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Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
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Challenging Case: Navigating End-of-life in Neuro-inclusive Cancer Care
Joan W Hanania1,2,3,4, Melissa Levin5, Damien M Miran1,2,3
1Department of Supportive Oncology, Dana-Farber Cancer Institute, Boston, MA.
Summary
This case study explores end-of-life care for a 13-year-old with autism spectrum disorder and recurrent glioblastoma. It highlights challenges in communication, consent, and tailoring palliative care for adolescents with developmental disabilities.
Area of Science:
- Pediatric Oncology
- Neuro-oncology
- Developmental Disabilities
Background:
- A 13-year-old boy with autism spectrum disorder (ASD) and recurrent glioblastoma faced treatment exclusion due to consent and adherence concerns.
- His care transitioned to palliative therapies amid significant disease progression and complex family dynamics.
Purpose of the Study:
- To examine the challenges and considerations in providing end-of-life care for pediatric patients with developmental disabilities.
- To explore appropriate consultations and tailored strategies for end-of-life care in this population.
Main Methods:
- A detailed case study approach focusing on a specific patient's journey.
- Analysis of clinical decision-making, family communication, and symptom management in the context of recurrent pediatric brain tumors.
Main Results:
- The patient experienced significant symptom burden, including headaches, emesis, and visual field deficits, impacting his quality of life and autonomy.
- Prognostic communication was challenging, with parents deferring hospice care and focusing on life-prolonging treatments despite the patient's expressed wish to go home.
Conclusions:
- Effective end-of-life care for children with ASD requires addressing communication barriers, respecting patient autonomy within their capacity, and involving multidisciplinary teams.
- Tailored palliative care strategies are essential, considering the unique needs of adolescents with developmental disabilities and their families during end-of-life discussions.
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