Costs at the End of Life (ABC News)

ASBH Meeting in San Diego 2010

The leading U.S. bioethics association, the American Society for Bioethics and Humanities (ASBH), is holding its annual meeting in San Diego from October 21 to 24, 2010.  If you're going to be there, check out these two sessions with which I am involved:

Thursday, October 21, from 8:00 to 12:00 p.m.

Workshop - "What’s Law Got to Do with It?  Legal Issues in Ethics Consultation"

Friday, October 22, from 8:00 to 9:00 a.m.

Panel - "Legal Update 2010: Top 10 Legal Developments in Bioethics"  

NJ Catholic HealthCare Partnership and NJ Hospital Association on Betancourt v. Trinitas Hospital

Patricia Codey and Elizabeth Ryan have an op-ed on the Betancourt case in today's The Record (of northern New Jersey).  Codey is president of the Catholic HealthCare Partnership of New Jersey. Ryan is president and CEO of the New Jersey Hospital Association.  Their organizations appeared as amici on the side of Trinitas Hospital.  I comment on a few passages.  My comments are bracketed and in red.

The question our society must confront is: Should health care professionals be required to use technology to prolong a dying patient's life when those interventions violate longstanding medical ethics and standards, while providing no relief or benefit to the patient?

[With respect to medical futility, there are almost no "medical ethics and standards," much less any longstanding ones.  Therefore, the question Codey and Ryan pose is framed is impossible unless we also determine what constitutes a "benefit to the patient."]

What sets this current case apart from prior situations is the fact that it is asking the legal system to compel doctors, nurses and hospitals to act in ways that go against the medical standard of care and continue treatment where it can do no good.

[The hospital and its amici failed to establish that the treatment requested by the patient's surrogate in this case contravened the standard of care.  Moreover, the phrase "do no good" is very subjective.  Here, the patient thought that the requested treatment (dialysis) was "doing good."  Again, we must demarcate, as a society, a line between worthwhile interventions and non-worthwhile interventions.]

How much care is the right amount of care? When do health care interventions — in the form of machinery and technology — become inhumane rather than heroic? What, in fact, is a death with dignity?  These questions are deeply personal . . . . But these very personal decisions are now becoming a societal issue as well — one that will confront physicians and families again and again in the years to come.

[I agree.  We will not reach consensus on answers to these questions.  But we can devise mechanisms to resolve intractable disputes.]

New Jersey once again is in a position to be a leader in setting legal precedent that clearly and compassionately establishes a process that respects the dignity of dying patients. It is a process that must include the input of patients and their loved ones. We urge the court to accept this opportunity to set forth reasonable, responsible and compassionate procedures to be followed by physicians and hospitals when artificial health care interventions overrun the natural capacity of the human body and spirit.

[I agree.  The heart of my disagreement with the hospital and NJHA and CHPNJ is the same disagreement that I have with TADA.  I really do want the dispute resolution procedures to be fair and reasonable.  Unfortunately, the proposal that NJHA and CHPNJ offered the court was neither.]

UPDATE:  The op-ed was reprinted in the June 16th Atlantic City Press.

Medical Futility - 2010 Slides & Podcasts

I have begun loading, here, the slides and audio from my recent presentations on medical futility and ethics committees.  I will work on getting these into a more integrated/synchronized product and cross-post it onto Vimeo and such sites.

The Caregiver’s Path to Compassionate Decision Making: Making Choices for Those Who Can’t

My colleague Viki Kind has just published a new book:  The Caregiver’s Path to Compassionate Decision Making: Making Choices for Those Who Can’t.  

The Caregiver’s Path guides families and healthcare professionals through the process of making decisions for those who are losing or have lost capacity to think.  Viki Kind has developed an adaptable system for making choices that comes as mu from her heart as from her extensive experience as a bioethicist.  Readers will learn the framework and tools to create a good, ethical decision.  These tools will help give voice to those who can’t speak for themselves. 

The book provides specific strategies and questions to use along the decision making pathway.  This is not a one-size-fits-all solution but can be adapted depending on the individual’s level of incapacity and the situation. Throughout the book are personal and real-life stories to help illustrate these tools.  At the end of the book, Viki gives expanded end-of-life guidance for making the most difficult decisions.  Respect and compassion are the core values of this decision making process.  

Should I fight to the bitter end?

At a recent conference, Singapore Health Minister Khaw Boon Wan spoke about medical advances as a major source of healthcare cost escalation. "High-tech, high-cost medical interventions which are also futile during end-of-life care have presented particularly difficult ethical choices."  (Singapore Today)  





But, apparently, like the United States, Singapore has not yet determined who or how limits will be drawn.

