Dissecting the Charlie Gard Case

The judicial decision to allow mechanical life support to be removed from the British infant, Charlie Gard, has been roundly condemned by some sources.  The infant’s distraught mother lamented that the parents had been allowed “no control” over their child’s life and death.  Demonstrators, calling themselves “Charlie’s army,” assembled near the courthouse crying “shame” at the court’s failure to sustain a preservable human life.  Conservative commentators condemned the “unwarranted” governmental interference with parents’ child-rearing prerogatives.  They wondered why the parents weren’t permitted to transport the infant, at their own expense, from London to New York to try an experimental medication being offered by a Columbia physician.  Another conservative source accused the National Health Service of taking Charlie prisoner, contending that the British health service feared being shown up by American free enterprise medicine if Charlie were treated in New York.

The Setting

Charlie Gard was born on August 4, 2016, suffering from a rare genetic disease called mitochondrial DNA depletion syndrome (MDDS).  MDDS seriously affected Charlie’s brain and muscles, leaving him without ability to hear, see, cry, move his arms or legs, or breathe without a mechanical ventilator.  On October 11, 2016, Charlie was admitted to Great Ormond Street Hospital (GOSH) where he was continuously treated until just before his death in a hospice in July 2017.

In early January 2017, the GOSH clinicians had been willing to import and administer an experimental drug (nucleoside powder) touted by a N.Y. physician, Dr. Michio Hirano.  Nucleoside treatment had been used by Dr. Hirano for a different mitochondrial mutation (TK2), not MDDS.  However, before nucleoside treatment could be initiated, Charlie experienced brain seizures causing even more brain damage – leaving no signs of upper brain activity necessary for responsiveness and interaction with an environment.  GOSH’s staff then concluded that there was no meaningful chance that nucleoside treatment could help Charlie.  In February 2017, GOSH applied for a judicial order declaring that withdrawal of the ventilator would be in Charlie’s best interests (to shorten the pain and suffering that Charlie was probably experiencing) and therefore would be lawful.
Continue reading

Book Review: Phyllis Shacter’s “Choosing to Die” (A Story of Death by Voluntarily Stopping Eating and Drinking)

For some people, being mired in progressively degenerative dementia is an intolerably distasteful prospect.  Precipitous mental deterioration would, for them, indelibly soil the lifetime image to be left with survivors and would pose a repugnant physical and emotional burden upon caregivers.  They know that lingering in an utterly dysfunctional cognitive state can continue for many years.

One tactic to avoid prolonged dementia, after initial diagnosis, is to take steps to end one’s existence while still competent.  And one lawful method of self-arranged death is by voluntarily stopping eating and drinking (VSED).  Strict cessation of nutrition and hydration will typically precipitate death by dehydration within 10 to 14 days.  The patient will likely lapse into delirium or confusion after a number of days and remain semi-conscious or unconscious for the duration.

The VSED route is derided by some sources as a repulsive ordeal both for the patient and surrounding caregivers.  The detractors portray the process as both torturous and excessively undignified.  They envision death “by starvation” as entailing unavoidable suffering.  They perceive offensive indignity in the accompanying erosion of mental clarity (delirium) and in days of semi-conscious or unconscious lingering.  This liminal period is deemed demeaning to the patient and “a horrible vigil” for surrounding family watching the wasting patient die. Continue reading

CMS Publishes Final Rule Revising and Expanding Conditions for HHA Participation in Medicare and Medicaid

By Wendy S. Salkin

The Centers for Medicare and Medicaid Services (CMS) finalized a rule concerning home health agencies on January 9th, “Medicare and Medicaid Program: Conditions of Participation for Home Health Agencies.” The rule has been a long time coming, since the proposed rules were set forth on October 9, 2014. This is the first time that CMS has successfully updated the home health agency (HHA) conditions of participation (CoPs) since 1989.

The aim of the final rule, according to CMS, is to “improve the quality of health care services for Medicare and Medicaid patients and strengthen patients’ rights.” The final rule

revises the conditions of participation (CoPs) that home health agencies (HHAs) must meet in order to participate in the Medicare and Medicaid programs. The requirements focus on the care delivered to patients by HHAs, reflect an interdisciplinary view of patient care, allow HHAs greater flexibility in meeting quality care standards, and eliminate unnecessary procedural requirements.

