Another Tragedy -- Janet Rivera

John Carney
Vice President for Aging and End of Life
Center for Practical Bioethics

August 1, 2008

No one knows what Janet Rivera would want. The 46 year old California woman, who suffered a heart attack two years ago, has become the latest pawn in this country’s debate involving those who claim to speak for those in interminable situations. This tragic case causes gut-wrenching feelings in just about all of us.

In health ethics when we do not know, or cannot determine what a patient would have wanted, we surrender trying to make a judgment on what is known as the principle of “substituted judgment” and proceed to the next (less desirable) level of “best interest”.

That’s where we are with Janet Rivera, and the problems abound once the speculation begins about how she might be suffering, or what it would be like for her to die when a decision to withhold or withdraw treatment is broached.

It is good ethics to thoroughly explore the facts about the burdens and benefits of her health status (prognosis), and the emotional social and financial costs of her care. The science of medicine is not 100% accurate, but it’s the best we've got; and yes, financial burdens are real, for her family and the state of California.

The reality of today’s healthcare forces us to recognize that we manage the dying process much in the same way we manage chronic disease; sometimes masterfully, sometimes competently, and often ineptly.

The best we can hope for is that good people keep Janet’s best interest at heart. That means keeping this story off the front page. Instead those most involved in Janet's care must be kept at the core of the tough decisions that have to be made on the remainder of her journey.

What do you think? Share and view your comments by clicking on “Comments” at the end of this post.

Links:

Rivera cousin granted temporary conservatorship, Fresno Bee, July 29
A question of life support, McClatchy Newspapers, July 28

An "F" for US Healthcare

Rosemary Flanigan, PhD
Program Associate
July 25, 2008

The Center’s John Carney has sent the staff the Executive Summary of the Commonwealth Fund's July 2008 scoreboard report, Why Not the Best?

It is bleak reading: "Across 37 core indicators of performance, the U.S. achieves an overall score of 65 out of a possible 100. . . ." (When I was teaching, I saw 65 as an F!) Access significantly declined, efficiency remained low.

But what I need your help to understand is in the summary: "The Medicare program could potentially save at least $12 billion a year by reducing readmissions or by reducing hospitalizations for preventable conditions."

HOW DO YOU DO THAT? I can't get into the hospital (except for the ER) without a doctor's order--are we Medicare types to be talked OUT of readmissions?

And though my condition is "preventable," I nevertheless have it (like burning myself accidentally or developing a smoker's hack) and does this say I'm not going to be admitted?

I think the entire population runs to hospitals too easily and knocks on the doors expecting to be admitted but why is Medicare being targeted here?

What do you think? Share and view your comments by clicking on “Comments” below.

Links:

While the U.S. Spends Heavily on Health Care, a Study Faults the Quality, New York Times, July 17

Why Not the Best? Results from the National Scorecard on U.S. Health System Performance, 2008, Commonwealth Fund

Danger: Mandating End of Life Discussions

John Lantos, MD
John B. Francis Chair in Bioethics
Center for Practical Bioethics

July 16, 2008

The California legislature is trying to mandate certain conversations between doctors and patients. Such an approach to medical practice is dangerous.

Doctors ought to talk to patients about many things. Patients ought to know about the importance of good nutrition, weight control, and smoking cessation. They should know the risks and benefits of every treatment that their doctor recommends and of alternative treatments. They should know their prognosis.

Such discussions require time. Patients must be helped to understand complicated treatment algorithms and complex probabilities. Discussions of end-of-life care can be emotionally complex. The process of initiating and structuring such discussions is the art of medicine.

Some doctors are better at it than others. Medical educators try to improve doctors’ skills at such conversations, with only limited success. It is unlikely that legislative mandates for such discussions will succeed where education has failed.

Attempts to legislate specific conversations will quickly run into legal, moral and semiotic problems. If the legislature can mandate certain discussions, can they forbid others? What sort of policing mechanisms would be necessary to nab violators? Will California cops be carefully monitoring every clinic to insure compliance?

Doctors may not always get things right. Legislators would be even worse.

What do you think? Share and view your thoughts by clicking on "comments" below.

Links:

California bill would mandate discussions of end-of-life options, American Medical News, July 14

Making Your Wishes Known for End-of-Life Care

California State Assembly Bill 2747 on end-of-life care

Religion, Conscience, and Controversial Clinical Practices, abstract, New England Journal of Medicine, Feb. 8, 2007 (Note: co-authored by John Lantos, MD, John B. Francis Chair in Bioethics, Center for Practical Bioethics)

Medical Futility Blog, Thaddeus Pope, July 7

Sold To The Lady With the Alligator Purse!!!

Myra Christopher, President & CEO
Center for Practical Bioethics
mchristopher@practicalbioethics.org

July 11, 2008

In June, the American Medical Association House of Delegates voted to attempt to change the federal law which prohibits the buying and selling of organs in order to study using financial incentives to increase cadaveric organ donations. This idea has been discussed for at least fifteen years, and the house approved a similar plan six years ago.

But, the 1984 National Organ Transplant Act makes even a pilot study illegal.

When there are nearly 100,000 people currently on the waiting list for organs, it is easy to understand why well-intended people are eager to test this notion.

However, I would remind readers that in 1993 when the Ethics Committee of United Network for Organ Sharing considered this concept, they concluded "only if and when financial incentives for organ donation are widely accepted as different from purchasing of organs, can this alternative be proposed as preferable to the current system of altruistic organ donation."

To my knowledge data does not exist to indicate that this has happened. What does exist is evidence of increasing healthcare disparities between "haves" and "have nots" in our society and distrust of the healthcare system by those who have been traditionally underserved and marginalized because of color, ethnicity, or socio-economic status.

Organ donation in this country rests on two pillars: altruism of donors and almost absolute trust in transplant teams. Although motivated by "good" reasons, I believe that financial incentives could undermine our current system and that the 1984 law has served us well.

What do you think? Share and view your comments by clicking here.

Links:

AMA delegates seek to change law on organ donor incentives, American Medical News, July 7

Black market in organs uncovered, BBC News, July 9

The Enhancement Debate: Bona Fide or Frivolous?

John Lantos, MD
John B. Francis Chair in Bioethics
jlantos@practicalbioethics.org

The debate about “enhancement” is one of the most difficult debates in bioethics today.

The difficulty arises because the line between therapy and enhancement is so fuzzy and indistinct as to almost disappear. In domains of medicine as different as reconstructive surgery, psychopharmacology, genetic screening, or hormone replacement, some uses of biomedical technology seem to be bona fide treatments of disease while others seem to be frivolous lifestyle enhancements or luxury consumer goods.

This review by Ryan Lawrence of three recent books makes me want to go read the books for their defense an expanded notion of therapy. Then, I’ll need to read the report of the President’s Bioethics Council, Beyond Therapy: Biotechnology and the Pursuit of Happiness. (http://www.bioethics.gov/reports/beyondtherapy/index.html) for a critique of such views.

Then I’ll reread Carl Elliott’s wonderful book, Better Than Well, about the ways in which our desires for self-improvement transcend medical treatment.
Biomedical technology offers many possibilities for better health. It also offers irresistible opportunities for other forms of self-fulfillment – better athletic performance, more attractive appearance, better sleep.

Ultimately, the key question may not be whether such uses of biotechnology are morally acceptable but, instead, which of them ought to be publicly-funded entitlements and which should be privately purchased commodities.

Link: Practice Makes Perfect, The Weekly Standard, June 30