Palliative Care Navigation
When her husband was diagnosed with breast cancer (yes, males do have breast cancer), a friend compared trying to find the right services, at the right time as looking for a library book in a library with no card catalog and all the books scattered on the floor. At first he was told to get his affairs in order, that males usually lived for less than a year, but then through good fortune and knowledgeable friends, my friend got a referral for her husband to a different oncologist. The treatment was essentially what we know of now as supportive care or long-term palliative care. The oncologist talked about treatment as treating it like a chronic condition-- using chemo and then testing to see if it knocked the cancer back but always concentrating on quality of life. At every appointment, the first question he asked was "what have you enjoyed lately?" 7 years later, during the conversation about life and what he might enjoy next, the oncologist said "I don't think that there will be a long term for you" and then began the conversation about what was important to my friend's husband in the next month and what he wanted at the end of life. Although they asked for palliative care, that didn't happen. A couple of weeks later, he had to go to emergency and was admitted to acute care because there were no palliative care beds available at the time. He was in acute care for 3 weeks and every day my friend told me they were praying for him to be admitted to palliative care. Two days before he died, a bed became available in palliative care.
Then a couple of years later, my sister was diagnosed with melanoma. After surgery, the family was told that there would be no recovery and we requested palliative care. She was admitted to palliative care, but before the transfer from acute care to palliative care, they removed her catheter and pick-- only to have to have them reinstalled once she got to palliative care because she needed medication IV. It was incredibly painful! We always have wondered why.
