Where the World Finds Bioethics Mon, 03 Aug 2015 21:01:01 +0000 en-US hourly 1 Are Healthcare Profits Unethical? Mon, 03 Aug 2015 13:19:03 +0000 I recently spoke with Audiey Kao, an ethics expert at the American Medical Association. Our conversation has been released as a podcast. We talked about quite a few things, but the part I enjoyed the most involved a gentle disagreement … Continue reading

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Coerced Consent to Stop Life Sustaining Treatment Sun, 02 Aug 2015 11:08:00 +0000 Only in rare and narrow circumstances does U.S. law permit
clinicians to stop life-sustaining treatment WITHOUT the consent of the patient or surrogate.  Therefore, the focus of many policies and guidelines is on getting that consent.

Unfortunately, that consent is often not informed or voluntary.  I have written about this before (for example, here and here).

Yesterday, in the Detroit Free Press David Blumenthal discusses how some physicians refer to themselves as "The Grim Reaper”  “Oh, just give me 10 minutes with the family, I’ll convince them to pull the plug.” 

Blumenthal observes that "the situation worsens when, often for cultural or religious reasons, families decide to continue aggressive care for their loved ones even after achieving a better understanding of the prognosis and painful course of illness. In these cases, the doctor, conditioned to hammer home the bad news expecting the family to eventually relent becomes, ultimately, callous."

"Because large medical teams rotate weekly, they often each feel the need to encourage reducing treatment, frequently ignoring families who I’ve seen plead for the subject not to be brought up again."

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Last Day in Hospice [EOL in Art 83] Sun, 02 Aug 2015 09:30:00 +0000 B.D. Colen took some impressive photographs of Bill Potter at a New Hampshire hospice where he was dying of lung cancer.  The black-and-white snapshots give a glimpse not only into Potter’s final hours, but also into his family’s efforts to surround and celebrate their loved one. 

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The Personhood Problem Sat, 01 Aug 2015 14:00:19 +0000 Read More »]]> 0 Grace Before Dying – Photographs of the Hospice Program at Louisiana State Penitentiary [EOL in Art 82] Sat, 01 Aug 2015 09:00:00 +0000 0 Decision Making for Unknown & Vulnerable Patients: A Survey Sat, 01 Aug 2015 08:30:00 +0000 Please participate in this survey on medical decision making for Unknown and Unrepresented Patients.

The Community Ethics Committee (CEC) has become a valued resource for the ethics leadership of Massachusetts General Hospital, Boston Children’s and other institutions affiliated with Harvard Medical School.

Now you can provide a valuable voice to the CEC in its current study of an especially vulnerable patient population. These patients are known by various names -- unrepresented, unbefriended, adult orphans, etc. -- but the CEC refers to them as Unknown and Unrepresented Patients.

Due to dementia, brain trauma, substance abuse or other reasons, these patients at least temporarily cannot comprehend their medical situation or influence decisions. Further compounding the mystery, they have no one to speak for them, and there is no available documentation of their wishes.

Decisions that sometimes involve life-sustaining treatment can be left to overburdened courts, inadequately resourced public guardianship, or decision-making practices and biases unique to each physician, hospital or care facility. The result ranges from neglect to over-treatment, potentially harming both the patient and the moral values and integrity of doctors and nurses caring for them.

This patient population is growing commensurately with a doubling of the elder population  nationally by 2030. The conservative estimate is that 25,000 of these unknown humans die in American critical care wards annually. Most of these involve a decision to withhold or withdraw life-sustaining treatment.

How, and by whom, ought medical decisions be made for patients who cannot make their own and have no one who knows them well enough or cares enough to make it for them?

You can inform this important project by answering 10 questions in this survey. The time commitment is small, but the contribution is great.

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Nominate this Blog for the ABA Blawg 100 Fri, 31 Jul 2015 15:41:00 +0000 0 Ethics, Optics, and Medicine as Work: Backstage at Planned Parenthood Fri, 31 Jul 2015 14:54:00 +0000 0 Oliver Sacks – “My Periodic Table” Fri, 31 Jul 2015 14:18:13 +0000 0 Texas Advance Directives Act – Symposium Fri, 31 Jul 2015 10:39:00 +0000 0 Funeral Home Staff at the Hospice [EOL in Art 81] Fri, 31 Jul 2015 09:00:00 +0000 0 Ain’t the Way to Die – Awesome Video Encouraging ACP Fri, 31 Jul 2015 08:00:00 +0000 0 On the Safety Argument Against Gene Editing Fri, 31 Jul 2015 04:15:35 +0000 Read More »]]> 0 Jahi McMath – Hearing on Demurrer Fri, 31 Jul 2015 00:56:00 +0000 0 Jahi McMath – Court’s Tentative Ruling Thu, 30 Jul 2015 16:56:00 +0000 Alameda County Superior Court Judge Freedman issued the following tentative ruling on on the demurrer to the Jahi McMath medical malpractice action on which there will be a hearing this afternoon.  

This is a direct copy and paste from the court's website, except that I made the text blue and added some paragraph breaks.

