Supreme Court to Increasingly Confront End-of-Life Legal Issues?

Yesterday, Melvin I. Urofsky, Professor of Law & Public Policy; Professor Emeritus of History, Virginia Commonwealth University; and Supreme Court Expert, Holds a News Briefing at the Washington Foreign Press Center on the Kagan confirmation hearings.  The following is a brief excerpt from Roll Call:

"We should be asking about end-of-life options. . . . America is an aging nation in a sense. There's a lot of young people, but the -- one of the largest growing cohorts are people in their 80s. And I know that just from some medical issues I've had in the last few years, it is very expensive to have a hip replacement or to have retinal surgery or to have other things. And people in their 80s have more medical issues than do people in their 20s. And he said these are the issues we ought to be asking, because the Court's docket for the next 10, 20, or 30 years is going to be much different than it was for the last 30 years.”

EMTALA Will Continue to Apply to Inpatients in the 6th Circuit

Due both to Court of Appeals interpretations and to CMS regulations, EMTALA does not generally apply to patients who are admitted for at least an overnight stay.  But the U.S. Court of Appeals for the Sixth Circuit (Michigan, Ohio, Kentucky, Tennessee) held that EMTALA does apply to inpatients.  Many expected the Supreme Court to take the case to clarify the statute.  But, yesterday, the Supreme Court denied certiorari.  That leaves the 6th Circuit ruling in place, and unfortunately non-uniformity across the United States.  As I blogged before, this ruling could (in many circumstances) materially limit the ability of hospitals in those four states to unilaterally refuse inappropriate treatment. 

Medical Futility in India

Critical care specialists in the United States have challenges providing medically appropriate end-of-life treatments.  Interestingly, very similar issues have been articulated in India.  The Calcutta Telegraph reports (with similar analysis published by the Indian Society of Critical Care Medicine):

Critical care specialists have urged the government to legislate on when doctors may legally withhold or withdraw life support to patients in terminal stages of illnesses but, they say, there has been little progress.  “There’s been virtually no debate in India on the issue of withholding or withdrawing life support,” said Raj Kumar Mani, past president of the Indian Society of Critical Care Medicine.  “Under the law, we can’t withhold treatment, but nor can we force treatment on an unwilling patient,” said one critical care specialist. . . .

 The Indian Society of Critical Care Medicine . . . members say limiting life support is common in the developed countries.  Studies in the US and Europe have suggested that withholding or withdrawing life support preceded in 9 in 10 deaths of patients in critical care units. A study from Mumbai three years ago had shown a corresponding figure of only two in 10.

Weisberg's Death with Dignity House

pp

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Sooner or Later: Restoring Sanity to Your End-of-Life Care

Damiano de Sano Iocovozzi had the following post at the AMA Facebook page a few days ago:

At present, the USA is still spending 25% of the health care dollar on medical futility for those insured and uninsured patients who can no longer benefit from critical care anything in the nation's ICUs. What normally happens is this: as a patient's disease progresses or is deteriorating due to old age, an ambulance is summoned. Without an advance directive, the patient may get intubated, placed on life support, maybe he is coded, transferred to intensive care where an expensive but futile fool's errand begins and costs about $10,000 per day. A steady stream of specialists marches in and out of the room 24/7 ordering a la carte a list of medically futile diagnostics, therapies, respiratory care orders, advanced pharmaceuticals, maybe a trip to surgery or to the cath lab, critical care nursing and more specialists. As time goes on and the patient's disease continues to deteriorate his status, a hospital-acquired infection sets in, kidneys shut down, dialysis begins, more blood draws to measure levels of heavy antibiotics that will not cure, help usher a remission or a reprieve from old age. A new rush of drips is started to keep the blood pressure stable as the bacteria proliferate. Usually death is preceded by another code blue where the poor unfortunate is literally shocked on the thorax, given CPR and the worst part, cannot even get to say good bye due to a large tube from mouth to lungs. So, Mr. Klein, while you columnists diddle on about nothing, you have missed a stampede of elephants telling you that enormous waste is still happening, at billions of dollars on futile medicine that deprives many of dignity and saying good bye. The better alternative is to grant immediate medicare or medicaid to pay for visiting hospice nurses at about $100 per day for the uninsured terminally ill. For the insured terminally ill, wouldn't it also be enormously beneficial if they too got the hospice option early on, saving them the indignity of the ICU?

