Dear Barbara, my mother has progressive cancer. She has refused hospice because she wants to go to the emergency room if she needs to. We’ve had hospice for two other family members and they were wonderful. I am so disappointed she won’t accept their help. I need their help. She lives alone. I live several hours away from her. Currently I am driving those hours (each way) 2 to 3 times a week. Her condition is deteriorating. She has strongly told me she does not want to go to a nursing home or be “put in the hospital” yet she will not sign an advanced directive. As hard as it will be, I see moving in with her at some point to take care of her. I will honor her wishes. My question is when the time comes and she dies in her home, who do I call? 911? Will they try to resuscitate her?

I am so sorry your mother has put you in this situation. From what you have described, I don't suppose it would make a difference if you said, "Mom, I can't do this alone. I need help and hospice can give it to me. I want you to be able to stay at home but I need help to do that for you," but give it a try.

Tell her honestly what you are feeling and ask for help. Just FYI: she can sign on for hospice and if she felt she needed to go to the emergency room, you could just call 911 and revoke the hospice benefit from the ER later. (We don't always have to play the rules.)

What about considering Palliative Care? It is for patients and their families when cure is challenging and a person is not ready to stop pursuing treatment. There isn’t financial help for palliative care like there is for hospice, but if you can afford it, the supportive guidance can be a huge help. Palliative Care would be able to answer your questions about what to do when she dies.

As to who you should call when your mom dies, each state is different so I can't give you an answer. Do an internet search of "what to do when someone dies at home from a natural illness (put in your state)" and see what it tells you. You can also call the funeral home you are going to use and ask them what to do. Or ask your physician. You can even call the Health Department. 

Another option is hiring an End of Life Doula who can support both you and your mother, beginning now before you have to move in with her. The Doula could be a daily touch point checking in on, visiting with, and observing your mom. She would be your eyes and ears while you are so many miles away. 

When it is time for you to move in with your mother, the Doula would be there to guide and support you much like a hospice would (again, without the financial assistance Hospice gives). Your mom might be more receptive to this one person instead of an agency. An End of Life Doula would be able to be with you when your mother is actively dying. She would also know who to call.

This is the “precious time” you can have with your mom but you need help to give her your best.

Something More... about What Do I Do? Mom Has Progressive Cancer and is Refusing Hospice

When caring for someone facing end of life, you need to know the signs of approaching death so that you may provide the best care possible for your special person. I encourage you to keep my booklets close at hand. Particularly the guidebook, By Your Side, A Guide for Caring for the Dying at Home.  Here is a recent review:

"Sent to friend whose dad was dying, she was a first time hospice experience. This book was incredibly helpful to her in this last journey with her dad. I am so grateful to have this as a resource to send to friends and family who are walking this path for the first time and by themselves. Thank you Barbara, you are a gifted healer." -Lee T.