This Tentative Ruling is made by Judge Robert B. Freedman On the Demurrer to Complaint by Defendant Frederick S. Rosen, M.D. ("Dr. Rosen"), filed on June 16, 2015, COUNSEL ARE TO APPEAR, in person or by CourtCall, at the hearing at 2:00 p.m. on July 30, 2015. The hearing will take place in Department 16, instead of Department 20, which is on the third floor of the Administration Building, 1221 Oak Street, Oakland. This is solely a location change for this hearing (at which Judge Freedman will preside) and not a reassignment. 

(1) As to the demurrer to the First Cause of Action for personal injuries on behalf of Jahi McMath ("Jahi"), the court is inclined to sustain the demurrer, but wants counsel to address the collateral estoppel argument in more detail at the hearing, as set forth in the court's accompanying tentative ruling on the demurrer by Dr. Rosen. 

(2) The court is inclined to drop the motion to strike the allegation as to "medical, nursing and other related expenses in the future" (Complaint, ¶ 36) as moot in light of whatever ruling the court makes on the demurrer to the First Cause of Action. 

(3) The court will address the motion to strike the language "[i]n the event that it is determined Jahi McMath succumbed" (Complaint, ¶ 44), and whether it is necessary to have a successor in interest or personal representative pursue a malpractice claim on Jahi's behalf, in the context of its determination as to the First Cause of Action. 

(4) The court intends to grant the motion to strike the inclusion of Marvin Winkfield as a plaintiff on the wrongful death cause of action as unopposed.

(1) As to the demurrer to the First Cause of Action for personal injuries on behalf of Jahi McMath ("Jahi"), the court is inclined to sustain the demurrer but wants counsel to address the collateral estoppel argument in more detail at the hearing, including (among other things) the following: 

(a) Aside from their arguments that there are "new facts or changed circumstances" and that "the public policies underlying collateral estoppel" should preclude its application here, do the plaintiffs contend that any of the traditional criteria for application of the doctrine has not been established here? Plaintiffs' argument in section B of the opposition memorandum is vague in this regard. It appears to the court, based solely on the text of the Amended Order of January 2, 2014 in Case No. RP13-707598 ("Amended Order"), that is a proper subject of judicial notice, that "the issue sought to be precluded from relitigation ... [is] identical to that decided in a former proceeding." (Lucido v. Superior Court (1990) 51 Cal.3d 335, 342.) More specifically, the Amended Order expressly states that the "issues in this case as presented by the petitioner necessarily required the court to reach the threshold issue of whether petitioner's daughter was legally dead." (Amended Order, p. 3, n. 2.) "The 'identical issue' requirement addresses whether 'identical factual allegations' are at stake in the two proceedings, not whether the ultimate issues or dispositions are the same." (Lucido v. Superior Court (1990) 51 Cal.3d 335, 342.) It also appears from the face of the Amended Order that the "issue [was] actually litigated in the former proceeding" and that it was "necessarily decided in the former proceeding." (Lucido, supra, at p. 342; Amended Order, pp. 1-19.) It also appears from the matters of judicial notice that "the decision in the former proceeding [is] final and on the merits" (Lucido, supra, at p. 342), as it resulted in a "Final Judgment Denying Petition for Medical Treatment," filed on January 17, 2014, as to which there is no evidence or argument that it is the subject of a pending appeal or should otherwise be considered non-final. Finally, there appears to be no dispute that the "party against whom preclusion is sought" - Jahi McMath - is "the same as, or in privity with, the party to the former proceeding," which was brought by Latasha Winkfield (a plaintiff herein) as Jahi's mother. (Amended Order, p. 1; Final Judgment, p. 1; Lucido, supra, at p. 342.) 

(b) Aside from the order and judgment in the prior case, there is also an official death certificate issued by the County of Alameda, of which Dr. Rosen has requested judicial notice. The court believes this is a proper subject of judicial notice, as the matter sought to be noticed is not a fact such as the time or cause of death but the very fact that there has been an official determination of death and that a death certificate has been issued. Neither side has devoted much attention to the significance of the issuance of the death certificate on the standing of an individual (declared dead in the certificate) to bring a lawsuit. Is there any applicable authority? (Cf. C.C.P. § 377.32(c) [person seeking to commence an action as successor in interest to a decedent must file a declaration attaching a "certified copy of the decedent's death certificate."]) 

(c) As to the argument about "new facts or changed circumstances," neither side has cited authority that the court finds particularly analogous or instructive as applied here. The court is not persuaded, for example, that Blanca P. v. Superior Court (1996) 45 Cal.App.4th 1738, 1754, or Jessica C. (2001) 93 Cal.App.4th 1027, 1038, provides a useful analogy, as those cases involved juvenile dependency or review proceedings in which a court is tasked to consider the circumstances existing at the time of the later proceeding and in which there was new evidence as to alleged molestation. Here, while plaintiffs allege that "[r]ecent evaluations by doctors, including a board certified pediatric neurologist, confirm that Jahi does not meet the definition of brain death" (Complaint, ¶ 26), are such allegations in themselves sufficient to reopen a factual issue determined in a judicial proceeding and official death certificate? Does either side have additional analogous authority in this regard? 

