P2.A011: Difficulties navigating cultural, religious, and parental differences at end of life in adolescent and young adults: A case report

Introduction: Navigating end of life (EOL) conversations and honoring the wishes of adolescent and young adult (AYA) patients can be challenging as they balance independence and autonomy with the need of support and guidance from caregivers. EOL decisions incorporate cultural and/or religious beliefs, which can conflict with AYA patients’ personal preference. We explore cases of Sikh and Latino AYA patients where parents had difficulty honoring their child’s wishes as it differed from cultural or religious norms. They highlight the complexities that exist when attempting to include and align families in goals of care within this vulnerable population.

Case Description: A 22-year-old young Sikh man with end-stage metastatic sarcoma had expressed wanting a DNR when privately speaking to the palliative care team. As a Sikh, family is very important to include in medical decisions, and they disagreed with having a DNR. With the help of Ethics, it was agreed that an AYA patient with capacity has the right to choose to honor their parents' wishes, even if it doesn’t align with their own wishes.

A 23-year-old young Latina woman with end-stage acute lymphoblastic leukemia (ALL) expressed her wish to have a DNR. Her mom did not agree with this decision and wanted to first have a conversation with their whole extended family. A DNR was placed prior to her family’s consent, which they ultimately agreed with as they saw her disease continue to progress.

Discussion: Parental, cultural, and religious influences can impact EOL decisions. These cases demonstrate the value of offering AYA patients a safe space to speak openly about their EOL preferences. In the cultures and religions described, it is common for EOL decision making to include or even fall upon the extended family. The cases demonstrate too, the difficulty some parents may experience when thinking and talking about their child’s death. With the help of palliative care, the parents were eventually able to hear their children’s wishes and determine how to move forward based on their family beliefs, structure, and culture. Though these scenarios were uncomfortable for American trained providers, they demonstrated the traditions and typical customs of respective cultures and religions.

Conclusion: AYA patients often have opinions related to their EOL preferences. These desires can remain unheard if they differ from their cultural and religious norms and particularly if they differ from their parents’ desires. Parents may also find it challenging to hear their child talk about death and avoid such conversations, making it difficult to then honor the wishes of the AYA patient. For providers to meet the unique and diverse needs of patients, we must learn and incorporate our patient’s cultures. This can take time and requires one to remove bias from one’s own religion, culture, and preferences.