In the movie “Terms of Endearment” Shirley MacLaine plays Aurora Greenway. Her daughter is diagnosed with terminal cancer and Aurora stays by her side and VIGOROULY advocates for her care, including pain management. If you’ve seen the movie the scene where she politely (initially) tells the nurse it’s time for her daughter’s pain shot is funny, poignant, and perhaps all too familiar to some of us. Ultimately in that scene Aurora ends up screaming, at the top of her lungs, to “GIVE MY DAUGHTER THE SHOT!!!!” May we all have such staunch advocates at our side if that need ever arises. Even if we do, will that person know what we want?
In a recent Washington Post article the disparity between the reality and our wishes regarding the location and quality of end-of-life-care is discussed – “in California, 70% of those surveyed said they wished to die at home…[i]nstead, many of us die in hospitals, subject to overmedication and infection, often after receiving treatment that we do not want. Doctors know this, which may explain why 72 percent of them die at home.”
Also referenced in this article is the statistic that generally less than 50% of us have discussed what our wishes are about this incredibly important issue (less than 33% of us have actually documented those wishes). This number coincides with the percentage of Americans who have even a basic estate plan in place. This kind of information can be conveyed in a document like a Living Will. While this document has no “legal” effect in Massachusetts, it is an invaluable tool for our health care agent, family, doctors, nurses, etc. in helping them fulfill our wishes for the quality of life we wish to maintain (or not for that matter).
We (ourselves and our advocates) must become our own “Aurora Greenway” and make sure our doctors and caregivers will support our care wishes (palliative care, etc). We must also educate ourselves (or get people on our teams that do know) what is available to us at such a time – for instance, hospice is covered by Medicare for up to 6 months (used on average for 20 days only). As the article says in closing “[a]s with any social change, progress will be driven by a growing awareness and a desire for justice among families and patients. “ Rise up Aurora!