(d) If the court were to sustain the demurrer with leave to amend, what additional factual allegations would Jahi be able to include that could affect the application of collateral estoppel to the issue of whether she is legally alive so as to have individual standing? 

(e) If the court sustains the demurrer to Jahi's cause of action, the court is inclined to grant leave to amend to allow a similar cause of action to be pleaded by Jahi's successor in interest or personal representative. (See C.C.P. § 377.30 et seq.) (2) As to Dr. Rosen's demurrer to the Second Cause of Action for negligent infliction of emotional distress, the court is inclined to SUSTAIN the demurrer, pursuant to C.C.P. § 430.10(e), WITH LEAVE TO AMEND to allege facts sufficient to constitute a cause of action against Dr. Rosen on such a theory, including allegations that the plaintiffs were "present at the scene of the injury-producing event at the time it occur[red] and [were] then aware that it [was] causing injury to the victim...." (Bird v. Saenz (2002) 28 Cal.4th 910, 915; Thing v. La Chusa (1989) 48 Cal.3d 644, 667-668.) As in Bird, "plaintiffs cannot prevail on a claim for NIED based solely on the" allegedly negligent surgery performed by Dr. Rosen, as "no plaintiff was present in the operating room at the time that event occurred." (Bird, supra, 28 Cal.4th at p. 916.) To the extent that the "injury-producing event" was Dr. Rosen's failure to "diagnose and treat" Jahi's medical condition after the surgery, plaintiffs do not have sufficient factual allegations that they "meaningfully ... perceived any such failure" on the part of Dr. Rosen as distinguished from the acts and omissions of Children's Hospital Oakland ("CHO") nurses and other personnel. (Cf. Bird, supra, 28 Cal.4th at p. 917.) 

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Aging in America: The Years Ahead [EOL in Art 80] Thu, 30 Jul 2015 08:30:00 +0000 In Aging in America: The Years Ahead photographer Ed Kashi chronicles what it means to have a “good old age” by collecting scores of personal histories that, when viewed together, challenge the culture of aging in America.

In this photograph, Maxine Peters finally passes away at home, surrounded by her family, friends and hospice aides. In rural West Virginia, people still live -and die - the old fashioned way. The Hospice Care Corporation sends health workers into rural homes to make sure that people can meet a dignified end, surrounded by their families.

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Cecil the Lion: Can Health Care Professionals Ethically Be Sport Hunters Thu, 30 Jul 2015 03:47:06 +0000 by Craig Klugman, Ph.D.

In James Patterson’s book (and now TV miniseries) Zoo, the animals have acquired an intelligence that removes their fear of humans. More specifically, the animals attack humans, driven by radio waves from technology. In character’s belief, the animals are banding together to take care of the greatest threat to their existence—us. With that perspective, I examine the social media uproar over a dentist killing Cecil the Lion.

The social media buzz started not because a man hunted a lion, but because he happened to shoot a beloved lion.…

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Capacity, Consent, and Progress: Recommendations from the Bioethics Commission Wed, 29 Jul 2015 17:48:26 +0000 0 Reasonable Regulation of Surrogate Motherhood Wed, 29 Jul 2015 14:54:00 +0000 Bonnie Steinbock]]> 0 Voyage of Life [EOL in Art 79] Wed, 29 Jul 2015 09:30:00 +0000 0 International Symposium on Brain Death & Disorders of Consciousness Wed, 29 Jul 2015 08:30:00 +0000 The Seventh International Symposium on Brain Death and Disorders of Consciousness will be held this December in Havana, Cuba.

You can participate in the Symposium as a delegate, although the conference organizers encourage you to submit an abstract.  Deadline for submission of abstracts: September 15, 2015.  Notification of Accepted Abstracts: October 15, 2015.

  • Conceptual approach to human death.
  • BD criteria in different countries.
  • Ancillary tests in BD.
  • Autonomic nervous system assessment in BD.
  • BD in childhood.
  • Anencephalic infants.
  • End-of-life dilemmas: terminal patient, euthanasia, assisted suicide, etc.
  • Legal considerations surrounding BD and related states.
  • Philosophical, theological, sociological, historical and cultural considerations of human death.
  • Organ transplantation.

  • Pathophysiological mechanisms of consciousness generation.
  • Coma, persistent vegetative state (PVS), minimally conscious state (MCS), and other DOC.
  • Clinical diagnosis of DOC.
  • Neuroimaging techniques for assessing DOC.
  • Neurophysiologic tests for assessing DOC.
  • Autonomic nervous system assessment of DOC.
  • Neurorehabilitation of DOC.
  • Neuroprotection and Neuromonitoring of DOC.
  • New trends in cardio-pulmonar-cerebral resuscitation.

After the announcement of the re-establishment of USA and Cuba diplomatic relationships, US citizens DO NOT require requesting special permissions to attend a meeting in Cuba, because they can attend any conference in Cuba that relates to the traveler’s profession, professional background, or area of expertise, including graduate-level full-time study.

