You might have heard that people like everyone’s favorite anti-feminist, Sarah Palin, are spreading lies about the proposed US health care reform including mandatory “death panels” that encourage elderly people to just up and off themselves already to save all us youngsters some cash. You might have also heard that Sarah Palin is a lying sack of shit. Hopefully those of you who are following what passes for “grassroots activism” about health care know what’s what and do not appreciate that people who openly advocate killing elected leaders would rather have children die from a neglected toothache than bother to look up the word “socialism.”
In truth, that section of the bill would require Medicare to pay for voluntary counseling sessions helping seniors to plan for end-of-life medical care, including designating a health care proxy, choosing a hospice and making decisions about life-sustaining treatment. It would not require doctors to counsel that their patients refuse medical intervention.
Voluntary counseling sessions helping seniors to plan for end-of-life medical care. Voluntary counseling sessions. There’s your death panel! Heaven forfend!
Let me tell you a little something about end-of-life medical care. I’ve mentioned here before that my mother has Parkinson’s disease. What I have not mentioned here before is that she is dying. For the last several months, she has been receiving at-home hospice care. She spends most of her time sleeping in a hospital bed in the bedroom she shares with my stepfather. She can no longer sit up on her own or speak more than a word at a time. She can look at magazines but she can’t read or sign her name. She likes to listen to oldies on the radio station, and she likes to get visits from people, but she can’t really stay awake and attentive for more than half an hour or so. In the last five years or so, she has gone from having some bouts of confusion to being profoundly incapacitated. For many people, end-of-life neurological diseases operate more slowly, giving them time to adjust their lives to their progressive disabilities. For my family, by the time we had a diagnosis, things were already changing, almost too fast to keep up. This is complicated by the fact that my mother probably also has other neurological conditions which compound her dementia.
We did not get a lot of non-medical guidance throughout this process. My mom was in denial at first about how serious things were; she refused to see doctors, refused to face what was coming. By the time the rest of us realized how seriously her body and mind were changing, her dementia was pronounced enough that it became very difficult to communicate with her about long-term care decisions. You know what my family could have used, way back when we first realized that my mother had a progressive neurological disease, even before we had a specific diagnosis? A fucking death panel. Voluntary counseling sessions helping seniors to plan for end-of-life medical care. If someone had sat us down, as a family, including my mother while she could still communicate clearly and thus advocate for herself, and told us tactfully but directly that there would come a time when she would not be able to express her wishes, and that we should figure out now what she wanted then, our lives would have been, if not easier, less painful now. Because, the way it is, my stepfather and I are really just guessing. We don’t know if she would like a DNR directive, for instance. We don’t know if she would want to be buried or cremated. We don’t know what state she would want to be buried in, for god’s sake. We decided to enroll her in a neurological study (which involves an autopsy after her death) because she used to be a scientist and we think she would appreciate contributing to science even in her death. But that’s actually just an assumption we have made. We don’t know. We’re guessing.
Some of this, surely, is about family communication. Maybe we could have been more open with each other about death in general, or about our personal beliefs. But I don’t share a religion with my parents; my mom and stepfather don’t share a political ideology; we don’t necessarily have common ground to start with in our beliefs about death and care. My mom could have written a living will before she got so sick; she probably should have. Except, like the rest of us, she was scared out of her mind at what was happening to her, and she wasn’t thinking clearly about the future, because the future seemed impossibly distant compared to the terrifying immediacy of now. It took my stepfather and me almost a year to convince her to go to a neurologist in the first place; I can’t imagine that we could have, on our own, convinced her to imagine herself dying so that she could write down what we should do with her corpse.
That’s why we need counselors, professionals who know what it means to face end-of-life care and who know, pragmatically, what decisions have to be faced while you still have time to think. My family has been struggling on our own for years to coordinate my mother’s medical care while helping her have some semblance of a social life. Engaging hospice care was emotionally brutal, because it meant acknowledging that she was dying. I guess Sarah Palin and her cronies would call that giving up. But what it really meant was that we finally could get the resources we needed — medical, social, and personal — to give my mom some dignity. We are not just collections of organs that sometimes go bad. We are whole people, and counseling should be a part of medical care. When my mom was just profoundly ill, it was a family problem. Now that my mom is “officially” at the end of her life, it is a community effort: both publicly run (hospice care) and privately volunteered (help from her church community).
We are so terrified of death in this country — so sure that if we just do everything right, we will never face it, so sure that death is something that only happens to the very bad or the very old — that the idea of a counselor sitting you down to discuss your ideas about death petrifies people. We refuse to look at the reality of death, the fact that our minds are actually part of these bodies we live in, and that means they will one day cease. Death, in and of itself, is not a tragedy: it is part of our humanity. The tragedy here is that there are politicians trying to convince you that Obama wants to kill your grandma, when what he really wants is to protect my mom.