Mr. de Sano Iocovozzi is promoting his new book, Sooner or Later: Restoring Sanity to Your End-of-Life Care. The book site's synopsis states:

It offers the reader a safe place to help process the turbulent emotions during the diagnosis phase and remain sane, rational and in control. In large print for easy reading, the book includes pertinent questions to ask specialists. It is written in a way reader and provider understand, empower patients and their families to seek the appropriate level of care. To date, no other book offers the information and tools to take control and make good decisions to maintain the best quality.

End-of-life research study seeking some participants

From the Cumberland Times-News (WV):



Do you have a story to tell? Be part of an important research study about primary decision makers who made critical decisions for a family member who became suddenly ill or injured. Are you 18 years of age or older? Were you the primary decision maker for a family member who was not able to state their wishes regarding life support, such as ventilators, feeding tubes, or CPR? Did you make decisions to discontinue life support treatment over six months ago?



If you answered yes to these questions, you may be eligible to participate in this study. The purpose of this study is to gain a better understanding of what families need when they are making decisions to stop life support at the end of life for their family member. This information will help nurses and physicians assist families when they are making decisions similar to yours. The study location will be at a place convenient for you, such as your home, the library, or the telephone. The time will be at a time convenient for you. Audiotaped interviews will last about 60 to 90 minutes. IRB Approval: This project has been reviewed and acknowledgement is on file at WVU Office of Research Compliance



Who is conducting this study: Jean M. Seifarth, MS, RN, a West Virginia University School of Nursing doctoral student. Contact information is 301-729-5035 or jseifarth@wmhs.com.

Fighting over Grandma's Last Dime - Hospitals, Hospice, Weisberg, and Minelli

People spend a lot of money on medical care at the end of life.  And there is no shortage of commercial interests aiming to get a piece of that huge pie.  While hospice best meets the needs and preferences of most dying patients, some hospitals deliberately do not make a referral in order to continue capturing high reimbursement for ineffective aggressive interventions.  

This week, we see an apparent market in the assisted suicide space.  The papers report that Dignitas founder Ludwig Minelli is a millionaire.  This may be a result of the fact that the cost of a simple suicide at Dignitas has risen from £1,800 in 2005 to £4,500.  

Apparently, looking to duplicate this "success," Portland psychiatrist Stuart Weisberg planned to open Dignity House.  Standard fees are $3200 and a premium package is $4400.  (The website does state "Dr. Stuart Weisberg is not creating this visionary service for financial profit. ")  But, on Thursday, the Oregon Medical Board suspended Weisberg's license.  

Beyond Futility in Pediatrics: Alleviating Moral Distress for Family and Staff

A group of providers from Methodist Children's Hospital in San Antonio, Texas is presenting "Beyond Futility in Pediatrics: Alleviating Moral Distress for Family and Staff" at NHPCO's 11th Clinical Team Conference in Atlanta in September 2010.  Here is the description:

The term "medical futility" emerged in the 1980s to describe situations in which families demand medical treatment which caregivers deem inappropriate. These cases create significant moral distress for healthcare providers and families. This distress may be more pronounced in pediatrics due to the nature of childhood illness and the complexity of family dynamics. Previous efforts to resolve futility conflicts focused on defining futile treatment and deciding who has decision-making authority. When these efforts failed, many hospitals (and some state legislatures) adopted a procedural approach to conflict resolution. While this approach has merits, it fails to address the moral distress inherent in these conflicts. As a result, families may feel abandoned and caregivers burned out. In this workshop, we describe an interdisciplinary approach to resolving conflicts involving end-of-life care in pediatrics. This approach encourages effective communication early in the conflict and has enabled our institution to avoid implementation of state futility law.

