End-of-year look at end-of-life issues

Two end-of-year stories offer stark insights into end-of-life issues in the U.S., one from a purely financial perspective, the other purely about compassion. Between the two, the conflicted American way of dying comes into focus.

First the finance. The Wall Street Journal of December 30 features a front page story by Laura Saunders about wealthy families coming to grips with the disappearance, thanks to a quirk of Congress, of the estate tax beginning January 1, 2010. It will only disappear for a year, and in 2011 it will return at a higher rate with lower exemption. For those approximately 5,500 super-rich taxpayers to whom this tax applies, a lot of money is at stake. Presumably if a member of one of these families is now near death every possible measure will be taken to keep him or her alive into the new year and presumably that will be done for the best of reasons. But imagine the struggles involved if someone is near death this time next year, and his or her heirs stand to benefit in the millions if that death happens before January 1st rather than soon after. An altogether new meaning will have to be added to “letting go.” Not something one really wants to think through.

But the last two sentences of the WSJ article demonstrate how extensively the scenario is indeed being thought through, not from the heir’s point of view but from the soon-to-be-departed:

The situation is causing at least one person to add the prospect of euthanasia to his estate-planning mix, according to Mr. (Andrew) Katzenstein (a lawyer with) Proskauer Rose (LLP in Los Angeles.) An elderly, infirm client of his recently asked whether undergoing euthanasia next year in Holland, where it’s legal, might allow his estate to dodge the tax.

His answer: Yes.

However hard we might try to eliminate costs (and cost/benefit ratios) from considerations of end-of-life care and decision-making, they are here to stay and sure to remain complex. Another complexity — and this one should not be as difficult as it continues to be — surrounds the subject of palliative care. Palliative care is simply comfort care. It means, do everything possible to insure that a dying person might go about his or her dying with as little pain and anguish as humanly, medically possible.  A long, careful look into the issue is in the New York Times most recent “Months to Live” series article, “Hard Choice for a Comfortable Death” by health writer Anemona Hartocollis.

In almost every room people were sleeping, but not like babies. This was not the carefree sleep that would restore them to rise and shine for another day. It was the sleep before — and sometimes until — death.

In some of the rooms in the hospice unit at Franklin Hospital, in Valley Stream on Long Island, the patients were sleeping because their organs were shutting down, the natural process of death by disease. But at least one patient had been rendered unconscious by strong drugs.

The patient, Leo Oltzik, an 88-year-old man with dementia, congestive heart failure and kidney problems, was brought from home by his wife and son, who were distressed to see him agitated, jumping out of bed and ripping off his clothes. Now he was sleeping soundly with his mouth wide open.

“Obviously, he’s much different than he was when he came in,” Dr. Edward Halbridge, the hospice medical director, told Mr. Oltzik’s wife. “He’s calm, he’s quiet.”

Mr. Oltzik’s life would end not with a bang, but with the drip, drip, drip of an IV drug that put him into a slumber from which he would never awaken. That drug, lorazepam, is a strong sedative. Mr. Oltzik was also receiving morphine, to kill pain. This combination can slow breathing and heart rate, and may make it impossible for the patient to eat or drink. In so doing, it can hasten death.

Mr. Oltzik received what some doctors call palliative sedation and others less euphemistically call terminal sedation. While the national health coverage debate has been roiled by questions of whether the government should be paying for end-of-life counseling, physicians like Dr. Halbridge, in consultations with patients or their families, are routinely making tough decisions about the best way to die.

Writer Hartocollis covers in thoughtful detail the long, sometimes conflicted process through which the medical team and the patient’s family arrived at his eventual, peaceful death. The article looks at the multiplicity of issues that cry out for reasoned public dialogue — palliative care, physician aid in dying, end-of-life choice, family decision-making — that have been raised on this page in recent months and will be back again. It’s a story worth reading in full.

And meanwhile, the beginning of the year is a fine time to get your advance directives and other documents completed and to have those conversations with friends and loved ones that keep you from becoming another Terri Schiavo. Getting this done is one great way to put dying behind you and go about the business of living for a happy new year.

Months to Live – Hard Choice for a Comfortable Death – Sedation – Series – NYTimes.com.