Although inserted into a worldwide debate, the acceptance that a human being with irreversible loss of brain functions is dead has been progressively accepted beginning as far back as the late 1950’s. Nonetheless, two contentious brain-dead cases have recently raised again new controversies about the diagnosis of brain death (BD), widely covered by the US and international press. 

The Jahi McMath case centers on the bioethical debate surrounding her family s rejection for accepting the BD diagnosis, and their efforts to maintain her body on mechanical ventilation. 

Marlise Nicole Muñoz was declared brain-dead, but, doctors kept her body on a respirator  because she was 14 weeks pregnant. Contrary to the McMath case, Muñoz s husband entered a legal battle to have her removed from life support, assuring that she had previously told him that in case of BD, she would not want to be kept alive artificially.  Moreover, Erick Muñoz s attorneys also argued that the fetus had suffered from oxygen deprivation and was suspected to be non-viable.

Furthermore, the Terri Schiavo, and other famous cases have raised new controversies about the diagnosis and management of the persistent vegetative, the minimally conscious state, etc. Hence, the disorders of consciousness discussions are actual and permanent subjects for debate in the media and scientific discussion in any forum.

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Jahi McMath – Court May Allow Family to Prove She is Now Alive Tue, 28 Jul 2015 10:39:00 +0000 0 A Friendly Reminder [EOL in Art 78] Tue, 28 Jul 2015 08:30:00 +0000 0 Medicare’s Proposed Rule Is Just the First Step Tue, 28 Jul 2015 03:07:26 +0000 0 Investigating Two Claims Against Planned Parenthood: Center of Medical Progress’s Secret Videos Mon, 27 Jul 2015 22:00:39 +0000 by Craig Klugman, Ph.D.

Before you being reading, I have a disclaimer: Growing up, my mother worked for Planned Parenthood. As a nurse, she practiced in their clinics offering well women services, counseling, and contraception. After many years, she went on to direct their clinic’s in vitro fertilization program. I also heard the word “Planned Parenthood” stated with a quick northeastern accent. Said that way, as a child, I thought the place was called “Plant Parenthood” and wondered what plants had to do with women’s health.…

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Update: The Growing Need for a Systematic Approach to Compensation for Research-Related Injuries Mon, 27 Jul 2015 15:41:00 +0000 0 Illness & Healing: Images of Cancer [EOL in Art 77] Mon, 27 Jul 2015 09:00:00 +0000 0 More California Brain Death Disputes Mon, 27 Jul 2015 09:00:00 +0000 0 Atul Gawande’s Look at Mortality, Part 2 Sun, 26 Jul 2015 22:24:58 +0000 Read More »]]> 0 Health Law at SEALS Annual Conference Sun, 26 Jul 2015 12:19:00 +0000 I am at the Waldorf Astoria Boca Raton for the SEALS Annual conference.  

There are five long sessions focused on health law on Monday, Tuesday, and Wednesday.

The Health Care System of Tomorrow

The future of the health care system depends on effective policy implementation tailored to the evolving landscape of regulatory constraints, delivery models, emerging technologies, and changing population needs. This panel will identify current legal and policy barriers to effective functioning of the health care system. Specific areas of coverage include critiques of current (1) Medicare financing of graduate medical education, as both outdated and contributing to provider shortages in critical areas; (2) Medicaid coverage policies that prevent adequate home and community based services; (3) approaches to regulating reproductive technologies, including oocyte cryopreservation and posthumous reproduction; and (4) Medicare payment policies that fail to recognize hospital influence on out-of-hospital treatment.
  • Kelly Dineen - Saint Louis University School of Law
  • Laura Hermer - Hamline University School of Law
  • Browne Lewis - Cleveland State University, Cleveland-Marshall College of Law
  • Jessica Mantel - University of Houston Law Center
  • Seema Mohapatra - Barry University, Dwayne O. Andreas School of Law
  • Stacey Tovino - University of Nevada, Las Vegas, William S. Boyd School of Law

Hot Issues in Law and Bioethics
Medical practice realities interact with law and ethics to profoundly impact patients and the nature of policy development. This discussion will focus on illustrative examples, including (1) end-of-life decision making (physician aid in dying, determination of brain death, assisting patients with advance directives, and the legacy of Schiavo), (2) the impact of difference, disability, and non-typical functioning on appropriate and equitable treatment, (3) the meaning of informed consent in different contexts, (4) public health approaches that negatively impact individuals, (5) genetic and reproductive technologies, and (6) routine provider practices that harm patients. The participants will discuss the implications of these and other issues, share current research, and recommend possible directions for inquiry and action.
  • Jennifer Bard - University of Cincinnati College of Law
  • Zack Buck - Mercer University Law School
  • Kathy Cerminara - Nova Southeastern University, Shepard Broad College of Law
  • Kelly Dineen - Saint Louis University School of Law
  • Fatma Marouf - University of Nevada, Las Vegas, William S. Boyd School of Law
  • Seema Mohapatra - Barry University, Dwayne O. Andreas School of Law
  • Moderator - Thaddeus Pope - Hamline University School of Law
  • Jessica Roberts - University of Houston Law Center
  • Joanna Sax - California Western School of Law
  • Stacey Tovino - University of Nevada, Las Vegas, William S. Boyd School of Law
  • Jessica Mantel - University of Houston Law Center
  • Bryn Esplin - Cleveland Clinic

King v. Burwell
King v. Burwell was one of the biggest cases decided by the Supreme Court this term. The case was the second major Obamacare decision by the Supreme Court and centered on whether the federal government can give subsidies to people who obtain health insurance on an exchange operated by the federal government in a state that has declined to set up its own exchange. The case raises questions about judicial review of agency statutory interpretation under the Chevron doctrine, states’ rights, and the Court’s interpretive posture with respect to major acts of Congress. Discussants from the disciplines of constitutional law, administrative law, health law, and tax law discuss the implications of the Court's decision.