Informed Non-dissent

Many have argued that, when medicine really has nothing left to offer, physicians should NOT ask surrogates, in an open-ended manner:  "What would you like to do?" Nor should they ask:  "Do you want us to restart her heart if it stops?"  They should seek only assent to the (if there is one) only appropriate course of action.



Alex Kon has a nice expression for this in 9(4) AJOB:  "informed non-dissent."  The basic notion is that the physician does not "ask."  Instead, she just informs the family of the already-made decision.  This puts the ball in the surrogate's court.  And the surrogate is not asked to and need not make a decision.  But, if she so desires, may veto the declared/presumptive course of action. 

Death Is Coming: Are You Prepared to Die?

I took this last Sunday morning in New Orleans (at the Ogden Museum of Art). I was tempted to try to work it into my presentation at the ATS. But it did not really work, since the issue was so narrowly framed on how to balance provider and patient rights where the demand to continue life-sustaining treatment was legitimately religiously based.

Tube Feeding: Pros and Cons in End of Life Situations

In my neighborhood, the Delaware Academy of Medicine, Hospice and The Palliative Care Network of Delaware, and the Delaware Cancer Consortium have started posting a series of videos.  This one on "Tube Feeding, Pros and Cons in End of Life Situations."

Anne Studholme on Am. Med. News on Betancourt

This is a guest post by - 

Anne L. H. Studholme, Esq.

Manewitz & Studholme, LLC

Princeton, NJ

anne@manewitzstudholme.com

anne@alumni.princeton.edu

Counsel to amici curiae Not Dead Yet, ADAPT, Center for Self-Determination, National Council on Independent Living, American Association of People with Disabilities, National Spinal Cord Injury Association, Disability Rights New Jersey





Professor Pope does an excellent job, among all his other duties and calls on his time, in maintaining this blog. I almost always agree with his comments about the Betancourt case, where I represent the disability-rights friends-of-the-court.  But I think May 17, 2010, American Medical News article is not fully accurate and needs a more complete response.  In particular, the positions articulated by lawyers for the hospital and its amici as quoted in the article differ extensively from what was said on their behalf in the briefs and at oral argument.   My comments to selected portions of the original article are in brackets and italicized, below:





. . . Judges will decide whether family members could compel Trinitas Regional Medical Center to continue life-sustaining care for their comatose father when hospital doctors believed further treatment was medically inappropriate. ['Hospital' is the crucially important word in that sentence. Another doctor, not connected with Trinitas, testified that the care was appropriate.]





. . . A trial judge in March 2009 blocked Trinitas from discontinuing life support for 73-year-old Ruben Betancourt, who lapsed into unconsciousness after complications from cancer surgery. [Omits to mention that the cause was a self-extubation during recovery from surgery, likely due to improperly secured post-operative restraints at Trinitas itself where the operation took place; that there were no other complications; and that the surgery -- in January 2008 -- had been successful. Betancourt was not dying from cancer and had lived for over a year since the extubation at the time of trial.]





. . . Hospital doctors advised the family that he was in a persistent vegetative state and that ongoing treatment would be futile and inhumane. Betancourt's family members disagreed with the assessment and, believing their father was still responsive [and, crucially from the legal standpoint, that he himself would not want his life-support terminated in this situation], sought and won a court order prohibiting Trinitas from withdrawing support without their consent [which consent, in New Jersey, must be based on the relatives' best understanding as to what the patient would want.]





. . . Physicians agree that patients and their proxies should have a say in such end-of-life decisions, said Lawrence Downs, general counsel and director of public health at the Medical Society of New Jersey. But so should the doctors who are providing the care, he added. MSNJ, joined by other state health care organizations, filed a friend-of-the-court brief in the case. [MSNJ's expressed legal position in its brief and at oral argument was that the doctors' 'say' should always control, regardless of what the family is able to prove as to what the patient wants or would want.]





. . . End-of-life care decisions should be a collaborative process, Downs said. "But where the care demanded by the family is futile from a medical perspective, there needs to be a better way to resolve the question than going to court to order doctors to provide care they are uncomfortable providing. ... The doctor is the medical expert and should have a place at the table to give guidance." [Everyone agrees that the doctor should give guidance and that the decisionmaking, so far as possible, should be collaborative. But Trinitas and its amici, including MSNJ, seek legal permission for the treating facility to always have the last say, with no external control or review. Downs also conflates 'medical futility'-- will the treatment serve its physiological role, in this case dialysis-- with 'futility' as a value proposition, meaning ought this life to be preserved? Under New Jersey law that latter decision is for the patient to make, not anyone else.]





