Except for soldiers and caregivers, Americans don't know much about death. The question President Obama took from Mary in North Carolina at the AARP Tele-Town Hall on Health Care Reform July 28 dramatizes this innocence. "Everyone that's Medicare age will be visited and told to decide how they wish to die. . . . This bothers me greatly, and I'd like for you [Mr. President] to promise me that this is not in this bill." Mary was referring to the section in the 1018-page House health care reform bill that says Medicare in future will pay for an "Advanced Care Planning Consultation" every five years for Medicare recipients. One of the many ironies about the rumor that health care reform will mean government intrusion into end-of-life decisions is that the impetus for pages 425-434, which deal with this topic in draft bill H.R.3200, is restricting such a free consultation to every five years, except in certain instances, on the assumption that this is the kind of personal care that people will want.
But many Americans are afraid to think about the subject. We all know we are going to die but we manage most of the time to forget it. Therefore, the bill drafters envisioning a stampede for knowledge is in itself part of the national ignorance. Nor has White House Press Secretary, and by extension his boss, dealt well with the dynamic of fear fueling the rumor about a government directive. Compartmentalizing the issue as merely one of euthanasia or the same kind of brouhaha that surrounded the late Terry Schiavo, as Gibbs did in his press briefing of July 28, will not deal with the national unease. A lot of people are intimidated, if not downright scared, by the prospect of a will of any variety. So the White House, too, is displaying obliviousness. Is it any wonder that support for an overhaul of our health care system is eroding?
The bigger irony, one that encapsulates our national innocence of death, is the assumption behind the Medicare rumor -- that people can indeed decide how they wish to die, as Mary from North Carolina put it. If only that were true. But the reality is that our last rite of passage is shaped by relinquishing control, over decision-making among other things. At least, this is what a quarter-century of on-and-off caregiving for family and friends has taught me. The journey towards a good death involves giving up control in such a way that sense of self and dignity -- at a time when, to be brutal about it, somebody else is wiping your ass -- are preserved. And the biggest irony is that government, principally through Medicare, is already helping Americans and their families to find this good death and has been as long as I have been caregiving. H.R.3200 would merely formalize the interactions already happening informally and quite naturally. More importantly, the draft bill would provide an incentive (it's free!) for Americans to learn some things that if not for this fear of all things death-related they might like, in the end, to have known. Let me tell you two stories to illustrate.
In July, a dear friend passed away in an ICU at a San Francisco hospital. He had been diagnosed with congestive heart disease seventeen years ago and at that time got his first defibrillator. Seventeen years is a good run for someone with congestive heart disease. But in all that time he never made end-of-life plans. He loathed hospitals and yet did nothing to try to ensure that he did not die in one. Even though he was highly-educated -- indeed the author of several books -- he never made a living will or a medical durable power of attorney (health care proxy). And so, through the fault of no one person but in the tumult that surrounds a rite of passage, my friend died in an ICU. The last time I saw him he was sedated for a severe case of ICU dementia, hooked up to a ventilator, threaded intravenously through every limb, and suffering from discomfort in his groin where two large tubes passed his machine-pumped blood in-and-out. Perhaps because I am accustomed to ICUs, I was struck most of all however by his hair, dirty and greasy. If he were dying at home, his wife and I together could have washed it.
Believe me, an ICU is not a place you want to die, if you should be so lucky as to have the opportunity to forestall such a venue. (Accident victims, for example, often have no such opportunity.) There is no privacy. You lose your sense of up and down, night and day. Even family members become unmoored to diurnal rhythms. Having experienced that disorientation, I can tell you that it afflicts sanity. What the medical profession calls ICU dementia is all too common among the patients. Since we have so little choice in the time and manner of our going, the few preparations -- like signing a living will and choosing a health care proxy -- for circumventing ICU-like circumstances are all the more precious. That Medicare might begin to offer what amounts to free legal services -- in the sense that the counseling, if not provided by a lawyer, would nevertheless help people to understand their end-of-life legal rights -- is an eventuality to be celebrated.
In fact, this information-sharing is already taking place as Medicare caregivers interact with patients and their families. When my mother-in-law Florence was suffering from throat cancer in 1994, the nurses who came to her house at first every three days and then once a day and finally twice a day (all paid for by our taxpayer dollars) made sure that she, as well as we her family, knew about not only health care proxies but also the specific California state laws on such issues as withholding treatment. Likely the nurses were particularly solicitous because they knew that Florence wanted to die at home. Florence had already made a living will and assigned my husband durable power of attorney for her health care. She had done that when she was diagnosed because she did not want to die like her husband, also from throat cancer, but in torment from undergoing the latest treatment at UCLA Medical Center.
