The Public Option Death Panel

Here’s a death panel even Sarah Palin could love — but maybe we’d better not tell her. You, however, will probably understand its value and possibly want to put it to work for your own benefit. It centers around a form called POLST, for Physician Order for Life Sustaining Treatment (in New York it’s MOLST, for Medical Orders) fast catching on across the country. The panel consists, essentially, of your doctor and yourself.

Initially developed in Oregon in 1991, POLST programs are underway in a handfull of states including Washington, California, New York and North Carolina, and are being developed in over a dozen others.

Erin Henke, POLST Program Manager for the California Coalition for Compassionate Care, outlined the program for a group of healthcare professionals this week in San Francisco, part of CCCC’s efforts to get it efficiently established across the state. The key, she emphasized, is the conversation between individual patient and medical professionals. You don’t get the form signed, in other words, unless and until patient and physician have discussed what the former wants: CPR if you’re not breathing? Feeding tube? Comfort care only, if you’re in bad shape, but you’ve got a pulse and are breathing? Or perhaps every intervention possible — tubes, wires, ventilators, the works, including transfer to a hospital intensive care unit. But the point is, you make your own decisions. Once the form is completed and signed, it follows you as part of your medical record. In California it’s printed on Pulsar Pink card stock, and not easy to overlook.

Rollout of the program, Henke explained, is an ongoing process; it will only work when it is widely known and understood not only by individual patients and physicians but also by the many other members of the profession — nurses, caregivers, ER personnel and others. CCCC’s focus right now is on skilled nursing facilities and hospitals, though Henke and the teams of POLST program advocates around the state are working toward a broad educational spectrum.

The basic POLST approach, as explained in a Journal of Palliative Medicine article by Diane E. Meier, M.D. and health care journalist Larry Beresford published earlier this year, is to provide “actionable information on how to honor the wishes of a patient with a life-threatening condition” on a variety of issues. It goes farther than an Advance Directive (though if there’s a discrepancy, the Advance Directive takes precedence) and it differs from an out-of-hospital DNR (Do Not Resusitate) form because it lets you choose treatment.

I asked Henke if the patient/doctor conversation which is necessary in order for this extraordinarily useful document to be completed is covered by most insurance companies. She says that to her knowledge there is no specific code for such a conversation, although she understands there are other codes under which physicians can bill. Let’s hope Betsy McCaughey and Sarah Palin don’t find out. Or Chuck Grassley.

Though I am only terminal just now in the same sense that all of us mortals are, I talked about the POLST form with my Kaiser primary care physician just to be sure we remain on the same page. Wouldn’t it be nice if everyone had that same opportunity.

What to do about Mom?

My friend Joan is distressed about her mother.   Joan – that’s an alias, we both value her privacy – lives quite near her parents, visits regularly, helps out with finances, health issues and everyday needs. They are in their late eighties. Other siblings live in other states. Until recently everything was fine; now the parents are in separate areas of their assisted living residence, Joan’s mother is in frequent despair and need. What’s a daughter to do?

This story is being repeated thousands of times every day across the country. Only this story has a peculiar twist: Joan’s parents did everything right. They lived frugally, planned ahead, raised their children to be successful and independent, moved early into a retirement community which offers care through illnesses minor and terminal. With Joan’s help they kept their affairs in order, including updated advance directives. (You don’t have your advance directives done? Horrors. Let me know and I will be at your door, cyberspacially speaking, to walk you through them immediately.) Joan’s parents were among early advocates for advance planning and end-of-life choice.

Joan comments: “Frankly, Mother is tired of being alive.  She’s not depressed, just ‘finished’, especially as she sees these slow declines in her quality of life as a steady and inevitable progression.  Her greatest desire would be to have a massive stroke and not survive.  But then her greatest nightmare would be to have a stroke and live . . . Even with the best advanced directives reflecting her choices, that’s a fine line to navigate.”

The moral of this story is that no amount of planning and preparation can guarantee the kinds of last months and years we might want. My own mother died peacefully at home, followed 20 years later by my father, same story. But that was in 1967 and 1987, in the small town of Ashland, Virginia where they had lived since 1939. The town looked after them; their out-of-state daughters merely visited and counted their blessings. Towns and neighborhoods like Ashland are in diminishing supply.

But all is not gloom and doom; this writer is constitutionally unable to write doom and gloom. Joan is at least clear about her parents’ wishes, and her parents have good care plus all allowable precautions: DNR orders, POLST forms, understandings with their medical professionals. Most of these are possible for today’s Boomers and their Beyonder parents; if you can’t find them I’ll happily tell you how. Joan’s parents are also in housing of their choice. And those choices are many: co-housing, retirement communities, assisted living facilities, many of them available to middle and low income Americans. Anyone over 50 who thinks he or she should postpone considering all of these issues, documents and choices until next year is delusional. Essays re housing choices have appeared in earlier Boomers and Beyond posts; others will follow. The secondary moral of this story is that without planning, late years can quickly turn into hell for elderly parents and adult children alike.

