I can summarize the entirety of my hospice experience by saying this: hospice is here to stay. Before the program, I read a book that estimated the number of Americans getting to that special age of 65 at about 7800 a day; the more recent estimates I’ve seen have that figure closer to 10,000. With that being said, it is easy to see why people need superb hospice care and the urgency that should be associated with it.
In a perfect world, health care would have flawless continuity and hospice/palliative medicine would be there at the end with open arms, strengthening patient goals and helping boost quality of life. Clinicians, from all specialty realms, would be frank about outlooks and, when appropriate, have end of life talks without hesitation. There would be no smoke and mirrors and pushing the vital discussion and truth further down the line to another health care team, thereby flustering the patient with more uncertainly and, often, false hope.
We don’t live in this world. I don’t think this world will exist in my lifetime. The health care experience I’ve seen for patients, even in the western PA system, isn’t where it needs to be. There is endless room for improvement and quite a bit of misconception that needs to be eradicated because of its harmful influence. This needs to start at the foundation of medical training for all players in the health care system. Research has shown that medical schools would like to interject more hospice/end of life material into the curriculum but there is no room. This is incredibly myopic. Perhaps some of this hesitation isn’t due to a grossly oversized courseload but the erieness that often accompanies the dying situation. Either way, something has to give because the aging population needs quality care and there is no discussion there.
I often think about an older African American woman I met being taken care of by her daughter in a Pittsburgh neighborhood. The stress on the daughter’s face was palpable; there were errands to run and taking care of mom was obviously not how this young lady pictured her life playing out. As a student, I had little to offer to this situation other than a listening ear and relaying needs back to the hospice team. Although my role here was minimal, a few points became clear. This woman was receiving quality care but there was substantial strain felt given her daughter’s frustration and need to get out. A clinician can do little to assuage this burden directly; however, they can ameliorate the situation by being direct and clear about outlook and reaffirming patient goals. As lay people, this medical condition was puzzling but a communicative individual can make a world of difference. Even better, if this mother and daughter team know that their health care provider(s) are always within reach, then I believe quality of life will increase.
After working in hospice as a caregiver, I can say that I think a lot is wrong. For instance, opioids are still vastly misunderstood and “hospice” certainly does conjure up dark images for a lot of folks. I think it is easy to see how hard it will be to “turn the tide” on these issues and create true reform. I’ve certainly felt powerless after getting a glimpse. I will say that the same was said about civil rights reform and other tectonic shifts made in American thinking. Changes in hospice/end of life care/health care will follow the same tumultuous path but doing so is not only the right thing to do, but the only thing to do.