TABLE 2.
Developmental Considerations in Adaptation of Five Wishes and MTMWMV
| Developmental Task | Participant Feedback | Changes Made |
|---|---|---|
| Gain independence and formulate self-identity | Having a say in who visits; making specific decisions | Being able to choose where they want to be and who they would like with them when the end of life is near |
| Having spiritual thoughts and wishes respected | Specify who goes through their belongings | |
| Deciding what happens to their body after death | Provides an optional spiritual section | |
| Opportunity to document whether they would want a postmortem autopsy or to donate their body to science in addition to choices around burial/cremation | ||
| Age-appropriate interests | Items should be more age-appropriate | Inclusion of items related to music/food preferences |
| Removal of items related to assisted living and nursing home | ||
| Strengthening peer and romantic relationships | Five Wishes focuses only on family | Integrated “friends” where references made to family and/or loved ones |
| Includes designating visits from friends, classmates, co-workers | ||
| Provides space for letters to be written to those they care about | ||
| Defining future role in life and feeling understood | No place to document a positive outcome out of their death | Place to share how they would like to be remembered on certain days or holidays (e.g., award in my name at graduation, money given to favorite charity on Christmas, donations in lieu of flowers at funeral) |
| Being able to share regrets | Section on forgiveness expanded | |
| No place to designate distribution of belongings | Section to bequeath belongings | |
| Dealing with immortality | Being remembered | Added section allowing them to describe how they want to be remembered |
| Establish a sense of control over diagnosis/treatment, including relinquishing control when ready | Some medical terms/concepts are difficult to understand | Written using developmentally appropriate language |
| A place to document preferred types of emotional and physical comfort | Provided a narrative explaining the purpose of each section of the document | |
| Provided a glossary for more advanced terminology | ||
| More specific options on pain control | ||
| How they would like their appearance to be when visitors come to see them | ||
| Specify degree of alertness balanced with level of comfort care | ||
| Other | Format | More open-ended questions and room to elaborate |
| Title needs to be changed: my wish is not to die | Title changed to emphasize that their choices are being respected and their voice is being heard |