What we don’t have, of course, is health care such as Joan’s parents still enjoy for others who need it. The thing is, we can.

Healthcare: Sorting Fact from Fiction

House legislation on health reform is a win-some-lose-some proposition for those over 65. Especially, as outlined in The New York Times yesterday, when it comes to Medicare drug benefits.

Medicare beneficiaries would often have to pay higher premiums for prescription drug coverage, but many would see their total drug spending decline, so they would save money as a result of health legislation moving through the House, the Congressional Budget Office said in a recent report.

Premiums for drug coverage would rise an average of 5 percent in 2011, beyond the level expected under current law, and the increase would grow to 20 percent in 2019, the budget office said.

“However,” it said, “beneficiaries’ spending on prescription drugs apart from those premiums would fall, on average, as would their overall prescription drug spending (including both premiums and cost-sharing).”

The Congressional Budget Office report set off an immediate battle between Republicans and Democrats, each side eager to convince seniors — those vocal voters — that the other was representing the devil incarnate. Republicans swear the House bill will threaten Medicare beneficiaries in order to cover the uninsured, Democrats say the bill will help them by eliminating a gap in Medicare drug coverage.

On this particular segment of the impossibly complex bill, maybe seniors would do well to listen to their own purported champion:

Nancy LeaMond, an executive vice president of AARP, the lobby for older Americans, welcomed the report as evidence that “health care reform will lower drug spending.”

“Opponents of reform may use today’s projections to try to stall reform,” Ms. LeaMond said, “but we hope they will look at all the facts before jumping to a false conclusion.”

And there, some would suggest, is the problem. The facts have been virtually obscured by misstatements, misrepresentations and outright lies. Death panels? A lie that served its scary purpose. Rationing? It’s already here, folks; it’s done by insurance companies that deny coverage in sometimes arbitrary ways. Socialized medicine? Hello? Does anyone over 65 remember those screams before Medicare was signed into law in ’65? When half the population over 65 had no insurance coverage at all?

Set aside the fact that providing healthcare for all is simply the right thing to do. Millions of American seniors (whether you begin that definition at 65, 60 or — to their horror as it sometimes happens — 55) were motivated to support President Obama by not only their hearts but also their brains. If those brains can be called into play to sort fact from fear-mongering, we may yet get the health reform common decency requires of this otherwise civilized nation.

Health Bill Would Cut Drug Spending for Many on Medicare, Budget Office Says – NYTimes.com

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More on Health Care: Where the Costs Are

A few interesting factoids were dropped into the health reform debate by New York Times writer Amanda Cox Tuesday:

In 2006, health care expenses among half the United States population totaled less than $800 per individual, according to the federal Agency for Healthcare Research and Quality.

For openers, that seems entirely reasonable. Would that we could actually care for the citizenry at $800 a pop. Keep reading.

But the expenditures were not uniformly distributed throughout the overall population. Spending was far higher among the elderly, the obese and people who identified themselves as unhealthy. Median spending in those groups totaled $2,300 per individual. Although these patients represent just one-third of the population, they accounted for almost 60 percent of health care spending.

I hate to stomp this nearly dead — oops, bad metaphor — horse even further into its grave, but a lot of us, given the chance to talk to our doctors about aggressive, invasive, often futile end-of-life treatments that are going to make our ends horrific might choose to go home and spend our remaining time with palliative care, at peace. A nifty way to cut that $2,300 back down to $800. But Senator Grassley and others think we should now allow those conversations.

The truth may be too obscured by the cleverly promoted lies, but the issue is about choice. Compassion. Comfort. Peace. Sanity. If anyone could get this truth across to seniors, that one critical segment of reform might still survive. And personally, I’d like to have the option of saving the rest of you taxpayers my $1,500.

via Making Sense of the Health Care Debate – Prescriptions Blog – NYTimes.com.

Health Policy: Is Altruism Dead?

Recently in this space the me-first word was brought up. (It does not abbreviate well.) Might as well say it out loud: health reform could surely be sunk by the Me-Firsters, those who would put personal desires above the greater good, whether those desires are for better pharmaceutical or insurance industry bottom lines or for some corner of personal coverage, senior or otherwise, that might be sacrificed in the future.

I am not above having those desires. My husband and I actually have a tiny bit of stock in a drug company thanks to some mergers and buyouts I do not pretend to understand (I also don’t mess with the family stock portfolio) and thus a decline could cost household income we can ill afford. Plus, I would hate having the excellent care I get from Kaiser (thank you, Medicare) curtailed and would be seriously bummed if suddenly stuck with paying 100% of my post-cancer meds. But if that, or something equally draconian, is what it will take to get health coverage for my currently-uninsured friends, I would like to go on record as supporting whatever we must do to get access for all. This is not noble, just minimally humane.

