Tag: end-of-life issues

End-of-Life/General interest
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Legacy Gifts: Join a Feel-Good Club!

by Fran Johns

Photo by Marc Najera on Unsplash

The invitation is always open. One of the all-around best societies to belong to, and it can cost a lot less than your golf club. Plus, you’ll never miss the money!

The Legacy Society — or whatever name a nonprofit might choose — is an exclusive club you join simply by naming a chosen charity (or two or three) in your will. Membership doesn’t necessarily get you invited to elegant places, five-course dinners, or fancy balls. What it does get you is the feel-good feeling. Leaving the world better? Priceless.

I go to a lot of ‘legacy society’ events. This is because my good husband was 62 when we married and never had siblings, children, or other survivors-to-be. Since I came with children, grandchildren, and a large, cousin-counting family (all of whom he quickly came to love to varying degrees), it felt right to both of us that everything he’d worked so hard for should eventually go to the causes he believed in. So early on we set up a trust, with his estate divided among a great group of nonprofits.

Wills and trusts make clear what happens to your assets when you die. Full disclosure: this writer has zero legal training. What I know is that a living trust can protect you or a loved one during a lifetime, and distribute all or some of your assets to a cause you believe in after you die. This was something well understood by my good husband. Much of his volunteer work involved helping nonprofits create ‘legacy societies’ that would encourage supporters to name the nonprofit as a beneficiary of their trust. Later on he helped me do the same with nonprofits I support. (https://endoflifechoicesca.org.) You simply let your chosen charity know it’s in your will and you’re in the club. They will also happily guide you through the process of joining.

If you have survivors destined to inherit your estate, what better way to remind them of what was important to you — and teach a lesson from the great beyond about how they can make the world better — than leaving a gift to a nonprofit you believe in?

Living trusts are one good way to get that done. In my own case, the income from my husband’s lifetime of hard work and good investments is helping me live comfortably, although he’s gone to his own well-earned rewards. What this means for the charities we chose is that they have to wait until I’m dead and gone. But for the most part they are being polite about it.

Most nonprofits have someone on staff, or a handy advisor, who can help you make even a small amount of dedicated money make a big difference.

At a recent legacy society event, one advisor talked to us about Mackenzie Scott. If you, like me, haven’t thought much about Mackenzie Scott lately, she’s the mega-billionaire who got that way by helping ex-husband Jeff Bezos create Amazon and get his own quadrillions. After they split, she vowed to give away half of her substantial stash. This continues to be good news to a lot of good causes — partly because she doesn’t tell them how to use it. She might not even insist that her name be plastered over the front door, as do some mega-donors we can quickly name. Leaving those decisions up to whatever your chosen charity needs most — which they generally know best — brings extra gratitude.

You don’t have to have Mackenzie’s money; supporting good causes with any donation today, amid the current challenges of economic craziness and post-pandemic stress, is a great idea. But whether you can pitch in today to help a good cause, you can always arrange for something to be pitched in after you cash it all in.

Feel good today, leave the world better tomorrow.

End-of-Life/General interest
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Two Reviews: Two Fine Books on Life’s End

by Fran Johns

Anita Hannig’s “The Day I Die” and Amy Bloom’s “In Love”

Photo by FORMAT arw on Unsplash

(The following appeared first as a blog for End of Life Choices California, an excellent nonprofit on whose board I’m proud to serve. It’s reprinted with pleasure, especially after Hannig told me that our blog resulted in more visits to her website than did her interview with Diane Rehm; I love being mentioned in the same sentence with Diane Rehm.)

Anita Hannig’s The Day I Die: The untold story of assisted dying in America has taken a well-deserved place as the definitive book on Medical Aid in Dying. Want information on how it works? On the history of the assisted dying movement? On the future of legal death with dignity laws? Hannig covers it all, in a book that reads like a personal, informal conversation with the author.

Hannig spoke recently with this reporter about The Day I Die – which is filled with stories of her own experience as a hospice volunteer, and accompanying other volunteers and professionals – and about the work we do at End of Life Choices CA.

“Volunteers are the lifeblood of assisted dying,” Hannig says. “They provide firstline support for families and patients, and it’s hard to overestimate the role they play. In my research, I witnessed how much families and their loved ones leaned on volunteers for their technical expertise but also – and equally importantly – for their human touch and care. In a time of great vulnerability and uncertainty, volunteers help patients navigate the ins and outs of qualifying for the law and accompanying them each step of the way afterward. The emotional labor volunteers put into their work is nothing short of admirable. I have profound respect for their work.”

Hannig, an associate professor of anthropology at Brandeis University, invested five years of study and hands-on involvement in writing The Day I Die. Along the way she accumulated a wealth of stories – poignant, humorous, heart-tugging, enlightening – that she shares in the book.