Thank-you notes come due

E-mails are efficient, text messages — God help us — are here to stay, but the handwritten thank-you note is not dead yet. If Geoffrey Parker and I have anything to do with it, furthermore, the handwritten note will survive and prosper. Parker’s commitment to this disappearing art form was outlined in a Wall Street Journal report by Cheryl Lu-Lien Tan. If you want to make points with gift-givers, you might note his words of wisdom.

During the holidays, Geoffrey Parker, branding consultant for Parker Pen Co. and great-grandson of its founder, George S. Parker, is careful not to overlook what he calls a ‘critical’ aspect of the gift-giving season: thank-you notes.

‘It’s common courtesy,’ he says. ‘If someone does something for me, I need to acknowledge that.’ Mr. Parker sometimes thanks a gift-giver or party host with a phone call, email or text message. But he believes that these modes are ‘insufficient’ and always follows up with a handwritten message. ‘As these modern electronic devices become more common and overused, they become cheap,’ he says.

And more power to Mr. Parker. A phone call or an e-mail message might acknowledge your gratitude, but a handwritten note has soul. Quick: think of a piece of paper with words written on it, addressed to you, by someone of your acquaintance. Some little shred ties those words to that person, doesn’t it? Handwriting used to serve that purpose.

A quick check with several teacher friends turned up no one who could recall the time when cursive was routinely taught throughout the fourth grade year (though you can now learn to write online.) By fourth grade today every student on the planet knows how to text in abbreviated expletives. But nothing conveys a message — expletive or smiley face — like a handwritten note. You will be forgiven if you use a ball point pen, though Parker prefers a fountain pen with a broad nib and fountain pens can emote better than anything else. The flourish that such an implement can create — think John Hancock before he got commercialized — used to be able to paint eloquent pictures in words. My father (broad nib, dark blue ink) favored x’s at the end of his sentences, but when he left off with a dash you knew you had done something fine.

Today, a thank-you note is also an investment. But go ahead, spend the 44 cents, drop a line. Your appreciation will be appreciated.

The cost of trying to live forever

Why is this not an encouraging word? In a front page article, part of a Months to Live series,  New York Times writer Reed Abelson leads with a glimpse into the Ronald Reagan U.C.L.A. Medical Center, a top-rated academic hospital noted for extensive, aggressive end-of-life care (and very high costs):

‘If you come into this hospital, we’re not going to let you die,’ said Dr. David T. Feinberg, the hospital system’s chief executive.

Feinberg’s commitment to “success” might be admirable, but the statement is patently false; people die at U.C.L.A. Medical Center. This is what people do: we die. Until this culture gets its act together on that subject our health care system — whatever the reform bill eventually looks like — will continue to flounder.

Difficult as it is to talk dollars when you’re talking lives, the issue of cost has to be factored in. There are only so many dollars, and there are countless lives needing care those dollars can buy: infants, children, young adults, boomers, elderly. In each of those care-needing groups, some die.  Feinberg’s philosophy somewhere has to encounter reality.

…that ethos (keep testing, treating, keeping alive no matter what) has made the medical center a prime target for critics in the Obama administration and elsewhere who talk about how much money the nation wastes on needless tests and futile procedures. They like to note that U.C.L.A. is perennially near the top of widely cited data, compiled by researchers at Dartmouth, ranking medical centers that spend the most on end-of-life care but seem to have no better results than hospitals spending much less.

Listening to the critics, Dr. J. Thomas Rosenthal, the chief medical officer of the U.C.L.A. Health System, says his hospital has started re-examining its high-intensity approach to medicine. But the more U.C.L.A.’s doctors study the issue, the more they recognize a difficult truth: It can be hard, sometimes impossible, to know which critically ill patients will benefit and which will not.

That distinction tends to get lost in the Dartmouth end-of-life analysis, which considers only the costs of treating patients who have died. Remarkably, it pays no attention to the ones who survive.

No one, not the doctors, not the patients, not the best crystal ball reader around can guarantee that this patient will die or that patient will live. If there is a good chance a patient will survive — and it would be nice to add “with a reasonable quality of life” here — everything possible, and affordable, certainly should be done. Abelson’s carefully balanced article details the arguments for going to extraordinary lengths to save lives, as well as the arguments to draw the line on end-of-life expenses.