There are noble people out there, however. They sign up for Teach for America, they volunteer in nursing homes and day care centers and hospice programs, put in long hours at food banks or take to the streets in other, similarly un-chic endeavors.

Re the current health reform brouhaha, there are also noble people, or at the very least altruistic people, all over the country; you just don’t hear a lot about them. On August 19, for example, President Obama urged supporters of health reform to “speak facts and truth” in what he said was a “contest between hope and fear,” and tried once again to refute some of the misrepresentations still widely circulating. His comments were themselves fairly widely circulated. But unless you happened to run across them in this space you would not have known they were made to 140,000 members of faith communities and/or supporters of community-organizing nonprofits. The people of Sojourners, Faith in Action, PICO and other groups that put together the 40 Days for Health Reform conference call are not in it for personal gain; they happen to believe everyone in this country should have access to health care. The next day, Nancy Pelosi held a press conference reiterating her determination to keep a public option in the final health bill. But again, unless you happened to see it here you would not have known the event was sponsored by the San Francisco Interfaith Council with a lot of help from its friends in the San Francisco Organizing Project.

When the religious right goes on a tear against abortion or end-of-life choice (or for that matter, when the religious left goes head-to-head with its ideologically-opposed brothers and sisters) it makes news. When community organizers stage high-profile protests, the same thing happens. What does not make news is the enormous effort made by people of good will just to promote the common good — most recently, health reform.

Some opponents of Obama and his reform bills even have an altruistic bone or two. The reportedly calm, if badly misinformed, Bob Collier, featured in a front page New York Times article August 25, allowed that “we’ve got to do something about those people who can’t get insurance.” He qualified that later: “There has to be a safety net there. But I don’t want that safety net to catch too many people.” Somehow, Mr. Collier wants to separate out the “truly needy” from the “lazy and irresponsible people who play the system” and wouldn’t we all. The Times said that Mr. Collier gets his information from Fox News, Rush Limbaugh and Matt Drudge, none of whom I see as particularly altruistic. I would surely welcome him to True/Slant.

But the people cited above, people in faith communities (including many I disagree with and some I can’t pronounce), progressive nonprofits, community organizing groups and others just roaming the streets being kind, these people seek access to health care for everyone without worrying about who deserves it and who does not. A great many of them worked hard to put Obama in office, and are now working hard for health reform for no reason other than it is the right thing to do for someone else. Might be unrealistic but they keep at it.

My money is still on those people.

Food, Gluten & Lifestyle Changes

I have pretty much done it all, gustatorily or libationally speaking: alcoholism, teenage fad diets (well, a long time ago, but trust me, they are still the same), brief descents into the pit of fast food, and now — Celiac Disease. Celiac Disease, forheavenssakes. It’s genetic. Where has it been all these years? And who, suddenly, are all these other CD people? If you aren’t one, you probably know one.

Dietary seasons, I have come to believe, are like life cycles, the ebbs and flows of some immutable tide built into our systems. As a kid, I didn’t like oysters, an incredible stupidity when my cousins lived a short drive away on the Chesapeake Bay. Bush (the grown-up one) banned broccoli from the White House, although it is surely the side dish to oyster dinners at the tables of the goddesses; perhaps he has now gained understanding. My children, I am sorrowful to admit, grew up on Hamburger Helper and Chuck Wagon Casserole through cycles of their mother’s chaos. And here they are, fitness buffs and gourmet cooks with healthy families, looking fondly back on their culinary childhoods.

I have now entered the Celiac Age. This affliction does not necessarily correspond with the Golden Years, one of the least appealing and often inaccurate descriptives of aging. Celiac Disease is not even a respecter of age. A colleague of mine has a teenage daughter who was so severely celiac as an infant they thought they might lose her before the diagnosis was made. She now sings with a chorus that travels in Europe periodically, so Stewart can translate the diet into seven languages if you need him to.

Recent estimates are that as many as 1 in 100 Americans have CD, with a large percentage of them as yet undiagnosed. I won’t bore you with the symptoms, some of which are quite gastrointestinal and unpleasant; mine were just sudden weight loss and anemia. But what they all translate into is you can’t eat gluten. Gluten is found in wheat, barley, rye and oats and right away you can see donuts are out. CD is an autoimmune disease, so they’re out forever. On the other hand, we should all sign up for something that can be cured through the simple act of eliminating one thing from one’s diet. And if you consider what CD people can eat: meat, fish, vegetables, fruit, ice cream, chocolate candy, meringue cookies, frozen coffee drinks…

Still, we CD people have our moments of pitifulness. My latest was in a posh restaurant up the street at which I was told that everything on the dessert menu contained gluten, because they put gluten even into their ice cream so they can make fancy little plops. They have already received my e-mail about that 1 in 100 business. Actually, being asymptomatic now that I’m taking all these vitamins, I could eat that loaf of bread (it belongs to my husband) over there and never know the difference. But Dr. Yeo would know. Dr. Yeo watches the lab test results and they do not lie. And in truth, I need my bones, which don’t get their calcium if I cheat.