According to CMS,

[t]hese changes are an integral part of [the Agency’s] overall effort to achieve broad-based, measurable improvements in the quality of care furnished through the Medicare and Medicaid programs, while at the same time eliminating unnecessary procedural burdens on providers.

As is likely well known to readers, the use of home health services in the United States is widespread. According to the National Center for Health Statistics, as of 2014, there were 12,400 home health agencies in the United States and, during 2013, 4.9 million patients in the United States received and ended care from home healthcare workers. These numbers have since risen, and today in the United States there are nearly 12,600 Medicare and Medicaid-participating home health agencies and more than 5 million patients. Home health care serves a wide range of purposes. The Medicare website touts it as “usually less expensive, more convenient, and just as effective as care you get in a hospital or skilled nursing facility (SNF).” In addition to serving the aims of treating illness or injury, according to Medicare home health care “helps [patients] get better, regain [their] independence, and become as self-sufficient as possible.” Some examples of what home health care providers do with and for patients, upon doctor’s orders, include: wound care, patient and caregiver education, intravenous or nutrition therapy, injections, monitoring patient health condition, monitoring patient drug and treatment use, teaching patients how to care for themselves, and coordinating care between the patient, their doctor, and any other caregivers. Continue reading

Can the Right to Stop Eating and Drinking be Exercised via a Surrogate Acting Pursuant to an Advance Instruction?

by Norman L. Cantor

The right of a grievously stricken, competent patient to hasten death by ceasing eating and drinking is increasingly recognized. In the typical scenario, a person afflicted with a serious degenerative disease reaches a point where the immediate or prospective ordeal has become personally intolerable.  The stricken person decides to shorten the ordeal by stopping eating and drinking, precipitating death by dehydration within 14 days.  The dying process is not too arduous so long as there is a modicum of palliative care available – emotional support, lip and mouth care, and provision of a sedative if patient agitation or disorientation ensues.

A further question is whether a person can dictate a similar fatal course for his or her post-competence self by advance instruction to an agent.  The instruction would be that — once a pre-defined point of dementia has been reached — either no food or drink should be offered to the incompetent patient or no manual assistance should be provided where the patient is not self-feeding.  This post-competence SED tactic appeals to persons who view the prospective demented status as intolerably demeaning and wish to hasten their demise upon reaching that state. The legal claim would be that if a competent patient has a right to SED, the right ought to subsist post-competence when exercised by clear advance instruction.  According to this claim, just as an advance instruction to reject a respirator would be upheld as an exercise of prospective autonomy, so an instruction for cessation of nutrition should be respected.

     A person who undertakes responsibility for a demented person normally has a fiduciary duty to promote the well-being, comfort, and dignity of the ward.  A guardian who forgoes available care measures such as shelter, warmth, hygiene, and food is chargeable with unlawful neglect.  Provision of food and assistance in eating are normally part of that fiduciary obligation.  A legal exemption might apply, though, if the guardian – in discontinuing hand feeding pursuant to an advance instruction — is simply respecting the right of the ward to exercise prospective autonomy. The question becomes: Is the acknowledged right to SED exercisable by means of an advance instruction?  Continue reading

REGISTER NOW (1/23)! PFC’s 5th Annual Health Law Year in P/Review

The Fifth Annual Health Law Year in P/Review symposium will feature leading experts discussing major developments during 2016 and what to watch out for in 2017. The discussion at this day-long event will cover hot topics in such areas as health policy under the new administration, regulatory issues in clinical research, law at the end-of-life, patient rights and advocacy, pharmaceutical policy, reproductive health, and public health law.

This year’s Health Law Year in P/Review is sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School, Harvard Health Publications at Harvard Medical School, Health Affairs, the Hastings Center, the Program On Regulation, Therapeutics, And Law (PORTAL) in the Division of Pharmacoepidemiology and Pharmacoeconomics at Brigham and Women’s Hospital, and the Center for Bioethics at Harvard Medical School, with support from the Oswald DeN. Cammann Fund. 

Agenda

8:30 – 9:00am, Registration

A continental breakfast will be available.