I know that many Texas providers that do use the TADA mechanism also employ an interdisciplinary approach and also encourage effective communication early in the conflict.  But they still end up with some intractable conflict.  (Interestingly, even SSM's presentation "A More Effective Approach" for the Catholic Health Association yesterday admitted a residual rate of intractable conflict.) It is for those few remaining cases for which implementation of the law is most appropriate.  Of course, nothing stops a facility from moving directly to formal procedures.

Bernard Freedman on Betancourt v. Trinitas Hospital

Today, Santa Monica attorney and bioethicist Bernard W. Freedman posted a commentary reacting to coverage of Betancourt v. Trinitas Hospital in the Wall Street Journal and the Huffington Post.  

Freedman makes a few critical points.  First, he writes that “neither this case or the appeals court opinion is a ‘vehicle’ to establish policy. Courts do not make policy; rather they apply and interpret the law.”  While this is generally right, it may not be true here.  First, courts do make policy in those areas where legislatures fear to tread.  Second, New Jersey courts have a record of policymaking. 

Second, Freedman writes that “doctors practice medicine they do not make personal decisions for other people. Nor do courts.”  I agree with this.  This is the position of the family whose side I supported in the litigation.

Third, Freedman writes that “the appropriate question that should be before the court is whether or not the surrogate decision maker, in this instance Mr. Betancourt’s daughter, was actually carrying out the duties and responsibilities of a surrogate.”  This is an issue in the case that was briefed on appeal.  Freedman does make an extended argument that the evidence suggests the surrogate was not fully informed.  This indicates deficiencies in the clinical consultation and ethics committee processes, highlighting the inappropriateness of the court deferring to these mechanisms.  

The Topography and Geography of U.S. Health Care Regulation

"The Topography and Geography of U.S. Health Care Regulation," my review of Rob Field's Health Care Regulation in America: Complexity, Confrontation, and Compromise, was just published in the latest issue (38:2) of the Journal of Law Medicine and Ethics.

Compassionate Care or Death Panel: The Dilemma of Futile Treatment in the ED

At the American College of Emergency Physicians September 2010 scientific assembly in Las Vegas, is a two-hour session titled "Compassionate Care or Death Panel: The Dilemma of Futile Treatment in the ED."  Here is the description:

We have all read the articles about “Death Panels.” The dilemma of futility in emergency treatment contributes to emergency providers’ emotional stress, primarily when people have unrealistic expectations. Do we have a moral and ethical obligation in regards to futile care? There needs to be fundamental change in how we practice, but how do we get there? During this course, the moderator will present cases to illustrate the dilemma of futility. The panelists will role-play, demonstrating the professional challenges arising from requests for futile treatment. They will illustrate techniques to define and communicate appropriate expectations in patient care to family and other professionals.  Suggested strategies for implementation into your ED and community will be summarized in order to assist you in changing local medical and community standards.

Objectives:

1. Debate when treatment in the emergency department is futile.


2. Assess your professional role in determining futility.


3. Demonstrate communication of appropriate expectations to families and other health care providers.


4. Suggest strategies when confronting futility in everyday practice that can be implemented to change your local medical and community standards.

Studholme on Appel on Betancourt v. Trinitas

This is a guest post by Anne Studholme, Manewitz & Studholme, LLC, Princeton, NJ  

As a lawyer representing amici in the Betancourt case, I was interested to read Jacob Appel's comments in the June 23rd Huffington Post.  I have the following reply:

1.  Appel characterizes the pro-Betancourt amici as "fringe."  That's a slur.  I represent the following groups who submitted a joint brief and oral argument as amici curiae in Betancourt:  Not Dead Yet, ADAPT, the Center for Self-Determination, the National Spinal Cord Injury Association, the National Council on Independent Living, the American Association of People with Disabilities, and Disability Rights New Jersey.  This is a broad-based coalition operating well within the dominant polity.  (Agudath Israel of America and the Rabbinical Council of America, the other two family-side amicus groups, are hardly "fringe" either.  The RCA, for example, represents over 1,000 Orthodox rabbis in this country, and AIA represents the yeshivas.)

