Modeling how to die

My remarkable friend Mary died yesterday, after showing us how to do it. Not when, mind you, because she was far too young and energetic — just how. How to question and oppose, to look at options, and eventually to accept the fact that life is fine and finite and go with grace into whatever lies ahead.

Diagnosed with pancreatic cancer barely a year ago, Mary began what would be a studied exploration of traditional and experimental interventions to see if she might wrangle some extra quality time on the planet that she had carefully nurtured throughout her life. Almost as importantly – most importantly to her host of concerned friends – she and her husband Tom signed up on CaringBridge. Immediately, her host of friends also signed on, forming a sort of cybercircle around the family.

As the journey progressed, they would post pictures and notes about their travels and travails, filled with exuberant photos, irrepressible humor and a clear-eyed view of our shared mortality. Friends and relations would sign in with their own comments. Sometimes the latter would include off-beat ideas for something else to fling in the face of the disease; more often they would be notes about how Mary and Tom were brought spiritually into other circles when they couldn’t be physically present. Sometimes they would be long and rambling; more often they would be simple affirmations of how the couple and their family were being held close in so many hearts.

It was an extraordinary gathering. With their three grown children and a few others on site, there was relatively little taking-of-casseroles over these months, though Mary was always the first to show up with a giant jug of homemade chicken soup whenever some affliction struck at my house (and many others.) The cybercircle kept us regularly informed, assured us that we were part of the journey, and served, I believe, as a constant reminder to Mary and Tom that dozens and dozens of their friends were at their virtual side along the way. It helped that both of the central characters – and they were central characters in all the best senses – were thoughtful and eloquent writers.

While preparing for a new round of treatment not long ago, Mary and Tom learned that her tumors had returned with a vengeance. So instead of setting out for one adventure they settled in for another. Hospice was called in, their children gathered even closer. Postings in cyberspace documented the passage of those days, from occasional sunset walks into the nearby hills to readings of comments from friends, as Mary grew weaker, that might win what Tom described as the ultimate honor, “the coveted arched eyebrow.”

As she died, Mary’s family fluffed the pillows and administered “magic drops and potions, all of which helped only sort of.” Afterward, Tom opened the window as a friend had prompted, ” to free her spirit, not that she needed any help from me” and hung their Revolutionary War era ‘Liberty’ flag out front.  And sent a final note into cyberspace for the ever-expanding circle of friends: “All hail, Mary, so very, very full of grace.”

Will Anti-Abortionists Sink Health Reform?

Already the right wing, Catholic officialdom and Sarah Palin have won their battle to make sure that I, and countless other millions, will likely die only after expensive, prolonged, futile, aggressive, undesirable treatment rather than peacefully at home as I choose. Now they want the generations younger to be sure that any accidental, criminal or otherwise unplanned pregnancy results in another unwanted child coming into this overpopulated world. An assault on health reform is their latest battleground. I am careful to say Catholic officialdom, because all of the lay Catholics I know, many of them Good Catholics, support both reproductive and end-of-life choice. I am careful to mention Sarah Palin just to prove I have absolutely no resentment over the fact that whereas I can’t interest publishers in my several excellent book projects, she has a planned first run of 1.5 million on her dashed-off memoir.

But back to the problem at hand. Writing in Tuesday’s New York Times, David Kirkpatrick presents the new scary problem:

As if it were not complicated enough, the debate over health care in Congress is becoming a battlefield in the fight over abortion.

Abortion opponents in both the House and the Senate are seeking to block the millions of middle- and lower-income people who might receive federal insurance subsidies to help them buy health coverage from using the money on plans that cover abortion. And the abortion opponents are getting enough support from moderate Democrats that both sides say the outcome is too close to call. Opponents of abortion cite as precedent a 30-year-old ban on the use of taxpayer money to pay for elective abortions.

Abortion-rights supporters say such a restriction would all but eliminate from the marketplace private plans that cover the procedure, pushing women who have such coverage to give it up. Nearly half of those with employer-sponsored health plans now have policies that cover abortion, according to a study by the Kaiser Family Foundation.

Never mind that Obama has promised that no federal funds will go for elective abortions, and the current policies would remain unchanged, here is a handy opportunity to make points with conservatives and throw a monkey wrench into the works of reform.

Lawmakers pushing the abortion restrictions say they feel the momentum is on their side, especially because the restlessness of other Democratic moderates is making every vote count.At least 31 House Democrats have signed various recent letters to the House speaker, Nancy Pelosi, urging her to allow a vote on a measure to restrict use of the subsidies to pay for abortion, including 25 who joined more than 100 Republicans on a letter delivered Monday.

Representative Bart Stupak of Michigan, a leading Democratic abortion opponent, said he had commitments from 40 Democrats to block the health care bill unless they have a chance to include the restrictions.

So it’s all about halting abortion — maybe — or all about halting reform — maybe — but some of us who simply, desperately, wish better care and a few decent options for our less-advantaged citizens are left to wonder what it’s really all about.

Abortion Fight Complicates Debate on Health Care – Readers’ Comments – NYTimes.com.

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.

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.