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Opening end-of-life discussions: How to introduce Voicing My CHOiCES™, an advance care planning guide for adolescents and young adults

Published online by Cambridge University Press:  13 March 2014

Sima Zadeh ,
Maryland Pao  and
Lori Wiener
Sima Zadeh*
Affiliation:
The National Cancer Institute, National Institutes of Health, Bethesda, Maryland
Maryland Pao
Affiliation:
The National Institute of Mental Health, National Institutes of Health
Lori Wiener
Affiliation:
The National Cancer Institute, National Institutes of Health, Bethesda, Maryland
*
Address correspondence and reprint requests to: Sima Zadeh, The National Cancer Institute, National Institutes of Health, 10 Center Drive, Building 10, 1-H Pediatrics Clinic, Room 1-5460, Bethesda, Maryland 20892. E-mail: zadehsl@mail.nih.gov
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Abstract

Objective:

Each year, more than 11,000 adolescents and young adults (AYAs), aged 15–34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis, and continue throughout the illness trajectory. However, due largely to discomfort with the topic of EoL and how to approach the conversation, healthcare providers have largely avoided these discussions.

Method:

We conducted a two-phase study through the National Cancer Institute with AYAs living with cancer or pediatric HIV to assess AYA interest in EoL planning and to determine in which aspects of EoL planning AYAs wanted to participate. These results provided insight regarding what EoL concepts were important to AYAs, as well as preferences in terms of content, design, format, and style. The findings from this research led to the development of an age-appropriate advance care planning guide, Voicing My CHOiCES™.

Results:

Voicing My CHOiCES™: An Advanced Care Planning Guide for AYA became available in November 2012. This manuscript provides guidelines on how to introduce and utilize an advance care planning guide for AYAs and discusses potential barriers.

Significance of Results:

Successful use of Voicing My CHOiCES™ will depend on the comfort and skills of the healthcare provider. The present paper is intended to introduce the guide to providers who may utilize it as a resource in their practice, including physicians, nurses, social workers, chaplains, psychiatrists, and psychologists. We suggest guidelines on how to: incorporate EoL planning into the practice setting, identify timepoints at which a patient's goals of care are discussed, and address how to empower the patient and incorporate the family in EoL planning. Recommendations for introducing Voicing My CHOiCES™ and on how to work through each section alongside the patient are provided.

Keywords

End of lifePalliative careAdolescents and young adultsAdvance care planningCommunication
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 3 , June 2015 , pp. 591 - 599
Copyright
Copyright © Cambridge University Press 2014 

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