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.

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.

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.”

Watching Idols and Icons Die

An article in yesterday’s New York Times chronicled the recent “funereal season” that has seen the passage of such players on the national stage as Walter Cronkite, Les Paul, Farrah Fawcett, Michael Jackson, Ted Kennedy and Patrick Swayze. Add to that the death this week of singer Mary (“Peter, Paul and Mary”) Travers. Although Times writer Sarah Kershaw noted that no more celebrities died this summer than in summers past, a couple of other elements are in play: the particular folks who departed the stage in recent months did so just as Baby Boomers are hitting retirement age, and they were the people who “defined (the Boomers) as a tribe, bequeathing through music, culture, news and politics as a kind of generational badge that has begun to fray.”

Generational badge-fraying is not necessarily a bad thing. As long as one wears the badge lightly on the pocket and occasionally notices which threads are coming loose, in fact, I maintain it is downright healthy. Contemplation of our terminal condition could do most of us a lot of good.

(Specifically, a few of those Boomers who have been putting off getting their advance directives done (OK, I see your eyes glazing over, but stick with me here) will start thinking about doing so. Or at the very least, have a little talk with their significant others about how long they’d like to be kept on life support if they have a stroke tomorrow. Getting this done today leaves tomorrow for enjoying everything else. Plus, it encourages calm; see below.)

Walter Cronkite wound up a long and happy life at 93. But Ted Kennedy was 77, one year older than yours truly. Farrah Fawcett was 62. Patrick Swayze, 57; Michael Jackson, 50. DJ AM Adam Goldstein was 36. The reality is that we’re all terminal; most of us terminate before we’re quite ready but it does happen. Acknowledging that fact can be ridiculously freeing.

The Boomers are reportedly worried not only about the finiteness of their lives, but also about their legacy. The Times article quoted a survey of 1,000 Americans age 44 to 79 conducted by AARP, which found that 55 percent believed they would leave the world worse off than they found it. That prospect can turn you gray in a hurry. But these near-retirees are not planning just to sit around getting gray.

Loss of their legends, according to Marc Freedman, author of “Prime Time: How Baby Boomers Will Revolutionize Retirement and Transform America, has created in this generation a sense of both the “expansion and compression of time,” and they are looking toward second careers doing good. “I think this is the first time so many have simultaneously had an awareness of death and the prospect of a whole new act,” Mr. Freedman says. Many of those new acts may turn the above expectation around, so the world might be left a little better off than they found it.

To which the post-Boomers say, Go Boomers.

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.