2.  The diagnosis of Persistent Vegetative State was based on two cursory, ten-minute examinations.  Contrast this with the extensive examinations, including second opinions, which Appel supports and which New Jersey law already requires in these cases.  Further, Mr. Betancourt's attending physician argued that life-support should be terminated because he was certain that Mr. Betancourt was suffering pain.  This would be inconsistent with a PVS diagnosis as traditionally understood.  Under New Jersey law, we have one set of procedures for addressing the case of a person who has been confirmed to be incapable of experiencing sensations (e.g., Karen Ann Quinlan), and another for someone who may well be suffering pain (e.g., Claire Conroy.)  On the record made this case, the outcome would have been the same either way, but policy prescriptions based on claims that this is a "PVS" case may miss the mark.

3.  Appel seems to share widespread unfamiliarity with the constraints on surrogate decisionmakers in New Jersey.  Upon an appropriate showing (not made in this case), doctors may be appointed guardians.  Upon a showing which meets an "objective" standard, life support may in certain cases be terminated in order to end very severe, intractable agony.  In all events, the surrogate is bound to make decisions based upon what he or she best perceives would be the decisions of the person at issue were that person able to communicate.  That's not to say this is always what happens, but it is the legal requirement.  A showing that the surrogacy is being abused can result in a replacement surrogate or guardian being appointed.  That showing was not made by the Trinitas doctors when they had the opportunity to do so in court.

4.  Appel also touched on the question as to how many people now are living with a well-founded PVS diagnosis and concomitant old age or very poor health.  Other than vague references in the medical providers' briefs to potentially thousands of cases, there has been no evidence introduced on this point.  Since those briefs seem to include people who are very old, OR very sick, OR in PVS, it is hard to tell what actual population is being described.  Until, if ever, we reach the point where our society truly confronts unsupportable costs for sustaining these lives, a prudent Court would not base sweeping changes in life-or-death and bedrock civil-rights law on a hypothetical future.  

5.  Appel forthrightly admits that he would have the Court uproot the restraints on taking away life support and move them from actual brain death to unconsciousness with no likely hope of recovery-- a momentous step.  Until now, the legal foundation upon which another person could disconnect someone's life support was the principle of self-determiantion-- that the act was in accordance with the person's will, not in some paternalistic view of what was "best" for the person, or self-centered view of what was cheapest for society.  Appel refuses to couch the "termination" in "dignity" cant, but may misunderstand that the action taken by Trinitas here was removal of the port by which Mr. Betnacourt had received dialysis, not a refusal to provide him with dialysis in the future-- an important legal distinction.  The court directed that the port be reinstated to preserve the status quo.  It did not order additional treatments.

6.   In this case, at least, "so-called 'pro-life'" organizations, as Appel puts it, did not support the family.  Perhaps most notably, the Catholic Healthcare Partnership of New Jersey instead supported Trinitas' claim that doctors should have the last say in all situations as to when to terminate life-sustaining care.

7.  As Professor Pope has noted, the Trinitas doctors claimed it would be unethical to keep Mr. Betancourt alive.  It was the existence of this putative standard upon which they, and presumably anyone who would entrust doctors with unilateral decisions in these cases, would rest.  But Pope has shown that there is so much disagreement within the medical community on these questions  that a general standard cannot be elucidated, at least not now, and not in New Jersey.  Appel's suggestion that if a doctor could be found to keep Betancourt alive, he would be welcome to do so, goes against the Trinitas position that keeping Betancourt alive is unethical.  

8.  Finally, in my view, this case did turn on money, though Trinitas' CEO claims not.  But I wonder why it is that, when discussing the costs of keeping someone in Mr. Betancourt's situation alive-- costs that are primarily for nursing and attendant labor, not for the relatively simple dialysis, feeding tube, and respirator machines-- commentators seem always to pit the costs of care dollar-for-dollar against MEDICAL expenditures in other areas.  In part, this is due to the way in which Medicaid dollars are allocated.  But that is essentially circular.  WHY is is that long-term care dollars are seen as competing with acute-treatment dollars (or, as Appel would have it, basic R&D)?  Appel has remarked on this category confusion elsewhere: how do we decide what is and what is not to count as a medical service?  

