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.

 

 

Life: a sexually transmitted, fatal condition

Life: a sexually transmitted, fatal condition

sunset

Life is a sexually transmitted condition that is invariably fatal.

That well-phrased truth – often attributed to British author Neil Gaiman – led off a talk not long ago at San Francisco’s Commonwealth Club by Atul Gawande, physician and author of, most recently, Being Mortal. Gawande’s message was all about being mortal, and facing that inevitable death in advance. In other words, if we mortals could please just admit our mortality – and talk about what we’d like our final days/weeks/months to look like – much good would result.

This writer has been on that soapbox for several decades.

Gawande and his interviewer, University of California San Francisco professor Alice Chen MD, spoke of the need for shared decision-making, shifting away from the paternalistic ‘doctor knows best: here’s what we’re going to do for you’ attitude to the physician giving information and involving the patient in making choices. But their decision-making would still put the doctor first and patient second. This writer respectfully disagrees.

Atul Gawande

Atul Gawande

In response to a question from the audience, Gawande agreed that “a patient with unbearable suffering should be given the option to hasten death.” But he followed this perfectly rational statement with an irrational comment: “every hastened death is a failure of the medical system.”

Give us a break.

The medical system needs, at some point, to confront this reality: Life… is invariably fatal. The medical system cannot forestall anyone’s death forever. The medical system cannot protect, absolutely, against unbearable suffering. Compassionate physicians across the U.S. are recognizing this fact, and increasingly backing the legalization of aid in dying for the mentally competent terminally ill.

Gawande, Chen and countless others are proponents of palliative care, an excellent, relatively new segment of care in this country. They would have us believe that palliative care is the be-all and end-all of end-of-life care, and they oppose the option of legal aid in dying. Palliative care, an option many choose, is a fine addition to healthcare. It can keep pain to a minimum and often insure comfort; as a last resort, palliative sedation can render the patient essentially unconscious for whatever hours or days remain until death comes.

But it is a cruel myth that palliative care, or even the best hospice care, can guarantee anyone will slip peacefully from good life to gentle death. Pain, indignity, discomfort and distress are part of the process; some of us don’t want much of that.

Legal aid in dying, the option to choose at what point to let invariable fatality happen, is the only guarantee. It’s an option that we should all have.

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.

More on Health Care: Where the Costs Are

A few interesting factoids were dropped into the health reform debate by New York Times writer Amanda Cox Tuesday:

In 2006, health care expenses among half the United States population totaled less than $800 per individual, according to the federal Agency for Healthcare Research and Quality.

For openers, that seems entirely reasonable. Would that we could actually care for the citizenry at $800 a pop. Keep reading.

But the expenditures were not uniformly distributed throughout the overall population. Spending was far higher among the elderly, the obese and people who identified themselves as unhealthy. Median spending in those groups totaled $2,300 per individual. Although these patients represent just one-third of the population, they accounted for almost 60 percent of health care spending.

I hate to stomp this nearly dead — oops, bad metaphor — horse even further into its grave, but a lot of us, given the chance to talk to our doctors about aggressive, invasive, often futile end-of-life treatments that are going to make our ends horrific might choose to go home and spend our remaining time with palliative care, at peace. A nifty way to cut that $2,300 back down to $800. But Senator Grassley and others think we should now allow those conversations.

The truth may be too obscured by the cleverly promoted lies, but the issue is about choice. Compassion. Comfort. Peace. Sanity. If anyone could get this truth across to seniors, that one critical segment of reform might still survive. And personally, I’d like to have the option of saving the rest of you taxpayers my $1,500.

via Making Sense of the Health Care Debate – Prescriptions Blog – NYTimes.com.

Counseling Improves Life's End. Surprise!

Knowledge, care and compassion really do bring peace. Why should this be a surprise? And why should a few strident opponents prevent those approaching life’s end from having this benefit?

A study appearing in today’s Journal of the American Medical Association points out the benefits of end-of-life counseling, although the widespread misinformation loose in the land may have doomed what should be a significant piece of health reform.

As a political uproar rages over end-of-life counseling, a new study finds offering such care to dying cancer patients improves their mood and quality of life.

The study of 322 patients in rural New Hampshire and Vermont also suggests the counseling didn’t discourage people from going to the hospital.

