Why do people still suffer at the end of life?

Myra Christopher

President/CEO

Center for Practical Bioethics

Wednesday, December 9
5 pm Reception

6 pm Lecture

Kauffman Foundation

4801 Rockhill Road

Kansas City, MO 64110

The lecture is free but registration is requested. Click here to register online.

Podcast: Why do people still suffer at the end of life?, Myra Christopher, November 27, 2009

Who's willing to listen to the dying patient?

John Carney
November 23, 2009

In watching Dr. Ira Byock on Sunday night (11/22/09) on 60 Minutes, I felt the sting of CBS interviewer, Steve Kroft’s remark – “so this really is about death panels”, a reference to limiting invasive treatment for those in the throes of dying. Ira, a good friend, a veteran palliative care doc, gifted author, and someone who’s dedicated his medical practice to those living with advanced disease, responded admirably.

But I doubt he made any new friends.

If I have my wits about me whenever a well intentioned advocate asks me that kind of question, I ask permission to ask a few in return. If we can agree that all of us will die someday, can we also agree that some ways of dying are preferable to others (e.g., being pain free, surrounded by loved ones, in your own home)? And if we can agree there are, wouldn’t you want your doctor to tell you when that time is approaching so you can receive the kind of care that helps rather than hinders your goals of care?

While death remains an anathema; most of us can also do a pretty good job of describing, at least theoretically, what kinds of things we’d prefer as dying patients. Healthcare professionals who have knowledge and insights about advanced disease should also have the courage to ask me questions that I’m too scared to ask myself.

Facing reality is sometimes a good thing when it comes to life and death. I’d rather answer their questions than wonder why no one asked when they suspected otherwise.

Dying people deserve the best we have to offer. Forcing them to undergo treatment to recover from a condition they won’t recover from may be easier for us, but it is not better for them.

Perhaps those of us accused of supporting death panels need to turn the question around, posing for our accusers as ridiculous a corollary – why do you support the torture of dying patients? I’m not at all convinced that it enhances the dialogue, but maybe it will startle us into realizing that the real purpose of this discussion is not about who’s got the more worthy cause, but who’s willing to listen to the dying patient.



Link: The Cost of Dying, 60 Minutes, CBS News, November 22, 2009

End of Life Care in the News

The State of Aging and End of Life

Health Talk

KMBZ Radio

November 21, 2009

53 minutes 51 seconds

The task of making our medical wishes known during a serious illness or at the end of life is much more complicated now that it’s part of a political debate. John Carney, Vice President of Aging and End of Life at the Center for Practical Bioethics, explains in this edition of Health Talk on KMBZ Radio, Kansas City.

The Cost of Dying
60 Minutes
CBS News
November 22, 2009

Last year, Medicare paid $50 billion just for doctor and hospital bills during the last two months of patients' lives. And it has been estimated that 20 to 30 percent of these medical expenditures may have had no meaningful impact.

You might think this would be an obvious thing for Congress and the president to address as they try to reform health care. But what used to be a bipartisan issue has become a politically explosive one.

Give Me ObamaCare and Give Me Your So-Called "Death Panels." It's Surely Better Than What We Have Now.

A debate between Dr. Summer Johnson, dubbed a "progressive bioethicist" by the conservative Mercatornet, and Nancy Valko, RN of Missouri Nurses for Life, summarizes why the health care reform problem has been so difficult to resolve.

To read Dr. Johnson's post, click here.

Medical Professionalism: What's trust -- not truth -- got to do with it?

Gary Pettett, MD
October 30, 2009

The physician patient relationship is changing … as is the concept of medical professionalism. Is it time to redefine what we mean by medical professionalism?

And how will that affect your relationship with your doctor?

Doctor Gary Pettett, a neonatologist and a Fellow at the Center for Practical Bioethics explains in this edition of the Bioethics Channel.

Link: Podcast, 18 minutes 28 seconds

No Country for Sick Men

Myra Christopher
President/CEO
Center for Practical Bioethics
October 23, 2009

A Fellow and former staff member at the Center for Practical Bioethics, Dr. Erika Blacksher, had the chance to hear T.R. Reid speak in Lawrence, Kansas last night. In an email to me this morning, she said, "His message is a moral one: we have to cover everyone (to save money, improve health, and to be fair)."

Sounds like a win/win/win to me.

Reid recently wrote a compelling article in Newsweek titled, “No Country for Sick Men,” that I think is one of the best things I have read on healthcare reform from an ethical perspective. If you haven't read it, I urge you to do so.

