Death, Dying & the Grey Zone

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Death-and-dying usually goes with I-don’t-want-to-talk about-it.

Katy Butler wants us to talk about it. She worries, though, about the culture of death-denial, and about the lack of language when we do try to talk. How, for instance, do you say “I don’t want any more surgeries,” without its sounding like “I’m giving up”? Or how do you say “She doesn’t want that treatment” without its seeming you don’t want to keep Mom around? Especially when you know what Mom wants, but the doctors don’t?

Butler, author of the acclaimed 2013 memoir of her parents’ dying years Knocking on Heaven’s Door, spoke at a recent meeting of the San Francisco Bay Area Network for End-of-Life Care. Network members – physicians, teachers, counselors and individuals associated with a wide variety of end-of-life organizations – were clearly in tune with the message: death comes, but few acknowledge or prepare for it. It’s that vast majority, those who don’t want to talk about it, who concern Butler and her audience, including this writer.

Knocking on Heaven’s Door details, in graceful prose, how Butler’s highly educated, physically active, devoted parents managed to get caught up in the brutal reality of dying in the U.S. Her father, a decorated veteran of World War II, suffered years of gradual descent, including having a pacemaker put in when that was mainly a cruel prolongation of suffering; her mother suffered in parallel but very different ways as his caregiver. It is all, Butler fervently believes, unnecessary suffering. She quotes her father as he declined:

“I don’t know who I am any more.” Another year or so later: “I’m not going to get better.” And still later, “I’m living too long.”

Butler speaks of this in terms of “the Grey Zone.” Whereas most of us want simple, black-and-white answers – “This pill will fix everything;” “you can expect to live another four to six months” – in truth, the time before dying is the Grey Zone. And whereas the Grey Zone used to be short and swift, today – thanks to modern medicine and technology – it is forever expanding.

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Everyone will enter the Grey Zone sooner or later. You, reader of these words, and I, writer. You may ski into a tree, or get hit by a truck tomorrow, causing your Grey Zone to be little more than a blur; I could have a major stroke or aneurism and be at the crematorium tomorrow. But in all probability, our Grey Zones will come in bits and pieces, and will extend for many months or years. They are likely to include a few hospital stays for broken bones or debilitating illnesses, chemotherapy for cancer, possible time on a ventilator, multiple medications with occasional unpleasant side effects, outpatient and inpatient experiences with doctors we have never seen before and encounters with medical technology yet to come.

Butler advocates shifting our Grey Zones away from the relentless need to prolong life at all costs to the consideration of what really makes life worth living. We would do well, she says, to be aware of when “that space between active living and dying” should shift from Cure to Care: to easing our way from good life into good death.

Butler’s understanding of these issues come from witnessing her father’s long, anguished journey through a Grey Zone of many years and her mother’s steadfast refusal to allow a similar prolonged struggle to mark the end of her own life.

Quite apart from the expanding battles to legalize medically hastened dying, the need to acknowledge the Grey Zone is equally urgent. Most of us would opt to shorten that space between active living and dying, or at the very least to move gracefully from good life into good death.

It can happen, but not without paying attention. Reading Butler’s book, with an eye to how you would like to knock on heaven’s door yourself, is a good way to start.

Because looking realistically ahead makes infinitely more sense than zoning out.

Immortality in the ethernet

Is it possible ever to die in cyberspace?

I was recently urged by Facebook to do something obtuse because my friend Josephine (pseudonymed for very good reason here) is doing it and knows I will love it. Hmm. There’s just one small problem here: Josephine has been dead for well over a year. You’d think Facebook might have noticed.

Yet, there she is, smiling her gentle smile, alive and welcoming to the Facebook friends who surely wish it were so. What to do? Ask her daughters to wipe their mom off the pages of the Facebook planet? Bookmark the page for the cheer it brings? Or try to ignore it lest it become spooky like those answering machine voices out of the past? I’m still pondering.

On the other hand, I more or less died to the cyberworld myself about six weeks ago. This was not an intentional — or even dignified — death. As a matter of fact, I had contracted not that long ago with my very alive, cyber-efficient friend Ryan to help me close my Blogspot page, fancy up this one, figure out all these widgety details and generally add interest and gravitas to my presence in cyberspace. For a while, progress was made toward all that. But life, and a manuscript, intervened.

