Quality of Life for Tracheostomy Pediatric Patients in Vellore, India
Global Health Blog: India 2018
From the gracious visions of Dr. Kevin Sykes, Dr. Sufi Thomas, Dr. Shannon Kraft and Dr. Alex Chiu, I begin my month abroad heading to Christian Medical College in Vellore, India as part of the Global Health Track at the University of Kansas Medical Center (KUMC). This research track was established, in partnership with the faculty, by Dr. Sreeya Yalamanchali, current chief resident in the KU Department of Otolaryngology.
Christian Medical College and Hospital (CMC) first opened its doors in 1909 under the direction of Dr. Ida Scudder, an American missionary, as a one-bed clinic to serve women. In 1902, she built the 40-bed Mary Taber Schell Memorial Hospital for women and children. The main hospital moved to its present location in 1924, and treatment was extended to men and children. At present, it is a 2,234 bed multi-specialty, tertiary care teaching hospital with patients from all over the world. Dr. Naina Picardo, Associate Professor of the pediatric ENT unit at CMC and a previous Modale Scholar of KU, has graciously collaborated with Dr. Yalamanchali before me. Now, instead of pioneering this relationship, I am tasked with cultivating it and, for that, I feel beyond privileged.
Through Dr. Naina's vision, we have extended our collaboration to include faculty of Children's Mercy Hospital: Dr. Daniel Jensen, Assistant Professor and Dr. Pamela Nicklaus, Pediatric Otolaryngology Fellowship Director and Associate Professor. Children's Mercy Hospital (CMH) of Kansas City was first imagined in 1897 by the two sisters Dr. Alice Berry Graham, a dentist, and Dr. Katharine Berry Richardson, a surgeon, as a single bed in an existing women's hospital. The first standalone hospital opened in 1904, quickly outgrowing its capacity and moving to its second location in 1917 before moving to its final location in 1970. Currently, it is a nationally recognized, academic and tertiary referral hospital for pediatric patients with multiple subspecialties and 301 beds at its main campus
Both institutions have rich foundations in missions of mercy and serving patients from all walks of life. This project takes root in these foundations and is under the guidance of two robust ENT departments. Here, we aim to investigate the quality of life of pediatric tracheostomy patients and their caregivers in Kansas City and Vellore, India. This project centers on understanding barriers to tracheostomy education, qualifying the caregiver experience, and identifying methods to improve quality patient care. In this collaboration, we challenge ourselves to grow beyond the tired method of retrofitting Western medical practices to a non-Western country and to understand what patients and medical providers on other side of the world may have to teach us. Though I am mindful that my opinions and observations are colored through my American glasses, that is where this project takes root--that across oceans of culture, barriers of language, and vastly different resources, there remains this unifying drive to understand our patients and change their experience.
I am both eager to get started and anxious of the shoes I must fill. While nothing can be completely accounted for, I remind myself I am not alone on this journey: I have the backing of three departments, all who are working for our success and who are lending their knowledge, expertise and wisdom to this project and relationship. As I journey, I task myself to stay humble; to remember the visions of our founders; to channel the drive of my mentors; and to draw inspiration from our patients. By sharing our perspectives and relying on one another, we are a true collaborative that has the potential to expand beyond my short time abroad.
First Days: November 1 - 4, 2018
It is easy to be caught up in the whirlwind of India on first arrival: queues pose as examples of organized chaos, and the native language of Tamil sounds like a mumbled flurry of consonants. I feel lost, tired, and confused. In my jetlag, I struggle to negotiate a cup of coffee. In addition to being unable to speak the language, I am puzzled by the strange but infamous Indian head-shake that simultaneously means yes and no, as well as a variety of other interpretations. My taxi from the airport broke down no less than 4 times before I made it to Vellore, stopping periodically at different road-side stalls where my driver is told they have the part, but to come back in 5 minutes (which really means anytime between 5 minutes to several hours), and they never manage to procure even a mechanic. Eventually, I made it to the Bagayam campus of CMC, which offered relief from the crowded and noisy streets encountered on my tour of the various auto-shops along the way from Chennai to Vellore.