According to Dartmouth, Medicare pays about $50,000 during a patient’s last six months of care by U.C.L.A., where patients may be seen by dozens of different specialists and spend weeks in the hospital before they die.

By contrast, the figure is about $25,000 at the Mayo Clinic in Rochester, Minn., where doctors closely coordinate care, are slow to bring in specialists and aim to avoid expensive treatments that offer little or no benefit to a patient.

“One of them costs twice as much as the other, and I can tell you that we have no idea what we’re getting in exchange for the extra $25,000 a year at U.C.L.A. Medical,” Peter R. Orszag, the White House budget director and a disciple of the Dartmouth data, has noted. “We can no longer afford an overall health care system in which the thought is more is always better, because it’s not.”

By some estimates, the country could save $700 billion a year if hospitals like U.C.L.A. behaved more like Mayo. High medical bills for Medicare patients’ final year of life account for about a quarter of the program’s total spending.

So…. to spend that $25,000/$50,000 or not to spend? Unless we the people somehow face the reality that living forever is not a human option, the dilemma will continue.

The benefits of coming to terms with non-optional dying could be huge. We could focus on quality living. On palliative care and hospice care and end-of-life peace and comfort. Advances in palliative care now make it possible for most of us to spend final months at home (or in special hospital rooms), in comfort, surrounded by loved ones; given the choice, would you prefer a few weeks or months in a bright-lit sterile room with a lot of tubes and wires keeping you alive? U.C.L.A. now offers the choice of palliative care. Not everyone in charge, however, is convinced.

Dr. Bruce Ferrell, who helps lead the palliative care program, recalls a patient two years ago who got a liver transplant but developed serious complications afterward and remained in the hospital for a year. “He had never, ever been told that he would have to live with a ventilator and dialysis,” Dr. Ferrell said. “He was never told that this is as good as it’s going to get.”

Dr. Ferrell talked with the patient about whether he might want to leave the intensive-care unit to go home and receive hospice care. But when the surgeon overseeing the case found out, he was furious.

“We do not use the h-word” — hospice — “on my patients,” the surgeon told Dr. Ferrell. “Don’t ever come back.”

The patient chose to leave.

But lately, Dr. Ferrell says, more of the transplant surgeons appreciate the value of what he is trying to do.

“We’re not the bad guys,” he said. “We offer options.”

We the people would do well to quit being the bad guys. To quit behaving as if death were always preventable. We could learn about the options to spending all those thousands of dollars on exhaustive, often futile treatment. We could talk about what we would or would not want for ourselves, write things down, make choices.

If more of us would do that for ourselves, the House and Senate wouldn’t have such a time trying to do it for us.

Channeling Brooke Astor: Could this story be yours?

It’s hard to feel sorry for Anthony Marshall, Brooke Astor’s kid. Okay, he’s 85, but he’s still her kid. According to current reports, Marshall managed to appropriate from his declining mother, before she died at 105, a few zillion dollars that weren’t rightfully his. This despite all the zillions that were. And despite the fact that he had lived quite a respectable life as a diplomat, manager of the family estate, member of significant boards and producer of plays. The judge who sentenced him to one to three years for his transgressions said he believed Mrs. Astor loved her son and was loved by him. But it came to one pretty sad end.

It was a finale — some would say a sobering, Shakespearean finale — to a case that had mushroomed from a family feud over her care into a five-month trial for “grand theft Astor,” as one prosecutor described it on Monday, “a six-year crime spree involving a series of larcenies.”

In the back-story, heard sobbing in the courtroom or often shown helping him through doors and into cars, is Marshall’s wife Charlene. Nobody ever said Mrs. Astor loved Charlene, or vice versa. But the son and his wife come off as money-grabbing ultra-rich ingrates, who neglected, mistreated and swindled the beloved aging philanthropist.

Fascinating as such tales of wealth and intrigue inevitably are, several legitimate questions nag:  When did everything turn sour? When did a son who presumably loved and respected his mother forget about doing that? When did a mother who presumably loved and provided for her son become preyed upon rather than protected? And could the finale have been different?

Never having been on intimate terms with the Astors or the Marshalls, I can’t answer for them. But countless unspectacular versions of filial love gone wrong or lower-profile cases of neglected aging parents  are played out every day, and similar questions nag.  Could some open dialogue, before the parties hit their 80s and their 100s, have made a difference? Could closer attention, earlier on, to the complexities of health care  — and who would be in charge — have made the last years better for the aging parent? Were there wounds that could have been healed, plans that could have been made before dementia and calamity struck?