Cost Control as Secondary Goal of Comparative Effectiveness Research

The Health Industry Forum held a conference yesterday:  Shaping Convergent Strategies in Comparative Effectiveness Research.  Sara Hansard at BNA reports that Douglas Hadley, director of CIGNA's coverage policy unit, said that while costs should not be an initial goal of comparative effectiveness research, they should be considered if treatment outcomes prove to be identical.  





To be sure, the primary stated purpose of PPACA's  Patient-Centered Outcomes Research Institute is the improve health outcomes.  But Gail Wilensky, a senior fellow with international health foundation Project HOPE, said "there is an important secondary purpose, which is regarding comparative effectiveness research as a building block in learning how to spend smarter."

You Need Not Strive Officiously to Stay Alive

Though . . . need'st not strive

Officiously to keep alive





Arthur Hugh Clough

The Latest Decalogue 

[a twist on the 10 commandments]

The Limits of Prognostication - Hampered Outcome Prediction Accuracy Warrants Caution

Claudia Goettler and colleagues have a great article in the new Journal of Trauma. They review previous studies showing that while scoring systems like APACHE are highly accurate, they still have a high false positive rate.  That is, they predict that patients to die who actually survive.  Scoring systems work well to predict outcome in patient populations, but are less useful for driving individual patient care.  That leaves physicians with the task of judgment and prognostication.

In their study Goettler and colleagues found that the "educated guess" is better at outcome prediction for the individual patient than SOFA, APACHE, APACHE II, or TRISS scoring.  Still, they "recommend caution. . . .  Large outcome studies of many specialized patient populations are required to determine the patients who actually have a survival likelihood and are receiving futile care. . . .  Clearly, we all want to save as many patients as possible but we do not want to prolong the dying process in those who cannot be saved."

Interestingly, in a roundtable discussion appendix to the article, Dr. Goettler (from Greenville, North Carolina) notes that "in our region we are essentially in the buckle of the Bible belt and withdrawal of support in our patient population is extraordinarily uncommon even in patients who have been given a very, very poor prognosis."

Appel on Betancourt v. Trinitas Hospital

Today, in the Huffington Post, bioethicist and medical historian Jacob M. Appel strongly and eloquently defends the hospital's position in Betancourt v. Trinitas Hospital.  He rightly observes that the case “offers an excellent vehicle for the courts to clarify the circumstances under which hospitals may override patients and families.”

Appel links the issues in the case to the nomination of Donald Berwick and the broader rationing debate:  “Every dollar exhausted on patients who will never wake up again is a dollar not devoted to finding a cure for cancer. While the visible victims may draw the headlines and attract indignant protests from so-called "pro-life" organizations, the invisible victims are people like you and me who will suffer from diseases that are never cured because funds are being poured down a healthcare sieve in order to maintain permanently-unconscious bodies on complex and costly forms of life support.”

Appel also defends a standard like the “minimum goal” of the Manitoba College of Physicians and Surgeons:  “In essence, the Betancourt court can decide that physicians and taxpayers only have a duty to provide unlimited care to patients who have a meaningful chance of returning to consciousness. Let us make no mistake about what this would mean: It would mean declaring that the lives of PVS patients are worth less than those of others. Rather than shying away from this outcome, progressive bioethicists should have the courage to acknowledge and to embrace this proposition.”

Brave cancer fighter inspired wide array of friends

My maternal aunt was an inspiration personally.  But as her enlivening and exhilarating path over the past several years relates to the ethical and policy discussions on this blog, I am posting her obituary from today's Pittsburgh Post-Gazette (I think the hard copy of the paper ran a picture different than the one I pasted below).

Obituary: Diane Ruse-Rinehart Bellotti / Brave cancer fighter inspired wide array of friends

July 27, 1957 - June 16, 2010

Tuesday, June 22, 2010

By Kaitlynn Riely, Pittsburgh Post-Gazette

For years, Diane Ruse-Rinehart Bellotti sent e-mails to an ever-widening circle of family and friends, passing on updates every few weeks about the joys, struggles and happenings of her life.