After travel, paperwork, badging, and more paperwork, the following day I make my way to CMC. The hospital has long outgrown its footprint, and patients spill over into every available space. Sometimes it feels like there is no room to breathe, let alone navigate the winding corridors. I meet the unit II (pediatrics) ENT department and my mentor Dr. Naina, which has been a long-anticipated event since our introduction over emails dating back to over a year ago. I am immediately greeted by warmth and excitement from every member of the staff, most enthusiastically Dr. Naina. Then in a manner that matches the urgency and bustle of the hospital that surrounds us, we waste no time in getting started and immediately take action to interview our first patient on day one. We buzz through the questionnaires with an intense efficiency and, then, just as matter-of-factly, we decannulated the patient. In the span of less than 30 minutes, our patient and her family, who over the years have undergone such hardship and sacrifice on behalf of their daughter, were relieved of her tracheostomy. I felt honored to share in this moment of triumph. Though, I think if I would have blinked, I would have missed it. In nearly the same breath, after a rushed hug and unceremonious celebration with Dr. Naina, the family was ushered out to their next appointment, and I was whisked off to rounds, trying not to lose myself in the maze that is CMC. While, so far, the experience has been at times dizzying, I already feel grounded in the work I came to do.
Week 1: November 5 - 11, 2018
After a restful weekend and some time spent exploring Vellore, fellowship and collaboration weave their way into my work and study at CMC. Between patient caregiver interviews, Dr. Naina and I have strategically organized meetings with faculty and staff from a variety of departments that also care for pediatric tracheostomy patients.
One such provider is Dr. Pragathesh, a pediatric critical care consultant. He shares our concerns about patient and caregiver quality of life and similarly wonders how his own patients fare after leaving the PICU. Dr. Pragathesh has been working with the pulmonology, pediatric, and ENT departments at CMC to start a multidisplinary outpatient service for patients after prolonged respiratory failure for pulmonary diseases such as ARDs (acute respiratory distress syndrome). He is eager to hear of the medical home model our own vent clinic at CMH exemplifies, as Dr. Pragathesh hopes to reimagine the current workflow of the OPDs (outpatient departments) for this clinic. OPDs at CMC provide a single room for the physician, which patients quickly rotate between. Each provider sees upwards of 40 patients with each clinic, and this constant flow of patients is necessary given the nearly 8,000 patients who visit the OPD building each day. Because of this demand, it is infrequent for providers to meet together for a single patient; however, this is not for absence of teamwork at CMC, which seems to be at core of the institution. They host many multidisplinary case conferences and, at the drop of a dime, I will see physicians call or meet with one another for an impromptu consultation.
These spontaneous moments seem to define the energy of the hospital. A brief minute-long hallway encounter leads to an in-depth meeting with me and two skull base surgeons in the ENT department to discuss their work on juvenile nasopharyngeal angiofibroma (JNA) as areas for future collaboration. And reminiscing about Dr. Sreeya Yalamanchali's work with the portal audiometer, SHOEBOX, (read more about her experience below) allows me an invitation to see the progress they have made incorporating portal hearing services into their community health programs! While structure and schedules can easily be dismantled by these passionate but unprompted encounters, somehow, at the end of the day the work is done, appointments are kept (albeit sometimes later than proposed), and new collaborations are founded. While Dr. Pragathesh's vision may challenge the current system, it is obvious that CMC as an institution is constantly imagining beyond their current practices, serving as a model of innovation for healthcare in India.