There frequently are. It’s easier, too, if you don’t have a zillion dollars.

Anthony Marshall Gets Prison for Stealing From Brooke Astor – NYTimes.com.

Taking on MoveOn

I am a certified MoveOn supporter. Though I had to opt out of the e-feeds because my Inbox overfloweth, I have sent money, forwarded news, heeded their messages.

But enough is enough. They are pushing for measures we should have, but won’t get today. I am coming down on the side of those who say just get us a bill. In the words of Washington Post editorial writer E. J. Dionne — in a column today aptly titled Don’t scream: organize:

Instead of trying to derail the process – exactly what conservative opponents want to do – those on the left dissatisfied with the Senate bill should focus their efforts over the next few weeks on getting as many fixes into it as they can.

What we have in the Senate bill is a mishmash of stuff we didn’t want, along with the absence of stuff we did. Ridiculous obstacles to a woman’s right to choose to have an abortion — write two checks every month just so Ben Nelson can get benefits in perpetuity for Nebraska and maybe we’ll satisfy the U.S. Conference of Catholic Bishops in the bargain? — piled on top of other obstacles for the poor and benefits for the rich (read: Big Pharma.) But come on, folks, it’s a bill. If we get a bill, it can be improved. If we fail, it’ll be another generation of a punitive, non-working “system” of health care before we get this far again. By then there will be other Joe Liebermans eager to grab the spotlight and claim the power to derail every other beneficial detail. I’ll be dead, but I plan to haunt you.

Dionne points out that the House bill is superior, the two bills will now have to be reconciled, and there will be future opportunities to build on this beginning.

Enactment of a single bill will not mark the end of the struggle. It will open a series of new opportunities. It’s a lot easier to improve a system premised on the idea that everyone should have health coverage than to create such a system in the first place. Better to take a victory and build on it than to label victory as defeat.

Successful political movements prosper on the confidence that they can sustain themselves over time so they can finish tomorrow what they start today. At this moment, rage is understandable, but hope is what’s necessary.

Progressives – don’t scream: organize.

Needless pain, senseless dying

His wife is dying. If she’s lucky, she will be dead before you read this. If he has his way, she will hang on — for what purpose I am not sure, since she is now barely conscious and in terrible pain — but, in his words, she is “not ready to close the curtain.” He cannot bring himself to say the D-word out loud.

Joe — not his real name — called me last night. I am not sure for what purpose the call was either, except he’s quite understandably angry and I was a handy person to be angry with for a while. His wife was a supporter of an organization I serve, as a board member and a one-on-one client volunteer. Compassion and Choices N.CA is a chapter of the national Compassion and Choices nonprofit organization. We advocate for everyone’s right to a humane and compassionate death, which Cathy — not her real name — is not having. We also advocate for changing the laws that ban physician aid in dying, and the right of a terminally ill, mentally competent adult to hasten his or her own dying if living a few more days or weeks becomes unbearable. Cathy’s life is past unbearable by now.

After suffering for several months with back pain, trying chiropractic sessions and over-the-counter medications, Cathy wound up in an emergency room in mid-November, almost accidentally having an MRI that showed the tumors throughout her body. Lung cancer had metastasized to her brain, spine and almost everywhere else. THIS IS A GOOD TIME TO CALL HOSPICE. Joe encouraged Cathy to fight on. She is in terrible pain, and worse than the pain, Joe says, is the difficulty she has breathing, which keeps her from sleeping because she feels like she’s drowning — “but she doesn’t scream out, exactly…” he said. I wonder how heroic she must need to be for him. She is down to 89 pounds.

As gently as possible, I suggested he call one of several excellent local hospice organizations which I’d earlier mentioned to Cathy’s friend who connected us. As a matter of fact, Joe said, he had already called one of them, they’d been over, he was impressed with them. I was almost beginning to breathe myself when he added that he still wanted to talk with the other I had mentioned (Big mistake. Why did I do that?) and had made an appointment with them to come after the weekend. I suggested they would not mind coming on a weekend.

