Tag: Death and Dying

compassion and choices/Death and Dying/Dying Unafraid/End-of-Life/General interest/Health/Healthcare/Law/Lifestyle/physicians
Posted on

Choosing a better death

by Fran Johns

Could dying be better?

By now most people acknowledge that there are “good” deaths: peaceful, with minimal pain, at home surrounded by loved ones – and “bad”: pain-filled and prolonged, often for months or years and more often than not in a hospital or other institutional setting. The movement toward “good” death – legalized medical aid in dying – has been growing for decades in the U.S., but has been gaining momentum and attention in recent months.

Liner.2Robert Liner MD, a retired obstetrician/gynecologist, gave an informative update on the movement at a recent University of California San Francisco grand rounds. Liner is one of four patient plaintiffs in a California lawsuit which would make that state the sixth to legalize physician aid in dying, and a longtime supporter of leading end-of-life organization Compassion & Choices. The suit is also joined by three physician plaintiffs.

Liner, whose cancer is in remission, said he would personally prefer to avoid death altogether. “But along with birth, dying is a universal experience. It’s what we all do.” And equally universal, he noted, is the wish to make that experience a little more compassionate, a little closer to what most of us would choose.

Liner outlined the current status of California SB-128, the End of Life Options Act, now working its way through the senate. While granting terminally ill, mentally competent adults the right to ask their physicians for life-ending medication, the bill would also establish safeguards such as requiring assessments by multiple physicians and repeat requests for the medication made at least 15 days apart. A similar law in Oregon has proven valuable in many aspects over the 18 years in which it has now been in place, Liner said. Death W Dignity newspaper

He cited a study published in the New England Journal of Medicine at the end of the Oregon law’s first decade which found that since passage of the law Oregon has seen improved training for physicians in end-of-life care, an increase in individuals’ completing advance directives, improved pain management and rates of referral to hospice and an increase in number of people dying at home.

Putting the better-death movement in historical context, Liner referenced a significant case several decades ago that sometimes goes unnoticed. In 1991, he explained, New York physician Timothy Quill published an article in the New England Journal of Medicine describing how he had prescribed barbiturates to a dying patient when her leukemia reached a point at which she no longer wanted to live. A grand jury subsequently declined to prosecute. Quill later became one of the plaintiffs in a case that wound up reaching the U.S. Supreme Court. And in 1997 the Court let stand a New York law prohibiting what was then called physician-assisted suicide, ruling that there is no federal constitutional right to die – effectively turning the issue back to the states.

Five states – Oregon, Washington, Vermont, Montana and New Mexico now allow physician aid in dying, Liner explained. California’s efforts to become the sixth include a campaign launched last year by Compassion & Choices and the lawsuit filed early this year.

Scales of justiceLiner distributed copies of the April edition of San Francisco Medicine, the journal of the San Francisco Medical Society, in which he and two of the other physicians involved in the lawsuit explain their support for legalized aid in dying. “Collectively, we represent almost a century of medical practice, teaching and research…(and) probably most relevant is our extensive experience caring for dying patients,” write lawsuit plaintiffs Liner, Donald Abrams, MD and Marcus Conant, MD in San Francisco Medicine.

The lawsuit is backed by national disability rights advocacy group Disability Rights Legal Center, Liner explained, and cites a number of reasons why aid in dying should now be legalized. While some arguments – such as privacy and liberty interests – are complex, one seems fairly straightforward: California penal code section #401, which makes it a crime to aid or encourage someone to commit suicide (a very different situation from a dying person’s wish to shorten his suffering), was written more than a century ago. Before dying shifted from being commonly a home event overseen by the familiar family physician to hospitals or other institutions where the large majority of Americans now spend their final days and weeks. Before medical technology made it possible to prolong life, often far past any “life” many would choose.

Liner, and millions of other Americans, believe choice in dying should rest with those who are dying themselves.

 

 

California/caregiving/compassion and choices/Death and Dying/End-of-Life/Healthcare/Lifestyle/Medicine
Posted on

Dying in the Fix-It Society

by Fran Johns

Buddhist teacher/lecturer Frank Ostaseski spoke recently to the Bay Area Network of End-of-Life Care on the subject of compassion – something Ostaseski preaches, teaches and practices himself. Co-founder, in 1987, of the Zen Hospice Project, the first Buddhist hospice in the U.S., Ostaseski currently heads the Metta Institute, created to provide education and training on spirituality in dying.Buddha

Buddhism, Ostaseski said, holds that life is supported by two wings, compassion and wisdom, and neither is at its best without the other. His audience, made up of physicians, hospice workers and others involved with end-of-life care, was in interested agreement with the renowned speaker as he expanded on the theme. But this writer, also in agreement, found one side remark particularly pertinent to today’s end-of-life issues.