9:00 – 9:05am, Welcome Remarks

  • I. Glenn Cohen, Professor of Law and Faculty Director, Petrie-Flom Center, Harvard Law School
  • Holly Fernandez Lynch, Executive Director, Petrie-Flom Center and Faculty, Center for Bioethics, Harvard Medical School

9:05 – 10:30am: The End of ObamaCare? Health Care Reform Under A New Administration

  • Joseph R. Antos, Wilson H. Taylor Scholar in Health Care and Retirement Policy, American Enterprise Institute
  • David Blumenthal, President, The Commonwealth Fund
  • Michael K. Gusmano, Research Scholar, The Hastings Center
  • John McDonough, Professor of the Practice of Public Health, Director of the Center for Executive and Continuing Professional Education, Harvard T. H. Chan School of Public Health
  • Abigail R. Moncrieff, Associate Professor of Law and Peter Paul Career Development Professor, Boston University School of Law
  • Moderator: Einer Elhauge, Caroll and Milton Petrie Professor of Law and Founding Faculty Director, Petrie-Flom Center, Harvard Law School

10:30 – 10:45am, Break

10:45 – 11:10am, Precision Medicine Initiative/Cancer Moonshot

11:10 – 11:35am, Common Rule Update

  • Holly Fernandez Lynch, Executive Director, Petrie-Flom Center and Faculty, Center for Bioethics, Harvard Medical School

11:35am – 12:00pm, Clinical Trial Data Sharing

  • TBD, MRCT Center at Harvard

12:00 – 12:25pm, All-Payer Claims Databases

  • Gregory D. Curfman, Editor-in-Chief, Harvard Health Publications, Harvard Medical School

12:25 – 1:00pm, Lunch

Lunch will be provided.

1:00 – 1:25pm, Defining Death, Aid in Dying, and Family Rights

  • Paul Ford, Lecturer, Harvard Medical School, Winter 2017; Director, NeuroEthics Program, Cleveland Clinic; Director of Education, Department of Bioethics, Cleveland Clinic; Associate Professor, CCF Lerner College of Medicine of CWRU

1:25 – 1:50pm, Patient Advocacy, FDA, and Right to Try

  • Jerry Avorn, Professor of Medicine, Harvard Medical School and Chief of the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women’s Hospital

1:50 – 2:15pm, Drug Pricing and Cost

  • Ameet Sarpatwari, Instructor in Medicine, Harvard Medical School and Brigham and Women’s Hospital

2:15 – 2:40pm, Health IP

2:40 – 2:55pm, Break

2:55 – 3:20pm, Women’s Health

  • Aziza Ahmed, Professor of Law, Northeastern University School of Law

3:20 – 3:45pm, Reproductive Technology and Regulatory Oversight

  • I. Glenn Cohen, Professor of Law and Faculty Director, Petrie-Flom Center, Harvard Law School

3:45 – 4:10pm, Legal Responses to Zika

  • George Annas, William Fairfield Warren Distinguished Professor and Chair of the Department of Health Law, Bioethics & Human Rights, Boston University School of Public Health; Professor in the Boston University School of Medicine, and School of Law

4:10 – 4:35pm, Flint, Water Safety, and Public Health Infrastructure

  • Wendy Parmet, Matthews Distinguished University Professor of Law, Director of the Center for Health Policy and Law, and Associate Dean for Interdisciplinary Education and Research Support; Professor of Public Policy and Urban Affairs, Northeastern University School of Public Policy and Urban Affairs

4:35 – 5:00pm, Concussion Litigation and Legislation in Sports

  • Christopher Deubert, Senior Law and Ethics Associate, Petrie-Flom Center Law and Ethics Initiative, Football Players Health Study at Harvard University

5:00pm, Adjourn

Learn More

How did our prognosticators do in predicting health law and policy developments they expected in 2016? Check out videos of all of the presentations at the 4th Annual Health Law Year in P/Review event, held in January 2016, and find out!

Register Now!

This event is free and open to the public, but seating is limited and registration is required. Register now!

Sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School, Harvard Health Publications at Harvard Medical School, Health Affairs, the Hastings Center, the Program On Regulation, Therapeutics, And Law (PORTAL) in the Division of Pharmacoepidemiology and Pharmacoeconomics at Brigham and Women’s Hospital, and the Center for Bioethics at Harvard Medical School, with support from the Oswald DeN. Cammann Fund. 

