Talking Your Way into a Better Death

Angelo Volandes

Angelo Volandes

“If you do something to my body that I do not want,” says physician/author Angelo Volandes, “it is assault and battery. But if I do the same thing to you in (a medical situation,) it is standard of care.”

Volandes thinks this last is a bad idea. He is on a campaign to change the way American doctors and patients, and indeed the country at large, understand what is done to American bodies at life’s end. He spoke of this campaign, and his new book The Conversation that outlines it, at a recent Commonwealth Club event in San Francisco. When he’s not taking time out to promote the book and the campaign, Volandes practices internal medicine at Massachusetts General Hospital in Boston and is on the faculty at Harvard Medical School. He is Co-Founder and President of Advance Care Planning Decisions, a non-profit foundation dedicated to improving patients’ quality of care.

“Ninety percent of people want to die at home,” Volandes says; “most die in hospitals. There is a misalignment between the type of medical care they want and what they get.” About this unwanted care? “If you’re in the hospital and get unwanted care you never bargained for, I still get paid for it.”

After watching too many patients endure end-of-life treatments he was sure they would not have chosen, Volandes started an unusual practice: taking every one of his patients to visit the intensive care unit, and some to visit the dialysis unit. Once they gained a better understanding of what some of the aggressive treatments – CPR, breathing machines, etc – actually looked like, the patients almost always moved away from “Do everything” to comfort care as their choice.

The basic change Volandes believes is needed begins with a conversation between physician and patient. Those conversations do happen, and there is now Medicare reimbursement, but few physicians find them easy, and few patients know how to inaugurate them or what to say. “Never did a senior physician have to certify that I could talk to a patient,” Volandes says. “The patient needs to know ‘What are the questions I need to ask? What are my options?’ Life’s final chapter needs to be written – but the problem is, I’m writing it (instead of the patient.)”

This writer has been advocating for individuals to write their own final chapters for over two decades. With others writing those chapters instead, the costs are monumental and unnecessary – and millions of Americans die after undergoing painful indignities they would never have chosen. Physician aid-in-dying – approved by a majority of doctors and 7 in 10 Americans and now legal in five states – is one key piece of the puzzle. But the elephant-size puzzle piece is how to get every one of us to make known, well before those “end-of-life” days arrive, what medical care we do or do not want.

Volandes’ conversations could put that piece in place. Every person alive who takes time for the conversation (and for writing it all down) will likely die a better death.

 

 

Dying in the Fix-It Society

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.

Death with Dignity: How to crash a website

 

IMG_1580Among a long list of emails piling into my Inbox is one that says “Thanks to a particularly successful story on People.com the increased traffic has crashed our site. Please be patient as we yell and shake our fists at our web hosting company. We’ll be back up and running shortly.”

It’s from Compassion & Choices, an organization I’ve worked with for nearly two decades. Compassion & Choices is an excellent nonprofit, leader in the fight to make Death With Dignity — specifically, physician aid-in-dying for terminally ill, mentally competent adults — a right for all Americans.

This particular story is a People.com type of story: beautiful young woman dying of brain cancer, choosing to die with dignity and courage… and sadly having to move to Oregon to accomplish this. But similar stories, some with happy endings and some not, occur every day: men and women of all ages in the U.S. find themselves with terminal diagnoses and seek to control their final days and hours. It shouldn’t be that hard.

Though I’m no longer active in this capacity, for many years I served as a Compassion & Choices volunteer — trained C&C volunteers will help those who fit the criteria (terminally ill, mentally competent adults) understand their options. In California, which does not have a DWD law but hopefully will within the next few years, the best option is often to stop eating and drinking. Or sometimes just to stop taking the medications that are keeping you alive.  To be candid, some people also hoard life-ending medications and when their numbered days get to be very few — or their suffering becomes more intense than they feel worth the struggle — they stir those pills into applesauce and spend their final moments in peace, surrounded by loved ones and in the quiet of their own homes.

How in the world is this not a good idea? Why in the world is prolonging life to the bitter end, more often than not in a cold & sterile hospital room ever a better idea?

