As it turns out, I am spending my pre-Christmas week in South Florida (I drove down from Brooklyn Sunday night after my flight was canceled), sitting by my late mother’s older sister’s bedside in a hospice ward. My aunt is 90 years old and, despite her advanced cancer, was completely independent as recently as six months ago. She wasn’t afraid of dying–she’d outlived her parents, her husband, and both of her siblings. She had a good life and would have liked to have a good death.
The day after Thanksgiving she fell and broke her hip and, as so often happens–at least to the well-insured–was sucked into the machinery of advanced medicine. Doctors replaced her hip; intake nurses from rehab facilities solicited her with brochures and contracts. She would have given anything to return home, but to do that she needed to regain a modicum of mobility. An hour before the paramedics arrived to transfer her to the rehab facility, she spoke to my sister on the phone and told her she’d changed her mind–she just didn’t have the strength. When I called her, they had her on the gurney. “I’ll give it my best shot,” she said resignedly. Within a few days she developed infections; soon the pain was disorienting her to the point that she could no longer make her own decisions. My sister and I made arrangements to have her transferred to a sub-acute rehab facility where the demands on her would be lighter, then, as her condition rapidly deteriorated, we changed her destination to a nursing home. Before a bed became available, she lapsed into a coma. Yesterday she washed up here. It’s a good, quiet place. Everyone is respectful and kind and no one is poking and prodding her anymore. It’s just a matter of time.
I told the hospice intake nurses that it would have been a better thing by far had they spoken to my aunt directly while she could still understand them–not during her crisis, but well before things got so out of hand, so that she could have formulated a plan of her own for these last days. Maybe she would have opted to skip the last few months of chemo; maybe she would have sent the rehab nurses away. She was just about worn out even before she fell. But the system is tilted towards intervention rather than prevention or palliation. Medicare paid for her chemo, it pays 100% for hospitalization and rehab but nothing for long-term hospice room and board–and thanks to Sarah Palin and her death panel canard the little bit of counseling that Medicare did reimburse has been stigmatized to the point that even that might soon be a thing of the past.
I adored my aunt–I still do, even while she’s breathing her last; I will miss her terribly. But she’s no Terri Schiavo (neither was Terri Schiavo, but that’s a different story). My aunt’s death was inevitable, not even Dr. Bill Frist or Tom Coburn would have given her good odds after her fall–or even before it, with her cancer metastasized and her chemo only minimally effective. She knew it, I knew it, and every last one of her caregivers knew it too. Yet all that anyone talked about with her was a “return to independence,” even though they knew that the likelihood of such a thing ever happening was vanishingly small.
I wish there had been an “opt out” built into the system; that there was a forum where all of her options could have been spelled out for her, a hiatus when social workers, nurses, and family could calmly solicit the patients’ wishes and acknowledge them and honor them if that’s what’s appropriate (doctors are so abrupt and impatient, at least when they are doing their rounds in hospitals, that it might actually be counterproductive to involve them in the inevitable backs and forths of such a discussion). Myra was a fighter to the last. But I’m afraid she fought a few months longer than she really wanted to, because she thought that was what we all expected of her.