An Exploratory Study of the Use of Five Wishes as a Tool for Advanced Care Planning in Young Adults With Metastatic, Recurrent, or Progressive Cancer or HIV Infection
- Discussing end of life (EoL) care with adolescents and young adults can be one of the
most difficult aspects of living with a life threatening disease.
- Few established resources exist to aid this population in accepting and understanding
their changing physical, emotional and social needs when treatment is no longer
effective. Standards in palliative care suggest that discussion of end of life issues
be routine and commence soon after diagnosis.
- While many helpful documents exist to facilitate such conversations with adults, few
address the particular concerns and needs of adolescents and young adults.
- One advance directive (AD) document, Five Wishes, has had particular success with the
adult population because of the consideration of 'personal, emotional and spiritual
needs' in addition to medical and legal concerns.
- To determine if adolescents and young adults living with advanced cancer or HIV disease
feel that an AD document, such as Five Wishes, is useful in addressing end of life
- To develop and perform a pilot evaluation of a modified age-appropriate advance care
planning tool for young adults and adolescents based on Five Wishes that reflects the
participants' opinions on which questions they feel are most useful and additional
items that might be helpful.
- Age: 16 to 30 years
- Known metastatic, progressive or recurrent cancer or HIV disease acquired perinatally
or early in life and enrolled in an active NIH treatment protocol.
-A descriptive study of attitudes of young adults (16-30 years) with cancer or HIV disease
concerning the questions contained in the AD document Five Wishes as well as a comparison
between Five Wishes and a modified version of that document.
Time Perspective: Prospective
Lori Wiener, Ph.D.
National Cancer Institute (NCI)
United States: Federal Government
|National Institutes of Health Clinical Center, 9000 Rockville Pike||Bethesda, Maryland 20892|
|Georgetown University||Washington, District of Columbia 20007-2197|