Brittany Maynard, the 29-year-old subject of the People.com story, is choosing to die on her own terms. Wouldn’t we all?

 

Life, love and palliative care

My greatly beloved sister Jane died this morning, a peaceful end to 84 years of a life extraordinarily well lived. For a few days she had been on palliative care.

Palliative care. File that term away for yourself, your parents, your friends and family. It’s the new best thing, even though for centuries it was the old best thing: keep me comfortable and let life come full circle. For centuries we believed that life was a cycle: birth, Stuff, death. Some people’s stuff was better than others, but there was a general agreement that death happened, so it made sense to ease it along when the time came. Usually it didn’t take long. Often, if ease was not to be had, the family doctor invited everyone in briefly to say goodbye, closed the door and administered a shot of morphine.

Then we invented chemotherapy and ventilators and feeding tubes and miracle drugs and adopted the national attitude that one is supposed to live forever. Plus, we invented lawsuits. So dying turned into something horrid and often painful, something one is really not supposed to do. Physician aid-in-dying for the terminally ill became illegal; even talking about it gave Sarah Palin the death panel willies.

My sister Jane was a gifted artist who told me, a few days before she died, that she’d reached the apex of her career because one of her recent paintings was stolen from a show currently on view. (She was also delighted that others were selling well.) She was a remarkable mother, hostess, book-lover, friend, and about the world’s best big sister. The day after our last conversation she had respiratory failure (quit smoking, please, if you haven’t already) and began to die.

Jane was briefly on a ventilator, which I hated as much as she, but one does what needs to be done. Very quickly she moved from that to palliative care. Her husband, four daughters and assorted grandchildren gathered around to sing songs, hold hands, administer foot rubs, report to her remaining two sisters and innumerable friends that all was well.

This is not an argument against miracle drugs or aggressive interventions when appropriate, or even against feeding tubes and ventilators — although if you catch my children approving such things after I conk my head on the curb please remind them of my explicit instructions to the contrary. But it is an argument to confront mortality, complete your advance directives, talk to family and friends about your own wishes no matter how young and immortal you feel yourself to be, support compassionate and humane dying. Advocating for decent health care for the living wouldn’t be a bad way to start.

Palliative care is a valuable new/old thing. So are big sisters like Jane, although they are hard to come by.

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.

Looking at one's own end-of-life issues

A tough story eloquently told by California physician Martin Welsh adds poignancy to the fight for legalized physician aid in dying, and emphasis to the need for patient choice as a consideration in health reform. Dr. Welsh speaks in clear language of his current dilemma:

I am a 55-year-old retired family doctor with a large, loving family and innumerable friends and former patients whom I see often. I am an extraordinarily lucky man.

For the last five years, I have also been a patient. I have ALS (or Lou Gehrig’s disease), a cruel neurological illness in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body. Soon, I will die from it.

Through my career, I tried to honor my patients’ end-of-life wishes. But after a quarter-century as a firsthand witness to death, I’ve developed my own perspective.

It’s not that I’m a quitter. I have struggled against adversity of one sort or another all my life, and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says “Never Give Up.”

That said, there will come a limit. I have made it very clear to my wife, my family and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube nor a tracheotomy when the time comes that I can no longer eat, drink or breathe for myself.

Dr. Welsh suggests, for himself and others, making a list of 100 things that make life worth living, ordinary things one does every day.

Some are routine, some are “chores,” some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone.

Drive your car to work. Go play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed and put a stamp on it. Hug your child.

Of course we do many more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. Now if you take away one, you can still do 99. Is life worth living without being able to smell the rose in the garden? Of course it is! How about losing two or seven, or 23 — is life still worth living? Of course.

But suppose you get to where you’ve lost, say, 90 things, and now with each thing taken away, a bad thing is added…

At some point, no matter who you are or how strong, you can lose enough things that matter — and acquire enough negatives — that the burdens will outweigh the joys of being alive…

Recognizing he’ll reach that point one day, Dr. Welsh looks his destiny squarely in the eye:

…as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make.