Dying On Your Own Terms

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.

The Intriguing Invisible Audience

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.

 

 

 

Life & death decisions: who chooses?

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.

When Mom & Dad go wandering: dementia on a relentless rise

“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.

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.

End-of-life counseling stays in health care bill

Here’s a piece of very good news just in from Associated Press reporter Ricardo Alonzo-Zaldivar:

It’s alive. The Medicare end-of-life planning provision that 2008 Republican vice presidential nominee Sarah Palin said was tantamount to “death panels” for seniors is staying in the latest Democratic health care bill unveiled Thursday. The provision allows Medicare to pay for voluntary counseling to help beneficiaries deal with the complex and painful decisions families face when a loved one is approaching death.

The business of thinking ahead toward end-of-life decisions and making  one’s own wishes known through legal documents such as advance directives has long been encouraged by federal policies. But when coverage for talking things over with one’s doctor was incorporated into health reform it was quickly distorted by Republicans.  Sen.Charles Grassley led the successful campaign to strike it from the Senate bills. But saner heads have prevailed in the House.

“There is nothing more basic than giving someone the option of speaking with their doctor about how they want to be treated in the case of an emergency,” said Rep. Earl Blumenauer, D-OR. “I think the outrageous and vindictive attacks may have backfired to help raise awareness about this problem, which is why it’s been kept in the bill.” The legislation would allow Medicare to pay for a counseling session with a doctor or clinical professional once every five years. The bill calls for such sessions to be “completely” voluntary, and prohibits the encouragement or promotion of suicide or assisted suicide.

The counseling provision is supported by doctors’ groups and AARP, the seniors’ lobby. It was not included in health care bills passed by two Senate committees.

It’s alive! End-of-life counseling in health bill.

Modeling how to die

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.”