  • Josh Blackman - South Texas College of Law
  • Erin Fuse Brown - Georgia State University College of Law
  • Andy Hessick - University of Utah, S.J. Quinney College of Law
  • Abigail Moncrieff - Boston University School of Law
  • Eric Segall - Georgia State University College of Law
  • Sidney Watson - Saint Louis University School of Law
  • Russell Weaver - University of Louisville, Louis D. Brandeis School of Law
  • Elizabeth Weeks Leonard - University of Georgia School of Law

New Scholars Colloquia - Healthcare Law
  • Professor Marie Boyd, University of South Carolina School of Law, Serving Up Allergy Labeling: A Proposal (Mentor: Professor Louis Virelli, Stetson University College of Law)
  • Professor Zack Buck, Mercer University Law School, The Fractured Fiduciary: Recasting the Duties of the Physician (Mentor: Professor Elizabeth Pendo, St. Louis University School of Law)
  • Professor Cora Walker, Saint Louis University School of Law, Medicaid Waivers: States as Laboratories for Payment and Delivery System Innovation to Address Disparities (Mentor: Professor Stacey Tovino, University of Las Vegas William S. Boyd School of Law)
  • Moderator - Alena Allen, University of Memphis, Cecil C. Humphreys School of Law

Current Issues in Reproductive Rights
In October 2014, Apple and Facebook announced that they would begin paying for egg freezing for their employees. Whether hailed as progress or a setback on women's rights, the announcement is symbolic of the significance of reproductive technologies to contemporary families. The law, however, lags behind technological developments. This discussion group will address the variety of legal issues that come about with technological advances in reproductive technology, such as parentage issues with sperm and egg donors, non-invasive prenatal diagnostic testing, commercial surrogacy, and proposed restrictions on assisted reproductive technologies. This discussion group will also address other issues related to reproductive rights, including Roe v. Wade then and now and the personhood movement.
  • Naomi Cahn - The George Washington University Law School
  • Judith Daar - Whittier Law School
  • Linda Fentiman - Pace University School of Law
  • Seema Mohapatra - Barry University, Dwayne O. Andreas School of Law
  • Jeffrey Parness - Northern Illinois University College of Law
  • Mary Ziegler - Florida State University College of Law
  • Browne Lewis - Cleveland State University, Cleveland-Marshall College of Law
  • Meredith Harbach - University of Richmond School of Law

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The Nursing Home – for Superheroes [EOL in Art 76] Sun, 26 Jul 2015 09:30:00 +0000 0 Jahi McMath – Opposition to Demurrer Sun, 26 Jul 2015 08:30:00 +0000 0 He Can No Longer at the Age of 98 [EOL in Art 75] Sat, 25 Jul 2015 09:00:00 +0000 Beneath Goya's illustration reads the title: “He Can No Longer at the Age of 98.” 

An old man stands alone, accompanied only by his shadow. His bent body caves under some unknown force, and the man tries his best to remain upright by relying on two canes, one held in each hand. Facing to the front left of the paper, the old man appears to be on his way to some destination; his feet are not drawn with any suggestion of movement, however, and so it appears that despite his intentions, the old man cannot accomplish the simple goal of walking.

The vagueness of title's meaning allows the viewer to indulge a multitude of imaginings of what specifically the man can no longer do – he cannot walk, cannot function, cannot survive independently, he cannot do most anything. Drawn and painted without color, Goya’s lonely and impotent old man offers a bleak outlook on severe old age.

The artwork raises powerful questions of how one should deal with the inevitable decline in abilities brought on by old age. How can one age to the point of total frailty yet retain one’s happiness and joie de vivre?

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Hospice Concurrent with Curative Treatment – Medicare Care Choices Model Fri, 24 Jul 2015 20:26:00 +0000 0 Dead Mother [EOL in Art 74] Fri, 24 Jul 2015 08:30:00 +0000 0 Nevada Brain Death Dispute – Aden Hailu UPDATE Fri, 24 Jul 2015 01:10:00 +0000 0 A Step Toward a Cultural Transformation in the Way Pain is Perceived, Judged and Treated Thu, 23 Jul 2015 19:13:00 +0000 The following blog post is the executive summary of the June 29-30, 2015, PAINS Collaborators Meeting in Washington, DC, held in response to Department of Health and Human Services’ publication of the National Pain Strategy Report. 