Whether they were filled with news about a trip to Italy, or gave the latest in her long battle with ovarian cancer, the e-mails focused on the positive, and Sue Lauer, a friend of Mrs. Bellotti's for over a decade, said they usually made her laugh.

For her 50th birthday, Mrs. Bellotti brought together the virtual community she had created, the dozens of friendships she had maintained over the years through her jobs at Mellon Bank, Paychex and ADP, her work with Mt. Lebanon sports teams and the medical professionals she befriended.

At the birthday party, she provided name tags so all her friends could connect faces with the names they'd seen for years on their e-mails.

Mrs. Bellotti died last Wednesday at the age of 52 from respiratory failure. At a memorial service next month, Ms. Lauer said, her family and friends, brought together by Mrs. Bellotti's years of messages, will again don name tags.

"My sister loved people, and one of the things she did is she met as many people as possible and tried to get to know them, and tried to learn something from everyone," said Robin Ruse-Rinehart Barris, Mrs. Bellotti's older sister, who lives in Los Angeles.

Born July 27, 1957, in Scott, Mrs. Bellotti was the second daughter of Robert E. Ruse, a stock broker who died before her birth, and Marian Patton Ruse, a local fashion model. A few years later, her mother married Robert Rinehart.

After she graduated from Montour High School, Mrs. Bellotti worked briefly as a cosmetologist, then went into finance. She met her husband, Thomas Bellotti, at Primanti Brothers, and left Pittsburgh for three years as he went to school in Houston and took a job in Baltimore.

They moved back to Pittsburgh and settled in Mt. Lebanon. In 1996, when her son, Thomas Bellotti Jr., was 3 years old, Mrs. Bellotti was diagnosed with ovarian cancer. Instead of despairing, she told friends she was determined to set the world record for surviving ovarian cancer.

For 14 years, she was in and out of hospitals as she underwent multiple abdominal surgeries, dozens of rounds of chemotherapy and months of radiation therapy. She participated in clinical trials at the National Cancer Institute in Bethesda, Md., and her cancer went in and out of remission. The whole time, her sister said, she lived by the maxim, if someone invites you to do something that sounds fun, do it.

With or without hair, Mrs. Bellotti went parasailing, parachuting and jet skiing. She rode zip lines from mountaintop to mountaintop in the Dominican Republic, went to the 2006 Super Bowl in Detroit and to California to attend movie premieres with her sister. She was a loyal cheerleader for her son and his friends at his sports games.

Her cancer had been in remission for a year when she was diagnosed with treatment-related leukemia in the spring. She died from respiratory failure after a lung infection, but Mrs. Barris said she is proud her sister's death certificate does not say ovarian cancer.

She is survived by her sister, husband and 17-year-old son. A memorial service is planned for late July. Those interested in attending may send an e-mail to celebratediane@earthlink.net. The family suggests donations to the Humane Society or other animal organizations.

Reining in End-of-Life Costs Won't Be Easy

Stella Fitzgibbons, a Houston physician, has an op-ed in the LA Times in which she complains about the cost of futile treatments at the end of life.  

“Consider the case of a man I’ll call Mr. A. At the age of 80, he is admitted to intensive care after a huge stroke. He also has pneumonia and kidney failure. He is too sick to tell us his views on aggressive care at the end of life, but his family is happy to fill the void. They insist we use every tool at our disposal to prolong his life, despite brain scans making it clear that he will never again be able to walk, talk or feed himself. The total bill for the last month of life? Many tens of thousands of dollars.”

“Americans have spent the last several decades hearing that all you have to do is be a little assertive to get top-of-the-line treatment. . . .  Some efforts are being made to control costs. Hospitals keep an eye on “unnecessary days,” and medical personnel are becoming experts on “cost-effective care.” But the savings of such efforts are insignificant compared with what we spend on futile care at the end of life . . . .”

“[W]e cannot afford to give every patient and family all they want, or to provide four-star medicine when the three-star version is almost as likely to succeed.”