Link: “No Country for Sick Men,” Newsweek, September 12 2009

Bending the Cost Curve

Bending the cost curve was the focus of the third of four public forums on healthcare reform sponsored by the Center for Practical Bioethics. The October 20th forum featured a keynote address from Marcia Nielsen, PhD, Vice Chancellor of Public Policy & Planning at the University of Kansas Medical Center.

A responder panel included the following:

*Tom Handley, FSA, MAAA, L& E Actuaries and Consultants
*Rene Bollier, MD, Kansas City Family Medical Care
*John Lantos, MD, John B. Francis Chair in Bioethics at the Center for Practical Bioethics and director of Children's Mercy Bioethics Center, served as a panelist and moderator.

The fourth and final forum of the series is scheduled for Tuesday, October 27. For more information go to www.practicalbioethics.org.

Links:

**Keynote, Marcia Nielsen, PhD, 25 minutes 44 seconds

**PowerPoint

**Responder Panel, 24 minutes 47 seconds

**Q & A, 22 minutes 48 seconds

**Podcast: Bending the Cost Curve, Marcia Nielsen, PhD and Rene Bollier, MD, The Bioethics Channel, 16 minutes 27 seconds

Health Coverage for All

The second of four public forums on healthcare reform sponsored by the Center for Practical Bioethics took place October 13, 2009 in Kansas City.

The focus – health coverage for all. Steve Roling of the Healthcare Foundation of Greater Kansas City provided the keynote address. A responder panel included the following:

*Rex Archer, MD, MPH, Director, Kansas City, Missouri Health Department

*George Flanagan, DMin, MA, program associate, Center for Practical Bioethics

*William Pankey, MD, Chief Medical Officer, Swope Health Services

*Keith Wisdom, CFO, United Healthcare Midwest

Links:

*Health Coverage for All, Steve Roling, William Pankey, MD, The Bioethics Channel, 9 minutes 34 seconds

*Steve Roling keynote remarks, 33 minutes 11 seconds

*Responder panel, 22 minutes 33 seconds

*Q & A, 33 minutes 40 seconds

Health Reform and the Common Good

Rosemary Flanigan

October 19, 2009

Dan Callahan, co-founder of the Hastings Center and still Senior Researcher and President Emeritus, in an article in Commonweal, “America’s Blind Spot” identifies the lack of a sense of the common good as the “blind spot” in all our talk of healthcare reform.

We have heard of “justice” and “rights” as the language of reform, but the radical individualism of our U.S. culture overrides such principles. “We are told,” he says, “that the market system that brings us prosperity, jobs, and a cornucopia of cheap consumer goods will also work its magic in health care if we let it, never mind that there is no good evidence to support that leap from commerce to health care.”

There is no widespread agreement about the role of government in healthcare reform. Think of all the taunts of “socialized medicine”—yet close to half of American healthcare is government-supported—mainly through Medicare, Medicaid, and the Veterans Administration. Admonitions by supporters of reform that “we’re all in this together” is a flabby underpinning to Aristotle’s insight about our very nature as “social beings” and thus our need to look out for one another’s good.

So we limp along in our efforts. Dan says, “I have not painted a hopeful picture about the common good in American health care. That simply does not seem possible.” Sad but true.

Meanwhile, the Center continues its series—this coming Tuesday will be “Bending the Cost Curve: Increasing Revenues and Decreasing Costs” with Dr. Marcia Nielsen, Ph.D., from KU and a panel of physicians and an actuariest (is there such a word???)

Link: America’s Blind Spot: Health Care & the Common Good, Daniel Callahan, Commonweal
October 9, 2009

Good Ethics Starts with Good Facts

The Center for Practical Bioethics kicked off Healthcare Reform 2009: Truth, Justice and the American Way with a public forum October 6 entitled, “Good Ethics Starts with Good Facts.”

The session featured presentations by John Carney, the Center’s vice president for aging and end of life, Teresa Brooks, JD, Polsinelli Shughart in Washington, DC, and Max Skidmore PhD of the University of Missouri-Kansas City.

The next session will address "Coverage for All." Details below. Register online by clicking here.

Links:

Podcast: Teresa Brooks- Polsinelli Shughart, Max Skidmore, PhD- University of Missouri-Kansas City, 13 minutes 45 seconds

Remarks by:

Myra Christopher, Center president and CEO (9 minutes 36 seconds)

John Carney, Center vice president for aging and end of life. (20 minutes 27 seconds)Powerpoint here.