The Senate bill provision axed by Finance Committee chair Charles Grassley would have allowed coverage for conversations with physicians about things like hospice care, advance directives and treatment options.  But to opponents of reform, it was a handy attack mechanism. They enlisted a few standard bearers like former Alaska Gov. Sarah Palin and media darling Rush Limbaugh to twist the issue into menacing “death panels,” and in no time at all Sen. Grassley had his excuse to excise.

Losers in this are all of us. Eventually, 100% of us will die. Aggressive treatment and expensive, futile procedures are common today to that experience; compassion and peace are harder to come by.

In the new study, trained nurses did the counseling with patients and family caregivers using a model based on national guidelines. All the patients in the study had been diagnosed with terminal cancer. Half were assigned to receive usual care. The other half received usual care plus counseling about managing symptoms, communicating with health care providers and finding hospice care.

Patients who got the counseling scored higher on quality of life and mood measures than patients who did not.

Could someone please get this information to Sarah Palin?

Study: End-of-life advice aids terminally ill.

Insuring the Uninsured: A No-Brainer

I’ll call her Joan. She is 61 years old, working in real estate and living comfortably in an upscale rental apartment thanks partly to rent control. She has a small 401k and a small, steady income from shared family ownership in a stable investment property. But the real estate business, you may have heard, hasn’t been wonderful lately. Joan lives frugally, gives of her time and resources to community nonprofits and is highly respected in business and social groups. She has no health insurance.

“I would if I could,” she told me some time ago. “But it’s either buy insurance or buy dinner. I’m fond of eating.” Twice in the past year Joan has had to have medical treatment; once for a nasty wound in a bike accident, once for an infection that required an overnight hospital stay. She went to the only place available, the understaffed emergency room of a crowded public hospital. Who picked up the tab? You and I. I am happy to do so, for Joan and everyone else who winds up in these predicaments. But come on, it’s not exactly cost-effective.

Expanding coverage to those currently uninsured is only one segment of this moving-target health reform; I hope it doesn’t get lost the way other key elements seem to be straying from the scene. People like Joan would be the first to purchase insurance through any reasonably-priced plan. Unfortunately, I don’t see many insurance companies eager to offer such a thing, and I don’t know where many of the currently uninsured will go if the public option comes off the table.  There were some 47 million uninsured at the latest count. Add to those the swiftly-rising numbers of independent contractors and freelancers of all sorts.

Getting non-emergency care out of the nation’s emergency rooms seems an enlightened thing to do… if we could just have a little more light and less heat in the discussion.

Tracking Down a Rumor

Rumors come, and don’t seem to go. Jim Rutenberg and Jackie Calmes of the New York Times have weighed in again today with a few facts… just in case anyone is interested in facts:

The stubborn yet false rumor that President Obama’s health care proposals would create government-sponsored “death panels” to decide which patients were worthy of living seemed to arise from nowhere in recent weeks.

Advanced even this week by Republican stalwarts including the party’s last vice-presidential nominee, Sarah Palin, and Charles E. Grassley, the veteran Iowa senator, the nature of the assertion nonetheless seemed reminiscent of the modern-day viral Internet campaigns that dogged Mr. Obama last year, falsely calling him a Muslim and questioning his nationality.

Rutenberg and Calmes point out that the doggedly persistent rumor “was not born of anonymous e-mailers, partisan bloggers or stealthy cyberconspiracy theorists.

Rather, it has a far more mainstream provenance, openly emanating months ago from many of the same pundits and conservative media outlets that were central in defeating President Bill Clinton’s health care proposals 16 years ago, including the editorial board of The Washington Times, the American Spectator magazine and Betsy McCaughey, whose 1994 health care critique made her a star of the conservative movement (and ultimately, New York’s lieutenant governor).

This is the core of what all reasonable people know:

There is nothing in any of the legislative proposals that would call for the creation of death panels or any other governmental body that would cut off care for the critically ill as a cost-cutting measure.

But as T/S Contributor Andy Geiger points out, the real issue in health reform is that people are suffering because they don’t have health coverage. Opponents to any reform at all have found a handy way to create this smokescreen by keeping everyone riled up with an utterly false rumor.

I’ve spent much of my adult life working for better end-of-life care, including being forever on a soapbox urging everyone, not just seniors, to consider their end-of-life options, have conversations, create advance directives and then get on with living. I strongly, fully support the good provision in the health care bills that may indeed now get cut.

But we need not to lose this forest for a tree. Rational people have got to continue fighting for a decent system, a decent bill.

False ‘Death Panel’ Rumor Has Some Familiar Roots – NYTimes.com.