A family grapples with how to respect the wishes of a mother with advanced ALS; a daughter takes the role of managing care for her mother as she reaches the end stages of cancer; an African American woman advocates for herself at the end of life. These stories humanize the serious illness care policies, obstacles, and opportunities discussed in the latest issue of the North Carolina Medical Journal.
As North Carolina’s population ages, and as people at all stages of life face the prospect of serious illness during a pandemic, the nuances of this kind of care – and the need for improvement in training, collaboration, and access – become apparent.
“The journey involved in serious illness care is complex, emotional, and very personal, challenging us to find the best way forward for those we care for and love,” write guest editors Catherine Harvey Sevier, Jonathan Fischer, and Karen Bullock.
In addition to commentaries and sidebars about the many issues surrounding serious illness care, this issue includes a brief outlining the recommendations of the North Carolina Institute of Medicine’s recent Task Force on Serious Illness Care.
Click here for the full issue. Click the titles below to read each article.
Issue Brief
Leaning In to Serious Illness Care Through Stories and Science by Catherine Harvey Sevier, Jonathan Fischer, Karen Bullock
Commentaries and Sidebars
Expanding and Enhancing Advance Care Planning to Promote Goal-Concordant Care by Brian S. Wood, Gary S. Winzelberg
Understanding Medical Orders for Advance Care Planning by Linda W. Darden
Enhancing Technology to Better Communicate Advance Care Planning Information by Christie Burris, David Sevier
A Call for North Carolina to Surround the Seriously Ill and Caregivers with Interprofessional Collaborative Teams by Donna Lake
The Fierce Urgency of Now: Addressing Racial and Ethnic Disparities in Serious Illness Care by Nadine J. Barrett, Marisette Hasan, Kenisha Bethea, Kimberly S. Johnson
Health Equity in Aging for Transgender People by Ames Simmons
Advance Care Planning Engagement: Meeting People Wherever They Are by Ellie Ward
Meeting the Needs of Those with Serious Illness in their Homes and Communities by Tom Gualtieri-Reed, John Morris
Using Patient-Reported Outcomes to Facilitate High-Quality Virtual Care for the Seriously Ill by Kyle Lavin, Paul E. Zimmerman
Designing Effective Payer Models to Improve Serious Illness Care by Lynn Hill Spragens
1 in 5 North Carolina Adults are Caregivers: Addressing Unpaid Family Caregiver Burden with Supportive Services by Alicia Hess Blater
Serious Illness Care for Children and Adolescents in North Carolina by Kristen Register Lakis, Janna Pogers, Lisa Stigler Parnell, Lily Gillmor
Task Force Report Brief