National Advisory Council for Healthcare Research and Quality: Request for Nominations for Public Members

[75 Fed. Reg. 38,819] -- Section 921 (now Section 941 of the Public Health Service Act (PHS Act)), 42 U.S.C. 299c, established a National Advisory Council for Healthcare Research and Quality (the Council). The Council is to advise the Secretary of HHS (Secretary) and the Director of the Agency for Healthcare Research and Quality (AHRQ) on activities proposed or undertaken to carry out the agency mission including providing guidance on (A) Priorities for health care research, (B) the field of health care research including training needs and information dissemination on health care quality and (C) the role of the Agency in light of private sector activity and opportunities for public private partnerships. 

Seven current members' terms will expire in November 2010. To fill these positions in accordance with the legislative mandate establishing the Council, we are seeking individuals who are distinguished: (1) In the conduct of research, demonstration projects, and evaluations with respect to health care; (2) in the fields of health care quality research or

Blumenauer to Announce Revamped End of Life Care Legislation

This afternoon, Congressman Earl Blumenauer (D-Ore) will announce the introduction of bipartisan legislation that would provide a Medicare and Medicaid benefit for voluntary patient-physician consultations regarding advance care planning. These consultations will ensure that individuals' values and goals for care are identified, understood, and respected.

Blumenauer introduced similar legislation was in 2009, which former Governor Sarah Palin warned would lead to the creation of "government death panels." The bill passed the House of Representatives as part of the health care reform bill, and Palin's assertion was named "Lie of the Year" by PolitiFact.

The legislation also provides grants to states to create Physician Orders for Life Sustaining Treatment (POLST) programs, allows portability of advance directives across states, and requires standards to include completed advance care planning documents within a patient's electronic health record, increasing the likelihood these documents are kept up-to-date and available. The Personalize Your Care Act will be introduced when Congress returns from recess. 

Donald Berwick Now Heads CMS

Today, President Obama appointed Donald Berwick the administrator of the Centers for Medicare & Medicaid Services.  

Obama appointed Berwick under a recess appointment, allowing him to bypass the Senate confirmation procedures. Under the recess appointment, Berwick can stay in his position through the end of 2011.  Berwick had been facing a difficult nomination fight as Republicans have attacked him since he was nominated for the post in April, claiming he supports health care rationing. 

EXTRAORDINARY MEASURES? HOSPITAL WANTS RIGHT TO DENY THEM

From the July 2010 Medical Malpractice Law and Strategy 27(10): 5.

In the case of Betancourt v. Trinitas Regional Medical Hospital, A-3849-08, a New Jersey appellate court is being asked to decide for the first time whether hospitals should be permitted a say in whether extraordinary measures are employed to keep comatose patients alive.  In the suit, the hospital claims that “compelling a hospital and its independent physicians to provide medical services that are contrary to recognized standards of care to a moribund permanently vegetative person which will do nothing more than prolong an inhumane, painful death” is inconsistent with state law. The case arose after 72-yearold Ruben Betancourt suffered brain damage after accidentally removing his own ventilating tube following an operation. After he had spent a year in a persistent vegetative state, Betancourt's daughter became concerned that his doctors were unilaterally making medical decisions for him, such as by discontinuing his dialysis and issuing a “Do Not Resuscitate” order.  She therefore went to court and was appointed guardian. The hospital appealed. In May 2009, before oral argument at the Appellate Division, Betancourt died. Now the plaintiff wants the case dropped as moot, while the hospital wants it to go forward, arguing that the appellate court should hear the case because it “presents issues of grave public importance.” 

Studholme Responds to Codey and Ryan

The series of op-eds concerning the Betancourt v. Trinitas Hospital case keeps growing.  Today, Anne Studholme (counsel for American Association of People with Disabilities, Disability Rights New Jersey, the National Spinal Cord Injury Association, the Center for Self-Determination, the National Council on Independent Living, Not Dead Yet and ADAPT) responds, in The Record to an earlier column by hospital amici Patricia Codey (NJ Catholic Healthcare Partnership) and Elizabeth Ryan (NJ Hospital Association).

A Graphic Illustration of One Risk Posed by TADA

There are good reasons for TADA being crafted just the way that it is.  Nevertheless, it does present a risk that some Texas ethics committees will not deal with the conflict as framed (e.g. as a sword fight, as a communication breakdown).  Rather they may succumb to the temptation to just pull out the trump card  (e.g. a pistol, a 166.046 process) that the state legislature has given them.

Ira Byock on being "Overtreated to Death"

People are actually now sicker as they die, and some find that treatments become a greater burden than the illness was. On Wisconsin Public Radio's Ideas Network on June 30 (about an hour with direct MP3 download), Ira R. Byock MD, Director of Palliative Medicine at Dartmouth-Hitchcock Norris Cotton Cancer Center and Professor of Anesthesiology and Community & Family Medicine at Dartmouth Medical School, discussed the trend of people being "overtreated to death."

How to treat patients who want everything

Lyle Fettig, who normally posts at Pallimed, has a post at KevinMD on how to treat patients who want everything.  The post is a nice review and analysis of a recent article by Quilll, Arnold & Back in the Annals of Internal Medicine.  Fettig likes Quilll, Arnold & Back's six-step process, finding that "The most essential part of this process is to refrain from interpreting the patient’s request to 'do everything' as a blanket consent for any medical therapy available to humankind. Rather, such a request should be considered akin to a clinical sign that requires more investigation"

L. Syd M Johnson on Appel on Betancout v. Trinitas Hospital

L. Syd M Johnson, a research fellow in neuroethics at Novel Tech Ethics, Dalhousie University, has an article in today's Bioethics Forum (The Hastings Center), titled "Withholding Care from Vegetative Patients: Financial Savings and Social Costs."  


