Newsweek article: Mass exodus from organ donation registries

Alex Schadenberg
Executive Director, 

Euthanasia Prevention Coalition

The US Department of Health and Human Services (HHS) sent out the following media release on July 21, 2025 concerning organ donation and the organ transplant system in America.

Health and Human Services examined 351 organ donation approvals and determined that in 103 of the cases the dead donor rule may have been violated. 

Organ donation is a difficult topic to write about since organ donation can save lives. I have written about issues related to organ donation for many years. It is a scandal that death is sometimes caused by organ removal rather than organs being retrieved from a dead donor.

Since then we have published three articles on the organ donation scandal (Article 1) (Article 2) (Article 3).

Joshua Rhett Miller reported for Newsweek on August 13 that the recent organ donation articles have led to an unprecedented mass exodus from organ donation registries. Miller wrote:

Thousands of Americans have removed themselves from organ donor registries following "irresponsible reporting" led by the New York Times, officials said.

The Association of Organ Procurement Organizations (AOPO), a trade group that represents 46 of the nation's 55 federally designated nonprofit entities that help facilitate donations, accused the newspaper of a "lack of balance and accuracy" in its recent coverage of the problems in the sprawling transplant system.

An AOPO letter stated that:

"These stories have directly led to the biggest increase in people removing themselves from donor registries ever recorded, putting patients waiting for transplants at greater risk,"

The AOPO letter claims both articles contained "serious factual inaccuracies."

Claims about factual inaccuracies don't negate the reality that the US Health and Human Services examined 351 organ donation approvals and found:

• 73 patients with neurological signs incompatible with organ donation.
• At least 28 patients may not have been deceased at the time organ procurement was initiated—raising serious ethical and legal questions.

There were also problems with poor neurologic assessments, lack of coordination with medical teams, questionable consent practices, and misclassification of causes of death, particularly in overdose cases.

In other words, the AOPO should have monitored organ donation programs to prevent the scandal that has occurred. People support the dead donor rule. People are willing to donate their organs once they have died, but they do not want to die by donating their organs.

Last year the Euthanasia Prevention Coalition published an excellent article by lawyer, Sara Buscher titled: Let's not get rid of the Dead Donor Rule.

If the Dead Donor Rule is ignored or removed it results in people losing trust in the system and withdrawing their names from organ donation registries.

Let’s Not Get Rid of the Dead Donor Rule

By Sara Buscher, Attorney, Past Chair, EPC USA 

The Dead Donor Rule requires that a person to have died before organs can be harvested for transplant. 

EPC supports the dead donor rule and we recognize that the Dead Donor Rule will prevent the approval of euthanasia by organ donation. In a recent Tulane University Medical School lecture, Law Professor Thaddeus Pope said violations of the dead donor rule are rampant.

Brain death was created in 1968 as a workaround to the Dead Donor Rule to generate more transplant organs and free up ICU beds. It eventually became legal in the 1980’s through adoption of the Uniform Determination of Death Act (UDDA) by countries and the each US state.

The latest effort to legitimize harvesting organs from living people suffered a set back when the Uniform Law Commission chose to stop its effort to revise the UDDA. The revision to the UDDA was designed to give legal cover to all the ways in which organs are being taken from living persons. Professor Pope attributes the shortage of organs to fewer car accident deaths. He also expressed concern that people who support the Dead Donor Rule could demand more accountability and enforcement of existing laws. I would say disability groups could also demand more accountability and enforcement.

Before continuing this report on the lecture, I want our readers to know that some of the people whose organs are being harvested could recover, if given enough time, and doctors cannot predict which ones will recover. People are declared brain dead, on average, in 4 days, but it takes about 2 weeks for a coma to resolve and 3 to12 months after injury to recover consciousness. According to a recent study:

“Predicting who will recover following severe traumatic brain injury, and to what degree, can be challenging. Yet, families are often asked to make decisions about continuing or withdrawing life support, such as mechanical breathing, within just 72 hours of the injury” 

The same study found 40% of those whose life support was not withdrawn recovered at least some independence. According to a federal fact sheet, people who are in a state of permanent unconsciousness (coma) survive 60% to 80% of the time; coming out of the coma within 4 weeks, usually moving to a vegetative state or partial consciousness and slowly continuing to improve. For those whose condition was caused by a physical impact, 60% to 90% will regain consciousness by 1 year after injury.

The Uniform Determination of Death Act says:

An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.

Professor Pope says there are four ways the Dead Donor Rule and UDDA are being violated. About two-thirds involve brain death and one-third cardiac death.