Having promised the manuscript of my one-day book Perilous Times: An inside look at abortion before — and after Roe v Wade to the nice folks at YBK Publshing by September 1, I suddenly, seriously needed to finish the thing.  And the only way I could figure out how to accomplish such a feat — we’re talking 1,500 words a day with a few last-minute interviews tossed in — was just to drop out of cyberspace and into computerland until it was done. So my long-dormant Blogspot blog, some day destined to die, and the fits & starts of this WordPress incarnation of Boomers & Beyond have been hanging out, forlorn and ignored, lo these many weeks.

This sorry state of affairs is at least not quite as bad as the state of  my late lamented paid gig with True/Slant.com. My True/Slant page has been hanging, frozen, in space ever since Forbes bought the site & I declined to write for Forbes (full disclosure: they weren’t begging me anyway) more than two years ago. It’s confounding at best to try to do anything (“Follow me” indeed) or go anywhere else on True/Slant; that page is dying an undignified death indeed. Not to mention the fact that anyone stumbling across it could reasonably think, “Poor dear, she hasn’t had a new thought in 782 days”…. since the only thing moving on the page is the tabulator that says how many days it’s been since this post.

The manuscript is done. The book will happen. Life has resumed. And this page will now get back to the business of offering thoughts about life, health and the pursuit of justice of interest to boomers, post-boomers and perhaps miscellaneous others. Thanks for dropping by.

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facebook engancha (Photo credit: Wikipedia)

On being treated to death – Part II

Is there a fate worse than death? Yes. In the U.S., often it is the fate of dying slowly: aggressively treated, over-treated and worn down by the system until that fate has made death truly a blessed relief.

Deborah Wright, an ordained Presbyterian minister and writer now working in secular fields while simultaneously serving as personal pastor to many, forwarded an article that proves out the fate-worse-than-death highlighted in this and recent other articles (see June 25 post below.) The fact that stands out, she comments, is that “the length of time we use palliative care services is growing shorter — because we start it too late.”

We start palliative care too late, we treat too aggressively and too long. The opening story in AP writer Marilynn Marchione’s thoughtful, poignant article just published in Daily Finance serves as a classic example:

The doctors finally let Rosaria Vandenberg go home.

For the first time in months, she was able to touch her 2-year-old daughter who had been afraid of the tubes and machines in the hospital. The little girl climbed up onto her mother’s bed, surrounded by family photos, toys and the comfort of home. They shared one last tender moment together before Vandenberg slipped back into unconsciousness.

Vandenberg, 32, died the next day.

That precious time at home could have come sooner if the family had known how to talk about alternatives to aggressive treatment, said Vandenberg’s sister-in-law, Alexandra Drane.

Instead, Vandenberg, a pharmacist in Franklin, Mass., had endured two surgeries, chemotherapy and radiation for an incurable brain tumor before she died in July 2004.

“We would have had a very different discussion about that second surgery and chemotherapy. We might have just taken her home and stuck her in a beautiful chair outside under the sun and let her gorgeous little daughter play around her — not just torture her” in the hospital, Drane said.

Marchione tells other stories of patients who might have had far more peaceful final days — and of patients who chose extensive, aggressive or experimental treatment for a variety of reasons. It should be the individual’s choice. But the reality is that discussion of palliative care or hospice care (there is a difference: hospice involves declining further treatment; with the newer “palliative care” concept some therapies may be continued) simply doesn’t happen until too late. If it happened sooner, many of us — likely including Rosaria Vandenberg — would choose hospice care over aggressive end-of-life treatment.  But physicians are too busy talking treatment, and patients have not considered their other choices. Comfort and peace lose to the system.

An article posted today on the website of the National Hospice and Palliative Care Organization points the finger in the right direction, right at you and me. If we took the time and energy to write our advance directives, and talk them over with family and friends, millions of days of suffering and millions of wasted dollars would be saved.

Recent media coverage on the challenges patients and families face with overtreatment of a life-limiting illness brings the issues of hospice and palliative care and advance care planning to public attention.

“It’s important to remember that quality of life and a patient’s personal wishes, beliefs and values must be a factor when making care decisions brought about by a serious or terminal illness,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization.