The Futility Dilemma: A More Effective Approach

THE FUTILITY DILEMMA: A MORE EFFECTIVE APPROACH

WEBINAR -- June 24, 2010   11 a.m. – Noon CT

Register Today!

CHA member — $50

Other registrants — $60

CHA MEMBERS: MAKE SURE TO LOG IN TO RECEIVE MEMBER PRICING!

If you do not have an account, click here to sign up. For questions or concerns, please contact: servicecenter@chausa.org or (800) 230-7823.

OVERVIEW

Requests for treatment that are deemed medically inappropriate, often referred to as requests or demands for "futile treatment," constitute one of the most intractable ethical challenges in the care of patients. Various attempts to address the issue go back well over 20 years, yet it seems as if very little progress has been made in preventing, reducing, or successfully resolving these situations.

This webinar will describe the efforts of SSM Health Care in St. Louis to move beyond unsuccessful approaches to the challenge of "futility" and to develop an alternative approach based on an understanding of the root causes of requests for medically inappropriate treatments. It will also report initial results of a pilot program.

Objectives

1.  Identify three generations of efforts to deal with "medical futility."

2.   Explain SSM Health Care's evolution in its attempts to address requests for medically inappropriate treatment.

3.  Describe SSM Health Care's pilot program, tools and initial results.

Who Should Participate

Ethicists, mission leaders, physicians, clinical leaders, nursing managers, CEOs, executive teams, sponsors, ethics committees and pastoral care.

Register Today!

CHA member — $50

Other registrants — $60

CEUs

Nurses: This continuing nursing education activity was approved by the Missouri Nurses Association, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation for 1.0 contact hour.

Nursing Home Administrators: This educational offering has been reviewed by the National Continuing Education Review Service (NCERS) of the National Association of Boards of Examiners of Long Term Care Administrators (NAB) and approved for 1.0 participant hour.

Pastoral Care: The National Association of Catholic Chaplains (NACC) has approved this program for 1.0 continuing education hours.

Canadian Parliamentary Committee on Palliative and Compassionate Care (PCPCC)

I missed the announcement of its formation back in April 2010, but Canada now has a federal Parliamentary Committee on Palliative and Compassionate Care (PCPCC).  That seems like a remarkable and commendable achievement.  The goals of the committee include:

• To research and identify how to improve and increase the availability of excellent palliative care in Canada.


• To find ways to ensure that every person with a disability is treated with respect and dignity.


• To research and learn how to implement an effective National suicide prevention strategy.


• To recognize the real concerns and problem of elder abuse in Canada and understand how to protect vulnerable elderly Canadians.

Interestingly though, the co-founder explained another key motivation for the new committee:  "Health care costs continue to rise . . . demographics dictate that an increasing proportion of Canadians will enter their golden years over the next decade. They will require more expensive forms of care, and more of it.”

Still, the committee heard this week from the Council of Canadians with Disabilities.   Among other things, Council members expressed concern over the Manitoba College of Physicians and Surgeons Statement on Withdrawing and Withhold Life Sustaining Treatment.  They explained that the "minimum standard" criteria permits too much discretion and is subject to bias and abuse against those with disabilities.

Billboard: "My life my death my choice"

I am glad they are putting up these signs around the country.  It will prompt still much-needed reflection and conversation.  "We don't encourage anybody to end their life, we don't provide the means for them to do so, and we don't physically assist them in any way. What we do is give them that compassionate support because we don't think anyone in that situation should have to die alone," says Frank Kavanaugh from the Final Exit Network.

National Healthcare Decisions Day 2010

Two months after NHDD 2010 (April 16th), with 25% of participants reporting, the NHDD executive board is reporting updated numbers:

• 347,854 members of the general public were confirmed to have received advance directive information as part of NHDD.  This is more than a 350% increase over 2009.


• 582,937 facility staff members or organizational staff members received information about NHDD and/or refreshers on advance directives via email or internal newsletters, etc.  This is a 39% increase over 2009. 


• 3,855 people are known to have executed an advance directive as a result of NHDD activities.   This is a 3% increase over 2009.


• Millions of people were reached with various media coverage, both national and local. 

