Palliative Care vs. Hospice Care in Medication Management, Hospital Services, Etc.
Hello Everyone,
My 95 year old grandmother who is on Social Security receiving Medicare has recently been evaluated by what appears to be a Hospice nurse. She is being offered "palliative care" through Hospice and is seriously considering signing onto the service to allow her to stay in her home. She is a CHF patient with atrial fibrillation and had a recent hospitalization. They claim she had pneumonia in the ER but released her in 3 days after admission without any heart tests or other tests, no recommendations to follow-up with her cardiologist. I was not with her during her hospitalization or during the evaluation, and I'm trying to learn more about the "palliative care" services as it pertains to her CHF medication management and her future hospitalizations. I have been unable to find specific data. I want her to fully understand as much as possible her treatment if she chooses to sign onto palliative care. Her independence is so important to her, yet she wants to remain in her home as long as possible. She currently lives alone and has been managing on her own. Can you give me your thoughts going forward with a CHF patient as to medications, 911 calls, hospitalizations, assorted doctor visits (regular doctor, podiatry, dentist, X-rays, hearing, eye exams) under the "palliative care" program of Hospice in the State of California? Many thanks for all your input -- it is well-received and I am grateful for all the comments here.
I'm able to talk with my grandmother's doctors in her presence as they know me from frequent visits. And I'm listed on most HIPPA docs. The trouble really is with my grandmother. At times I'm asked for help by her, and other times I'm essentially told to stay out of her business that she "will make all decisions on her own!" with a stern tone. Believe me I'm always very polite and concerned. I'm expected to shuttle her to her doctors' appts when I visit, remember things doctors tell her, but not ask too many questions as she shames or ridicules me for inquiring too much. Sometimes I've been told "I should just keep my mouth shut!" I know you've read my prior post ---- we've had a long difficult struggle which stems from a controlling, manipulative, abusive relationship which honestly I've only begun to discover and explore in the last decade as I've begun to get my own life in order. Trying to help someone with one arm tied behind your back, do the right thing for someone you still care about, under difficult circumstances is challenging. I know she appreciates what I can do and it often takes her some time to realize it later and I hear about later with some thanks, even years later. I came to her rescue in her time of immediate need when my grandfather was dying and she was suddenly thrust into the hospital with a diagnosis of CHF herself! My brother is essentially non-participatory with her needs, showing up to do just enough like fix a faucet and show a grandson's face while simply passing through town, but I'm essentially all she has to tend to her immediate living needs since my mom passed, to help manage her life since my grandfather passed a few years ago. And he ran their lives so she has the responsibility for herself now as "head of household," quite an undertaking for an average 95-year old housewife now adjusting to real life and not so savvy to the ways of the world. As I say her stubbornness, her internal strength really keeps her going. She has a will to live and wants to keep living independently and I support that so if "palliative care" is conducive to that arrangement, I'd like to encourage when I'm "allowed" to get my two cents in with her. Sometimes I think she just "disagrees with me to disagree." I have to pick and choose when I can be most helpful, when not to upset her while balancing trying to get her the best health care in spite of herself... while preserving my sanity.
After my parents developed cardiac problems, my sister (a nurse) and I got involved. On one occasion the then cardiologist refused to discuss issues with us (Mom, Dad and me) and just gave me the sort of "I'm the doctor; I make the decisions" attitude). So I found another cardiologist (the one Dad's seen for 16 years) and fired the other doctor.
Whenever Dad was admitted to the hospital, I also told the staff I would not allow that doctor to see my father or "treat" him. They were surprised, but I was adamant.
And he wasn't the only doctor we replaced.
Just occurred to me - do you have a HIPAA authorization to allow you to speak with the doctors?
By the way, none of the cardiologists she's seen has ever been frank with, at least when I've been with her on these appointments. It seems they don't want to openly discuss prognosis.
I'm still looking for answers to this question above given the situation now that she is home. I'll be visiting with her next week.
One thing to remember is that each person with CHF and A-fib is different, and may have different co-morbidities. My father has had CHF and pneumonia repeatedly, has had A-fib for 16 years, takes 1 med, and still is creating plans for projects he wants to build. And he just might try to.
Your grandmother seems from your earlier post to be a strong person. I wouldn't be as concerned about hospice if you had supporting diagnoses from doctors, from someone other than "by what appears to be a Hospice nurse". She likely is, but I'd speak with her treating physicians before making any decisions.
I also would want to know why any cardiac tests weren't administered. She should at least have had an x-ray to determine the presence or not of pneumonia. I don't have the impression she had thorough exams during her hospitalization. And that could be because they recognized terminal signs, but I'd find out for sure.
Our cardiologist has always been frank, addressing options, making recommendations but also stating it's my father's decision.
So get some input from someone other than the hospice nurse. Sometimes it's just too easy for people to give up on the Depression Era generation. I had to battle a doctor like that last year.