Bringing Stories to the ICU
One of our current projects, funded by the Cambia Health Foundation Sojourns Scholar Leadership Award, is integrating the 3-Act Model (see above) in the Medical ICU at Hopkins Bayview. We are collaborating closely with leaders and team members in the ICU to integrate artful communication and systems change with the aim of improving person-centered care and systems outcomes.
Palliative Interprofessional Collaborative for Action Research (PICAR)
The PICAR team consists of Danetta Sloan, PhD, David Wu, MD, Janiece Taylor, PhD, Natalie Regier, PhD, and Rebecca Wright, PhD,BSc (Hons).
We are grateful to partner with researchers at the Johns Hopkins School of Nursing and Bloomberg School of Public Health in doing important work at the intersection of palliative care and social justice. Together, we are aiming to better incorporate the voices of our patients and families and communities, in all their diversity, in the care of those with serious illness using participatory / collaborative / co-design approaches. Our conceptual framework is described in this publication, “A Call to Action to Address Disparities in Palliative Care Access: A Conceptual Framework for Individualizing Care Needs.”
One project we are working on, funded by the Hillman Foundation, is entitled: “A nurse-led approach to improving palliative care in the ICU for Black populations.” Rebecca Wright, PhD, BSc (Hons), is the principal investigator for the project, and co-investigators include Danetta Sloan, PhD, and David Wu, MD.
Another project, funded by the Johns Hopkins Institute for Excellence in Education, is “Partnering with community members to design culturally sensitive goals of care communication training.” David Wu is the principal investigator, and co-investigators include Drs. Wright and Sloan, Drs. Chapla and Orozco from our Division, and several incredibly talented Medicine residents, Drs. Ekene Ojukwu, Amarpreet Ahluwalia, and Kamini Kuchinad.
Dr. Mehta leads multidisciplinary collaborations at both Johns Hopkins Bayview and Johns Hopkins Hospital with our colleagues in the Neurological, Neurosurgical, and Neurocritical Care departments to increase access to neuropalliative care.
Persons living with neurological illnesses have unique palliative care needs. Compared to other diseases, neurologic illnesses can result in significant limitations in people’s ability to think, communicate, and may cause memory deficits and personality changes. Communication skills for advance care planning and complex symptom management are critical palliative care skills that all neurologists should be comfortable with. The burgeoning field of neuropalliative care has developed to encompass these specific needs.
To increase access to neuropalliative care at Johns Hopkins, we have developed clinical, research, and educational partnerships with our neurology, neurosurgery, and neurocritical care colleagues. In the inpatient setting, our interdisciplinary team collaborates to provide support during family meetings for the NeuroICU and General Neurology wards. Our neuropalliative physician is embedded in the multidisciplinary Johns Hopkins Center for Specialty ALS Care Clinic, which is associated with the ALS Association.
A Sample of Our Team’s Publications
Defining Clinical Excellence for Palliative Care Specialists: A Concept Whose Time Has Come. (Wu, Mehta, Brewer, Sloan, Dy, McPherson, Dahlin) Am J Hosp Palliat Med. 2022.
Clinical excellence in palliative care. (Wu, Wright) Am J Hosp Palliat Med.
Models of outpatient neuropalliative care for patients with amyotrophic lateral sclerosis. (Phillips, Besbris, Foster, Kramer, Maiser, Mehta) Neurology. 2020.
Top Ten Tips Palliative Care Clinicians Should Know About Seizures at the End of Life. (Sharma, Besbris, Kramer, Daly, Singhal, Jones, Mehta) J Palliat Med. 2021.
Palliative Care Consults in an Inpatient Setting for Patients With Amyotrophic Lateral Sclerosis. (Mehta, Jackson, Wiedau-Pazos) Am J Hosp Palliat Care. 2021.
Primary palliative care education for trainees in US medical residencies and fellowships: a scoping review. [published online July 8, 2020]. (Paulsen, Wu, Mehta) J Palliat Med.
Covid-19-pandemic-response-development-of-outpatient-palliative-care toolkit based on narrative communication. (Roberts, Wright, Christmas, Robertson, Wu) Am J Hosp Palliat Med. 2020.
Hopes and Future Directions
Building on our success to date, in 5 years we aim to:
- have artful palliative care thoughtfully integrated throughout the hospital AND the community;
- have a robust interprofessional research program pursuing health equity in palliative care;
- keep growing, thriving, and bringing peace.