“Discussions helping patients and families understand the many benefits of hospice and palliative care must be more common and held long before a family faces a medical crisis,” Schumacher added.

Advance care planning—which includes completing a living will and appointing a healthcare proxy—is somewhat like planning a road trip to an unfamiliar destination.  Very few people would expect to get to a destination safely and comfortably without having a well-thought-out map in hand.   Yet, it’s estimated that 70 percent of Americans have not completed a living will.

  • A living will charts the course for your healthcare, letting your family and health care providers know what procedures and treatments you would want provided to you—and under what conditions.
  • A healthcare proxy or healthcare power of attorney form, allows you to choose someone you trust to take charge of your healthcare decisions in case you are unable to make those decisions yourself.
  • Advance directives can be changed as an individual’s situation or wishes change.

Still, you and I put it off. Or you may be putting it off, at least, and if so you are taking an absurdly unnecessary risk. You could, instead, download free forms, fill them out and avoid that risk.

Deborah Wright has shepherded countless friends and family members through their final days, and knows what a blessing hospice and palliative care can be. Problem is, though, “we start it too late.”

Americans are treated, and overtreated, to death – DailyFinance.

Life: does longevity trump quality?

“We have to get out of the way,” she said; “make room for other, new people on the planet.” Accomplished author/editor Cyra McFadden, at a recent dinner party, was talking about a group of women scientist friends’ excitement over discoveries they have made which show promise of extending life a fraction longer. Cyra was in fierce, though silent, disagreement.

It may be time for those of us who disagree with the rampant prolong-life-at-all-costs theories  to stop being silent.

Americans are, in fact (as reported in Epoch Times below, and elsewhere) living longer all the time. Sometimes that’s just fine, especially if we’re in reasonable health. But what if we’re not? What if we’d just as soon be getting on with whatever follows this temporary time on earth? Millions and millions of people are living for hours, days or extended months and years in circumstances they would not choose simply because we have created a culture that says we must be kept alive no matter what.

Average life expectancy continues to increase, and today’s older Americans enjoy better health and financial security than any previous generation. Key trends are reported in “Older Americans 2008: Key Indicators of Well-Being,” a unique, comprehensive look at aging in the United States from the Federal Interagency Forum on Aging-Related Statistics.

“This report comes at a critical time,” according to Edward Sondik, Ph.D., director of the National Center for Health Statistics. “As the baby boomers age and America’s older population grows larger and more diverse, community leaders, policymakers, and researchers have an even greater need for reliable data to understand where older Americans stand today and what they may face tomorrow.”

Where do we stand right now? Well, the same source that says we’re living longer and enjoying better health and financial security (hmmmm on the financial security business) reveals that Americans are “engaging in regular leisure time physical activity” on these levels: ages 45-64: 30%; ages 75-84: 20%; geezers 85 and over: 10%. Hello? Better health and financial security, just no leisure time physical activity? Could it bear some relationship to obesity factors in the same data: 30+% for men, 40+% for women?

Does living well need to be assessed in the compulsion to live long? Why not? Everyone should have the right to live at whatever weight and whatever level of inaction he or she chooses. But the system is weighted toward keeping us alive under all conditions, and bucking the system is not easy. A poignant, wrenching tale of her father’s slow decline and death — and her mother’s refusal to go down that same path — was recently told by California writer/teacher Katy Butler in the New York Times Sunday Magazine.

Almost without their consent, Butler’s gifted, educated parents had their late years altered to match the system’s preferences:

They signed living wills and durable power-of-attorney documents for health care. My mother, who watched friends die slowly of cancer, had an underlined copy of the Hemlock Society’s “Final Exit” in her bookcase. Even so, I watched them lose control of their lives to a set of perverse financial incentives — for cardiologists, hospitals and especially the manufacturers of advanced medical devices — skewed to promote maximum treatment. At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims.

Given the limitless sources of victimization floating around, we should not have to add just-try-to-keep-them-alive-forever health care to the list.

My husband and I, having long ago signed advance directives with additional specific issues sheets (“If this happens, do that; if that happens, don’t do this,” etc) recently got them out and talked things over again, a very good thing to do for EVERYbody over 18. We will add dementia provisions to the existing documents while we can remember to do that (the closest you can come to avoid being warehoused in a memory-loss facility for umpteen years.) We are clear, and our friends and family understand, about having no interest in hanging onto life in a greatly diminished state if such an opportunity presents itself; for increasing thousands, it presents itself every day.