It is one thing to say "I want this and this but not that" when a woman is still mistress of her mind and body. Therefore, if this is to be an honest account, I must mention the afternoon when Florence, who had vociferously declared she did not want to be taken to the hospital (where at the time California law would have dictated she be put on a ventilator), quickly had difficulty breathing and cried out for the emergency room. This was late on a Friday afternoon -- I can bring it back in an instant -- and the Medicare nurse stood on one side of the bed, I on the other. We looked at one another, both of us unsure. My mother-in-law continued to beg to be taken to the hospital in nearby San Luis Obispo. The decision, however, was now my husband's to make. I called him at his office in San Francisco, and he said "no." Thank goodness the decision-making did not rest with any of the three people in that sickroom. And so the fraught moment passed; slowly, Florence began to breathe better. But this incident shows that end-of-life decisions, even ones that my experience tells me are good to make in advance, are not easy in execution.
The reason I have never regretted that afternoon with its small cruelty -- not to mention the evening my brother-in-law and I tiptoed into Florence's bedroom to turn off the machine that had helped her for awhile -- is that she was dying a good death. Suddenly for the first time that summer it was very quiet in the bedroom. Our Shih Tzu, curled up at Florence's feet, lifted her head and then settled down again. Only hours before, the room had been filled with family and laughter, as well as a sorrow weighted with momentousness. Florence, in the way the dying often do, had hung on until everyone -- my older daughter coming from Russia -- could get there. Then she had folded her hands over the sheet and closed her eyes. A minute later, she opened her eyes and said, "I'm still here?" That was the reason for the laughter. Having at last said goodbye to all her loved ones, Florence thought she could just up and go .
That night we family took turns keeping vigil. Two generations of Fowlers -- three counting Florence -- were bedded down throughout the house. The next morning we began to see the signs the Medicare home nurses had taught us signaled that the end was near. The Medicare team had prepared us; we knew what to expect and were not afraid. After Florence had breathed her last, our Medicare nurse came to the house and helped us three daughters-in-law to wash and to lay out her body. Truth be told, the men in the family turned away from the door in consternation -- if not horror -- at the sight. But we daughters-in-law were performing a task that women have done for thousands of years, and in that long linked chain of connection the three of us have found a surer sense of who we are.
In the manner of her death, my mother-in-law has given her family a gift that just keeps on giving. Each of us in turn is now less afraid of death. (And we women are quite competent nurses because Medicare pays for everything related to end-of-life, from help with nutrition and language to grief counseling for family -- except for that one thing of everything most needed, the day-to-day caregiving.) Between 1994, when Florence died, and 2006, when my mother passed away, the Medicare hospice program changed to include formally the end-of-life care my mother-in-law received. But as one of my mother's Medicare hospice nurses said sadly, "Most Americans don't choose Medicare hospice until the last two weeks of life." And even more don't know about it. Or are afraid of it. The Medicare hospice option made it possible for my mother, too, to die at home, in Houston. The night before she died, we five daughters sat around her bed and sang hymns -- with some argument over song selection -- that we looked up on our laptops. We knew the end was near because the Medicare hospice nurse, thinking to stop in for a quick visit earlier, had immediately canceled the rest of her morning's appointments and spent four hours with us. "I know when a patient is about to go," she said, "because there is a certain smell to death." And so we stayed up that night keeping vigil. And the next morning we, too, with the help of a Medicare nurse washed a mother's body.
Lately I've been thinking how many choices in life are like the one Shakespeare's Bassanio in Merchant of Venice must make: among three caskets of gold, silver and lead. For the past week, some Americans have been asserting that a provision for Medicare to pay for Advance Care Planning Consultation, as part of larger health care reform, is a threat. But it is that unappetizing-looking option -- the one that appears to be lead -- that holds the riches. End-of-life planning does not hinder but helps us with the individual choices we hope to make. For both my families -- the one into which I was born and the one into which I married -- very different in culture and belief -- the government through Medicare made possible two good deaths. Now it may sound strange when I say this -- but there are few days in my life that I value more highly than the mornings my mother-in-law and my mother passed away.
To be able to make any kind of advance planning is an enormous gift. When several years ago my father spent some time in a Houston hospital after an abdominal aortic aneurism repair, I heard from an astonishing number of people, joining me in marking time in the ward, who had family -- usually a man in his fifties -- who had died from a ruptured abdominal aortic aneurism. Typically, a person does not know that he or she has such an aneurism waiting to blow. It does not seem like a good way to die -- in terror and in pain, bleeding out in forty minutes. For such men, advance planning is meaningless.
Side note: It will be interesting to see if health insurance will begin to pay as a matter of course for scans to detect such aneurisms -- even if only in risk groups such as men who have been or are smokers. The absence of such a protocol is an example of the health care rationing that is already in place, as anyone with an HMO knows. (My father's aneurism was detected incidentally during a scan for another purpose.) But my larger point here is that the person who makes what few end-of-life choices he or she can is not -- pun aside -- pondering a leaden casket. He or she is looking towards that golden hour that will not be vouchsafed to everyone but that government, our government, federal and state, is already helping to create.