In anticipation of publication of the National Pain Strategy (NPS) Report, in June 2015 the Pain Action Alliance to Implement a National Strategy (PAINS), a coalition of national leaders and organizations committed to advancing the sixteen recommendations made in the Institutes of Medicine’s report, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research, convened a Collaborators Conference in Washington, DC. The purpose of the meeting was to discern opportunities and challenges to implementation of the report, to build enthusiasm for it and promote collaboration among attendees in order to move the NPS Report from a vision to a reality. More than 100 prominent leaders from professional societies, academic institutions, federal agencies, patient advocacy groups, and policy organizations met to review the NPS Report and discuss each of its six sections.

In April 2015, the NPS Report underwent preliminary review by multiple federal agencies and was then posted in the Federal Register for public commentary. In opening remarks, Walter Koroshetz, Director of the National Institute of Neurological Disorders and Stroke (NINDS), told attendees that more than 770 responses were received and the plan is expected to be released in the late summer/early fall. Expectations for it are high. The report’s vision states, “If the objectives of the National Pain Strategy are achieved, the nation would see a decrease in prevalence across the continuum of pain, from acute, to chronic, to high-impact chronic pain, and across the life span from pediatric through geriatric populations, to end of life, which would reduce the burden of pain for individuals, families, and society as a whole. Americans experiencing pain — across this broad continuum — would have timely access to a care system that meets their bio-psychosocial needs and takes into account individual preferences, risks, and social contexts. In other words, they would receive patient-centered care.”

PAINS surveyed participants prior to the meeting and found that overall, the NPS Report was well received by respondents, and stakeholders expressed appreciation and support for it. One respondent said about the report, “It presents a rare opportunity for cultural change with across-the-board goals and strategies.” The three foci in which attendees were most interested were:  professional education and training (72.7%), public education and communication (69.7%) and prevention and care (57.6%).

However, concerns were also expressed about the lack of specificity and accountability, the absence of a timeline, and the fact that there has been no appropriation of funding designated for implementation of the plan.  


In the opening keynote address of the two-day conference, Dr. Sean Mackey, co-chair of the NPS Report Oversight committee, said, “Eighty incredibly dedicated national experts covering a wide range of the bio-psychosocial aspects of pain – including expertise from clinical and public health, legal, ethical and payment, including both traditional and complementary medicine – volunteered their time to develop the plan.” He introduced the concept of “high-impact chronic pain,” which the NPS Report defines as “pain associated with substantial restriction of participation in work, social, and self-care activities for six months or more.” Mackey said that doing so was meant to address challenges there have been to the IOM report’s claim that “at least 100 million Americans live with chronic pain…. and that there is a clear need to better understand the numbers of people with high-impact chronic pain, how to provide them with the best care to avoid both under- and over-treatment, and to identify those at risk for developing high-impact chronic pain after injury or surgery.” He said, “The NPS is a great document. It is not a perfect document.” He urged those present and others committed to transforming pain care in America not to pick the document apart, but to support it in its entirety. He also argued for the development of clear messaging explaining what the NPS Report is and what it is not.  Compellingly, he asked all those present to speak with one voice and not let the perfect be the enemy of the good.


In brief reports, members of the six NPS Workgroups presented highlights of the section of the report they worked on, shared personal observations and then engaged with all those present in robust conversation. Key elements of those included:

• The need for research, including population, basic science, clinical translational, comparative effectiveness, and quality improvement were all discussed. Greg Terman, member of the NPS Oversight Committee, said that with the help of others at CDC and NIH, a set of pain questions are being developed to be included in the National Health Interview Survey.

• The importance of addressing historic disparities in health and healthcare was recognized as critical to successful implementation of the report in that they permeate the entire report. Nadine Gracia, Deputy Assistant secretary for Minority Health, cautioned that “culturally and linguistically appropriate language” must be incorporated in education and communication efforts called for in the report.

• Learning from efforts of the Department of Defense to improve pain care for veterans that have preceded the NPS Report was promoted by Dr. Chester “Trip” Buckenmaier in his report on Care and Prevention. In particular, he encouraged consideration of the Pain Assessment Screening Tool and Outcomes Registry (PASTOR), the Patient Reported Outcome Measurement Improvement Survey (PROMIS) and Computer Adaptive Testing (CAT).

• On behalf of the Service Delivery and Reimbursement Workgroup, Marianne Udow-Phillips cautioned attendees not “to think that we are going to abandon fee-for-service” because she said large self-insured employers like it. Everyone recognized improved reimbursement as a keystone issue. Udow-Phillips encouraged the audience by saying that there is interest among payers in programs that improve quality and save money.  She called for small pilot programs to demonstrate the feasibility and efficacy of comprehensive pain care, including exploration of “fee-for-service with incentives.” 

• Although professional education and training is recognized as critically important, 
Dr. Mac Gallagher, reporting on behalf of the Professional Education and Training Section, said, “We can’t wait for the medical schools and licensure groups to change.” Attendees were enthusiastic about and supportive of the NIH Pain Consortium’s program to develop Centers of Excellence in Pain Education. However, Dr. Dave Davis, Senior Director of Continuing Education and Improvement at the Association of American Medical Colleges, agreed with Gallagher and encouraged more focus on continuing medical education for practicing clinicians, including biomedical, behavioral and complementary therapies. He also pointed to the importance of IEPs (inter-professional education programs).