All this being said, there’s still a reasonable chance that I’ll be out of town one day when I’m in my 80s (which aren’t that far off), get wiped out by a speeding cyclist and picked up in a seriously mangled state by the paramedics, taken to a hospital that’s not Kaiser (which has all my directives on file,) miraculously brought into some heavily-sedated state of being because the hospital doesn’t consult Kaiser or the living will registry (which also has my directives) and kept alive by assorted mechanisms. By the time my husband or children get there to insist everything be unplugged — which of course will involve long hours and possibly court action — hundreds of thousands of dollars will have been needlessly spent.

I consider myself a highly valuable member of society, and my life a gift from God. But would those dollars not be better spent on a few kids needing specialized care?

Epoch Times – Americans Are Living Longer, According to Federal Report.

Latest boomer gadget: tombstone microchips

Microchip e microciop

Image by Un ragazzo chiamato Bi via Flickr

This may be one step farther than some of us want to go. But for those seeking to live, somehow, forever, the Canwest News Service reports on a new e-gimmick on the market and apparently targeting the boomer generation. There are several more paragraphs in writer Misty Harris‘ report, but this space suggests that the following, and particularly the last sentence, cover everything you really need to know.

Ensuring virtual life after death, new microchip-enabled headstones allow the Me Generation to share their stories from the grave, with passersby simply swiping markers with a cellphone to retrieve biographical details — everything from the deceased’s political beliefs to their favourite recipes.

“My wife and I had just lost relatives and found it so underwhelming, in a sense, to know that these people had contributed so much and yet their lives were being summed up with just names and dates,” says John Bottorff, founder of Objecs, the Arizona company behind the RosettaStone grave markers.

The palm-sized tablets can be mounted to existing headstones or installed on new ones. Each is engraved with custom symbols representing the deceased’s life — an Rx for a pharmacist, for example, or a sheriff’s star for a police officer — and contains a Near Field Communications radio-frequency identification tag, which allows biographical data to be loaded onto any NFC-enabled phone with the wave of a hand (NFC is expected to be standard on new mobile phones in North America by 2012).

A unique web ID is also engraved so people without NFC can raise the dead — or at least their personal histories — on any computer.

As early as 2015, seniors will outnumber children for the first time in Canadian history, while the number of centenarians is projected to triple — perhaps even quadruple — by 2036.

For end-trepreneurs, this represents a killer opportunity.

Microchip tombstones latest boomer gadget.

Illness, loss and words of comfort

New York Times Personal Health writer Jane Brody last week noted another chapter in the wrenching drama she has shared with readers, first with the cancer diagnosis of her husband, lyricist Richard Engquist, and later following his death on March 18. In the new essay Brody tells of condolences received from friends and strangers. The writing, she says, has been therapeutic.

But one piece of therapy I never expected was the feedback from readers, friends and acquaintances: many hundreds of condolence letters, e-mail messages and comments on The New York Times’s Well blog.

Whether in a card, note, letter, phone message, hug or pat on the shoulder, some people seem to know instinctively how to show they care and will remember the deceased. What stands out most in these messages is their deeply personal quality. People who knew my husband in various walks of life (especially his advocacy for his beloved Prospect Park and his career as a writer for the musical theater) saw him in ways that had escaped me, because I was too close to have their perspective. By sharing these details, they have rounded out my memories of a life shared and separate from his — memories I will cherish for the rest of my life.

Brody gives examples of the many messages about her husband that brought comfort, and offers thanks for the fact that those unwanted messages — “Surely you’ll meet someone else;” “I know how you feel, my dog died last year” — had not arrived.

There’s one thing often of great comfort to someone who’s suffered a loss that Brody doesn’t include and that doesn’t occur to everyone. It’s the reminder of what the survivor meant to the now-deceased, one of the easiest ways to write a quick, meaningful condolence note. I learned it many years ago from someone I never met. Her Army officer brother, to whom I’d been pinned (an emblem of commitment in those olden days; I’ve no idea if such customs still exist) was killed in Korea. I could not travel across the country for the funeral, all of the sympathy and support was rightfully going to his family, but I felt bereft and unconsoled. Then I got a two-line note. “Dave said you could always make him smile,” she wrote; “and that will always make us smile.”