We try not to complain. Still, having given up pies, cakes, cookies, brownies, donuts and sticky buns I did manage to regain the lost weight and another uninvited 4 pounds. There is no justice. Tomorrow: a view of risk/benefit wine drinking.

Pelosi Sticks With Public Option

Speaker Nancy Pelosi at a gathering of interfaith leaders in San Francisco today (Justin Sullivan/Getty)
Speaker Nancy Pelosi at a gathering of interfaith leaders in San Francisco today (Justin Sullivan/Getty)

House Speaker Nancy Pelosi held a press conference in San Francisco this morning at which she reiterated her commitment to a public option in the health reform bill and expressed hope, though with somewhat  lowered optimism, for coverage of end-of-life conversations. She did get in a dig at opponents of the latter: In response to a question about whether voluntary reimbursement for discussion of end-of-life care would stay in the bill, Pelosi said, “You know, the language is almost exactly the same as what the Republicans put into the prescription drug bill.”

The press conference, hosted by the San Francisco Interfaith Council, was an apparent reinforcement of the Democrats’ strategy of  broadening health reform support among members of religious communities. With leaders from the San Francisco Bay Area Christian, Muslim and Jewish communities arrayed behind her, the Speaker made repeated references to health care for all being a moral issue. Responding to the above question, she said, “People of faith, people in healthcare” and others know that “it makes life better if a person has expressed his or her own wishes. The key to this is that it is voluntary; it serves the purpose of saying what is your wish, rather than someone else having to make a decision you might not want. I don’t know what will happen (to the provision); I surely hope it will stay in.”

Pelosi was unequivocal, however, in her response to questions about the public option and to one reporter’s comment that “some Democrats and liberals are frustrated because it seems you are caving in to the far right.” “Is that you?” she repeated, pointing to herself. “The public option is the best way to go. If anybody can come up with a better alternative we’ll consider it. But the President is not backing off. The co-op might work in some states and that’s fine.  There is no way I can pass a bill on health reform without the public option.”

Pelosi was equally emphatic about her intention to retain the 400% of poverty measurement. Hesitantly using the term “seniors,” she said that many people between the ages of 50 and 65 have lost jobs, or may be making just $30,000 to $40,000 per year, and cannot afford needed medical care or prescription drugs. “I believe we have to have the 400% of poverty for them.”

Would the Democrats accept a scaled-down version of health reform? Pelosi repeated her litany of what is needed: reduced costs, improved quality, expanded coverage, affordable care for all; “What are you going to give up? At the end of the day, this is what we must have. And we must have reform of the insurance industry.”

In the small, carefully selected audience assembled at St. James Episcopal Church where her children attended preschool, Pelosi was on her own turf and among friends.  And she was characteristically upbeat. “Have we lost control of the debate? I disagree. I have 218 votes, and expect to have more. I am optimistic, and the President is committed to change.”

Counseling Improves Life's End. Surprise!

Knowledge, care and compassion really do bring peace. Why should this be a surprise? And why should a few strident opponents prevent those approaching life’s end from having this benefit?

A study appearing in today’s Journal of the American Medical Association points out the benefits of end-of-life counseling, although the widespread misinformation loose in the land may have doomed what should be a significant piece of health reform.

As a political uproar rages over end-of-life counseling, a new study finds offering such care to dying cancer patients improves their mood and quality of life.

The study of 322 patients in rural New Hampshire and Vermont also suggests the counseling didn’t discourage people from going to the hospital.

The Senate bill provision axed by Finance Committee chair Charles Grassley would have allowed coverage for conversations with physicians about things like hospice care, advance directives and treatment options.  But to opponents of reform, it was a handy attack mechanism. They enlisted a few standard bearers like former Alaska Gov. Sarah Palin and media darling Rush Limbaugh to twist the issue into menacing “death panels,” and in no time at all Sen. Grassley had his excuse to excise.

Losers in this are all of us. Eventually, 100% of us will die. Aggressive treatment and expensive, futile procedures are common today to that experience; compassion and peace are harder to come by.

In the new study, trained nurses did the counseling with patients and family caregivers using a model based on national guidelines. All the patients in the study had been diagnosed with terminal cancer. Half were assigned to receive usual care. The other half received usual care plus counseling about managing symptoms, communicating with health care providers and finding hospice care.

Patients who got the counseling scored higher on quality of life and mood measures than patients who did not.

Could someone please get this information to Sarah Palin?

Study: End-of-life advice aids terminally ill.