What do adolescents want? An exploratory study regarding end-of-life decision-making

Lyon, Maureen E.; McCabe, Mary Ann; Patel, Kantilal M.; D’Angelo, Lawrence J.

doi:10.1016/j.jadohealth.2004.02.009

Cited by 88 publications

(79 citation statements)

References 16 publications

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“…Study findings are consistent with earlier preliminary studies of adolescents with chronic illnesses,19 HIV11 and cancer27 indicating that adolescents preferred to talk about their goals of care before dying, 84%, 92% and 75%, respectively. This preference not being known to their families is also consistent, further validating the current findings, and supports other research indicating that communication about goals of care is a key factor affecting chronically ill adolescents and their families 28.…”

Section: Discussionsupporting

confidence: 90%

Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families

Lyon

Dallas

Garvie

et al. 2017

BMJ Support Palliat Care

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Section: Discussionsupporting

confidence: 90%

Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families

Lyon

Dallas

Garvie

et al. 2017

BMJ Support Palliat Care

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show abstract

“…So far, researchers have tended to focus on the relationship between minors' cognitive abilities and decision competence [5], [2], [4]. With few exceptions (see[16]), what has been missing is insight into whether children and adolescents want to be involved in the process of making decisions about their medical treatment even when those decisions are difficult and might be emotionally taxing for them.…”

Section: Discussionmentioning

confidence: 99%

Braving Difficult Choices Alone: Children's and Adolescents' Medical Decision Making

2014

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ObjectiveWhat role should minors play in making medical decisions? The authors examined children's and adolescents' desire to be involved in serious medical decisions and the emotional consequences associated with them.MethodsSixty-three children and 76 adolescents were presented with a cover story about a difficult medical choice. Participants were tested in one of four conditions: (1) own informed choice; (2) informed parents' choice to amputate; (3) informed parents' choice to continue a treatment; and (4) uninformed parents' choice to amputate. In a questionnaire, participants were asked about their choices, preference for autonomy, confidence, and emotional reactions when faced with a difficult hypothetical medical choice.ResultsChildren and adolescents made different choices and participants, especially adolescents, preferred to make the difficult choice themselves, rather than having a parent make it. Children expressed fewer negative emotions than adolescents. Providing information about the alternatives did not affect participants' responses.ConclusionsMinors, especially adolescents, want to be responsible for their own medical decisions, even when the choice is a difficult one. For the adolescents, results suggest that the decision to be made, instead of the agent making the decision, is the main element influencing their emotional responses and decision confidence. For children, results suggest that they might be less able than adolescents to project how they would feel. The results, overall, draw attention to the need to further investigate how we can better involve minors in the medical decision-making process.

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“…AYAs faced with a life-threatening illness are often preoccupied with thoughts associated with how they would want to be remembered if they were to die from their disease (Wiener, 2008; Lyon et al, 2004; Hinds et al, 2003; McAiley et al, 2000). Providing a chance for them to share thoughts about how they wish to be thought of and remembered in the future allows AYAs to create a permanent record of their words and feelings, which in turn provides their loved ones with information that is meaningful to honor and/or preserve.…”

Section: How I Wish To Be Rememberedmentioning

confidence: 99%

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

2014

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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.

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What do adolescents want? An exploratory study regarding end-of-life decision-making

Cited by 88 publications

References 16 publications

Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families

Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families

Braving Difficult Choices Alone: Children's and Adolescents' Medical Decision Making

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

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