Julie-Ann knows what it is like to live with a perpetual condition. Diagnosed at 18 months with cerebral palsy (CP), Julie-Ann shares her heartfelt stories as a patient in the healthcare system and the surprising encounters she’s had with strangers about her CP. As a mother to a child with a perpetual condition (epilepsy), Julie-Ann confronts the implicit biases of others while being aware of how her past experiences with CP have shaped her current attitude as a parent. Julie-Ann offers the following advice to clinicians, “…the patient is probably more of an expert on that particular disability than you [clinician] are if it is not your expertise”. And, she reminds all of us to be aware of our assumptions when talking to someone with a disability. Julie-Ann stresses the importance of “…engaging children about the need to understand difference and accept that bodies are different and move through the world differently…“
When Dr. Marleah Dean Kruzel learned she carries the BRCA (breast cancer) gene and has an 84% chance of developing breast cancer at some point in her life, it was difficult news to hear but not a complete shock. After watching her mother live with breast cancer, Marleah decided to have genetic testing. With a positive BRCA diagnosis, Marleah chose to increase her surveillance—one of four options for a positive genetic test result. She lives by her mother’s mantra, “You make the best decisions you can with the information you have at that time” and advises listeners to not be afraid of the uncertainty; you have to embrace it. “Knowledge is power”.
Dr. Jennifer Morey Hawkins begins the podcast with the unforgettable words told to her by the emergency room doctor, “You’re having a miscarriage…go home and take care of yourself”. Jennifer shares her heartbreaking story of having an ectopic pregnancy (1:50 pregnancies are ectopic) and the stories of other women she interviewed in her research. For listeners, Jennifer suggests developing a relationship with your OB-GYN, asking questions about unexplained symptoms such as pain, addressing grief, and confiding in a friend or co-worker. For practitioners, Jennifer encourages empathy and an acute awareness of how bad news is delivered, especially the news of a miscarriage.
“I realized for years and years she had hid this from me….I had no idea.” Barbara Lewis,Managing Editor of DocCom, shares the heartwarming story of her mother’s journey with dementia and how to address ambiguous loss. “Think of it as a new relationship….a new day, a new conversation”, says Barbara, providing recommendations for how children and loved ones might reframe their relationship. Throughout the podcast Barbara provides numerous tips: involving nursing facility staff, bringing in meaningful items, and setting up a remote laptop to communicate with their loved one. To help others, Barbara reads a fictitious letter she wrote from a mother to her daughter “…in the hopes people might re-assess how they act toward their parent…and that there would be no regrets.”
The holidays are a time for family gatherings and celebration, but it is also a time when addiction is on the rise from additional pressure and stress. According to DrugAbuse.com, December is the deadliest months for alcohol-induced deaths and it can be a difficult time for recovering addicts as well. In this podcast, Dr. Maggie, a primary care physician, shares the story of a patient recovering from addiction who unexpectedly dies from an overdose. She offers suggestions to listeners facing addiction (and loved ones supporting them) and advice to clinicians for addressing addiction bias and creating a supportive environment. “This [addiction] journey has plenty of ups and downs…it’s complicated…and we [physicians] will be there for them”. Dr. Maggie advocates for early addiction training for clinicians to help address this growing national crisis.
As a nine-year-old with perfect school attendance, Jennifer learned the many challenges having an incurable autoimmune disease, Crohn’s disease, and living in a rural area. After years of being angry at her body, Jennifer shares how she learned to feel grounded, advocate for herself, develop relationships and have a holistic and positive way to engage the world. For the listener who struggles with a chronic illness and searches for acceptance, Jennifer advises, “…inquire into yourself and if you feel holistically healthy in all aspects of your life.” For the clinical encounter, Jennifer encourages working with your physician and realize, “…there’s a limit to what we can do ourselves to keep ourselves healthy and a limit to what our doctors can do…[and] acknowledge this is messy and it can be frightening…and it’s okay…it’s okay to ask for help.”
“You need to lose weight. You need to lose weight. You need to lose weight”. For Dr. Jennifer (Jenn) C. Dunn, her weight has been the primary focus of her clinical appointments, so much so that when she went to see a physician for a cold, she was told to lose weight. In this podcast, Jenn reminds us of weight bias and its impact on individuals who are diagnosed with obesity. “The way that people treat me has a bigger impact on me than I feel that my actual weight does.” Jenn offers suggestions for clinicians in training when communicating with patients and advice for how to speak up and advocate for yourself when facing obesity stigma.
Thirty years after being diagnosed with cancer, Dr. Laura Ellingson joins the podcast to share her survivorship story. “It’s complicated…I’m not going to tell you the victorious narrative. I’m going to tell you what really happened,” she informs listeners. Laura comments on the two common endings to cancer stories, triumph or tragedy; there is rarely an alternative ending. For those who survive cancer, however, there is frequently a third story where the triumphant win over cancer is only the beginning. After seventeen surgeries and four life-threatening staph infections, Laura made the decision to have a leg amputation in 2008 and adds, “I thought, ‘now we’re finally done, the pain is done, the suffering is done, all the surgeries are done’…it is absolutely not done!” As a health communication scholar, Laura suggests we continue to offer hope for surviving cancer andpermission to stop cancer treatment along with informed consent that it is likely to have life-long consequences; “to deny the reality…is not ethical.” She mentions the importance of a survivorship care plan and the need to be realistic about life after cancer.
Dr Ellingson’s blog: realisticallyeverafter.blog
NCI Office of Survivorship: https://www.cancer.gov/publications/patient-education/facing-forward
Dr. Shauna MacDonald recounts her childhood health experiences growing up in Canada including her premature birth and five-week stay in the hospital (neonatal intensive care unit), her parents never had to pay a cent. In contrast, the average cost of an infant in a U.S. NICU is $3,000/day. Shauna shares some of her more recent encounters in the U.S. healthcare system and adds, “There was no question about how much it will cost [in Canada]….but here [U.S.], I think long and hard before I go to the hospital”. Shauna shares a brief history of the Canadian healthcare system, along with some of its inequities, and reminds us, “No system is perfect”. With medical bills being the leading cause of bankruptcy in the U.S., Shauna reminds us that with universal healthcare, “no one will be denied care because they cannot pay”.
What is it like to treat patients in the U.S. after living in a country with free healthcare? Dr. Marlene Gonzalez takes listeners on an unforgettable and inspiring journey from her teenage years as a political refugee to her current role as a physician caring for patients from around the globe. At the age of 13, Marlene emigrated with her family from Cuba to San Francisco, speaking only Spanish. Less than a decade later, she not only learned English but she also earned a degree in Biomedical Sciences, a medical degree, and recently completed her residency in Family Medicine. Dr. Gonzalez compares the pros and cons of Cuban and U.S. healthcare systems and how her personal experiences as a refugee have impacted her patient-centered care. Dr. Gonzalez provides tips for other Spanish-speaking patients, in Spanish, and reminds all of us why international physicians are vital to our U.S. healthcare system.