Mother has metastisized breast cancer - What questions should we be asking?

RondaC
RondaC Member Posts: 2
in Caregivers #1

My mother-in-law has stage 4/metastisized BC - Ductal Carninoma, lungs, lymph nodes. She cannot get a PET scan because she can't lay down due to coughing and mucus. So were not sure where else it has spread. 

She was working with a natural health practitioner for the last six months and refused medical treatment until just last week. I think she finally realized it was not working. She is now getting Faslodex shots. But her health is declining rapidly. She is on oxygen, and just accetped some mild pain relievers. She has lost 48 pounds, has no appetite and doesn't want to eat. Can't really walk very far as she gets exhausted and winded quickly.

Both my husband and I work full time and she lives alone, does not want to move in with us. She also will not talk about end of life issues. Seems to still be focused on working and getting back to traveling even though it is becoming clear that is not going to happen.

Here is my question? What kind of resources are out there to help us understand what we could and should be doing? I called the American Cancer Society and the gal on the phone was very eager to provide resources, but I have no clue what I am even asking for! We've been out of the health care loop becasue of the decisions she has been making about not wanting traditional medical treatment. I feel like a terrible person! Like I am not doing enough to care for her, to help her move through the denial and start dealing with the reality of the situation. A family friend who is a LCSW has talked me through some of the guilt I feel and there are a lot of resources out there that tell you how to care for yourself emotionally, etc. I need practical tips about when I should be arranging in home care, or asking the doctor for palliative care. How to help her be more comfortable. to understand when she is in danger.

Any suggestions would really help!

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    Tough spot

    I would hope that one of you is on her HIPPA. If so, call her doctor and get a prognosis. 

    It could be it is time for hospice. They have the skills and tools to broach delicate subjects.

     

  • RondaC
    RondaC Member Posts: 2
    edited November 2016 #3
    She is not cooperating

    Thank you. I plan to be at next appointment with her oncologist. Neither of me or my husband is on HIPPA, but I will ask while we're there. Our GP suggested I contact her doctor confidentially to get a prognosis.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited November 2016 #4
    What to ask...

    Here's a link to a worksheet on what questions to ask the physician about breast cancer, from the same folks that sponsor this forum.  Granted, it's probably too late to ask many of these questions, but there are others that are timely and many that'll provide a start: http://www.cancer.org/acs/groups/cid/documents/webcontent/003284-pdf.pdf

    Also, you don't get "on" someone's "HIPPA." That's a law, the Health Information Portability and Accountability Act (HIPAA), which covers who has a "right to know" a patient's medical information. Your mother can fill out an Advance Directive (also sometimes known as a "Living Will) "Health Care Agent" (also sometimes known as the "Power of Attorney for Healthcare" [not to be confused with the "Durable Power of Attorney" which is about Money and Stuff]) portion designating you as her agents and also -- in the "Other" section, or on an attached sheet -- indicate that her health care team can start providing you with her information, starting immediately.  Health Care Agents are those who are allowed to give consent and make health care decisions for a patient when they are unable to do so.  Verbal directives are generally allowed, in which case your mother could tell her health care team that she wants you to be able to know her health care information, starting immediately, AND you/she should ask them to please document that information in her medical record. However, it's better to have an advance directive form AND a written statement AND a statement they've documented in the medical record.  Don't just hand them papers. Have them review them with you, because they're also supposed to mention that in the record. 

    Most states and most providers, if you're immediate family and bringing her to her appointments, they'll allow you to hear the information and discuss it with you.  Getting to know her care team AND having the documentation works the smoothest. 

    All the best during this difficult time --

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