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.

Dementia: stories and sources

The post about dementia sufferers and their tendency to wander (May 6) evoked a host of stories about temporarily lost parents, grandparents, friends and relations. Almost everyone, it seems, has such a story — and unfortunately, those who haven’t may collect one or two in the future.  Reader Cathy Jensen sent a poignant tale of a friend who went wandering in his pajamas during the pre-dawn hours, but was found by the garbage collectors and brought home on the back of their truck. And reader Tom McAfee, en route to see his own mom and hopefully jog memories of children and grandchildren with photos, sent a link to a podcast aired on WNYC in March.

An offbeat idea, the WNYC piece explains, turned out to be a good solution for a nursing home in Germany from which residents were wandering off. Administrators created a bus stop in front of the home, complete with bench and a painted sign for a bus that never came. It provided a place where many wanderers could sit and wait until the urge to go back home, or elsewhere, melted away. Might not work everywhere, but it worked in Dusseldorf.

And reader JTMcKay4 sent, in case you missed them in the comments section, links to the Alzheimer’s Association’s “Safe Return” program and to a source for a long list of related documents. State-specific advance directive forms can also be downloaded, free, from the “Caring Connections” site maintained by the National Hospice and Palliative Care Association site, and this space remains committed to the support of the nonprofit Compassion and Choices, from which forms can also be downloaded.

There is no guarantee against winding up in a memory unit. But a little preparation can go a long way toward helping if the time comes.

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.

Life, love and palliative care

My greatly beloved sister Jane died this morning, a peaceful end to 84 years of a life extraordinarily well lived. For a few days she had been on palliative care.

Palliative care. File that term away for yourself, your parents, your friends and family. It’s the new best thing, even though for centuries it was the old best thing: keep me comfortable and let life come full circle. For centuries we believed that life was a cycle: birth, Stuff, death. Some people’s stuff was better than others, but there was a general agreement that death happened, so it made sense to ease it along when the time came. Usually it didn’t take long. Often, if ease was not to be had, the family doctor invited everyone in briefly to say goodbye, closed the door and administered a shot of morphine.

Then we invented chemotherapy and ventilators and feeding tubes and miracle drugs and adopted the national attitude that one is supposed to live forever. Plus, we invented lawsuits. So dying turned into something horrid and often painful, something one is really not supposed to do. Physician aid-in-dying for the terminally ill became illegal; even talking about it gave Sarah Palin the death panel willies.

My sister Jane was a gifted artist who told me, a few days before she died, that she’d reached the apex of her career because one of her recent paintings was stolen from a show currently on view. (She was also delighted that others were selling well.) She was a remarkable mother, hostess, book-lover, friend, and about the world’s best big sister. The day after our last conversation she had respiratory failure (quit smoking, please, if you haven’t already) and began to die.

Jane was briefly on a ventilator, which I hated as much as she, but one does what needs to be done. Very quickly she moved from that to palliative care. Her husband, four daughters and assorted grandchildren gathered around to sing songs, hold hands, administer foot rubs, report to her remaining two sisters and innumerable friends that all was well.

This is not an argument against miracle drugs or aggressive interventions when appropriate, or even against feeding tubes and ventilators — although if you catch my children approving such things after I conk my head on the curb please remind them of my explicit instructions to the contrary. But it is an argument to confront mortality, complete your advance directives, talk to family and friends about your own wishes no matter how young and immortal you feel yourself to be, support compassionate and humane dying. Advocating for decent health care for the living wouldn’t be a bad way to start.

Palliative care is a valuable new/old thing. So are big sisters like Jane, although they are hard to come by.

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.