• Penney Cowan, co-chair of the Public Education and Communication Workgroup, reported that two public education campaigns were recommended by the group. The priority campaign being an extensive public awareness campaign about chronic pain and the secondary campaign being on safe medication use by patients. Four “core messages” developed by the Chronic Pain Advocacy Task Force (CPATF), a coalition of 17 consumer advocacy organizations, were presented. The messages clearly resonated with meeting attendees and became a major focus of actions following the conference.


Outside experts provided input and perspective for consideration from public health, politics, and addiction advocacy. Dr. Georges Benjamin, Executive Director of the American Public Health Association, encouraged the use of patient narratives about those living with extreme chronic pain. He also encouraged gaining more clarity about the problem and reframing discussion using more of a public health framework. Dr. Keith Wailoo, historian and author of Pain: A Political History, shared how concerns about disability, physician assisted suicide, the “War on Drugs,” and dramatic increases in addiction to prescription pain medications have shaped pain policy over the last seven decades and impacted the lives of those living with chronic pain. He also discussed how the so-called “red state vs. blue state” worldview negatively impacts those who live with chronic pain and other diseases, including addiction. Dr. Jeff Levi, CEO of Trust for America’s Health, began his presentation by saying, “All politics, perhaps especially health politics, is personal.” He said that “the pain community starts with the individual in pain and wants to find the best solutions for that individual…. The substance abuse prevention world starts with preventing addiction and looks in particular to find structural interventions that make it harder for someone to become addicted.” Dr. Levi, as had others throughout the day, called for finding common ground and suggested specific strategies for doing so, with one of those strategies being to focus on harm reduction.


One the second day of the conference, participants broke out into groups focused on each section of the report and then shared thoughts and ideas about how to advance the strategies and objectives in the NPS Report. Those reports are incorporated in the full report in their entirety.

Key to the success of the meeting was the involvement of people living with chronic pain – a highly successful environmental lawyer injured in a bicycling accident fifteen years ago, a professor of bioethics and public health born with sickle cell disease, and Cindy Steinberg, a person who experienced a “crushing accident” more than a decade ago who has become a self-educated policy wonk and now dedicates her life advocating for better care for the 100 million Americans who live with chronic pain. 

Ms. Steinberg was the closing keynote speaker for PAINS Collaborators Meeting. In an impassioned appeal, she called for PAINS and all those present to do four things:
1) Endorse the four core messages developed by CPATF.
2) Develop op-eds in support of the NPS Report at the time of its release.
3) Advocate for peer reviewed articles about the Report.
4) Work together to develop a national communication strategy in time for Pain Awareness Month in September. 

Based on a robust evaluation plan, PAINS believes the Collaborators Meeting achieved the goals that had been set for it. (Perceptions and opinions of attendees regarding the meeting are included entirely as received.) One reason PAINS invested significant resources into evaluation was to assess attendees’ views about the role of PAINS in implementation of the National Pain Strategy Report. Based on responses to a meeting with key national leaders immediately following the conference, responses to a post-meeting survey, emails received from attendees, and a report from the meeting facilitator, PAINS believes that its greatest contribution is to continue to serve in the role of neutral convener and facilitator of collaboration among the many groups committed to advancing the NPS Report.

The conclusion of the report states the obvious, “A cultural transformation in the way pain is perceived, judged and treated” will require almost unimaginable resources, numbers of organizations and committed individuals, political will, and changes in attitudes. However, the dialogue, discourse and enthusiasm at the PAINS Collaborators Meeting encouraged those who convened and planned it and gave hope to all those present that the U.S. is at the precipice of a cultural shift in the way chronic pain is managed. The report’s vision can become reality, but there is much to be done. There is no time to rest on one’s laurels. As Henry Ford once said, “Coming together is a beginning, staying together is progress and working together is success.”

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Responding to the “Dogma” charge Thu, 23 Jul 2015 18:52:31 +0000 Read More »]]> 0 Bioethics Deliberation and Education in New Directions Thu, 23 Jul 2015 15:42:59 +0000 0 City Hospital [EOL in Art 73] Thu, 23 Jul 2015 09:00:00 +0000 0 Planned Parenthood and fetal tissue donation Thu, 23 Jul 2015 07:07:30 +0000 0 Planned Parenthood and the moral standing of the medical profession Wed, 22 Jul 2015 15:15:08 +0000 Read More »]]> 0 Island of Death [EOL in Art 72] Wed, 22 Jul 2015 09:00:00 +0000 Bocklin's Island of the Dead invites contemplation on the mystery of what lies beyond death.