Teresa Brooks, JD, Polsinelli Shughart, PC (17 minutes 14 seconds)

Max Skidmore, PhD, University of Missouri-Kansas City (13 minutes 21 seconds)

Reverend Bob Hill, Community Christian Church (12 minutes 13 seconds)

Glossary of Healthcare Reform Terms

Coverage for All

Session Two of Healthcare Reform 2009: Truth, Justice and the American Way

Tuesday, October 13
7-8:30 pm

Community Christian Church, 4601 Main, Kansas City, MO

Keynote: Steve Roling, President and CEO, Kansas City Healthcare Foundation

Session is free and open to the public. Register online by clicking here or email Donna Blackwood at dblackwood@practicalbioethics.org

Center Events -- October and November

Healthcare Reform 2009: Truth, Justice and the American Way

The Center’s series of four public forums examining issues around healthcare reform begin next Tuesday, October 6. Each forum is free and open to the public from 7 pm to 8:30 pm at Community Christian Church, 4601 Main Street, Kansas City, MO.

Next Tuesday’s session is entitled Good Ethics Start with Good Facts. The evening will feature presentations by John Carney of the Center for Practical Bioethics, Teresa Brooks of Polsinelli Shughart and Max Skidmore, PhD of the University of Missouri-Kansas City, Department of Political Science.

To register for the October 6 forum and the remaining sessions on October 13, 20 and 26 click here. You may also contact Donna Blackwood at (816)979-1352 or dblackwood@practicalbioethics.org.

Links:

Program schedule, content and speakers
Pdf flier outlining forums

I'm dying, STAT! Call my ... lawyer?

Reflections on the Cruzan argument at the US Supreme Court 20 years later

William Colby, JD, General Counsel, Truman Medical Center

October 14, 2009
5:30 pm Reception, 6 - 7 pm Lecture and Discussion

Kauffman Foundation, 4801 Rockhill Road, Kansas City, MO 64110

This lecture is part of the 2009 Connecting the Dots Series to honor the Center's 25th Anniversary. To register for this free event, click here.

Genetics, Jewish Diseases and Personalized Medicine

November 2 and 3, 2009

Kansas City Public Library, 14 W 10th Street, Kansas City, MO 64105

This two day conference will feature panelists from around the world to discuss the ethical implications of new discoveries in genetics. The focus will be on diseases that are more prevalent in Jewish populations, but we will draw lessons that are relevant for everyone.

For more information and to register for this free event, click here.

Continuing the search for civil discourse on health reform

Another week, another series of town meetings on health reform.

The Center for Practical Bioethics continues to speak out for civil discourse on health reform, with the aim to provide information, help people gain understanding and find common ground.

Here's Center activity for the week of August 24-28:

End of Life Scare Take II

Podcast: 13 minutes 45 seconds

John Carney
VP for Aging and End of Life
Center for Practical Bioethics
August 28, 2009

There is confusing language about advance care planning in the US House version of healthcare form. But it is not inaccurate … and actually protects the interests of the elderly and disabled.

That’s according to John Carney, a vice president at the Center for Practical Bioethics. He talks about it in this edition of The Bioethics Channel.

Don’t give up on advance care planning
Testimony – Myra Christopher
Congressman Dennis Moore (D-KS)
August 27, 2009

It is our hope that when you and your colleagues return to Washington in the next few days that you will not succumb to the political pressures to withdraw the advance care planning provisions of the pending legislation.

Health Care Forum
Hosted by the United Methodist Church of the Resurrection
Leawood, KS
August 25, 2009

This forum featured a panel discussion including Myra Christopher, president and CEO of the Center for Practical Bioethics, and Sam Turner, president and CEO of Shawnee Mission Medical Center and a member of the Center’s board of directors.

The elderly and disabled would be protected
John Carney
Kansas City Star
August 23, 2009

The language of the measure could have been more clearly crafted, but it’s not erroneous. It actually protects the interests of the disabled and elderly, rather than jeopardizing them. It’s not dangerous, just poorly worded.

Krauthammer on "The Truth About Death Counseling"

Our friend Christian Sinclair makes some good points about the realities of advance care planning in this post to his blog, Pallimed.

Dr. Sinclair participated in The Bioethics Channel podcast that focused on end of life care as a part of healthcare reform. It's a 15 minute 32 second segment with Myra Christopher of the Center for Practical Bioethics. It was recorded July 3, before "death panels" entered the public debate.

