My Loved One is Refusing Treatment

I received a call today from a young woman who I will call Amber. Amber's mother had a brain tumor removed but is refusing to receive radiation or chemotherapy treatment. Her concern was that her mother was not mentally in her right mind and capable of making sound decisions. This young woman was beside herself and did not know how to address this with her step father. She does not want to make him feel like he isn't doing a good job caring for her mother but she also feels many issues are not being addressed. I advised Amber there could be a couple things going on.

One, her mother made the decision to not have treatment and her step-father is just honoring her wishes. From what I understand her mother is not doing very well and declining rapidly. The doctors may have not given her a very good prognosis and she decided to focus on quality of life and not quantity of life. Her mother may be unable to bring herself to share her decision with her daughter form fear of upsetting her. Her mother definitely is not helping Amber but not communicating her wishes outright. It is always best to communicate to immediate family members what is happening with the disease prognosis and what the decisions are regarding their care. Amber needs to have time to digest and respect her mothers wishes before her mother's health declines to a point where they can no longer talk about it.

The other scenario that could be happening is that her step father could be entirely overwhelmed with everything and may not be following through with the doctors orders. Not in an effort to hurt his wife but in a state of depression,withdrawal and denial. I understand that Amber's mother is experiencing an extreme change in personality. This can be hardest on the caregiver who catches the brunt of rages, cursing and extreme anger. This personality change does happen occasionally and can really catch you off guard if you do not understand what is happening. Due to the location of the tumor and pressure on the areas of the brain that control emotion this can be a part of the disease process especially since she is not undergoing any treatment and she has a very aggressive and fast growing brain tumor. He could be just completely overwhelmed.

My advice to Amber was to get another family member, possibly her grandmother, and have a conversation with her step father and then include her mother. It is important to be open and honest with one another. Trying to spare a loved one emotional pain by not sharing important information only ends up causing hurt feelings and more emotional pain. This might also be a good time to get a spiritual advisor, pastor, clergy involved and have them mediate the conversation. It is good to have someone whom you trust but is not so close to the situation involved who can look at the situation in an unbiased manner.

HOPE Floats, Again!

We are definately in a time of change. I have a new found sense of hope for our future, our children's future. I feel like for the first time I can exhale....breathe. Hope is not sinking into a pit of despair any longer....we have been thrown a life vest and HOPE FLOATS!!!! Maybe I am thinking a little to naively, but I really feel as though we have definately taken a step in the right direction for cancer patients, health care...all of the above.

I am working on developing a new Patient's Bill of Rights to send to our new President Barack Obama. I would like your input, comments, thoughts, and suggestions. Please get involved and let's help HOPE FLOAT! Let's give our new President the tools he needs to make sure the health care crisis is rectified, that patient centered care is a priority, a right and not a priviledge any longer.

Send your thoughts and let's get started! YES WE CAN!!!