilitates nutrition and cooking workshops for medical students and patients at Texas Children’s Hospital.
Stanford is one of the latest medical schools to jump on board. Co-founded by Dr. Julia Nordgren, “The Doctor is In … The Kitchen” program began last spring. The group meets one evening a week to learn about how culinary medicine is implicated in a real clinical story — for instance, a busy mother with a toddler who is a picky eater, or a patient with diabetes who is on a tight food budget. To be effective, culinary medicine cannot ignore the issue of food insecurity, which affects 12.7 percent of Americans.
My alma mater, the University of Toronto, started a mandatory culinary medicine program for medical students last year under the direction of Dr. John Sievenpiper. It involves an interactive cooking class, open-access lectures and a grocery store tour led by registered dietitians and chefs, where students learn to read labels and prepare simple meals. Late last year, more experienced physicians eager to advance their nutrition knowledge were offered a chance to enroll in an “update” on clinical nutrition which, among other things, will help separate fact from fiction with respect to popular diets for chronic diseases.
“Nutrition evidence is protean; it changes as we learn more,” said Dr. David Jenkins, a professor in the department of nutritional sciences at the University of Toronto whose research played a key role in the development of the glycemic index. “We need to allow students to critically think about nutrition, and extending this teaching into the kitchen could be one good way to do that.”
Studies show that physician beliefs about the role of food in preventive medicine, and cooking specifically, can translate to effective nutrition counseling for patients, leading to better dietary choices. In 2013, researchers reported that participants in a culinary medicine program reported a higher comfort level with cooking and were better able to assess patients’ nutritional status and advise them regarding nutrition changes, and in 2015, a culinary program at New York University reported improved culinary skills and budget-appropriate meal preparation.
Some medical educators question the effectiveness of nutrition counseling at a time when doctors are so pressed for time, or whether the 10 to 15 minutes allotted to a patient visit can cover the primary medical concerns and additional information about diet and cooking. But Dr. Nordgren notes, “it doesn’t take any more time to discuss a technique to cook a vegetable than it does to write a prescription.”
Still, she acknowledges it’s an imperfect system. She and others have reported that nutrition science is an emerging and difficult to research field. Programs across the country would do well to standardize objectives and curriculums. Recently, the European Society for clinical Nutrition and Metabolism and the American College of Lifestyle Medicine have called for a standardized nutrition curriculum in medical schools.
If Hippocrates really did say, “let food be thy medicine and medicine be thy food,” the culinary medicine movement takes it one step further with a nontraditional take on the traditional medical education adage: ‘see one, do one, teach one.’ And perhaps bringing more doctors into the kitchen could lead to fewer patients being brought into the hospital. Wouldn’t this be the sweetest of ironies?