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.
Follow Mayhill Fowler on Twitter: www.twitter.com/Mayhill
Judith Johnson: End-of-Life Planning: Why It's Such a Smart Thing to Do
If that doesn't happen, at least I'd like to die when I'm pretty sure there's little hope of being more of a contributor than burden to human happiness and welfare.
In her later years, my mother, perhaps in jest, talked of moving to Oregon to take advantage of their Right to Die law. I was tempted to mention that a small overdose of some of the medicines she already used would do the job quite peaceably, as well as could be expected of an Oregon doctor.
An excellent article by the way. Thank you.
That is what happened to Terri Shiavo, and why she was in the vegetative state for years. Without that statement, the hospital is REQUIRED BY LAW to keep administering nutrients and water......which means you could go on living for ??????????
I have searched for it there and cannot find it.
Also just clicking on the link, does not work. I had to copy/paste it to the address bar.
Thanks for your hlp.
Ron
Cost $0
I already have to sign so many thngs at that point ...
Gio
Been reading your posts and I'm a little off track from you guys. I one hundred percent agree with the right to die. It's a decision I think needs made with a sound mind - which is why Selena pointed out she's got it written down all over the place. So do I.
I think it's safe to say that caution needs used in administering this idea. Speaking as the surivivor of a close friend killing himself, I'm always pretty quick to point out that in the case of otherwise healthy people, there are ways to get them through the trouble without allowing them to check out - and people tend to be happy at the end of it, that they weren't allowed to die.
If you're in a hospital bed with tubes coming out of you, breathing through a machine - wanting to die is not something I'd want to "fix". If you're a twelve year old boy who isn't popular enough - well, I really don't think granting you your suicidal wish is the right thing to do there.
Philosophically, hairs get split talking about this sort of thing, which is why Selena is exactly right about putting your wishes in writing.
And, yes, that does include children. The fact of the matter is, we in this society do not give our children the credit they deserve in terms of their mental and emotional capabilities. We want them to stay young, naive and innocent, because we believe that will protect them from pain. But, more often than not, the attempt to keep a person protected from pain often causes more pain when reality is being faced, and no one is around to protect them.
So we must allow our children to face the same decisions as adults do, and guide them and nurture their decision making abilties, and base each person on a case by case basis whether they comprehend the consequences of their own actions.
Hell, I wish ADULTS would comprehend the consequences of their own actions when it comes to DWD, and realize that it is often far more painful for a family member or loved one to watch their relative/friend remain "alive" in a vegetative state than it is painful to watch them die a quick painless death that they controlled themself
THERE is part of the problem. IME MOST people are NOT "happy that they weren't allowed to die". They merely tell you what you want to hear. IF they were "happy that they weren't allowed to die" there wouldn't be repeated attempts and as we all know well... it is a rare person who stops at ONE attempt at suicide. There's more than one way to "skin a cat".
Blunt honesty... I will REGRET unto my dying day that my mother came home from the hospital 5 minutes too soon and called an ambulance. For reasons which are personal I will REGRET unto my dying day that I FAILED. Does that mean that I will make another attempt? Nope. What it means is precisely what I said.
I have ensured that there is NO "interpretation" with regards to my wishes possible.
Again, mine is the opposite perspective - a friend killed himself when we were both young. Of course I like to think he'd be happy to be alive today. Maybe not.
But there are stories like that - people I know who've made serious attempts, and they are genuinely thrilled to be alive today, and genuinely happy that someone stopped them.
And really, I've discussed this topic in the non-cyber world so many times, that I've kind of dealt with it by treating it a little lightly. Obviously that came across as disrespectful - again I really apologize for my assumptions and maybe my tone. People made a lot of assumptions about me when I went through it on my end, and I found it pretty irritating.
Copies of it are in my medical records (not just my doctors but also every hospital that I have ever been in the emergency room of), I carry a copy of it in my wallet, a couple of my brothers have copies of it, one of my aunts has a copy of it, my attorney has a copy of it, H*ll even my oldest child has a copy of it. I have made SURE that my wishes are known in the event that I am rendered incapable of making medical decisions for myself. I am a "no code". Do NOT resuscitate my arse... LET me die. Throw a party to celebrate my LIFE and get on with LIVING your own.
Do I WANT to die? Nope, sure don't. I ALSO don't want to be KEPT alive, a prisoner of my body, incapable of ENJOYING the life that I am living.
"my life, my body, my decision, and in the event I am capacitated 'X' will make the decision for me" should be the rule of law when it comes to EOL decisions
TRIPLE A - THESE SOLD ALL OVER THE WORLD. Hence this massive meltdown .
Reagan and Bush and Clinton and Bush made the problem WORSE. Probably the WORST thing that happened with regards to the deregulation happened in 1999 when Clinton signed the repeal of the Glass-Steagle Act, which only served to accelerate the current economic crisis.
So often, we would see patients and their families resort to complicated, highly complex ICU care which is distressing, traumatic and interferes with family visits. I never made recommendations but spelled out the truth, and then they were free to make their choices. So much of the intervention done in the final days of life are futile, expensive, and interfere with making the best of the time remaining.
are NOT so confused & scared. . Thanks so much.
But no one wants to or is willing to discuss the failings of the medicine and technology we receive
So they discredited Moore as a far out 'Liberal type ' Sound familiar ? This is just another massive scam- pushed on us by the likes of the far right wing - like Mr Luntz- a paid right wing guy who
' helps ' the right wing find the correct terminology to scare us all. ALL the " scary talking points to use on Americans ' Let's take back the country . GOP REIGN --since Reagan's 1981 deregulation of banks & Wall St & trillions to fat cat