Paradoxes in advance care planning

More on studies indicating physician reluctance to talk about end of life. This from our friends at Pallimed.

L2

We've expressed some AD skepticism on the blog before (e.g. where's the data they do anything), and I sometimes wonder when reading research like this that patients view ADs as some sort of abstraction and don't really understand why us clinicans care about them so much.

Which is not to say that most physicians do care about them much.

Part of what I'm saying is that for us as doctors to tell patients they should consider an AD we also need to be talking with them about their expected future, and that the AD is less important to patient care than that actual discussion about what's going to happen, or what will happen if consolidation chemotherapy for your acute leukemia fails.

Link: Paradoxes in advance care planning

For the patient's good. Complex?

Rosemary Flanigan

September 4, 2009

I sometimes think our ethics committee at Carondelet Health must be one of the most knowledgeable groups in the area—sometimes our self-education takes almost the whole meeting!—but I wish that simultaneously with learning so much, we could be DOING equally much (and maybe we are and I’m just not aware of it).

Back in 1988 the Pellegrino/Thomasma twosome wrote For the Patient’s Good. The Restoration of Beneficence in Health Care, and we are going to discuss the different meaning of the “good” of the patient:

-- The ultimate good (that which constitutes the patient’s ultimate standard for his/her life’s choices, that which has the highest meaning for him/her

--Biomedical good (that which can be achieved by medical interventions

-- The patient’s perception of his/her own good at the particular time and circumstances of the clinical decision and how one prefers to advance one’s own life plan

-- The good of the patient as a human person capable of reasoned choices

The physician is bound to advance each of these four senses of good to the extent possible.

So let’s say the patient dying of cancer who had consistently refused resuscitation now during his/her last hours begs to be put on a respirator because of difficulty in breathing. Here is the place that people might fear their living wills or advance care plans will work against them.

But the physician may order the respirator—in order to make the patient comfortable—without negating the patient’s life plan entirely.

BUT, what if the patient is unable to speak and there is conflict between physician and proxy? Call in the ethics committee!!!! (hopefully, a well-educated one!)

The “patient’s good” is a highly complex concept!!! COMMENTS????

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"

Bioethics Centers Celebrate Anniversaries

Rosemary Flanigan
June 2, 2009

We at the Center for Practical Bioethics just celebrated our 25th anniversary, and lo and behold! when the Hastings Center Report arrived this week-end, that venerable institution is celebrating its 40th!! So the 2009 issue reflects on the four ethical problems addressed 40 years ago: ethics and population, behavior control, the evolution of death and dying controversies, and deciphering genetics. And we’re STILL addressing them!

Robert M. Veatch (the first “employee” at Hastings Center) reflects on the death and dying controversies. One of the first task forces at the center was to disentangle the definition of death from decisions to forgo life support. But the task wasn’t an easy one and he thinks the brain-people and heart-people are mired in even more complexity today in their attempts to define death.

So, too, with forgoing life support or “allowing to die.” Even with federal legislation allowing us to refuse life-prolonging treatments, the questions that arise over appropriate surrogates, futile treatments, and resource allocation led the present staff to return to the Hastings Center’s early Guidelines on the Termination of Life-Sustaining Treatment to revise and update them in order to provide further assistance with these more nuanced issues.

It looks as if ethics centers will not be running out of things-to-do for quite some time!

Podcast: Caring Conversations for Young Adults

Barbara Bollier, MD

Lauren Douville

March 27, 2009

The Center for Practical Bioethics offers a booklet called Caring Conversations to help individuals and their families make practical preparations for end-of-life decisions.

Now the Center has tailored a version of Caring Conversations for use by young adults.

Dr. Barbara Bollier and Lauren Douville talk about it in this edition of the Bioethics Channel.

Religion + End of Life Does Not = Reduced Requests for EOL Treatment

Rosemary Flanigan
March 23, 2009

I have been flattened!!!

Dear colleague John Carney sent me a Journal of the American Medical Association article (“Religious Coping and Use of Intensive Life-Prolonging Care Near Death in Patients with Advanced Cancer” JAMA, March 18, 2009. 1140-47) over the week-end that dashed my preconceptions.

All this time I have presumed, assumed, that those who call themselves “religious” would set aside requests for life-sustaining treatment and simply allow death to occur.

How wrong I was.

Read this précis of the conclusion of the article: “Positive religious coping in patients with advanced cancer is associated with receipt of intensive life-prolonging medical care dear death. Further research is needed to determine the mechanisms for this association.” (italics mine)

Note that the “intensive life-prolonging care = receipt of mechanical ventilation or resuscitation in the last week of life”!!!

It was borne in on me with a whoosh that our assumptions need special attention, especially in our case consults, a point I’ve been making to groups but NOT making to myself!!!! Just because I think of myself as “religious” and my long-held belief that I want nothing that will prolong my dying, in no way can I wriggle that belief into others, even those who share my particular brand of “religiosity.”

My desire to universalize from my own experience was FLATTENED!

And not just the assumptions of us who are doing the analysis but of those others who are involved need to be opened up and examined.

Assumptions are far from facts—yet they color the way we interpret facts. Another hole dug to bury hurried case consults!!!!!

Any stories??? Any remarks??? THANKS.