. . . "Patients do have a right to choose among available and appropriate treatment, but not to decide what's medically appropriate," and in this case, doctors had done all they could do, said Trinitas' vice president and general counsel Sam Germana. [The doctors said that, while they could keep Mr. Betancourt alive indefinitely-- he was not brain dead-- they could not restore his mental function to what it had been before his extubation, nor could they reverse the kidney failure. This, in their opinion, meant that continuing to care for him was 'futile.']





. . . Betancourt's attorney, Todd Drayton, said the hospital decided on its own to discontinue support. [That removal of the dialysis port, against the family's objections, happened in January, 2009, four months before Betancourt's eventual death. (The court ordered the port reinstalled immediately, and dialysis had been resumed.)]





"We're not saying patients have the right to demand extraordinary or experimental treatment a hospital feels is inappropriate. That's not the issue," he said. "The facts of our case are whether or not a hospital can unilaterally terminate life-sustaining support over the objections of the family."





The answer is no, Drayton said. He pointed to state Supreme Court precedents upholding patients' rights to determine their care or have someone act on their behalf, particularly in end-of-life circumstances.





Downs said New Jersey case law primarily has addressed patients' rights to refuse or withdraw medical treatment. [Primarily, but hardly exclusively.]





The Betancourt case, however, opens the door for the courts to address for the first time whether doctors must continue providing care they consider medically unwarranted and even unethical, he added. [Not for the first time.]





Sincerely, Anne Studholme.

Trying to Be a Good Surrogate

The short improvisation illustrates one daughter trying to be a faithful surrogate, trying to determine the mother's preferences.  The other despairs of such such an endeavor.

Provider Risk Perceptions Must Be Addressed -- Even When They Are Ungrounded

In her "Regulating Physician Behavior: Taking Doctors' 'Bad Law' Claims Seriously" Childress Lecture, Sandra Johnson makes a compelling case that, even when they are misinformed, the risk perceptions of healthcare providers must be addressed.  They can be addressed through safe harbors, through education, and through other mechanisms.  But it is not sufficient to simply dismiss provider concerns even if they do lack a solid (or any) basis in legal reality.  Perceptions of risk, not actual risk, guides behavior.  Therefore, to get optimal treatment behavior, it is not sufficient to reduce or eliminate the risk itself.  Providers must also view the risk as de minimus or non-existent.  I was reminded of this twice today.  

First, this morning during the Council on Health Care Economics and Policy conference at the RWJF in Princeton, Norm Fost argued that the risk of liability or prosecution for unilaterally refusing inappropriate medicine is close to zero.  He may be right.  Nevertheless, such care is regularly provided.  Sometimes, it is because physicians themselves want to provide it.  Sometimes. providers understand the legal risk is low, but still want to avoid conflict and cave-in.  But still other times, providers really do fear some sanctions.

The second event from today that reminded me of the importance of perceptions is a report in today's British Telegraph that a significant percentage of British nurses fail to provide adequate pain control.  Why?  Because of a fear or prosecution for accelerating death.

Actions Speak Louder than Words - Providing Inappropriate Treatments

On Sunday in New Orleans, Robert Fine and I did a pro-con debate on the Texas Advance Directives Act during an ethics session of the American Thoracic Society.  There were around 150 people in attendance.  One particularly telling moment was the following.

Bob asked who thought that a PVS patient should be dialyzed.  Almost nobody raised a hand.  He then asked who thought a severely demented patient should be dialyzed.  Again, almost nobody raised a hand.  Bob finally asked (perhaps wondering if the audience was participating) who has done it or seen it done.  A majority of physicians in the room raised their hands.  There is your standard of care.

Plundering the Federal Galleon

This is a rather poetic description of modern medicine from a post, yesterday, at MDOD.  





"I am an Emergency Physician and I work in an Emergency Department that sits astride the major trade routes trafficking in the elderly and whose supporting hospital was strategically placed to command this trade and its rich plunder; bountiful cargoes of stable but chronic disease, vague complaints, and loneliness that fill our coffers with splendid treasures to rival the hordes of ancient kings. Or I dump hundreds of thousands of dollars into futile care. How I plunder the federal galleon like a modern-day freebooter, raking in the Medicare doubloons to extend the futile quasi-life of the living dead for whom death would be merciful!"