The link is here.

Pallimed: A Hospice & Palliative Medicine Blog: Krauthammer on "The Truth About Death Counseling"

An End of Life Setback

Word out on the hustings (!) is that the removal of the end-of-life “consultation” from the reform bill has set back (and heaven knows it was back far enough already) any talk about end-of-life issues.

Therefore, I think our ethics committees should redouble their efforts to carry out into the communities Caring Conversations or whatever instrument is used in your locality.

The scare tactics have sent many back on their own resources, which might be nil. Thus, the educational outreach, indicated in most ethics committees’ mission statement, is needed as never before.

Do any of you encourage such outreach? I know I’ve slipped in my enthusiasm. HELP!

Healthy Question: What's the shouting really all about?

Myra Christopher of the Center for Practical Bioethics is dismayed that it's becoming controversial to discuss end of life care.

"To imagine that that's a bad thing is beyond me," she says in an August 15th article in the Kansas City Star.

Here's the link:

Healthy question: What’s all the shouting really about?
Alan Bavley and Dave Helling
Kansas City Star
August 15, 2009

Medical Futility Blog -- by Thaddeus Pope: Health Care Costs and the Elderly

Medical Futility Blog -- by Thaddeus Pope: Health Care Costs and the Elderly

Interesting post here from our friend Thaddeus Pope at the Medical Futility blog. The nine minute video report from Religion & Ethics Newsweekly is well worth viewing.

At the Center for Practical Bioethics, we continue to monitor how end-of-life care will ... or should ... be included in health care reform.

Healthcare reform bad for seniors?

House bill includes advance care planning

Starting to see and hear more about aging and end of life provisions in proposed health reform measures.

A guest column in the New York Post by the former lieutenant governor of New York, Betsy McCaughey, states in part:

One troubling provision of the House bill compels seniors to submit to a counseling session every five years (and more often if they become sick or go into a nursing home) about alternatives for end-of-life care (House bill, p. 425-430). The sessions cover highly sensitive matters such as whether to receive antibiotics and "the use of artificially administered nutrition and hydration."

This mandate invites abuse, and seniors could easily be pushed to refuse care. Do we really want government involved in such deeply personal issues?

When you read the language in the bill, it sounds a lot like rather basic advance care planning. The link to the entire bill … 1,018 pages … is:

http://docs.house.gov/edlabor/AAHCA-BillText-071409.pdf

You can scroll down rather easily to pages 425 to 430.

What do you think?

A Deja Vu Moment for Healthcare Reform

Nearly a year ago Steven Schroeder, MD came to Kansas City to talk about healthcare reform, how it was needed and how it came so hard.

The Distinguished Professor of Health and Health Care at the University of California - San Francisco and former president and CEO of the Robert Wood Johnson Foundation said at the 2008 Flanigan Lecture that it would take four things to move the country toward healthcare reform:

1. Economic depression mobilizes the middle class

2. Charismatic president pushes legislation

3. Business asks for help

4. The medical profession mobilizes

He’s come pretty close, hasn’t he?

Links:

Video Dr. Schroeder – Why Reform Comes Hard, You Tube, 8 minutes 52 seconds, August 5, 2008

Lecture: Healthcare Reform Needed but Comes Hard, July 31, 2008, 52 minutes 12 seconds

Health Reform & End of Life Care

Myra Christopher
Christian Sinclair, MD

15 minutes 32 seconds

President Barack Obama says he does not want to see bureaucracies making end of life decisions. Meanwhile, measures are being filed in Congress to address various aspects of end of life care.

Myra Christopher, president and CEO of the Center for Practical Bioethics, and Christian Sinclair, MD, of Kansas City Hospice talk about the President’s remarks and proposed legislative approaches to end of life care in this edition of The Bioethics Channel.

Link: Health Reform & End of Life Care, The Bioethics Channel, July 2, 2009

Is healthcare an American "right?"

Art Caplan thinks so in a column on MSNBC.com. But a survey shows around 55% disagree with the good doctor Caplan.

Dr. Caplan believes health reform can be pushed through by the well-intended Obama administration by answering one single, fairly simple ethics question: Is health care a right that every American should have?

What do you think? Find links to Dr. Caplan column and the online survey below.

Links:

Details, schmetails: Think big on health care, Arthur Caplan, Ph.D., msnbc.com, June 26, 2009

Online survey click here.