Truth vs. Hope: Preparing Surrogates for Death

Rosemary Flanigan
January 26, 2009

I am considering using the article by Apatira, et al. “Hope, Truth, and Preparing for Death: Perspectives of Surrogate Decision Makers,” Annals of Internal Medicine 2008; 149:861-868 for the self-education part of our February Ethics and Human Values Committee.

It is pointing to telling surrogates more truth about preparing for death—and less upholding the prospect for “hope.”

Has anyone read it? Do you think it would be a good choice?

THANKS.

OPOs, stop and think!

Tarris Rosell, PhD, DMin
Program Associate
October 23, 2008

How dead does a “cadaveric” organ donor need to be before the heart is removed for transplantation? Or ought death be the necessary precondition for doing so?

Even asking these questions may seem crass and insensitive to those families who have given the “gift of life.” It also is ringing alarms for some Roman Catholic pro-life moralists, according to a recent article in The Economist (http://www.economist.com/science/displaystory.cfm?story_id=12332939).

These are matters more commonly discussed in medical and bioethics journals. Yet organ procurement policies do indeed have something to do with economics, despite U.S. laws forbidding commerce in transplantable organs.

Donors or their families receive no compensation, or ought not, we say; but organ procurement organizations (OPOs) pay decent executive salaries and transplant clinicians may receive even better ones. Transplantation is expensive medicine, with much money legitimately trading hands.

Another interest to economists is the law of supply and demand, which is a perpetual problem for transplanters. Organ supply is woefully short of patients’ demand.

What to do? In a recent New England Journal of Medicine article (http://content.nejm.org/cgi/content/full/359/7/674?query=TOC), Dr. Robert Truog has suggested that we increase organ supply by dispensing with the “dead donor rule.”

(See Center blog for 8/20/08: http://practicalbioethics.blogspot.com/2008_08_17_archive.html)

He argues that we should procure vital organs like the heart and lungs before either cardiac or brainstem death so as to minimize cell death in transplantable organs and thereby maximize transplant success.

Criteria for doing so, says Truog, would be prior signed consent of the donor and a subsequent situation of irreversible severe brain damage with do-not-resuscitate orders.

This worries many of us, notes The Economist, and particularly so some Catholic scholars who will gather at the Vatican in November for a conference on organ donation. “O death, when is thy sting?” quips the journalist. “OPOs, stop and think!” may be the more somber religious pro-life response to Truog and his proposal.

I too think this is a matter not to be ignored in an era of short supply and high demand for human body parts. Clearly, moral boundaries and clinical guidelines are shifting. Perhaps that is not a bad thing. But more thoughtful dialogue is needed, both by economists and ethicists, religious scholars and organ procurers, those who transplant body parts and those who would receive them.

Demand alone is insufficient moral justification for increasing supply by any means imaginable. On this we all agree. Could we have imagined, even a short time ago, that a serious proposal would be offered for recovering vital organs before declaration of donor death?

Substituted Judgment and the Limits of Autonomy

Rosemary Flanigan
Program Associate
Center for Practical Bioethics

Our own John Lantos co-authored an article in the 2008 Journal of General Internal Medicine (23(9):1514-7) entitled Substituted Judgment: The Limitations of Autonomy in Surrogate Decision Making.

The authors make an interesting point: that there is "a compelling argument against substituted judgment. . .based on empirical evidence," and alternative models do a better job of respecting the patient as a person.

(I'm sure you know the arguments against: patients change their minds over time; predictions by surrogates are correct about 68% of the time; research shows that patients themselves do not want decisions made on their behalf to be based solely on their prior statements (!)

So what models to use?

1)Best-interest standards based on community norms (but that is unwieldy. Think of the time it would take to reach those "norms" and, once reached, how do we know they apply to "this" patient?)
2) The patient's life story: respect for persons approach. Here, decisions are not made by trying to predict the actual choices that an incapacitated loved one would have made; instead, decision-makers consider the individual's interests and values in the context of the current situation.

It is an interesting paper. Perhaps ethics committees could consider how surrogate decision making occurs in institutions.

Has anyone done so recently?

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

Your Family Talk this Fourth

Bill Colby, JD, Senior Fellow, Law and Patient Rights
Center for Practical Bioethics
June 27, 2008

This week brings the story of Sam Golubchuk.

Golubchuk was 84-years-old, on dialysis in a Winnipeg hospital, minimally conscious, unable to communicate. No one believed he would get better. Three doctors refused to treat him, claiming that continuing medical treatment inflicted harm. His daughter vehemently disagreed: “He’s a WWII veteran and this is how we repay him, by trying to kill him?”

It was a mess. The dispute was headed for a Canadian courtroom this coming September. As if trying to spare those he loved the stress ahead, Sam Golubchuk died last Tuesday.

Many of us will spend time with our own families over the Fourth of July. It would be a great gift to those we love to take these three steps when we gather:

1. Write down who you want to make your medical decisions if you are unable to speak for yourself. (For a free booklet from the Center, go to www.practicalbioethics.org )


2. Talk to that person about Sam Golubchuk.


3. Tell the rest of your family members (and later tell your doctor) about your conversation.

Then put the forms in a place where everyone can find them, and go light the sparklers! A happy and safe Fourth to all.