Looking ahead, Hannig says she wants to be optimistic about the future of the law, “but in the current political (or perhaps judicial) climate I am not sure such optimism is warranted. In the long term, however, I do think that we as a society will gradually move into a direction of granting more rights and freedoms to the dying. My hope is that assisted dying will eventually become legal in all fifty states.”

For now, Hannig says “there are still some misunderstandings about all the different steps someone needs to complete to qualify for assisted dying. Most people think it’s more straightforward than it actually is. Or they wait too long to start the process. Many are still under the impression that there’s a “magic pill,” when in reality the protocol of the medications is quite nuanced and complex. My book talks about the fascinating pharmacology of dying in more detail.”

The Day I Die, in fact, talks about the fascinating work of assisted dying in all its important, often difficult, always rewarding details. It’s a book to read, to keep and to give to those you love. 

*****

Amy Bloom’s In Love is a book for anyone facing Alzheimer’s, anyone who knows someone with Alzheimer’s – or  anyone who’s ever been in love.

It is, despite the somber underlying theme, a love story.

Bloom writes unblinkingly of her husband’s decision to end his life before Alzheimer’s can pull him into years of oblivion, and her own decision to support him in this quest. 

In just the first few pages it’s easy for the reader also to fall in love with Brian Ameche. Bloom writes with warmth and honesty about their love affair, begun while each was committed to someone else and eventually legitimized into a more or less conventional marriage. The handsome Italian architect/ex-Yale football player from a sprawling Catholic family and the celebrated Jewish writer/ teacher/ psychotherapist who share, at least, a dedicated atheism, create a life together bursting with joy. Until his diagnosis.

Brian, who has probably had Alzheimer’s for a few years, finally exhibits enough symptoms – confusion, forgetfulness, erratic behavior – that it can’t be ignored. And he is immediately, defiantly certain that he wants to end his life while he has the wits to do so.

In the U.S., there’s no legal, nonviolent way to accomplish this goal. Even in the 11 states or jurisdictions where Medical Aid in Dying is legal, one has to have a terminal diagnosis and be mentally competent; Alzheimer’s is a disqualifier. 

Ameche and Bloom finally settle on Dignitas, a Swiss nonprofit that helps people with terminal illness – including Alzheimer’s – end their lives peacefully. But Dignitas, in addition to the costs of getting to Zurich, has its own strict regulations: certifications of Ameche’s diagnosis, medical information and proof that he’s not just depressed, time-consuming hoops that must be jumped through. The couple set about making it happen, while keeping their plans from all but a necessary few. Toward the end they accomplish the final details – notes to friends and relatives that will be delivered after Ameche’s death, discussions about his wishes, plans for a few celebratory days in Zurich – which do include a celebratory moment or two – and for a friend to be there to fly home afterward with Bloom.

Bloom skillfully weaves glimpses of their romance and marriage, the good and the bad, into the story of their struggle to meet Dignitas qualifications and complete the journey. It’s a remarkable journey, remarkably well told.

(For anyone addicted to audio books, as this writer increasingly is, this one is a special treat: Bloom reads her own words. It’s as if she were telling the reader the tale.) 

End-of-Life/General interest
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Should the pope open a WordPress blog?

by Fran Johns
Photo by Ashwin Vaswani on Unsplash

I seldom agree with the good Pope Francis, although we do share a name. (It’s spelled with an ‘i’ for the Franks of the world; Frances is for the Frans & Frannies. This is an educational essay.)

Our disagreements include:

The pontiff would have just about every pregnant woman in the world carry that fetus to term, without a nod toward what else is going on with that woman, her life, her health or her concern for a fetus that’s not viable — all things that seem worth considering before we just ban abortion, period. He and I do read the same Bible, which, by the way, does not mention abortion.

The other cause with which I am deeply involved, the right to control one’s final days when one is near death, is opposed at every turn by Pope Francis and his otherwise perfectly respectable church. Happy side note: In California we have the End of Life Option Act, which was signed into law in 2015 by deeply religious Catholic Gov. Jerry Brown. Gov. Brown opined that he didn’t know if he’d want to make such a choice — using legal Medical Aid in Dying — himself, but didn’t think he had the right to deny others such a choice. And bless his Jesuit heart.

So I follow the goings-on of the aging pontiff with a degree of fellow-Christian skepticism. But here he is, in a recent New York Times, urging compassion for the aged. I would definitely be in agreement with the Vatican on this one; surely we can all get on board for compassion.

As the story evolved, though, the pontiff kept throwing in phrases like “spending time with the old forces people to slow down, turn off their phones and follow a deeper clock;” or “there is a gift in being elderly, understood as abandoning oneself to the care of others.” Full disclosure: I am older than the pope. This is admittedly VERY old, but such is life. Seeing photos of Francis in a wheelchair when I’ve just finished a three-mile walk around the hills of San Francisco evokes a degree of compassion from yours truly.

