Mom is 82, she's been in assisted living since mid-March this year, after a couple of falls and hospital stays. I found a ALS residential home that is lovely with caregivers that I like, activities to stimulate the residents on a regular basis, birthday and holiday parties, they send pictures so I know she's having fun.
She's recently been diagnosed with Merkel Cell Carcinoma, an aggressive skin cancer. We had an oncologist apt and scheduled a PET scan to confirm whether or not it's spread. My mom is on level 1 hospice for Myasthenia Gravis (MG) and if she wants to pursue treatment, surgery, radiation or immunotherapy she'd have to come off hospice, have a hospital stay, then rehab. Medicare won't cover both. She is confined to a wheelchair, needs a two person assist and does not have the use of her left arm. She also has three full pages of medications which always astonishes the hospital staff. The Oncologist indicated she was not a good candidate for radiation, which means we're really on the fast or slow decline with this particular cancer. Here's where the waffling comes in, one minute she wants to stick with hospice, the next she wants to move forward with the PET scan and treatment. We had the PET scan scheduled for this coming Wednesday, and three days ago I cancelled it because she left a vm saying she didn't want to move forward with it. She's presenting cognitive decline so I'm not sure if she remembers or just changes her mind a lot. I have compassion for her situation and want to do what's best. I know the MG and coming off hospice will put her through the ringer and could kick start other physical declines. Last time she was in the hospital she said she never wanted to go back. What's a daughter to do? Do I move forward with the PET scan knowing that the news won't be good (she has lumps under her chin and while she can have the surgery, she can't go through radiation, she's isn't strong enough, which means the cancer will just return) or try to convince her to remain with the comfort and care of hospice?
"Mrs. R, you have a serious cancer; we can do some surgery which means a trip to the hospital, anesthesia and a couple of weeks of rehab. You are not stong enough to do radiation, so we will need to rely on the surgery to get as much of the cancer as we can. It will buy you (here, doc gives an estimate of how much time this buys her). This is your decision; we can make you comfortable as you are on hospice now, or you can go off hospice for a few weeks while we do surgery and rehab. Please think about this and let me know what you'd like to do."
Maybe the doc has already done this. If mom is waffling after this sort of conversation with the doctor, I would re-schedule the PET scan if (and only if) she requests it.
Hospice isn't prescribed unless there's a chronic issue that is likely to end one's life sooner than later, so if it was me, I'd stick with hospice and comfort care.
BUT this is a decision your mom should make after the doctor lays it all out as to prognosis, how involved the cancer is and how involved the surgery would be.
There are/can be problems with anesthesia particularly in older people. And if mom has cognitive decline the effects can be more lingering.
This is a good time to discuss with mom what her wishes are as far as to life sustaining treatments, does she want them, if so temporary or lasting.
If she has filled out a POLST or "DNR" I was told when my Husband went in for surgery that they are "suspended" during surgery.
If you are her POA for Health you should know her wishes prior to any treatment.
Does Mom have another reason to be on Hospice than the Myasthenia Gravis.
"While complications of myasthenia gravis are treatable, some can be life-threatening. Complications may include the following: Myasthenic crisis is a life-threatening condition that affects breathing and requires immediate treatment for the person to be able to breathe on their own."
I would get the Pet Scan just so I have all information needed for you to make a decision.
"Merkel cell carcinoma tends to travel first to nearby lymph nodes. Later it may spread to your brain, bones, liver or lungs, where it can interfere with the functioning of these organs. Cancer that has metastasized is more difficult to treat and can be fatal."
If it has metastasized, I may just let it go. Mom is already on Hospice. If Dementia is also involved, I would not put her through treatment.
"Merkel cell carcinoma is frequently curable with surgical and nonsurgical therapies, particularly if caught early. Treatments are often highly individualized, depending on a patient's general health, as well as the tumor's location, size, depth, and degree of spread."
If Mom has to be put under for surgeries, that could worsen her Dementia. If the Myasthenia Gravis is effecting her breathing I may not even consider operations.
The dye is attracted to the most fast moving cells (cancer, and brain). In my case, it showed definitively where the cancer was and how big it was and gave us a jumping off point.
It's the effing TREATMENT for cancer that's awful. I would not put myself through it again for anything or anybody. Some people think that's horrible, but it's MY choice. Does your mom have, right now, the mental and physical ability to handle the many tests and Dr visits that a cancer tx can throw at you?
Mom is on Hospice. If she opts for cancer tx, she will be taken OFF hospice.
I hope she is aware enough to make the decision that's best for her. As far as the PET scan, it will answer a lot of questions and kind of guide the way for TX, should she choose it.