Thoughtful people have reinforced the knowledge of how much such a thought can mean. “Your mother was so proud of you because —.” Happily, in this fast-moving world the snail-mail sympathy note seems to survive. And I suppose even the e-mail condolence is better than nothing. If you’re stumped for a note you could be writing, try it this way.

Patients fight hospitals (& not just Catholic hospitals) for proper care

“Suppose I wind up being taken to a hospital,” said the lady with the penetrating blue eyes and a lovely, long braid over her shoulder. “How can I keep them from doing all those things I don’t want — ventilators, feeding tubes…?”

The lady with the lush braid was among a small group of retirement community residents with whom I spoke yesterday about end of life choices. None of them fear death. All of them fear aggressive, unwanted treatment. A colleague and I had been invited to talk with them about documents (advance directives, POLST forms, etc) and legal measures that can help insure a compassionate end. But the distressing reality is that there are no guarantees.

This is where we are with health care: patients having to fight against doctors, hospitals, systems — and directives from Bishops — for the right to die in peace.

A recent Kaiser Health News article (KHN is a publication of the Henry J. Kaiser Family Foundation and unrelated to Kaiser Permanente) cited problems arising from directives to Catholic hospitals about a variety of issues. The directives, issued in November by the U.S. Conference of Catholic Bishops, changed the policy on feeding tubes, for example, from “presumption in favor of”  to an “obligation.”

“This obligation,” the bishops said, “extends to patients in chronic and presumably irreversible conditions,” such as persistent vegetative state, who might live for many years if given such care. A feeding tube is not required, however, if it wouldn’t prolong life, would be “excessively burdensome for the patient,” or would “cause significant physical discomfort.”The directive raises fresh questions about the ability of patients to have their end-of-life treatment wishes honored — and whether and how a health care provider should comply with lawful requests not consistent with the provider’s religious views. Hospitals and nursing homes do not have to comply with requests that are “contrary to Catholic moral teaching,” according to longstanding policy that, as in the case of the revised directive, applies to non-Catholic patients as well.

As the women in our group yesterday understand, you can wind up with unwanted treatment in all sorts of circumstances, not just when you’re dying.

Dr. Lachlan Forrow, a Harvard University medical ethicist and palliative care specialist, expressed strong concern about the new policy, stressing its potentially broad scope. “That gets to be a very, very large number of people,” said Forrow, who heads a panel developing recommendations for the state of Massachusetts on end-of-life care.

(A)ccording to Catholic officials and outside experts, the directive may well apply to a wider range of patients, those that it describes as having “chronic and presumably irreversible conditions,” though the organization representing Catholic health facilities downplays the impact. Experts say this affected group could include those with massive strokes, advanced Alzheimer’s disease, traumatic brain injury and Lou Gehrig’s Disease.

If a patient or family didn’t want a feeding tube “and the reason they don’t want it is they basically want to die, then the Catholic institution would explain to them they can’t cooperate with that and they would have to go to another institution,” said the Rev. Thomas G. Weinandy, executive director for doctrine at the bishops’ conference, who helped draft the policy.

Weinandy said “obviously the public should know what the directives say,” and patients and relatives “can easily download the directives or get a copy.”

Oh, sure. The EMT people are loading mom into the ambulance, and you ask them to wait until you download a few pages of papal edicts.

In the days before she died two weeks ago (in a non-Catholic hospital) my sister Jane occasionally showed signs that, though sleeping, she might be experiencing pain. My niece, who was keeping round-the-clock watch over her mother, more than once asked the attending physician for additional pain medication and was told, in a “There, there now, dear” voice that “We can’t hasten!!” My niece is a tenured law school professor.

Doctors make a lot of fuss about that “First, do no harm” business in the Hippocratic oath. Is withholding pain medication because it might cause death a few hours sooner than later doing no harm? Is inflicting painful, unwanted and unwarranted interventions for some obscure religious reason doing no harm?

Catholic Directive May Thwart End-Of-Life Wishes – Kaiser Health News.