Johnson responds to Jacob Appel's recent argument in the Huffington Post that medical resources should not be devoted to PVS patients.  He first notes the misdiagnosis rate.  He then notes the fMRI studies that suggest PVS patients have some awareness.  Finally, Johnson explains why there would be no much cost savings from denying treatment to PVS patients.  


I think that these are just the right arguments to make.  But I am not convinced.  First, we accept a rate of error in all sorts of analogous treatment decisions.  Even with respect to death itself, we'll declare death after 75 or 90 seconds even though there might be spontaneous resuscitation of cardiopulmonary function.  Second, the fMRI studies are far too preliminary to ground big shifts in policy and procedure.  Third, the initial cost savings of ceasing treatment of PVS patients will be nearly $8 billion (30,000 x $250,000).  The subsequent annual savings will be lower.  But adopting Appel's rule will be an important precedent that will help usefully shape other procedures and guidelines.

NICE Denies Coverage for Life Extending Kidney Cancer Drug

This morning's Telegraph reports that NICE has turned down the kidney cancer drug called everolimus because it does not offer enough benefit to patients to justify the cost.  An estimated eight week cycle of treatment would cost £5,264 per patient and could extend life by 3 months.  The cost per QALY is almost double what NICE would normally allow.


Sir Andrew Dillon, Chief Executive at NICE said: “A diagnosis of renal cancer is devastating for patients and those who care for them and we are disappointed not to be able to recommend everolimus as a second line treatment option.  "However, we to have ensure that the money available to the NHS is used to best effect, particularly when NHS funds, like the rest of the public sector, is under considerable financial pressure.”

2010 AMBI Clinical Ethics Conference – New York’s 2010 Family Health Care Decisions Act and Its Impact at the Hospitalized Patient’s Bedside

SAVE THE DATE!

2010 AMBI Clinical Ethics Conference – “New York’s 2010 Family Health Care Decisions Act and Its Impact at the Hospitalized Patient’s Bedside”

November 19, 2010

The Alden March Bioethics Institute at Albany Medical College

Albany, New York

The 2010 AMBI Clinical Ethics Conference is a conference in which keynote speakers, guest faculty and conference participants gather at the Alden March Bioethics Institute in Albany, New York, for a full day of engaging discussions and breakout sessions revolving around a single theme.  This year’s theme explores the new Family Health Care Decisions Act and its impact at the hospitalized patient’s bedside.  The target audience for this conference includes: institutional ethics committee members, physicians, nurse practitioners, physician assistants, nurses, pharmacists, social workers, chaplains, hospice staff, case managers, lawyers, healthcare facility administrators, and others interested in healthcare decision making.

Keynote Speakers: 

• Robert N. Swidler, MA, JD -- Assistant Professor, Department of Medical Education, Albany Medical College; Vice President and General Counsel, Northeast Health
• Alicia Ouellette, JD -- Associate Professor of Law; Professor of Bioethics at Union Graduate College/Mt. Sinai School of Medicine Program in Bioethics
• Thaddeus Pope, JD, PhD -- Associate Professor of Law, Widener University School of Law

Conference Schedule:

FRIDAY, November 19, 2010

7:45-8:25 a.m.              Registration

8:25-8:30 a.m.              Welcome & Introduction

8:30-9:30 a.m.              Robert N. Swidler, MA, JD

9:30-9:45 a.m.              Break

9:45-10:40 a.m.           Alicia Ouellette, JD

10:40-11:35 p.m.        Thaddeus Pope, JD, PhD

11:35-12:20 p.m.         Lunch

12:20-1:10 p.m.           Breakout Session I

1:10-2:00 p.m.             Breakout Session II

2:00-2:15 p.m.             Break

2:15-3:15 p.m.              Bruce D. White, DO, JD, Wayne Shelton, PhD, Shelia Otto, BSN, MA, Heather Frenz

3:15-3:30 p.m.             Concluding Remarks, Evaluation

Grandmother NOT Allowed to Die at Home

While a great number of individuals who would prefer to die at home do not actually do so, rarely is the thwarting of such preferences so graphic as in the case of Lona M. Varner.  

El Reno, Oklahoma police officers arrived to take the 86-year-old to the hospital against her will.  Varner ordered officers out of the apartment, telling them that she wanted to die.  She grabbed a kitchen knife and told officers, "She was in control of her life."  Officers shot her with a Taser while she was in bed connected to an oxygen tank.  (KOCO News)

Last-Ditch Efforts Can Drag Out Suffering

The following statistics are well-known among ethics, palliative care, and critical care professionals.  I am glad they are being reprinted in newspapers across the country.

"More than 80 percent of people who die in the U.S. have a long, progressive illness such as cancer, heart failure or Alzheimer's.  More than 80 percent of them say they want to avoid hospitalization and intensive care when they are dying, according to the Dartmouth Atlas Project, which tracks health-care trends."

Yet that's not what is happening:  

• "The average time spent in hospice and palliative care, which stresses comfort and quality of life once an illness is incurable, is falling because people are starting it too late. In 2008, one-third of people who received hospice care had it for a week or less, says the National Hospice and Palliative Care Organization."
• "Hospitalizations during the last six months of life are rising: from 1,302 per 1,000 Medicare recipients in 1996 to 1,441 in 2005, Dartmouth reports. Treating chronic illness in the last two years of life gobbles up nearly one-third of all Medicare dollars."
• "People are actually now sicker as they die," and some find that treatments become a greater burden than the illness was, said Dr. Ira Byock, director of palliative care at Dartmouth-Hitchcock Medical Center. "There are worse things than having someone you love die," he said.