Monday, January 10, 2011


The hospice people are wonderful, my sister is convinced that only the nicest possible people are allowed to work for hospice. I think so too.

Normally, I'm sure its very simple to get a hospice referral. The physician or someone in the office sets it up. My sister called the oncology office to request the referral for our dad. Whoever answered the phone refused to talk to her, even though she has power of attorney and Dad has signed forms for medical release and whatnot on file. She, and her husband both, called the office and left callback requests for the doctor, and he claims he never got those messages. Really, it shouldn't be this hard. I know there are patient confidentiality laws, but they wouldn't even talk to my sister.

My sister is persistent and resourceful, so she called Dad's regular physician's office for help. They were very helpful, explained what they required from her in order to process the request, and set up the referral. And we got to meet the nice hospice people. There is a nurse that right now stops by twice a week, a home healthcare aide who would stop by twice a week to help with light housekeeping and cooking if my dad would let her, and a volunteer who plans to stop by twice a week to keep company and help if Dad wants to make cookies or something. After a previous incident, Dad isn't supposed to do any unsupervised use of the oven or range top. Microwave is ok. Later, and as needed, the frequency of nurse visits may increase, and the hospice doctor can prescribe drugs to alleviate pain, anxiety, agitation, and other distresses.

All of the hospice visits, in addition to our own, are our way of keeping an eye on Dad. The hospice nurse is concerned about Dad living alone, and told us that sometimes things go bad suddenly, like waking up and not being able to get out of bed. Right now, Dad's girlfriend is staying with him. L is truly a gem of a person, but she lives about 2 hours away and can't stay with Dad all the time, she has responsibilities of her own. During the time she is here, Sister and I plan to cobble a plan together, ok, more like plan A, B, C and D, on how to increase supervision for Dad at home, and for when he might need to move into a care facility of some sort. We're seeing more an more changes in Dad's behavior, and we are concerned.

Besides the palliative care offered by hospice, we are very grateful for the insight and experience they offer. I suspect hospice has more direct contact with end stage glioblastoma patients than many doctors. The information the hospice nurse gives us is really helping us understand how Dad's brain is affected by the tumors, and gives us a general idea of what to expect in the future. 


Unbelievably, at least to me, we had to wait 3 weeks to see the Oncologist about whether or not Dad was a good candidate for Avastin treatment. Yes, I am still feeling irritated about this. We had just been told that the tumor(s) were growing faster than expected, and that the Avastin might be a way to rein that in a bit. And we couldn't see the doctor for 3 weeks. I was fully ready to start making phone calls and pounding on waiting room doors to find a doctor to talk to sooner, but Dad didn't want me to do that.

So, we did online research, natch. Avastin works by inhibiting blood vessel formation, robbing tumors of the energy supply. Side effects are usually minimal, mostly involving blood leaking through thin tissue like mucus membranes. It can impede wound healing. Treatment must be stopped at least a month before any surgery. Its very expensive, and doesn't work for all types of tumors. But it has been used against Glioblastoma. With good results. What we couldn't find out online was whether Dad could be considered a good candidate for treatment, and would his health insurance pay for it. It is a very expensive treatment. I suggested at least calling the insurance company and asking, but again, that was nixed.

I don't consider myself a "do whatever it takes no matter the cost to save him" person. I understand that recovery isn't likely or expected in this case. But, damn, I want as much information as possible before making a decision. I felt frustrated, not a lot, but accepted these weren't my decisions anyway.

While we were waiting to see the oncologist, my sister and I discussed the future. Dad wants to stay in his own little place to the end, or as close to it as is safe and practical. We agree with him, we want him to be happy, and truthfully, no matter how horrible this might sound, neither of us want to move him into our homes. We did feel that getting hospice involved early was a good course of actions and wondered how to bring it up with Dad, but then he brought it up first.  More on that in the next post.

Finally appointment day arrived and 5, yup 5 of us crowded into an exam room. Dad, his girlfriend L, my sister, her very supportive husband, and me. Here is what we learned, in a rather large nutshell; Dad is a candidate for treatment, treatment means coming into the office once every 2 weeks for the rest of one's life and spending about 2 hours hooked up to an I.V. while the drug is administered. Health insurance will pay for the treatment. Effectiveness is tracked by periodic MRI scans and symptom severity. Possible extension of life expectancy, zero to a few months.  Dad declined treatment. He didn't say why.