Empty hospital food tray with plate and glass

The Ethics of Dementia Advance Directives for Receiving Oral Food and Water

By Beatrice Brown

Last month, Kaiser Health News (KHN) told the story of Susan Saran, a woman diagnosed with frontotemporal dementia. According to KHN, Saran consulted a lawyer and signed an advance directive for dementia after experiencing two brain hemorrhages in 2018. The document directs caregivers to withhold hand feeding and fluids at the end of life for those with advanced dementia. However, her continuing care retirement community told her that they could not honor her wishes because “the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary.” As noted by Dr. Stanley Terman, “Even when people document their choices – while they still have the ability to do so – there’s no guarantee those instructions will be honored.”

According to KHN, these dementia advance directives are “a controversial form” of voluntarily stopping eating and drinking (VSED), wherein a terminally ill patient who still retains mental capacity refuses food and water to hasten their death. VSED is considered by many to be a morally acceptable extension of a patient’s right to refuse treatment, a right codified in the landmark cases of Karen Ann Quinlan and Nancy Cruzan. The ethical question here, then, is whether the refusal of hand feeding and fluids requested in dementia advance directives is another form of VSED and is thus morally permissible, or if this refusal is ethically distinct from VSED and is perhaps morally prohibited. Read More

Blurred image of a patient in critical condition in the ICU ward.

“An Act Improving Medical Decision Making:” An Argument in Favor of MA House Bill 3388 and Senate Bill 843

By Beatrice Brown

On September 10, 2019, the Joint Committee on Judiciary at the Massachusetts State House heard testimony regarding House Bill 3388 and Senate Bill 843, “An Act Improving Medical Decision Making.” The Massachusetts Medical Society (MMS) was among those testifying in favor of the act. As noted by MMS, Massachusetts is one of only five states in the U.S. that does not have a default surrogate consent statute for incapacitated patients without a health care proxy. The intent of a default surrogate consent statute is “to provide legal authority for health care decision-making through a non-judicial rule of law where no guardian or agent had been appointed.”

Without such a statute in place, this means that a patient who is incapacitated and has not declared a health care proxy must await treatment while a guardian is appointed by the courts. This may be a lengthy, time-consuming process that physically drains hospitals’ resources and emotionally drains families. By contrast, these default surrogate consent statutes establish a list of surrogates that can be appointed by physicians to make decisions in lieu of the incapacitated patient. For example, in the Massachusetts bills, the following persons are listed as candidates who may be appointed as surrogates: the person’s spouse, unless legally separated; the person’s adult child; the person’s parent; the person’s adult sibling; and any other adult who satisfies the requirement of subdivision seven of the bill which states, “The person’s surrogate shall be an adult who has exhibited special care and concern for the person, who is familiar with the person’s personal values, who is reasonably available, and who is willing to serve.” Read More

Photograph of a doctor holding a headset sitting in front of a laptop

Navigating Sensitive Hospital Conversations in the Age of Telemedicine

By Adriana Krasniansky

On March 5, 2019, a terminally ill patient from Fremont, California, learned that he was expected to die within several days. The doctor who delivered the news did so via a robotic video teleconferencing device. 

Ernest Quintana, a 79-year-old patient with a previously-diagnosed terminal lung condition, was taken to the Kaiser Permanente Fremont Medical Center emergency room after reporting shortness of breath. His 16-year-old granddaughter, Annalisia Wilharm, was with him when a nurse stopped by and said that a doctor would visit shortly to deliver Mr. Quintana’s results. 

The video below, recorded by Ms. Wilharm, shows Mr. Quintana’s consultation with a critical care doctor through an Ava Robotics telepresence device—in which the doctor explains Mr. Quintana’s rapidly worsening condition and suggests transitioning to comfort care. Ms. Wilharm and her family chose to share the video with local media and on Facebook, inciting a debate around the legal and ethical challenges of using telemedicine in critical care conversations. 