I also tour the Neuro ICU with sister Mercy Jesudoss, a nurse who visited KUMC in 2013 as a part of the Modale Fellowship along with Dr. Naina. She greets me as an old friend and provides insight into the daily care and discharge education for tracheostomy patients. The Modale Fellowship was pioneered by Dr. Mani M. Mani, Emeritus Professor of the Facial Plastics Department at KUMC and former CMC graduate. Through the KU Office of International Programs, an exchange program between CMC and KUMC Departments of Nursing and Allied Health has been active for over a decade. And, therefore, it is at every turn I find yet another person who was briefed on my arrival. Each extends an offer of coffee (which I can now order independently), a tour of Vellore, or simple advice and encouragement. In the words of one such colleague, once you know one person at CMC, you seem to know everyone. My evening is filled with activities, including: kurta shopping (a traditional Indian garment) with perioperative nurse Anita Jayakumar; a rooftop dinner with the family of Orthopedic consultant Dr. Justin Arckiaraj; and an invitation by the ENT department to their welcome event for new fellows and interns. I also begin to discover the international students on campus who help me find the best restaurants and navigate the public buses. We even have the chance to celebrate Diwali and enjoy the fireworks from atop the College Hill.
While I arrived feeling uncertain, much to my surprise, I seem to have been unknowingly integrated into the CMC family, the sentiment compounded by the practice of strangers and friends alike greeting one another as "brother" or "sister". Next week, more study participants are scheduled, and I will observe how this "family" serves its siblings through the community health outreach programs.
Week 2: November 12 - 18, 2018
Among our research participants, one theme consistently reappears in conversations: there's limited access to help outside of the home. Many caregivers have moved away from their family networks in order to be closer to healthcare centers. In some households, the second caregiver (and income earner) travels for extended periods of time for better paying work, thus leaving a single care provider at home with a tracheostomy dependent child. Imagine, sometimes without reliable electricity or running water, when both the care of the child and frequently income for the family, is dependent on one person. With no one else to look after the child at home, cash must be generated from work that must be performed with the child always at your side. Each day there is the constant dilemma between buying food or medical supplies to clean and suction the tracheostomy. Each night is a struggle between needing to sleep verses worrying you will not wake when the child needs immediate suctioning. For many of our patients, they fight these battles without help from family or neighbors. This story of isolation and vulnerability, is not unique to pediatric tracheostomy patients nor to other types of patients in India. It is a common problem for patients with chronic diseases and their caregivers in most countries, including the United States. The question is, how can we better support these families? In the U.S., one solution of paid in-home nursing or care assistants is available to some, particularly those with the right insurance plan, comorbidities, or financial situation. But another model, accessible for patients in Vellore and its surrounding villages, is reliance on a strong community healthcare network.
CMC has been a leader and role model for community-based care, with a variety of clinics and programs centered around this concept including: the Low-Cost Effective Care Unit (LCECU), the Rural Unit for Health and Social Affairs (RUSHA), the Community Health and Development Unit (CHAD) and the Community Health Nursing Program (CONCH). Together, these programs provide basic healthcare to both urban and rural patients of Vellore. Collectively, they provide low-cost care (including subspecialty services such as ENT, Ophthalmology, Obstetrics and Gynecology, Psychiatry and more) as well as healthcare screenings and immunizations. When necessary, they provide direct referrals to CMC for more complex care or additional work-up.
This week, I had opportunities to visit the LCECU as well as rural and urban divisions of CONCH. CONCH provides services at community health departments as well as in-home consultations through the College of Nursing. Their area of service includes 22 rural villages with a population of approximately 65,000 people, in addition to 23,000 people living in the urban periphery of Vellore. During our home visits, Jennifer Angeline, an intern in the Division of Audiology and Speech Therapy, has recently renewed hearing screens at these health encounters. Ms. Jennifer was able to provide several ENT referrals for some types of hearing losses; other patients were offered formal audiograms for hearing aids in addition to counseling and reassurance. While this service is largely thanks to the infrastructure of CONCH and Ms. Jennifer's own interest in community-based health, this re-invigoration was partly inspired by the innovative work of Dr. Yalamanchali's research validating a portable audiogram model.