Brain Death - New Guidelines from the AAN

The American Academy of Neurology has issued new guidelines on the determination of brain death.  The goal of the guidelines is to remove some of the guess work and variability among doctors in their procedure for declaring brain death, which previous research has found to be a problem, said guidelines co-author Dr. Panayiotis Varelas.  (USA Today)  

Under the Uniform Determination of Death Act, followed in 50 states with minor variations in NJ, NY, and CA, brain death occurs when a person permanently stops breathing, the heart stops beating and "all functions of the entire brain, including the brain stem" cease.  While no one disagreed with that description, a 2008 study that included 41 of the nation's top hospitals found widespread and worrisome variability in how doctors and hospitals were determining who met the criteria.

Presidential Commission for the Study of Bioethical Issues

The Presidential Commission for the Study of Bioethical Issues has immediate openings for "expert consultants" to serve as project-related researchers/writers. Candidates must have demonstrable background in bioethics, excellent writing and analytical skills, a post-graduate or professional degree in a related area/field, and a firm understanding of a range of ethical, scientific, and public policy issues. 



Applications will be accepted and reviewed as received. Please indicate a preferred start date. Please send cover letter, c.v., writing samples, and references (with contact information) to: diane.gianelli@bioethics.gov 

Role Models for Dying

My local NPR station, WHYY, did a brief story titled "Blogging about Death."  The story description reads:  "Several very popular blogs have been written by people who were dying from cancer or other illnesses.  WHYY's Behavioral Health reporter Maiken Scott talked with psychologist Dan Gottlieb about our online relationship with death and dying."  





I liked Dr. Gottlieb's characterization of these bloggers as "role models" for dying.  This something that we lack.  This is something that we need.  These bloggers "teach us that dying is okay."

Studholme on Betancourt in the N.J.L.J.

I just blogged about Anne Studholme's op-ed in the popular press.  Now she has an opinion piece in the professional press, in the New Jersey Law Journal.

I especially liked this paragraph:  “Trinitas Hospital was afforded the opportunity to show that the life-sustaining care could be terminated, either under the Court's Quinlan, Peter, and Jobes decisions, which cover people who are permanently unconscious, or under the Court's decision in the Conroy case, which covers people who are capable of experiencing pain. Trinitas was found not to have made the requisite showing. They therefore want the rules to be changed so that in the future doctors will have far less trouble 'pulling the plug' on their own say-so.”

Studholme concludes her column:  “Many people with disabilities of various kinds and 'severity' are dependent on machines and human assistance to live. Many may not be 'curable.' Many may face obstacles and difficulties in advocating for themselves. Many experience what people who are not disabled perceive to be lives of limited scope. To permit such care to be removed in the name of cost savings, or of 'quality-of-life' assessments by people who, for the time being, are themselves not disabled, would go against everything our Supreme Court has stood for in its decisions up to this point.”

Jack Kevorkian and "Patholysis"

In a recent CNN interview with Sanjay Gupta, Jack Kevorkian stated that he prefers the term "patholysis" when describing the "medical procedure" he performed on at least 130 people, by his own count.  "Path means disease or suffering," Kevorkian said to Gupta.  "And lysis, means destruction," Gupta said.  "Exactly," Kevorkian answered.  "Patholysis," he repeated. "The destruction of suffering."  





I had not heard that term before.  But it is already listed in Roget's Thesaurus.  And Kevorkian was apparently using the term at least as far back as the mid-1990s.  (N.Y. Times, Dec. 5, 1995; New York Mag. Jan. 13, 1997).

Neurologist Fred Plum

Fred Plum, the 86-year-old neurologist who coined the term "persistent vegetative state" with Bryan Jennett, died on Friday.  His obituary in the New York Times is remarkable.  

In addition to "PVS" Plum also coined the term "locked-in syndrome."  And his research with Jennett led to the "Glasgow Coma Score," which remains the gold standard in determining the depth of a patient’s coma.

Famously involved with both the Karen Quinlan case and the care of Richard Nixon, Dr. Plum was an advocate for the right of terminally ill patients to determine their treatment and when that treatment should be stopped.