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Photo of a stethoscope, gavel, and book

The End of Dramatic Legal Saga: French Patient Vincent Lambert has Died

By Audrey Lebret

There are few cases as publicized in France as the story of Vincent Lambert, a patient in a vegetative state whose fate deeply divided his family. On June 28, 2019, the Cour de Cassation signed the last substantial decision of the Vincent Lambert case, after six years of proceedings. The patient died on July 11, 2019.

The facts

In 2008, Vincent Lambert was involved in a traffic accident that left him in a quadriplegic state and suffering from massive brain trauma. In 2011, a medical evaluation described his state as minimally conscious. Doctors tried to establish a code of communication to which he was never responsive. Nonetheless, doctors tracked some behaviors that they interpreted as an opposition to treatments and a refusal to live (Conseil d’Etat judgement, at 20). In 2013, his doctor initiated a procedure with the agreement of Mr. Lambert’s wife in order to interrupt the treatments. That initiated a lengthy court battle.

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Hands of a young doctor wrapping around the hand of an elderly person

C-TAC and Petrie-Flom Center Convene Leaders to Explore New Approaches for Serious Illness Care

By Stephen Waldron

Health care leaders gathered at Harvard Law School on April 26 to discuss opportunities to redesign care delivery for people with serious illness. These efforts are informed by the shift to value-based care, which has been championed by innovators in the advanced care movement.

The event was part of the Project for Advanced Care and Health Policy, a collaboration between the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School and the Coalition to Transform Advanced Care (C-TAC). Read More

Image of a laptop showing a doctor holding a stethoscope. Telemedicine abstract.

How to Think About Prognosis by Telemedicine

Recently in these very pages, Evan Selinger and Arthur Caplan responded to an article in which Joel Zivot defended the use of telemedical technologies in informing patients and their families of dire news, in the context of the viral story of a doctor informing the family of Ernest Quintana of his imminent death via robotic video-link. Zivot argued that the use of technology to deliver such news is not the problem and what matters is the communicative skills of the physician. Selinger and Caplan respond that patients have basically different views on the propriety of using technology in these ways, and urge a regime of informed consent.

Selinger and Caplan are probably right on the short term policy question.

While we know there is a great deal of diversity in whether people think using telemedicine in this way is disrespectful, there is also no obvious answer among the alternatives. Warning people that this might happen and letting them opt-out, then, offers a short-term way to respect people’s preferences. And, as Selinger and Caplan acknowledge, that may be all that is needed. Over time, communication like this may become as anodyne as today it seems avant-garde. Read More

Telemedicine. Image of a patient speaking to a doctor on a mobile phone.

Telemedicine Adds a Wrinkle to Latest New Mexico Legislative Debate on Aid in Dying

Then-Senate Majority Leader Bill Frist was roundly criticized in 2005 for declaring that Terri Schiavo, a Florida woman who had gone into cardiac arrest at age 26, was “not somebody in persistent vegetative state” after viewing videotapes of her condition. The tragic situation is mostly remembered as a low point for federalism and end of life policy.

But there is another issue stemming from the debate that ought to be considered. Although Frist backed away from calling his review of videos an actual diagnosis, it is interesting to think how the use of technology to make a remote determination of a patient’s condition has changed since Frist made his assessment.

Indeed, over a decade later, a New Mexico bill is proposing the opposite: allowing individuals with a terminal illness to utilize telemedicine consultations to seek aid to end their lives. It is not surprising that New Mexico lawmakers would consider telemedicine as part of their proposal. Given its geography, the state has embraced telemedicine as a means of expanding access, and innovative workforce initiatives such as Project ECHO were birthed there.

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elderly person's hand clasped in young person's hands

How Would You Like to be Treated if You Had Dementia?

The New Yorker just published an article full of ethical questions about the best health care treatment for dementia patients. It should make you think about which life you would choose. Larissa MacFarquhar’s piece is titled “The Comforting Fictions of Dementia Care.” Its subtitle suggests a sad story, noting “Many facilities are using nostalgic environments as a means of soothing the misery, panic, and rage their residents experience.” The article tells numerous powerful stories of dementia patients’ good and bad experiences.

