High-Need Patients in Their Own Words
High-need patients are a varied group of people who tend to interact with the health system frequently. To better understand these patients’ experiences, Healthwise—a nonprofit that aims to help people make better health decisions—has identified three key populations within the high-need group: individuals with at least three major chronic conditions, individuals under 65 living with a disability, and frail elders, defined as people over age 65 with functional limitations.
As part of this work, Healthwise researchers interviewed multiple people in each of these different segments of the high-need group. Understanding their problems with the health system as well as their daily challenges provides insights into what aspects of care are working for people, and what needs repair. The patient voices provide a much-needed patient perspective at a time when federal health funding cuts are being considered. Below, we offer video of these three interviews.
Annie is living with major chronic conditions, including Type 2 Diabetes, COPD, congestive heart failure, and high blood pressure. Because of her complex health needs, she often feels limited in what she is able to do yet avoids asking for help for fear of burdening her family. Annie expresses the importance of a good doctor–patient relationship, describing two very different situations she’s been in.
Joshua has cerebral palsy and shares a number of the challenges faced by other high-need patients who are under age 65 and living with a disability. Joshua relies on aides for assistance with daily living, but he reports that when an aide is out sick his parents must miss work to provide support for him. He emphasizes the importance of unpaid support, but feels that it is an unfair burden to place on friends and family.
A frail elder, Jeanne is over age 65 and has functional limitations that cause major difficulty performing tasks such as preparing meals or getting across the room. These issues are compounded by her fibromyalgia and heart failure. As Jeanne reflects on her experiences, she laments her loss of control over her own life because of her health conditions. She explains that she feels she is no longer listened to because of her age. She also struggles with getting adequate insurance and services to meet her needs. However, her optimism is apparent when she describes the fantastic support she receives from her friends, family, and doctors, demonstrating the importance of a solid support system.
The authors would like to thank Brian Igelman and Casey Miller for their contributions to this work.