Denial is a perfectly legal way to deal with things, but it should have its limits. If your spouse, partner, child, friend or parent is terminally ill and in unremitting pain, hospice can be the kindest word you have ever spoken. Hospice care IS NOT about “giving up,” or about dying. It is about comfort, pain management, living, peace. It is entirely possible to sign up for hospice care, change your mind and start some newly-discovered intervention later if one should be found. Probably at some point, you will say the D-word out loud. It won’t kill you.

Joe and Cathy are highly educated, financially well off, widely known and admired. He spoke of moving her to their second home nearby where she could enjoy the ocean, and perhaps take time “to say goodbye to her friends when she feels a little better.”

Get smarter before the New Year? Sure you can

Scientific proof is limited. But this space, in the interest of staving off dementia while smartening up the general population, has been investigating recent reports on benefits of brain exercise. (One recent report in this space said crossword puzzles aren’t any big brain deal, which is mildly contradicted by the report below, which proves one cannot believe everything one reads online. Still… evidence is coming in.)

Doing crossword puzzles, reading, and playing cards daily may delay the rapid memory decline that occurs if people develop dementia, according to a U.S. study.

Researchers from New York’s Albert Einstein College of Medicine spent five years following 488 people aged 75 to 85 who did not have dementia at the start of the study.

Participants were tracked for how often they engaged in six endeavors: reading, writing, doing crossword puzzles, playing board or card games, having group discussions and playing music. Almost 1/4 of them developed dementia (that’s the bad news) during the study period. But the more engagement, the slower the decline.

Denise Park, PhD, founder of the Center for Vital Longevity at the University of Texas and a panelist on the recent brain fitness segment of PBS’ Life (Part 2) series, argued against crossword puzzles in this space (Can You Beef Up Your Brain, 12-09-09.) The social component (think tackling a new dance step) of brain exercise, she and many others maintain, is critical. Or the multi-layered element involved in learning to play a musical instrument or taking up photography — Park believes those sorts of endeavors will always beat crossword puzzles and solitary computer games.

Now comes Kathryn Bresnik of ProProfs.com. Bresnik isn’t quite ready to assert that you can improve your cognitive function right this minute by playing online brain games, but she cites a recent report (by Mary Brophy Marcus in USA Today) that the movement is gaining traction:

Computer games have been inching their way into the medical world over the last few years and though your local hospital may not become a mini-arcade, experts say patients can expect to see more gaming in medical settings in the years to come, especially brain games.

That report covered a recent Games for Health Conference in Boston, which for the first time featured a day of sessions specifically focused on gaming and cognitive health, and presentations by researchers from such mildly disparate sites as Massachusetts Institute of Technology and Warner Brothers Interactive Entertainment. (Pick which to believe.)

For the past two days, since being alerted to ProProfs.com, I have been sneaking over to their game page, doing things like the Family Word Search or the Quick Calculate math one. Being an admitted novice to computer games, I found it pretty nifty to have that little voice telling me That. Is. Correct. when I did something right, and presenting instant tallies of time and scores.

So, okay, I haven’t made it into the top 50 for this week, and the games I chose are probably designed for 7th graders rather than 70-somethings. But here’s the thing: Every day, my scores are just a tiny bit better. This seems proof, albeit slightly anecdotal, that I am getting smarter. You may want to give it a try. If I can get smart enough to embed the game that the site tells me I can embed into a blog, it will be done at a later date, and perhaps we can poll True/Slant readers for increased cognitive function.

One caveat: While you are doing computer games, you cannot be doing dishes. Or writing blogs, for that matter. Smartness has its price.

via A crossword puzzle a day may delay dementia – Aging- msnbc.com.

Stress, sorrow and depression – – the dark side of the holidays

Win McNamee/Getty
Win McNamee/Getty

The photo on the front page of the Sunday New York Times tells the ultimate underside to holiday joy: a young woman, Sarah Walton, with her arms around the tombstone of her husband. The scene is in Arlington cemetery; the simple stone reads LTC James J. Walton and lists the parameters of his brief life, 1967-2008.

In households and hotel rooms everywhere, sadness and loss color the holidays gray. Most of the sadness is of a far lesser sort than that of the grieving widow, but just as real: relationships gone sour, bills that can’t be paid, health that can’t be restored — or the old, familiar pains of too many demands and too little time.