Central to the need for these home visits remains inaccessibility to healthcare and often underlying fear. Many people expressed anxiety with healthcare providers in general, given their lack of exposure; some are isolated by illiteracy, language barriers, or financial limitations; and others still live in seclusion secondary to their disease processes or denial of their own healthcare problems. But thanks to attentive citizens of the villages, these clients (patients) were identified as needing in-home services. Through volunteer village leaders, nurses of CMC and the CONCH program were recruited to visit these homes. While these home encounters utilize a significant amount of two of the most valuable resources at CMC, time and expertise, they provide much more than individualized care. They also instill a sense of trust in the hospital and its providers, as well as the community by encouraging its participants to rely on each other. In this way some of our tracheostomy patients directly benefit from this strong network and are visited by members of the CONCH program during times of need and thus integrated into their community. While in no way do these initiatives alleviate all the care needs of our local families, they do help shoulder some of these burdens.
The core values of community, service, and generosity are evident in the daily work of CMC. They appear in the big moments like the ones mentioned above but also the little ones too such as freshly acquainted colleagues sharing new Indian treats with me (my current favorite being besan barfi) or a physician giving a patient ₹100 to help pay an unexpected bill. These daily reminders provide both moments of reflection as well as inspiration, and I hope to carry them home with me.
Week 3: November 19 - 24
Questions remain in my mind; how do we break down these remaining barriers? How do we reach our most vulnerable patients? This week marked the 40th year celebration of the mission at CMC's RUSHA (Rural Unit for Health and Social Affairs), and I was honored to visit the ENT OPD with Dr. Vikrem, junior faculty of ENT Unit III (Rhinology Division) during this time. After nearly half a century, the initial visions of RUHSA, have nearly all been accomplished. The directors, while obviously thrilled at their successes, also understand there is still so much progress to be made, and complacency will only lead to a dated and irrelevant health system. With this milestone, RUSHA hosted 2 renowned physicians who have pioneered missions in rural and global health, to help move RUSHA forward. During this consortium meeting, a new mission statement for RUHSA was drafted for consideration and approval at CMC. Knowing that others at CMC are also dreaming of change, brings me hope for our patients and their families. What an inspiring time to make my visit!
Unfortunately for the rest of Tamil Nadu, the horizon wasn't quite so bright. Cyclone Gaja hit the east coast bringing gale force winds and heavy rains with unexpected flooding. In Vellore, this meant many of our participants were unable to safely travel to CMC. While an obvious disappointment and setback to our study, Dr. Naina and I knew in advance that, given all the hardships our patients face, data collection would have to continue even beyond my brief trip. So in the face of the unexpected, I take a deep breath, hang my shoes up to dry, and keep trudging forward-even if the water is calf high.
On a lighter note, this week I was also able to celebrate Thanksgiving in Vellore. While I missed my friends and family at home, I certainly didn't celebrate alone. I had my CMC brothers and sisters to help me explore new traditions. Instead of pumpkin pie, I shared equally orange rava kesari with the ENT II unit, who decided after I described Thanksgiving to them to refer to the holiday as American Diwali. With my good friend Anita, I ate a delicious Thali meal, which just like at Thanksgiving, is followed by the same satiated sleepiness. Despite being halfway across the globe, I still found my heart - and my belly - feeling full this year.
Week 4: November 25 - 30, 2018
As my time in India ends, the insights from our patient encounters, paired with my own knowledge of patient care at CMH, spurred Dr. Naina and I to draft a plan to advance the practice at CMC, emphasizing standardized tracheostomy protocols and a multidisciplinary approach. Not only was I able to discuss our findings and recommendations to the ENT II unit, but I presented to the PICU team as well! Both units were supportive of our proposal and, together, they aim to finalize the goals in the upcoming weeks. It is both powerful and humbling that, in addition to my own transformation, my experience has provided the momentum to institute change at CMC as well.
This journey, which started with great uncertainty--uncertainty of the project's potential success, of a culture and place different than my own, and of a medical system in which I have never practiced--has been one of affirmation, but also revelation. It has confirmed my belief in collaboration, through which our successes would never have been possible. I have made more colleagues, mentors, and friends than I could have ever imagined. And I have learned more about myself than I can put into words.
Until I can return to India, the work will carry on, both from afar and on the ground. For now, the real work, the work to finish the research we started and to transform patient care, begins.