American Psychiatric Association Releases Formal Position Statement on Euthanasia

By Wendy S. Salkin

End of Life Care, NIH

Image Source: NIH Consensus Development Project

Last month, the American Psychiatric Association (APA) released a position statement on medical euthanasia. The statement, approved by the APA Assembly in November and approved by the Board of Trustees in December, states:

The American Psychiatric Association, in concert with the American Medical Association’s position on medical euthanasia, holds that a psychiatrist should not prescribe or administer any intervention to a non-terminally ill person for the purpose of causing death.

According to the APA Operations Manual, APA position statements “provide the basis for statements made on behalf of the APA before government bodies and agencies and communicated to the media and the general public.”

For those who are wondering, What’s the American Medical Association’s [AMA] position on medical euthanasia?, here is your answer: From Section 8 of Chapter 5 (“Opinions on Caring for Patients at the End of Life”) of the AMA Code of Ethics: Continue reading

Westworld and Bioethics

[WARNING: Spoilers below]

On Sunday, HBO’s Westworld finished its run. Though I thought some of the early episodes were arguably a bit of a failure as television (and my partner almost jumped off the bandwagon of making this one of “our shows”) IMHO the show finished very strong.

But whatever you thought of it as television, the show is wildly successful at raising a series of bioethics issues. There have been a bunch of other very good treatments of some of these issues in the last couple of decades – A.I., Ex Machina, Humans, Battlestar Galactica all come to mind – that touch on some of these issues. But, what I loved about Westworld is its lack of direct moralizing on these subjects, and how it leaves the viewer puzzling through them in a much more naturalistic way: I have been thrust in this unfamiliar world, and now I am trying to use my ethical compass to get my bearings.

Once upon a time I discussed Bioethics and the Martian, and my aim is to do the same here. I thought one way to share why I think the show is so successful as a text for bioethics exploration was to develop a “mock exam question” on the subject. This is really written more like an oral exam, with follow-up questions. The goal is not entirely fanciful since I do teach a course that uses films as texts to explore bioethics and the law.

Here goes: Continue reading

Monday, 11/28, Health Law Workshop with Frances Kamm

November 28, 2016 5-7 PM
Hauser Hall, Room 104
Harvard Law School, 1575 Massachusetts Ave., Cambridge, MA

Presentation title: “Advanced and End of Life Care: Cautionary Suggestions”

This paper is not available for download. To request a copy in preparation for the workshop, please contact Jennifer Minnich at jminnich at law.harvard.edu.

Frances Kamm is the Littauer Professor of Philosophy and Public Policy in the Kennedy School of Government and Professor of Philosophy in the Faculty of Arts & Sciences.

She is the author of Creation and Abortion (1992); Morality, Mortality, Vol. 1: Death and Whom to Save From It (1993); Morality, Mortality, Vol. 2: Rights, Duties, and Status (1996); Intricate Ethics: Rights, Responsibilities, and Permissible Harm (2007), and, most recently, Ethics for Enemies: Terror, Torture, & War (2011). She also has published many articles on normative ethical theory and practical ethics.

Professor Kamm has held ACLS, AAUW, and Guggenheim fellowships, and has been a Fellow of the Program in Ethics and the Professions at the Kennedy School, the Center for Human Values at Princeton, and the Center for Advanced Study at Stanford.

She is a member of the editorial boards of Philosophy & Public AffairsLegal TheoryBioethics, and Utilitas, and was a consultant on ethics to the World Health Organization.

Honing the Emerging Right to Stop Eating and Drinking

By Norman L. Cantor

A stricken medical patient has a well-established right to reject life-extending medical interventions.  A person afflicted with pulmonary disease is entitled to reject a respirator, a person with kidney dysfunction can reject dialysis, and a person with a swallowing disorder can reject artificial nutrition and hydration (ANH).  State and federal courts uniformly invoke competent patients’ interests in self-determination and bodily integrity to uphold a patient’s prerogative to shape their own medical course.  The patient’s right extends not just to intrusive machinery, but also to simplistic, non-burdensome medical intrusions like an I.V. tube or a blood transfusion.