The stones and trees make for an interesting comparison – both are symbols of the natural world, the former dead and cold, the latter alive yet silent. The apparent lack of human life on the island is made poignant by the knowledge that once upon a time, the stone ruins must have housed living men. Now, however, like death, the island is an isolated, isolating, and lonesome place. (Project Gutenberg)

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Jahi McMath – Now Alive and on Medicaid Tue, 21 Jul 2015 20:58:00 +0000 0 Beyond the “Silver Tsunami”: Toward an Ethic for Aging Societies Tue, 21 Jul 2015 14:54:00 +0000 0 Intensive Care Room [EOL in Art 71] Tue, 21 Jul 2015 09:30:00 +0000 0 OA Journals Are More For Biomedical Scientists And Not for (All) Bioethicists Tue, 21 Jul 2015 07:07:42 +0000 0 Paying for Medicare Advance Care Planning Puts “Duty to Share” Squarely on the Patient Mon, 20 Jul 2015 20:00:00 +0000 Why is it that Americans seem to be the only people on the planet who live their lives as though death were an optional event? For many of us who have worked for years helping families and clinicians grapple with difficult choices in “shared decision making,” we’ve been challenged by that convention despite the evidence that 75% of us claim that preparing a living will and appointing a healthcare proxy are critically important. Yet fewer than one third of us do anything to make it happen.

Perhaps it’s our willing adherence to myths; most notably our believing that when the time comes, we’ll know, and we’ll have time to get our affairs in order, making our wishes known. This “just-in-time” approach may be comforting but, in reality, it’s magical thinking. For most of us, the “right time” never comes, but the crisis does. Believing in a scenario that we’ll luck into a peaceful passing without ever having so much as an uncomfortable conversation with anyone doesn’t support the reality that 80% of us will eventually rely on a proxy to make decisions for us.

Beyond “Just in Time”

So, how do we prepare for the realities of dying? First, name someone to speak for you when you cannot speak for yourself. But don’t stop there. Talk with that person about what matters most to you. Proxies need to be ready to respond to uncertainties, in a way that you would. Commit to ongoing conversations with loved ones and health providers, so your values and preferences are truly “shared.”

On July 8, the Centers for Medicare and Medicaid proposed new rules to pay for these conversations beginning January 2016.  If all goes as planned, Medicare will begin reimbursing providers for engaging in these discussions. That’s good news, because evidence shows that when patients’ expressed wishes are honored, survivors and clinicians report higher satisfaction because treatments align with goals. Anxiety and crises abate.

The Most Important Decisions

Before beginning this overdue conversation about values and preferences in end of life decision making, let’s examine a caution. Our tendency in healthcare is to “medicalize” everything. Getting older is not a disease. The most important decisions you and your proxy will have to make aren’t medical ones. They are emotional, social and spiritual. Death is not a medical event so much as it is a human, community experience.

So, before you take advantage of Medicare’s “advance care planning,” know what you want to say. You don’t have to be ready to answer questions about what kinds of treatments you do or don’t want, because research also shows that we’re not very good at predicting how we will feel about them in the future anyway. Instead, share values, what it means to be fulfilled, how important it is to know the details of your illness, what gives life meaning, and what a “complete life” looks like to you. Those are the kinds of things that will help your decision makers stand in and up for you when the time comes. 

Take advantage of the Center for Practical Bioethics’ resource, Caring Conversations®, available online for free (or in print for a nominal fee). There are no right and wrong answers, but there can be peace of mind. We know – and now Medicare agrees – that talking before the crisis can work. It leads to more favorable outcomes and higher likelihood that preferences get honored. Satisfaction improves. Patient-centered outcomes matter to everyone. Helping providers find that path is a duty we all bear. End of life is inevitable. Death may be a sad outcome, but it doesn’t have to be a bad one. 

John G. Carney is the president and CEO of the Center for Practical Bioethics. In 2008 he served as one of the co-authors in a Report to Congress on Advance Care Planning.
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EMTs Misinterpret POLST Forms Mon, 20 Jul 2015 17:53:00 +0000 A new study in ED Management, finds that emergency providers lack consensus on what action to take when they have Physicians Orders for Life Sustaining Treatment (POLST) forms.  

In a continuing line of research by Ferdinando Mirarchi (medical director of the Department of Emergency Medicine at the University of Pittsburgh Medical Center Hamot in Erie, PA). 

In a survey of emergency physicians and pre-hospital providers, responders were given scenarios in which the patient had a POLST. The providers were then asked to decide what to do. Unfortunately, providers often know that the form exists but fail to read it, making assumptions about what it says.  For example, DNR orders are equated with "do not treat" orders. 

The outcomes of the study prompted the team to suggest that clinicians use a checklist built on the letters A, B, C, D, and E: 

  • A = Ask patients and surrogates to clarify their intentions about DNRs, POLST and other end-of-life planning documents.
  • B = Be clear about the status of the patient, including terminal or critical illness “that can be treated.”
  • C = Communicate with the patient about prognosis and expected outcomes.
  • D = Design plans for care and review the steps in the plan.
  • E = Explain about hospice and palliative care, and let patients know that treatment choices are up to them, and that their wishes will be honored.

The researches suggest that hospitals establish quality control procedures to ensure that end-of-life-care documents are prepared and interpreted accurately. 

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On a Radioactive Pig and Pope Francis Mon, 20 Jul 2015 14:54:00 +0000 Stephen F. Eisenman]]> 0