Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis

Abstract

To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16–40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16–40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of “self” and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers.

Ethical issues in the care of adolescent and young adult oncology patients

“…Although many ethical issues surround EOL in oncology, we will focus on AYA involvement in decision‐making and surrogate decision‐making. Several recent studies focusing on AYA cancer patients’ involvement in EOL discussions and decision‐making have found that most AYA patients desire to participate in EOL decision‐making and wish to be communicated with honestly . For example, one study found that 83% of AYA patients considered prognostic information to be extremely or very important .…”

“…Several recent studies focusing on AYA cancer patients' involvement in EOL discussions and decision-making have found that most AYA patients desire to participate in EOL decision-making and wish to be communicated with honestly. [73][74][75][76][77] For example, one study found that 83% of AYA patients considered prognostic information to be extremely or very important. 78 Additionally, a study of adolescents nearing EOL found that they comprehended the context and ramifications of their decisions.…”

Cuidados paliativos providos por médicos de família e comunidade na atenção primária à saúde brasileira

“…Os familiares também gostariam de se envolver nos processos de tomada de decisão, mas sentem que não recebem apoio adequado em relação a isso. 21 Mais de 80% das pessoas acima de 60 anos em Nova York gostariam de falar com seus médicos sobre tratamentos no fim da vida, e 35% delas têm estabelecidas suas Diretivas Antecipadas de Cuidado.…”

Cuidados paliativos e decisões ao final da vida: experiências de famílias de crianças e adolescentes com câncer

“…Desafios complexos surgem desde o diagnóstico do câncer (FERMO et al, 2014) e o contexto no qual a criança ou adolescente se inserem, a partir do descobrimento da doença, tudo parece destoar do que se imagina como uma realidade plausível, principalmente quando a morte é vista como uma possibilidade, quando a finitude na infância é uma calamidade. Para os pais, é difícil encarar as mudanças que a doença impõe na vida do filho e, principalmente, a possibilidade de que o ciclo vital possa vir a se inverter (NGWENYA et al, 2017).…”

“…Tal mudança exigirá de todos os envolvidos um novo papel e uma nova identidade, para lidarem com os novos desafios trazidos pela doença (NGWENYA et al, 2017).…”