Some patients facing fatal or seriously degenerative conditions seek to hasten their demise by voluntarily stopping eating and drinking (VSED) before the stage of decline when they are dependent on life-sustaining medical intervention.  They see SED as a way to shorten their ordeal by precipitating death by dehydration within 14 days while receiving mild palliative intervention to foreclose distress before slipping into a terminal coma. The SED process entails days of lingering incapacity and is a distasteful prospect for some patients.  But it is regarded by other patients as a relatively quick, peaceful, and humane way of ending a mortal struggle now deemed to be intolerably arduous.

Numerous medico-legal commentators, myself included,[1] have asserted that a stricken patient has “a right” to VSED.   These commentators associate a patient’s decision to cease nutrition and hydration with the established constitutional right to reject life-sustaining medical intervention.  They note that the fasting person is invoking bodily integrity – precluding any feeding spoon from penetrating their mouth or nutritional tube from being inserted into their body – as well as autonomy in shaping a response to a serious affliction.   They also observe that the proffered succor (in the form of forced feeding or artificial nutrition) demands medically skilled intervention generally subject to a competent patient’s control.

The formal legal authority is thin.  Commentators point to several lower court decisions where judges refused to authorize medical override of a fasting patient.  No high level judicial body has spoken to the precise issue. Continue reading

Monday, 11/7, HLS Health Law Workshop with Trudo Lemmens

November 7, 2016 5-7 PM
Hauser Hall, Room 104
Harvard Law School, 1575 Massachusetts Ave., Cambridge, MA

Presentation: “While Canada Ventures into Legalized Medical Assistance in Dying, What Can It Learn from the Belgian Euthanasia Experience?”

To request a copy of the paper in preparation for the workshop, please contact Jennifer Minnich at jminnich@law.harvard.edu.

Trudo Lemmens is Professor and Scholl Chair in Health Law and Policy at the University of Toronto Faculty of Law. He holds cross appointments in the Faculty of Medicine, and the Joint Centre for Bioethics. Since joining the Faculty of Law, he has been a member of the School of Social Science of the Institute for Advanced Study in Princeton, a visiting fellow of the Royal Flemish Academy of Belgium for Science and the Arts, a visiting professor at the K.U.Leuven and the University of Otago (New Zealand), a Plumer Visiting Fellow at Oxford’s St. Anne’s College, and an academic visitor at the Faculty of Law and the HeLEX Center for Health, Law and Emerging Technologies at the University of Oxford.

Lemmens holds a Licentiate of Laws (LL.Lic.) from the KU Leuven (Belgium) and both a Master of Laws (LLM, specialization bioethics) and Doctorate of Civil Law (DCL) from McGill University. His research sits at the interface of law, ethics, and professional governance. Currently, his research focuses on the complex interaction between law, other governance tools, and ethical norms and values in the context of health care, biomedical research, health product development, and knowledge production.

Lemmens’ publications include the co-authored book Reading the Future? Legal and Ethical Challenges of Predictive Genetic Testing, the co-edited volume Law and Ethics in Biomedical Research: Regulation, Conflict of Interest, and Liability, as well as numerous chapters and articles in national and international law, policy, science, medicine and bioethics journals. He is currently a member of the Advisory Committee on Health Research of the Pan American Health Organization and of the Board of the Ontario Mental Health Foundation.

TOMORROW, 11/2! The 21st-Century Advanced Illness Care Team: How Team-based Care is Moving Medicine Beyond the Clinic into the Home and Community

The 21st-Century Advanced Illness Care Team: How Team-based Care is Moving Medicine Beyond the Clinic into the Home and Community
November 2, 2016 12:00 PM
Pound Hall, Room 101
Harvard Law School, 1563 Massachusetts Ave., Cambridge, MA

Care for advanced illness is moving beyond the hospital and physician office and into the home and community. Addressing the needs of the individual with advanced illness increasingly requires an interdisciplinary team of providers, with significant policy implications.

This panel discussion will feature voices across specialties and professions addressing clinical and policy solutions.