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Thad Pope on ‘The Week in Health Law’ Podcast

By Nicolas Terry and Frank Pasquale

Subscribe to TWIHL here!

Our guest this week is Thaddeus Mason Pope, Director of the Health Law Institute and Professor of Law at Mitchell Hamline School of Law. Thad is also a Ph.D. with multiple global academic posts. This week we discuss grave and complex problems in end of life care, focusing on the tragic case of Jahi McMath. Thad recently published “Brain Death Forsaken,” and offers a wealth of insight on this and similar situations. The definition of death has complex implications for insurance, reimbursement, malpractice, and even criminal law.

The Week in Health Law Podcast from Frank Pasquale and Nicolas Terry is a commuting-length discussion about some of the more thorny issues in Health Law & Policy. Subscribe at Apple Podcasts, listen at Stitcher Radio Tunein, or Podbean, or search for The Week in Health Law in your favorite podcast app. Show notes and more are at TWIHL.com. If you have comments, an idea for a show or a topic to discuss you can find us on Twitter @nicolasterry @FrankPasquale @WeekInHealthLaw.

It’s Time to Reinvigorate the Constitutional Claim for Physician Assistance in Dying

by  Norman L. Cantor

Since 1997, when the U.S. Supreme Court rejected federal constitutional challenges to New York and Washington prohibitions of assistance to suicide, the notion that a dying patient might have a constitutional right to obtain a lethal prescription has gotten short shrift.  Even when the dying patient’s claim for physician assistance in dying (PAD) has relied on state constitutional provisions, no state supreme court has ruled that state liberty or equal protection guarantees so benefit a competent, terminally ill medical patient.  See T.M. Pope, Legal History of Medical Aid in Dying: Physician Assisted Death in U.S. Courts and Legislatures,   N. Mex. L. Rev.  (2018). At least 5 state highest courts have rejected such claims.  Yet developments and insights emerging over the last 21 years in death and dying jurisprudence provide reason to reinvigorate constitutional challenges to state prohibitions on a physician’s providing a lethal substance to a competent, fatally stricken medical patient.

The first Achilles heel in current legal doctrine relates to the “liberty” concept invoked by fatally stricken claimants.   When Chief Justice William Rehnquist rejected the patients’ liberty claim in Washington v. Glucksberg, he labeled it as seeking a “right to suicide.”  That over-simplistic formulation of the constitutional claim presaged its failure.  Of course the guides to fundamental liberty, i.e., the traditions and collective conscience of the people, do not encompass “suicide.”  Suicide, broadly viewed as a choice to “prematurely cut short a viable life, usually for reasons of a transient nature and often involving depression,” has always been disdained and discouraged.  Pope, supra, at 29.  Law has customarily allowed physical intervention to prevent suicide, and has criminally punished assistance to suicide.

Rehnquist, though, was unfairly characterizing the liberty claim of dying patients.  Those dying patients in Glucksberg were not advancing a broad prerogative to terminate a life deemed unbearably unhappy.  Rather, they were asserting a fatally stricken person’s interest in medical management of the dying process and in control of the timing of an unavoidable, lurking death.  Only in the 20th century, with development of modern medical tools, did this issue really emerge.  Only then did a fatally stricken patient incur risk of a protracted dying process with accompanying suffering or degradation.  The 21st century is witnessing an expanded incidence of medically mediated death, a phenomenon warranting renewed focus on end-of-life self-determination.

The 21st century is also witnessing development in another measure of fundamental liberty – the collective conscience of the people.  Polls in 2017 show that 67% of Americans now support the concept of physician-assisted death.  Public sentiment may not be a determinative factor, but it is relevant in shaping the meaning of fundamental liberty.  Also relevant are developments in legalization of PAD as in California, Colorado, New Hampshire, Montana, and the District of Columbia. In short, a basis exists for refining and resubmitting the constitutional claim that self-determination in management of a looming, unavoidable dying process should be deemed a fundamental aspect of liberty.  Read More