Making Waves: Honoring a Mother’s Final Wish Through Creative Care

Meet Arravinth (Avi) Anantharajah, MS, LCGC, a genetic counselor with the Cancer Risk Evaluation Program at the University of Pennsylvania’s Basser Center for BRCA. In our Making Waves series, we’ve spotlighted the inspiring work of healthcare providers across our industry. Learn the remarkable story of one family’s determination to complete genetic testing—even in the final days of a loved one’s life—and how Avi’s compassion and ingenuity made it possible. 

Last Selfless Act of Love 

Q: Tell us about this family and what inspired you to make sure this testing happened, even during such a challenging time. 

A: So many families, including my own, don’t get answers while their loved ones are still living. In America, we have access to incredible technology, and we need to use it to help more patients, especially those who’ve never had access to that. In this case, my patient was quickly dying of cancer and had two final wishes: to vote in the upcoming election, and to complete genetic testing for her daughters. Amidst emotionally processing her impending death, my patient and her family were rushing to coordinate hospice care, finalize funeral arrangements, trying to console each other—and still her biggest motivation was to help her children and their futures. That kind of selflessness stays with you. 

Facing the Clock: Creative Approaches to Access 

Q: Had you encountered a situation like this before in your career? 

A: Yes and no. We often see cases where sample collection is the rate-limiting step. We’re figuring out how to get a sample in time, even visiting patients in the hospital. There have been initiatives to collect samples in pancreatic cancer at diagnosis, but that’s not universally available. 

What was unique here was just how motivated this family was. They gave me permission to think outside the box. Some patients aren’t ready or may be overwhelmed. But in this case, they were determined to get it done, and that allowed us to be creative. The family and I coordinated a rideshare to deliver a saliva kit to their home for testing.  

We were able to get the sample just hours before she passed. It ended up being a negative result, which provided some relief for her daughter’s own clinical management since there wasn’t a high-risk finding hanging over them. It was a meaningful closure, and in a way, their mother's final gift. 

Genetics is a family affair. So many people have died before they had the opportunity to test. If you have living family members who might benefit, that’s your chance to make a real difference in their lives.

Reflections on Genetics and Family Legacy 

Q: How has this experience changed you? 

A: Even as a GC, it gave me deeper insight into just how important this testing can be. It reminded me of the immense privilege I have to spend this intimate time with families. I think about her selflessness a lot, and how we can all learn from that. 

Q: What would you say to other genetic counselors facing similar situations? 

A: We have so much technology at our disposal in how we deliver kits, how we coordinate care. Don’t be afraid to get creative and keep an open mind about finding ways to make testing accessible. And if you’re ever on the fence about how important this is, remember, for some patients, this was their dying wish. We can’t take that for granted. 

Q: Is there a message you’d want other providers or families to take away from this? 

A: Genetics is a family affair. So many people have died before they had the opportunity to test. If you have living family members who might benefit, that’s your chance to make a real difference in their lives—even to put aside family differences for something bigger. As providers, we still have work to do. Genetics has done well compared to other fields with advocacy and patient access, but the job isn’t done. We must keep pushing ourselves, our labs, and our stakeholders to explore alternative solutions, especially for families who face barriers. 

 

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