At my San Francisco church, a ‘Blue Christmas’ service was started four years ago by Associate Pastor Catherine Oliver, designed for those who struggle under the weight of everyone else’s festive spirits. Some of the faces she sees are familiar, but many belong to strangers seeking comfort or relief. This year, Oliver reports, attendance was not notably higher — “but there were more men.”

Acknowledging the stress and depression that so often accompany the Thanksgiving-to-New Year’s Day season, the Mayo Clinic recently posted a few tips to help bring a little peace and joy into the season. They are summarized here, in categories found to be common.

First, Mayo Clinic recommends, recognize holiday triggers so you can disarm them before meltdown occurs. Most common among these are:

Relationships. Relationships can cause turmoil, conflict or stress at any time, but tensions are often heightened during the holidays. Family misunderstandings and conflicts can intensify — especially if you’re thrust together for several days. On the other hand, facing the holidays without a loved one can be tough and leave you feeling lonely and sad.

Finances. With the added expenses of gifts, travel, food and entertainment, the holidays can put a strain on your budget — and your peace of mind. Not to mention that overspending now can mean financial worries for months to come.

Physical demands. Even die-hard holiday enthusiasts may find that the extra shopping and socializing can leave them wiped out. Being exhausted increases your stress, creating a vicious cycle. Exercise and sleep — good antidotes for stress and fatigue — may take a back seat to chores and errands. To top it off, burning the wick at both ends makes you more susceptible to colds and other unwelcome guests.

The good news is that even with the worst of causes, holiday blues can be lessened. Most effectively by following a few good recommendations such as these:

Acknowledge your feelings. If someone close to you has recently died or you can’t be with loved ones, realize that it’s normal to feel sadness and grief. It’s OK to take time to cry or express your feelings. You can’t force yourself to be happy just because it’s the holiday season.

Reach out. If you feel lonely or isolated, seek out community, religious or other social events. They can offer support and companionship. Volunteering your time to help others also is a good way to lift your spirits and broaden your friendships.

Be realistic. The holidays don’t have to be perfect or just like last year. As families change and grow, traditions and rituals often change as well. Choose a few to hold on to, and be open to creating new ones. For example, if your adult children can’t come to your house, find new ways to celebrate together, such as sharing pictures, emails or videotapes.

Set aside differences. Try to accept family members and friends as they are, even if they don’t live up to all your expectations. Set aside grievances until a more appropriate time for discussion. And be understanding if others get upset or distressed when something goes awry. Chances are they’re feeling the effects of holiday stress and depression too.

Stick to a budget. Before you go gift and food shopping, decide how much money you can afford to spend. Then stick to your budget. Don’t try to buy happiness with an avalanche of gifts. Try these alternatives: Donate to a charity in someone’s name, give homemade gifts or start a family gift exchange.

Plan ahead. Set aside specific days for shopping, baking, visiting friends and other activities. Plan your menus and then make your shopping list. That’ll help prevent last-minute scrambling to buy forgotten ingredients. And make sure to line up help for party prep and cleanup.

Learn to say no. Saying yes when you should say no can leave you feeling resentful and overwhelmed. Friends and colleagues will understand if you can’t participate in every project or activity. If it’s not possible to say no when your boss asks you to work overtime, try to remove something else from your agenda to make up for the lost time.

Don’t abandon healthy habits. Don’t let the holidays become a free-for-all. Overindulgence only adds to your stress and guilt. Have a healthy snack before holiday parties so that you don’t go overboard on sweets, cheese or drinks. Continue to get plenty of sleep and physical activity.

Take a breather. Make some time for yourself. Spending just 15 minutes alone, without distractions, may refresh you enough to handle everything you need to do. Take a walk at night and stargaze. Listen to soothing music. Find something that reduces stress by clearing your mind, slowing your breathing and restoring inner calm.

Seek professional help if you need it. Despite your best efforts, you may find yourself feeling persistently sad or anxious, plagued by physical complaints, unable to sleep, irritable and hopeless, and unable to face routine chores. If these feelings last for a while, talk to your doctor or a mental health professional.

None of the above can bring back a loved one, or make a new job appear. But perhaps they can help you through to a better and brighter New Year.

Stress, depression and the holidays: 10 tips for coping – MayoClinic.com.

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