Ostaseski spoke of a severe heart attack he suffered not long ago, and of the wisdom gained from that experience. It was insight on critical illness “from the other side of the sheets.” During his hospitalization most visitors, even longtime friends with credentials in compassion, said the wrong things. “They were always saying, ‘It’ll be better tomorrow, Frank,’ when I wanted to talk about what was going on that very moment.” Additionally, Ostaseski found that nurses and doctors “interacted with monitors far more than with the patient.” What could well have been an end-of-life situation was, in short, lacking in compassion and wisdom both.

“Hospitals are fix-it places,” Ostaseski remarked.

We may have gotten fixated on being a fix-it society. Whatever the problem, a chemical or technological answer, in the fix-it society, is instantly sought. We fix brain injuries, once-fatal diseases, missing limbs, and more. But can we let someone who is terminally ill quietly die? Seldom. More often than not we keep trying to fix her with extended interventions, futile and expensive treatments or hospital stays that make dying a horror.

Ostaseski and others are working hard to help people find meaning in their final days, focusing on palliative care. Some, including this writer, are working hard to make medical aid in dying a legal option available across the U.S. ALL of us want a peaceful and compassionate death.

The_flame_of_wisdom
The flame of wisdom

 

The personal bottom line, yours and mine, is this: eventually we die. If the focus can be shifted away from constantly trying to extend our days, we can fix the final days that lead, one way or another, to the mysterious, inevitable, unpredictable, un-fixable but quite natural end. All it takes is a little compassion, and a lot of wisdom.

Abortion/compassion and choices/Death and Dying/End-of-Life/friendships/Holidays/Lifestyle/Religion/Reproductive rights/Women
Posted on

Saying Goodbye, and Hello to 2015

by Fran Johns

sunrise

My friend M has died, just shy of the old year’s end and significantly decreasing the joy of the new. But her dying was full of life lessons about saying goodbye, being grateful and trying to ring in a better planet for the days ahead. And thus she leaves a gracious greeting for 2015.

M was a believer in good causes, and she put her substantial time and energies to work for them all. We became friends over our mutual love of writing but we bonded over our mutual commitment to end-of-life choice. Once you concede that you won’t live forever, a reality most prefer to ignore, it is possible to live both gently and joyfully even in tough times. Both of us spent long years encouraging anyone who would listen to confront mortality, make choices, and make personal decisions known to all. It’s called living fully, even into dying.

So M, after conceding her own days on the planet were dwindling, sat down over a cup of soup I’d brought her not long ago and we went about the business of saying goodbye. I told her why I thought she was such a wonder, and she told me all the things I’d be happy to have said for my own eulogy. OK, we had an extravagant mutual admiration society. But the life lesson is that telling others about their own gifts and good qualities (however hard it might occasionally be to uncover them) is something anyone can do, any time; the planet would be immeasurably better if more of us did it more often.

M was supportive of my activism for reproductive justice, having done more than a little of that herself in years past, but once she expressed reservations about how much time I was investing in that cause. “It’s time for young people, young women, to take that on,” she said. Well, yes. Another 2015 greeting for that demographic: reproductive rights are disappearing at an alarming rate. Unless more of us of whatever gender or age pitch in, women – particularly women without money or power – will soon be back in the pre-Roe dark ages, with no control over their own bodies. Which could make for a very unhappy new year for uncounted thousands of women.

The daughter of a rabbi, M was aggressively non-religious. We didn’t waste a lot of time on the subject, though she applauded the idea of my Presbyterian church working to break cycles of poverty. But once, after some sort of “What Would Jesus Do?”-type remark I made she said, “Oh, you and Anne Lamott.” I am personally fine with being lumped in with my funny, gifted friend Lamott, but this was not meant as a compliment. It did lead to a brief, lively discussion about faith and practice. And wouldn’t 2015 be a happy new year if fewer wars were fought in the name of Allah (or Whomever) and more focus were put on the peace, justice and love for fellow creatures that is the basic message of every religion around.

Rest in peace Maya Angelou, Robin Williams, James Brady, Pete Seeger – and all those other good souls we lost in 2014. Most especially, M.

And Happy New Year to us all.

caregiving/compassion and choices/Death and Dying/General interest/Health/Medicine
Posted on

Wise Words from Doctor Turned Patient

by Fran Johns

Bob-baldric

Not every doctor gets an extended view of what his or her patients experience. But one who did – and has shared both the experience and its message(s) is a recently recovered friend and end-of-life issues colleague of this writer, Robert Liner, MD. Liner spent 20 years as an Ob/Gyn with clinical and teaching positions, principally at Mt. Zion Hospital in San Francisco, followed by 20 years in private practice of prenatal diagnosis and gynecologic ultrasound. Among his exhausting list of interests and endeavors are piano lessons, playwriting, poetry, working to publish an illustrated lullaby — and serving on the Leadership Council of Compassion & Choices of N.CA. (And occasional adventures into designing menswear, such as a reincarnation of the ancient ‘Baldric‘, modeled above, which Liner feels makes a lot more sense than the necktie.)

