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

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.

The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease

“…Reluctance to approach end-of-life discussions therefore means that families are often poorly prepared, and their children ultimately suffer a death that differs significantly from both their own and their family's goals for the end of life, including preferences for treatment and location of care. Conversely, in a study of bereaved parents of children with cancer, a perception of high-quality care was associated with parents' feeling prepared for the circumstances surrounding the child's death,34 reinforcing the recommendation to approach end-of-life discussions in a routine way, close to the time of diagnosis if appropriate, and to continue this dialogue throughout the illness trajectory 35. There is also clear evidence that this is in keeping with children's preferences 36–39…”

Family-centred advanced care planning with adolescents living with HIV is perceived as important, helpful and meaningful

“…Discussing EoL with adolescents and young adults is difficult, not only because of the sensitive nature of the issue but also because of the need for a developmentally appropriate approach and language 2. An age appropriate ACP, such as Voicing My CHOiCES, can allow communication about additional issues adolescents living with a chronic or life-limiting disease find most important 5. This study and other evidence demonstrate that adolescents can cope with the range of emotions elicited during ACP conversations.…”

Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions

“…Primary palliative oncology interventions might be conceptualised in many ways, including standardised clinical and psychosocial resources directed at patient and family supportive care, 88–90 communication tools to assist with advance care planning, 91 as well as in-training for staff to develop basic PPC competencies. 92,93 Few interventions have been labelled as PPC interventions, even if they intend to alleviate suffering and improve quality of life.…”