Speakers:

  • Cheryl Sullivan, Chief Executive Officer, American Academy of Nursing
  • Sandra Schellinger, Senior Scientist, Late Life Supportive Care Research, Allina Health System
  • Brad Stuart, Chief Medical Officer, Coalition to Transform Advanced Care
  • Ravi Parikh, Clinical Fellow, Harvard Medical School, Resident in Internal Medicine, Brigham and Women’s Hospital
  • Mark Sterling, Senior Fellow, Project on Advanced Care and Health Policy at the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School

This event is free and open to the public. Lunch will be provided.

Part of the Project on Advanced Care and Health Policy, a collaboration between the Coalition to Transform Advanced Care(C-TAC) and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School focused on development and spread of effective person-centered models of advanced illness care through interdisciplinary analysis of important health law and policy issues.

Organs and Overdoses: The Numbers (Part I)

By Brad Segal

The surging opioid epidemic is a threat to the nation’s public health. This year the CDC reported that mortality from drug overdose reached an all-time high, with the annual death toll more than doubling since 2000. Yet in the backdrop of this epidemic, the country also faces ongoing shortages of a different sort–too few organs for transplantation. Every day, approximately 22 people die while waiting for an organ to become available. To some it is not a surprise–or at least not inconceivable–that the fastest-growing source of organ donors is being fueled by the national spike in drug overdoses. This first post will help delineate the scope and scale of the situation. My follow-up will discuss the ethical considerations and ramifications for public policy.

To start: the numbers. The Organ Procurement and Transplantation Network (OPTN) makes domestic transplant data publicly available online, which currently extends from 1994 to September 30th, 2016. Two decades ago, 29 organ donors died from a drug overdose.* In just the first nine months of this year, that number has climbed to 888 donors. Even with a quarter of the calendar year left to be counted, 2016 has already surpassed previous record set in 2015 (Figure 1).

figure-1

Figure 1

One might question whether this trend is an illusion–perhaps a rise in the incidence of donors who had overdosed reflects an increasing number of transplants. But the data suggest the opposite. Also plotted in Figure 1, the percentage of total organ donors who died from overdose (maroon diamonds, right-sided Y axis) has not remained constant–instead, the percentage has steadily increased. Two decades ago, overdose caused the deaths of 0.6% of all organ donors; this year, it is the cause of death among 12.0% of organ donors nationwide. The rising percentage means that not only are more victims of drug overdose donating organs, but that the pool of organ donors is increasingly composed of such individuals. Continue reading

Marking the 40th Anniversary of In re Quinlan’s Landmark Contribution to Death & Dying Jurisprudence

by Norman L. Cantor

In 1976, the N.J. Supreme Court issued a remarkably insightful ruling regarding the legal status of a permanently unconscious patient.  In re Quinlan served as a judicial beacon guiding development of death & dying jurisprudence.  Its impact is reminiscent of the judicial role played by Brown v. Board of Education in public education.

To appreciate the wondrous nature of Quinlan, recall the setting and background of the case.  In 1975, a 22 year-old woman, Karen Ann Quinlan, was lying unconscious in a N.J. hospital following 2 anoxic episodes caused by toxic ingestions.  She was sustained by a mechanical respirator and a naso-gastric tube.  The diagnosis was PVS (permanent vegetative state) and the prognosis was that the patient would inevitably die within a year without regaining consciousness.  Ms. Quinlan’s devoted parents reluctantly concluded that their daughter would not want to be maintained in her dismal, hopeless condition.  Their priest and spiritual advisor told them that Catholic doctrine would permit withdrawal of “extraordinary” medical intervention such as the respirator.   But when the parents asked the attending neurologist, Dr. Morse, to withdraw Karen’s respirator, he refused.  He contended that professional medical standards precluded that course.  The hospital concurred.  Facing this resistance, Ms. Quinlan’s father turned to the N.J. chancery court seeking formal appointment as his daughter’s guardian with explicit authorization to direct withdrawal of the respirator.

A variety of interested parties responded to Mr. Quinlan’s chancery petition and they all opposed it.  The county prosecutor asserted that pulling the respirator plug would constitute homicide and the state attorney general concurred.  The attending physicians and the hospital contended that pulling the plug would violate their professional responsibilities to the patient.  And a special guardian ad litem appointed to represent Karen Ann Quinlan insisted that it was in the helpless patient’s best interests to have her life prolonged.  The lower court denied the father’s petition and Mr. Quinlan appealed.