I just resist giving The Old a blanket bad rap of total decrepitude. Some of us (not me) are still running corporations or making scientific discoveries. Some of us (not me) are still running marathons. Some of us are agitating for reproductive justice, end-of-life choice and world peace — all of which are compassionate endeavors.

Maybe the pope should start a WordPress blog?

California/caregiving/Death and Dying/End-of-Life/General interest/geriatrics/Health/Healthcare/Lifestyle/Medicine/physicians/San Francisco/seniors
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Dying On Your Own Terms

by Fran Johns

Mileva Lewis with the author
Mileva Lewis with the author

Do Not Resuscitate? Allow Natural Death? Do everything to keep me alive? Whatever happens, I don’t want tubes down my throat! Keep me out of Intensive Care Units!

End-of-life decision-making gets tougher every day.

Dying – that straightforward, universal human experience – now often involves a bewildering assortment of choices and decisions. And most of us are poorly prepared. We have core values (and usually more than a few fears and family histories) that come into play in making end-of –life choices, but too many of us are caught unawares.

At a recent Commonwealth Club of California event Mileva Saulo Lewis, EdD, RN, used a “values history” approach to explain how these difficult decisions are made, and to help audience members walk through the process. “Values history” translates: What matters to you? Why? It was developed at the Center for Medical Ethics and Mediation in San Diego.

“Values,” Lewis explains, “are the criteria by which you make decisions.” They might be rooted in your home and family, your faith community, college or university, workplace or elsewhere, but one’s values underlie all decision-making. And the reason all this matters today, especially with end-of-life decisions, is that medicine and technology have made seismic shifts over the past half century.

Lewis spoke of how the patient/physician relationship, one of these shifts, has moved from the paternalistic, “father knows best” model to what is now often termed “patient-centered” care – shared decision-making. This new model requires patients not only to be well informed, but also to be proactive and to make their values known.

The goals of medicine, Lewis explains, include curing disease, relieving symptoms and suffering, and preventing untimely death. The patient’s part is to make sure the healthcare provider explains and counsels adequately, and respects the patient’s expressed wishes. Ideally, decisions will be made in concert.

Lewis outlined some of the factors to consider in end-of-life decision-making such as how important to you is independence, being able to communicate with others, being pain-free and other end-of-life circumstances that have been frequently discussed in this space. She suggested one tool that has not been mentioned here, and is an excellent aid: the Ottawa Personal Decision Guide. However you make (and record) your personal choices, she stresses the importance of thinking through your values, writing down your wishes and – most important of all – talking it all over with friends, family members and your healthcare provider.

“Know yourself,” Mileva Lewis says. “Communicate. Trust yourself, and your healthcare provider. And be proactive.”

Heeding Lewis’ advice can help protect your values, and insure that your end-of-life wishes are respected.

California/caregiving/End-of-Life/Health/seniors
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The Intriguing Invisible Audience

by Fran Johns

The questions were sharp, incisive. The comments were poignant, sometimes wrenching, sometimes funny. But the really funny thing was that I couldn’t see a soul in the audience.

This was a recent talk and group discussion with the Senior Center Without Walls. I was on the phone in my living room, the moderator was somewhere else, and some 20 to 30 seniors – most of them old, if unseen, friends by now – were sitting comfortably in their San Francisco Bay Area living rooms. Who knew?

This particular discussion dealt with end-of-life issues, although I got in (with advance permission) an introductory plug for Perilous Times: An inside look at abortion before – and after – Roe v Wade, and my current soapbox about preserving reproductive justice. I talked briefly about my longtime involvement with Compassion and Choices, about the work of that excellent organization, and the multiple benefits of considering one’s own mortality before one’s own death is knocking at the door. From the various phones came personal tales – “My husband died exactly as he wished…” “one member of the family wanted to contradict what (the dying person) explicitly wanted…” And questions about what C&C can do (counsel, advocate, support) and even – every nonprofit representative’s favorite: “Where can I send money?”

Audience members come and go at will, during Senior Center Without Walls discussions, and the pretty constant beeping that heralded the comings and goings made the entire event feel like a free-wheeling open house. Which is, in fact, not far from the truth.

Senior Center Without Walls participants play bingo, read plays, join support groups for everything from low vision to LGBT issues, bird-watch (guided help with identifying the birds seen from your window) and share in adventures that range from armchair travel to sing-alongs.

I hope they learned a little from this discussion leader; I learned a LOT from the scattered seniors of Seniors Without Walls.