Not long ago, though, all of these – plus a simultaneous major house move and recent new marriage to longtime lady friend – were severely complicated by a bout with life-threatening illness.

“A year ago, on my sixty-ninth birthday,” Liner wrote in an article that recently ran in San Francisco Medicine, “I checked into Kaiser Hospital for work-up of a chronic cough, back pain, severe anemia and a low-grade fever. Believing that patients often overreact to symptoms and seek medical attention prematurely, I had let things go a bit far. I’d been easily fatigued and a bit short of breath, but when a couple of days prior to my hospital admission my wife saw me leaving food on my plate at a favorite restaurant, she insisted on taking me to the ER. I told her this would be an abuse of ER resources but, once there… watching two units of blood being transfused into me, I brilliantly arrived at (the same) conclusion: I was seriously ill.”

Liner covers the days of his hospitalization with openness and humor: “Generally, when getting medical care, I avoid mentioning that I’m a physician. Even experienced providers sometimes have steadier hands when not aware they’re administering to a physician. Or, for that matter, to a malpractice attorney.” (You can read the entire, illuminating piece in the current issue of San Francisco Medicine. It is a significant message to physicians, and an informative and reassuring message to anyone facing hospitalization.)

Liner emerged from more than six months of chemotherapy, radiation therapy and “a lot of drugs” with his B-cell lymphoma in complete remission and a low percentage chance of recurrence. But in addition to the firsthand lessons for physicians and patients about illness, he offers a powerful lesson for all of us about dying – since all of us, patient and doctor alike, do eventually die. Liner and his wife faced that possibility throughout a 36-hour period in which it seemed likely that his disease would, in fact, be terminal; they faced it with “a profound sadness.” But he explains:

“There was nothing irrational about that sadness. Patients who are genuinely terminally ill and who seek physician aid in controlling the time and circumstances of their deaths should not be thought of as irrational or pathologically depressed. If, unexpectedly, my lymphoma recurs, the prognosis would be ‘dismal.’ If that happens, I believe it should be within the scope of ethical, legal medical practice for my doctor to provide me with a lethal prescription – a key to the exit.

“Physician aid in dying is something distinct from suicide. The disease would be killing me. No compelling state interest here. No slippery slope. Only a decision to be made by me as a patient, along with my family and my doctor. As a physician and as a patient, I see this as a fundamental liberty interest and as sound, compassionate practice of the art of medicine. Of, course, where my death is concerned, I’d rather skip the whole thing.”

Wouldn’t we all.

 

 

Death and Dying/Dying Unafraid/geriatrics/Health/Lifestyle/seniors
Posted on

Do We REALLY Want to Live Forever?

by Fran Johns

Is immortality just around the corner?

Say you could live, maybe not forever, but to 150 or so; would you exercise that option? The immortalists, notably including British biomedical gerontologist Aubrey de Grey, unquestionably would. Immortalist thinking is that we should be “conquering death” (by rearranging genomes and other scientific maneuvers) so we can set about living into infinity. De Grey’s goal is to develop a “cure” for human aging.

Immortalism — OK, it’s not in the dictionary, but may be there any day now — the notion that humans should be able to live forever, has been around for a while itself. In the late 1920s, after an “otherworldly experience in the Utah desert,” aviation pioneer Charles Lindbergh enlisted Nobel laureate scientist Alexis Carrel in an immortality project that never went much of anywhere. And that was fortunate, since it had more than a smattering of facism and anti-semitism. Several years ago, David Freidman wrote about that project in The Immortalists: Charles Lindbergh, Dr. Alexis Carrel and Their Daring Quest to Live Forever.

And now comes another daring quest. It’s led by super-scientist de Grey and is detailed in another, new book by Jonathan Weiner, Long for This World: The Strange Science of Immortality. No offense to Jonathan Weiner, who is a remarkably gifted writer with one Pulitzer Prize and a great deal more literary honors more than this writer, but I think I’ll pass on Long for This World. I did read a fine review of it by Abraham Verghese in the New York Times Book Review of August 1 (and was pleased to have my letter about it published a couple of weeks later.) Verghese pointed out that the Immortalists miss the point: “that simply living a full life span is a laudable goal,” and that we could end up “simply extend(ing) the years of infirmity and suffering.”

There’s also a finite amount of space on the planet, and just now we’re not doing a great job of sharing that space. This small piece of cyberspace believes the quest for better life — say, health and wellbeing — might make more sense than the attempt to “conquer death.”

California/Health/seniors/USA
Posted on

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

by Fran Johns

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.

California/General interest/Health/seniors/USA
Posted on

Needless pain, senseless dying

by Fran Johns

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.”

General interest/Health/USA
Posted on

Modeling how to die

by Fran Johns

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

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

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

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

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

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

1 2 3 4