Voicing My Choices FAQs

Who should use Voicing My Choices?

It is intended for adolescents and young adults living with a serious illness. The research conducted at NIH included patients age 16 to 28. ["Allowing Adolescents and Young Adults to Plan Their End-of-Life Care." Pediatrics, November 2012 (embargo released October 8, 2012)]

How does this compare with Five Wishes and My Wishes?

Five Wishes meets the legal requirements for an advance directive in most states and is appropriate for use by all adults.

My Wishes is a pediatric guide used by young children living with a serious illness. It includes sections where children can draw pictures of things that make them feel comfortable and safe. Some elements of My Wishes may seem too juvenile for pre-teens. If My Wishes is “too young” for the patient, then Voicing My Choices may be just right.

Is Voicing My Choices a legally binding document?

No. State laws related to advance care planning vary greatly. Voicing My Choices may not meet all the requirements in every state. However, most healthcare providers and family caregivers want to honor patient wishes no matter how they are expressed. In most cases, the information provided in Voicing My Choices will give the necessary information to provide the treatment and care requested by the patient. There is a place for the individual to sign and date the document, and a place for two witnesses to acknowledge the signature. The young participants of the NIH study emphasized the importance of formalizing the document in this way. Even though the document may not meet all legal requirements in every state, the inclusion of the signature, date and witness acknowledgement are helpful.

How does Voicing My Choices work differently for minor children versus those over age 18?

If the patient is under the age of 18, then a parent or guardian will have legal rights to make healthcare decisions. Voicing My Choices is a planning guide that facilitates communication between a seriously ill young person and his or her parents, guardians, friends, caregivers and health care providers. Nothing in Voicing My Choices overrides the legal authority of a parent or guardian in relation to a minor child. The document simply helps the parents and guardians to make good decisions based on the wishes of the seriously ill young person.

If the patient is over age 18 and wants his or her wishes to be legally binding, they should consider completing an advance directive, such as Five Wishes, that meets legal requirements. A seriously ill young adult may decide to start with Voicing My Choices because they feel more comfortable with this document than a standard advance directive. In some cases, this will be enough to get the patient, family, and health care providers all on the same page. In other cases, particularly if there is a chance that the patient’s wishes may be contested in court, then it would be important to complete a legally binding advance directive as well.

How is the content of Voicing My Choices different from Five Wishes?

While many elements are similar, there are some important differences based on research conducted by NIH with young people (age 16-28) living with a serious illness. The young participants identified items concerning how they want to be treated and remembered as more important than items concerning specific medical decision-making. These issues related to comfort, spirituality, and relationships are included in Five Wishes, but they are closer to the front of Voicing My Choices. It also incorporates other recommendations gleaned from the study, such as using developmentally appropriate language, clarification of medical concepts, and the inclusion of friends in several sections. The document also responds to the preference of young people to have both closed (yes/ no) questions and open-ended questions, in addition to guidance on document design, color, and simplified wording.

As one example, because Five Wishes is intended for all adults, it includes references to Medicare benefits, and the patient’s spouse or adult children. Such reference would convey to a young person that this document is not intended for them. Voicing My Choices aims to convey to seriously ill young people, “This document is for you.” It is more visually appealing, , eliminates the references to Medicare and spouses, and adds references to friends.