Feeling Betrayed: Can't Trust Family with My End-of-Life Care

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AJ

Community Member

a year ago

Just started my journey Feb 2024. Got a bit of a shock just recently: I feel I cannot trust my husband and family (sister) with my care. They both say and do things they believe are right despite whether it’s what I want or not. It’s making me really unhappy and fearful. I thought I could rely on them to help me, but now I don’t feel I can ask them for anything. I have an advanced care directive with no resuscitation, no life support, no food tube filed with my primary doctor and my husband has the same with the same doctor. With their recent behavior I have no comfort that my wishes will be granted. Talking hasn’t helped. Is complaining all I can do?

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6 comments

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Accepted Answer

That feeling of betrayal around such personal wishes is incredibly difficult to navigate, especially when facing a cancer journey. Consider speaking with a social worker, patient advocate, or elder law attorney who can help explore options like updating your healthcare proxy to someone who will honor your directives, or adding more specific legal protections to ensure your end-of-life preferences are respected regardless of family dynamics.

3+ patients found this helpful

TK

Community Member

6 months ago

Your doctor is required to follow that directive you signed. Your surgeon, oncologist, etc, will require similar paperwork. You can ask for what you want and they must follow it. I understand what you're going through. My husband doesn't understand either. He's terrified of losing me, and I feel like screaming, "How do you think I feel?".

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AJ

Community Member

6 months ago

Thanks TiffanyK. You’re right. I need to file my AHCD with my cancer care team too. Good reminder.

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KB

Community Member

6 months ago

Audrey- you are not alone. Everyone has different coping mechanisms- and I found friends ghosted once I shared my TNBC diagnosis April 2023. See if your care team has family counseling. Your peace of mind and reduced stress is important now! Praying for you!

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BP

Community Member

6 months ago

What is the ACHD?

KB

Community Member

6 months ago

I believe she was referring to advanced health care directive?

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CA

Community Member

2 months ago

That feeling of betrayal around such personal wishes is incredibly difficult to navigate, especially when facing a cancer journey. Consider speaking with a social worker, patient advocate, or elder law attorney who can help explore options like updating your healthcare proxy to someone who will honor your directives, or adding more specific legal protections to ensure your end-of-life preferences are respected regardless of family dynamics.

Feeling Betrayed: Can't Trust Family with My End-of-Life Care

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