On appeal, the N.J. Supreme Court in 1976 faced the unenviable task of shaping legal policy toward medical conduct likely to precipitate the death of a helpless patient.  This was largely uncharted legal territory with no definitive precedents in state or federal courts.  Common sense said that it can’t be a legal mandate to keep pumping fluids and gases into moribund patients until the last possible breath.  Yet a chorus of naysayers proclaimed that pulling the respirator plug on Ms. Quinlan would be unlawful homicide, or a breach of professional medical responsibility to preserve patients’ lives, or a violation of a guardian’s fiduciary obligation to act in a ward’s best interests.  And even if some circumstances might warrant removal of life-preserving medical interventions, hard questions existed about who is entitled to be the decision maker and what test or criteria govern such surrogate decision making.

Continue reading

Malpractice, Terminal Patients, and Cause in Fact

By Alex Stein

Any person interested in medical malpractice or torts in general must read the Missouri Supreme Court’s recent decision, Mickels v. Danrad, 486 S.W.3d 327 (Mo. 2016). This decision involved a physician who negligently failed to diagnose the presence of a malignant brain tumor, from which the patient was doomed to die. The patient first saw the physician when he experienced numbness, blurred vision, and headaches. The physician sent the patient to an MRI scan, which he subsequently reviewed but made no diagnosis. Eleven weeks later, the patient arrived at a hospital in an altered mental state and underwent a CT scan of his brain, which showed a malignant and incurable tumor. Four months later, the patient died of that tumor. According to patient’s oncologist – who testified as a witness in a subsequent malpractice trial – the tumor was incurable when the patient first saw the physician. The plaintiffs offered no evidence controverting that testimony. Continue reading

California the latest to pass a Death with Dignity law, 5th in US

Medical personnel are trained to “first do no harm.” In end-of-life treatment, that simple directive can be difficult to interpret, and the legal landscape has evolved in the United States over the past 25 years. In 1990, the US Supreme Court ruled that physicians and other health care providers could withhold medical treatment at the direction of a patient or the patient’s directed agent.

Most recently, a movement to provide patients’ help in dying has been termed “death with dignity” and “assisted suicide.” Federal law does not currently address euthanasia or “mercy killings” in terminal patients who seek a physician’s aid to end their own suffering. Rather, the patient’s right to obtain a physician’s or other health care provider’s help to end their life is established by state law. Continue reading

REGISTER NOW! Aligning Policy and People: Why the Time is Right to Transform Advanced Care

hands_Ingram Publishing_slideJune 21, 2016, 9am – 1pm

Wasserstein Hall, Milstein East (2036), Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

This event is free and open to the public, but seating is limited. Register now!

Description

Please join us for the inaugural event of the Project on Advanced Care and Health Policy, a collaboration between the Coalition for Advanced Care (C-TAC) and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. This conference will feature policymakers, thought leaders, family caregivers, clinicians, consumer advocates, and others working to identify the timely, practical, and actionable opportunities to transform care for people with advanced illness nearing end-of-life.

Confirmed Speakers

Continue reading

REGISTER NOW: Aligning Policy and People: Why the Time is Right to Transform Advanced Care

hands_Ingram Publishing_slideJune 21, 2016, 9am – 1pm

Wasserstein Hall, Milstein East (2036), Harvard Law School, 1585 Massachusetts Ave., Cambridge, MA

This event is free and open to the public, but seating is limited. Register now!

Description

Please join us for the inaugural event of the Project on Advanced Care and Health Policy, a collaboration between the Coalition for Advanced Care (C-TAC) and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. This conference will feature policymakers, thought leaders, family caregivers, clinicians, consumer advocates, and others working to identify the timely, practical, and actionable opportunities to transform care for people with advanced illness nearing end-of-life.

Confirmed Speakers

Continue reading

Is It Immoral for Me to Dictate an Accelerated Death for My Future Demented Self?

by Norman L. Cantor

I am obsessed with avoiding severe dementia. As a person who has always valued intellectual function, the prospect of lingering in a dysfunctional cognitive state is distasteful — an intolerable indignity. For me, such mental debilitation soils the remembrances to be left with my survivors and undermines the life narrative as a vibrant, thinking, and articulate figure that I assiduously cultivated. (Burdening others is also a distasteful prospect, but it is the vision of intolerable indignity that drives my planning of how to respond to a diagnosis of progressive dementia such as Alzheimers).

