Palliative Care Needs of Young Adults With Life-Limiting Conditions

Betty R. Ferrell, PhD, RN


December 01, 2016

Young Adults Who Need Palliative Care

Young adults may represent a small segment of the population requiring palliative care, yet those with serious, life-limiting conditions have significant needs for this care.

Cook and colleagues[1] report their findings from a study exploring the needs of 10 young adults (age range, 19-29 years) who had limited expectations of surviving past age 30. The data were derived from an online focus group that captured some insightful themes about the unique needs of this population of young adults. These themes, which explored the many physical and psychosocial needs of this group, included "investing in uncertainty" and "if we focus on what we can't do, we'll never get anywhere."

Participants described the many obstacles to achieving educational goals or gaining employment while being aware of the reality that their remaining years were limited. They shared thoughts about volunteering or seeking other ways to contribute or find meaning in their lives.

They also shared their feelings about socializing and intimacy, important experiences for young adults that are often thwarted by serious illness. Another key theme was living with uncertainty, a concept frequently discussed in palliative care, yet one with special significance to this population.


A key challenge often cited in the literature is the transition in care from pediatric to adult settings as children age into adulthood, a transition made even more challenging when the patient has a life-limiting illness. The same deficiencies in their medical care, such as coordinating complex needs with multiple providers, are apparent in their palliative care needs. These patients have diseases such as muscular dystrophy or cancer, associated with high symptom burdens, dependence, and limited mobility. The developmental tasks of becoming adults and having life goals and hope for the future are unfortunately often in sharp conflict with the reality of worsening disease and death.[2,3,4] Key to this experience is the concept of living with uncertainty.

This study is very important as palliative care expands to new pediatric and adult disease groups.[5] The findings increase awareness of the principles of palliative care that extend broadly across patient groups as well as the value of listening to the unique voices of those we serve.


Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.