 

 

 

General interest
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Life & death decisions: who chooses?

by Fran Johns

Scale of justice
Scale of justice (Photo credit: Wikipedia)

I was pleased to be included in a panel on Advance Directives recently for the Bar Association of San Francisco, surrounded by three very smart women. Organized & moderated by SF Bar’s John O’Grady, the panel included Harriette Grooh of HGA Personal Care Consultants, Sara Stephens of Good Medicine Consult & Advocacy, and Attorney Elizabeth Krivatsy. The audience — in post-event evaluations — gave us mostly all fives out of possible one to five ratings, which would be a nice touch to my resume if I had a resume. I was there as writer on end-of-life issues, and acknowledged as the wearer of two hats. My death & dying hat alternates with the abortion hat, which I explained was how never to be invited to cocktail parties.

But this panel’s focus was on end-of-life decision making: how, if we consider it, would we prefer to die? Most of us say: At home, at peace. Physician aid in dying — now legal in four states and a movement that is finally gaining ground around the U.S. — is key to peaceful death for many of us, and significant to my work in the area. But opposition to this rational, humane way to die comes from two powerful directions: The Catholic Church (NOT most Catholics, certainly not the excellent folks at Catholics for Choice) and the far right — mostly religious fundamentalists who somehow believe that pain and suffering at the end of life should never be shortened.

The issue becomes one of who chooses: the dying individual, or religious and political powers.

My hats are interchangeable. Comprehensive, justice-rooted women’s health cannot put the fetus in control and cannot take the potential decision to choose an abortion away from the individual. But opposition to this rational, humane way to live comes from two powerful directions. You guessed it: Catholic officialdom and the religious/political right.

Happily, there’s progress, slow but sure, in end-of-life justice and my hat is off to all — Compassion & Choices in particular — who are leading this battle. Unhappily, my other hat might need to be a helmet to protect against the slings and arrows of those opposed to reproductive rights.

California/Health/Lifestyle/Medicine/seniors/USA
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When Mom & Dad go wandering: dementia on a relentless rise

by Fran Johns

“MISSING,” the sign reads. “Distinguished-looking elderly man. 6′ 1” slightly stooped. Gray hair. Wearing dark blue sweater and gray slacks. Name: George; does not always respond. Suffering from mild dementia. Wandered away from the Laurel Village shopping center area. Please call 415-xxx-xxxx with any information.”

The sad, 8″ x 10″ flyer has appeared (once the words were slightly different, but it was clearly the same George) at the bus stop near my home twice in recent months. I kept the number in my wallet for a while, hoping I might spot him because I walk the city myself. But the difference is that I have on a warm jacket — it’s way too cold in San Francisco, especially after dark, for only a sweater — and I know how to get home.  I have wanted to call the number and learn whether George got home, but it seems intrusive.

Last year for the first time, as reporter Kirk Johnson writes in The New York Times, people like George and a 60-year-old Virginia woman named Freda Machett accounted for more missing-person alerts than children and adolescents. They are confused and lost, and often are not found in time.

Ms. Machett, 60, suffers from a form of dementia that attacks the brain like Alzheimer’s disease and imposes on many of its victims a restless urge to head out the door. Their journeys, shrouded in a fog of confusion and fragmented memory, are often dangerous and not infrequently fatal. About 6 in 10 dementia victims will wander at least once, health care statistics show, and the numbers are growing worldwide, fueled primarily by Alzheimer’s disease, which has no cure and affects about half of all people over 85.
It started with five words — ‘I want to go home’ — even though this is her home,” said Ms. Machett’s husband, John, a retired engineer who now cares for his wife full time near Richmond. She has gone off dozens of times in the four years since receiving her diagnosis, three times requiring a police search. “It’s a cruel disease,” he said.
“You have to stop thinking logically, because the people you’re looking for are no longer capable of logic,” said Robert B. Schaefer, a retired F.B.I. agent who cared for his wife, Sarah, for 15 years at home through her journey into Alzheimer’s. He now leads two-day training sessions for the Virginia Department of Criminal Justice Services.

How to deal with dementia is the most bewildering of end-of-life issues, whether for oneself or for a family member. Most of us would choose almost any other scenario for our last months or years, but the choice is often not ours to make. We can file advance directives (mine includes a “Dementia Provision“) and express our wishes and do brain exercises; still, one in seven Americans, according to most fairly recent reports, now suffers from dementia and the numbers are on the rise.

Here’s one interesting perspective. My greatly beloved brother-in-law, who recently relocated with my sister to a retirement community, has Parkinson’s. Though his mobility and function are diminished, the disease has yet to affect his mind. Several weeks ago he told me he no longer fears dementia. “I see people more and more with varying stages of dementia,” he said, “and I believe you can be happy.”

But you can also wander off.

More Wander Off in Fog of Age – NYTimes.com.

California/Health/seniors/USA
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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.

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