Charlotte Sweeney
I have experience as a physician, a patient, and a caregiver. I am a medical doctor—a surgeon in obstetrics and gynecology. In a hospital where I had practiced, I became a patient. Because of a missed diagnosis, instead of being treated with medications, my treatment resulted in major abdominal surgeries. I am currently the caregiver of another adult member of my family.
My experiences give me unique perspectives. I am able to see things through multiple lenses, so I re-focused my calling after retiring from practicing clinical medicine to serve as a patient and family advisor. I educate and advocate for patient- and family-centered health care for the safety and satisfaction of all of those giving and receiving health care, including professionals.
I believe we as physicians and professional care providers, caregivers, and patients need the expertise, perspective, and experience of one another, in unified, respectful collegiality and with the common purpose of enjoying the most economical, the safest, and kindest care, not only treating the illness, but tending to the person/patient in the context of their dignity and well-being as defined by the patient, regardless of diagnosis or anticipated outcome.
I can report first-hand hopeful changes in health care over the last couple of decades on several fronts from my working with medical professionals, educating medical students, residents, and staff, and providing opportunities for patient, family, and caregiver voices to be heard on health care teams.
I work as an associate medical director for a mission-driven, non-profit organization helping medical professionals demonstrate competence and/or address opportunities for improvement. In the volunteer area, I see medical students having courses designed for them, called Longitudinal Instructional Curricula (LIC).
LICs are world-wide and are gaining popularity. Rather than having all clinical rotations lasting a month or two, as in traditional medical school programs, in an LIC a medical student may follow the same patient(s) through all four years of their education so that they learn comprehensively about a slice of patient life over an extended period of time. Trainees engage with the patient’s family and caregivers, see their trials and tribulations in the hospital, clinic, during surgery, and through home care, and learn with interdisciplinary teams. Students witness with their reference patient(s) challenges in the employment, social, and spiritual realms of being a sick person, not merely through a single rotation in one teaching block of one year of training, as in traditional clinical training. LIC strengthens cultural competency, keeps the heart in medicine for the students, and averts depression and chronic stress by protecting and nurturing the idealism that bring most students into the caring profession. LIC grounds medical students in patient-/family-centered care with the patient’s clinicians, while mastering “core clinical competencies across multiple disciplines simultaneously.”1
I see rapid expansion of patient/family engagement in health care in the private and military sectors. For example, there are patient-family advisory councils (PFACs), in which patients and families volunteer to serve on councils on the local level in community and regional hospitals and clinics, as well as in academic hospital systems. These advisors are carefully screened and trained. Their role is to provide frank and candid information about what the patients and caregivers experience. This is meant to be constructive, non-judgmental feedback shared with the medical personnel for the purpose of improving safety and the satisfaction of giving, as well as improving the care received for patients, families, and professionals alike.
The North Carolina Quality Center (NCQC) has a state-wide patient-family advisory council (PFAC) staffed with volunteers from across the entire state. The PFAC’s mission “is to partner through the North Carolina Quality Center as a bridge for NC Healthcare Systems, patients, families, and communities in understanding Patient and Family Engagement and its impact on patient care.”2 The vision of the NCQC PFAC is to merge voices of patients and families into healthcare delivery systems to provide the best possible patient-centered care, becoming a nationally recognized model in that process.
Some Veterans Affairs Medical Centers (VAMC) have established veteran family advisory boards (VFABs) and are beginning to impact the VA culture. Patients, families, and advocates are a recognized part of the health care team.3 VetREPS, or Veteran Research Engagement Panel, is being formed at the Durham Center for Health Services Research in Primary Care to give voice to the patient/family experience.4
Some patients and caregivers from PFACs share their poignant personal stories with medical students, residents, physicians, and staff through trainings, workshops, and conferences. Presented in a non-threatening narrative, these talks and keynotes are invaluable for promoting patient-centered care. Sharing human vulnerability with compassion and dedication to patient values within a mutually respectful caring community powerfully strengthens all of us, freeing us to bring forth the best we have to offer one another, whether patient, family, unpaid caregiver, or professional.
There are many devoted, dedicated volunteers and professionals working diligently to bring a renaissance to health care in many fields of endeavor. The work is satisfying, exhausting, and worth every minute. The examples presented give me hope that change for safety, satisfaction, and healthier lives for all people while preserving an economy of resources is underway.
Articles cited:
1 CLIC overview. The Consortium of Longitudinal Integrated Clerkships. http://www.clicmeded.com. Accessed October 23, 2016.
2 NCQC Patient Family Advisory Council (PFAC) website. North Carolina Quality Center. https://www.ncqualitycenter.org/engage-patients/ncqc-patient-family-advisory-council-pfac. Accessed October 23, 2016.
3 Veteran and Family Centered Care (VFCC). Palo Alto Veteran’s Affairs Medical Center. http://www.paloalto.va.gov/services/vfcc.asp. Accessed October 23, 2016.
4 Veteran Research Engagement Panel. Durham Center for Health Services Research in Primary Care. http://www.durham.hsrd.research.va.gov/Veteran_Research_Engagement_Panel.asp. Accessed October 23, 2016.
Charlotte A. Sweeney, MD, is a Life Fellow of the American Congress of Obstetrics and Gynecology. Retired from clinical practice, she works part-time as an associate medical director. In addition, she volunteers extensively to activate patients and their caregivers for patient-centered health care, and veteran-centered health care.