My initial plan was to engineer my own demise while still competent to do so. My sketch of methodologies and my preferred course (stopping eating and drinking) appear at: http://blogs.law.harvard.edu/billofhealth/2015/04/16/my-plan-to-avoid-the-ravages-of-extreme-dementia/. The obvious hazard in that plan is cutting short a still vibrant and satisfactory existence.

An alternative strategy would be to allow myself to decline into incompetency, but beforehand to dictate, in an advance directive, rejection of future life-sustaining medical interventions. This strategy would probably work as applied to serious maladies such as kidney disease, lethal cancer, or congestive heart failure. The disturbing issue then becomes timing. The onset of such serious maladies is fortuitous and years of lingering in dementia might precede my demise.

A further alternative would be to seek to accelerate my post-competence demise by declining not only major medical interventions such as mechanical respirators or dialysis, but also more simplistic items like antibiotics, antiarrhythmics, and artificial nutrition and hydration. My envisioned scenario is that infection would occur early (via urinary tract, skin, or pneumonia) and that this condition, left untreated, would precipitate my death. (My advance instructions would allow palliative but not curative measures.)

Continue reading

Lecture Tomorrow, 11/10! Euthanasia in Belgium: The most recent legal developments and policy challenges

Euthanasia in Belgium: The most recent legal developments and policy challenges
November 10, 2015 11:00 AM – 12:15 PM

Conference Room, 1st floor
Center for Bioethics at Harvard Medical School
641 Huntington Ave., Boston, MA [Map]

A lecture by Sigrid Sterckx, Professor of Ethics and Political and Social Philosophy, Ghent University, Belgium; End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Belgium; Bioethics Institute Ghent, Ghent University, Belgium.

In 2002, euthanasia by a physician (the intentional termination of a patient’s life at his or her request) was depenalized in Belgium for adults and emancipated minors. In 2014, the law was extended to competent minors, without an age limit. The frequency of performance of euthanasia is rising very rapidly, having more than doubled in the last five years (accounting for one death in twenty, about 8 per day in Flanders, the Dutch-speaking region). Moreover, although the prevalence of euthanasia remains highest in patients with cancer, a clear shift is visible in the characteristics of patients who request euthanasia and whose requests are granted. The largest increases are among women, and those aged 80 or older, with lower education levels, and those dying in nursing homes. Continue reading

Finally, a Final Rule on Advance Care Planning

In a victory for common sense, good policy, and good care, reimbursement for end-of-life counseling was safely tucked into the 2016 Medicare Payment Rules issued by CMS last Friday. The calm adoption of advance care planning shows welcome progress from the “death panels” hysteria that plagued this sensible policy when it was first proposed six years ago. The list of advance care planning supporters is long, including: numerous physician organizations, the Centers for Disease Control and Prevention, the Institutes of Medicine, the American Hospital Association, and over 80 percent of Americans. So, what is advanced care planning and why does it matter?

Given the circus that originally surrounded it, people may be surprised to learn that this policy simply involves the addition of two billable codes to the Medicare Physician Fee Schedule. The first code, 99497, covers an initial 30-minute consultation on end-of-life planning, with a second, 99498, covering 30 additional minutes, if needed. Importantly, patients do not need to be seriously ill to access this benefit – a consultation can be scheduled at any time, for example, as part of an annual physical. During this meeting, patients discuss the kind of interventions they would want if they become critically ill, or as they approach the end of life. Such conversations enable collaboration between the patient, family, and medical team – it opens the door for an ongoing dialogue about priorities and goals of care (which may evolve over time).

Planning for the end of life matters because advances in medicine have created a dizzying array of interventions and palliative care options for people who are gravely ill. There are many clinical and psychosocial benefits to communicating one’s preferences around end of life care. In a September 2015 Kaiser Family Foundation poll, 89 percent of respondents said doctors should discuss end-of-life plans with patients – but only 17 percent had actually had such a discussion with their doctor. Formal recognition of the value of advance care planning is an important step in encouraging more patients and doctors to initiate the conversation.