Palliative Care for Young Adults

I was the primary caregiver for my daughter, diagnosed late with metastatic breast cancer at the age of 23. She lost her life a few months later at 24. 

Unfortunately, there was no communication during her treatment and hospital stay regarding early death or palliative care. We were not advised about end of life care options until the physicians stated that 'they could do nothing more for her in acute care.' 

At this point she had lost her ability to speak following a course of radiation therapy. We were advised that she could be transferred to the palliative care ward or taken home. Sadly, the palliative care ward was not set up for young adults. The ward was dimly lit with very elderly, non alert patients only allowed limited visitations. At the time there was no hospice care available in our community. We made a decision to take our daughter home and with the support of home care, continued to care for her until her death 6 weeks later. 

We had no regrets with the decision to bring her home. Our daughter died peacefully in my arms surrounded by friends and family members. Not having the opportunity to discuss end of life with her was regrettable and still haunts us! She did not have a chance to say good bye to family or friends, share her concerns or needs. Poor communication regarding her prognosis was unforgivable. Predictions of hope were well indentioned, but not to discuss what they knew to be the inevitable was tragic for all of us. 

Young people need to have their needs addressed during the final stage of life. Palliative care has been identified as a gap in the AYA cancer cohort journey, an area that needs to be addressed appropriately for those who follow in in our daughter's footsteps. Thank you!