1. Brain Death. People are being labelled brain dead even though parts of the brain are still functioning and their condition may be reversible. There is “massive variability” in how brain “death” is determined, from state to state, hospital to hospital and doctor to doctor.
2. Donation by Cardiac Death (DCD). Here organs are being taken before there is certainty heart stoppage is irreversible. When life support is stopped, the transplant team waits for the heart to stop before harvesting organs. Research shows the heart could restart on its own within 5 minutes, but some teams are waiting only 2 minutes for the first incision. Organs obtained this way may be slow to start after transplant due to oxygen deprivation before being harvested.
3. Normothermic Regional Profusion (NRP). After the person’s heart stops and does not restart during the waiting period for cardiac death, the person is attached to a heart-lung machine. Before turning it on to circulate oxygenated blood, arteries to the brain are clamped off. Then, organs are harvested. This method minimizes the time transplantable organs are deprived of oxygen.
4. Premortem Interventions. The family of a patient on life support is told the patient has died and what they view as life support is really organ support. The living person is then turned over to the transplant team.

To solve the problem of rampant dead donor rule violations, Professor Pope says the UDDA should be changed. As already stated, a four year effort to do this within the Uniform Law Commission failed in 2023. A few months ago Professor Pope called for a new federal revised UDDA that would override state UDDA statutes. He is now calling for changing public opinion to allow families to agree to organ harvesting for people who are nearly dead. This could also be done by an advance directive. He pointed to a national public opinion survey about death and organ donations.

The national public opinion survey supports organ donation from nearly dead people, but is flawed. Respondents were asked questions about the following vignette.

Jason has been in a very bad car accident. He suffered a severe head injury and is now in the hospital. As a result of the injury, Jason is completely unconscious. He cannot hear or feel anything, cannot remember or think about anything, he is not aware of anything, and his condition is irreversible. Jason will never wake up. He also cannot breathe without mechanical support, but is on a breathing machine that keeps his lungs working. Without the machine, Jason's heart and all other organs would stop within minutes. Although he will never wake up and cannot breathe without the support of the machine, Jason is still biologically alive. Before the injury, Jason wanted to be an organ donor. The organs will function best if they are removed while Jason's heart is still beating and while he is still on the breathing machine. If the organs are removed while Jason is still on the machine, he would die from the removal of organs (in other words, the surgery would cause Jason's biological death).

The vignette says the doctors know Jason will never improve or recover, yet this cannot be predicted as indicated earlier. Other problems with the survey include the respondents were self-selected and tended to be in categories that would be more supportive such as more liberal and less conservative than the general population.

We have a better idea. Let's not get rid of the Dead Donor Rule.

More articles on this topic:

• No to killing for organs (Link).
• Organ donation procedure violates the Dead Donor Rule (Link).
• Proposed changes to the UDDA will cause more litigation (Link). 
• Are people who are declared brain dead always dead? (Link).

PCHETA (Pa Cheetah) -- the bill with 9 lives

By Sara Buscher, Attorney, Past Chair, EPC USA 

They say a cat has 9 lives. The  "Pa Cheetah" certainly does. 

The first version of the Palliative Care and Hospice Education and Training Act (PCHETA) was introduced in 2004. It evolved into the current version in 2015. Come 2024 that will be 9 years. The Euthanasia Prevention Coalition USA has been opposing PCHETA since 2017. According to the HHS Office of Inspector General:

“Our reports and investigations have revealed several concerning issues, including poor—sometimes harmful—quality of care, fraud schemes that involve enrolling beneficiaries without their consent, inappropriate billing practices, limited transparency for patients and their families, a payment system that creates incentives to minimize services, and a rapid growth in the number of new hospices, often to take advantage of these conditions.”

We see the Bill rewarding those who nudge people into hospice (by way of palliative care programs) where they are subjected to abuse and, in some cases, euthanasia. One reason supporters keep trying to get this Bill passed, are its meaningless safeguards.

The Bill’s Safeguards are Illusions.

The current bill, S. 2243 has two safeguards in Section 5. Two years ago, Senator Baldwin the bill’s sponsor, got PCHETA language added to a House budget reconciliation bill without the Section 5 safeguards. The Senate Finance Committee refused to include PCHETA, so once again the Bill died. In mid-September 2023, Senator Baldwin announced she will try to get it included in a bipartisan bill that must pass, probably without safeguards. She said this as she withdrew S. 2243 from action by the Senate Health, Education, Labor and Pension (HELP) committee.

The Section 5 safeguards are unenforceable and pretty much meaningless.

Don’t talk about it, Section 5(a). Section 5(a) prohibits using the Bill’s funds to provide, promote, or provide training about any item or service subject to the Assisted Suicide Funding Restriction Act (ASFRA). Nothing prohibits federal funding of teaching about assisted suicide and euthanasia as long as the funding does not come from PCHETA. The ASFRA itself does not prohibit federal funding for speaking about assisted suicide and euthanasia, only the provision of items and services for that purpose. Nor, does it prohibit withholding or withdrawing medical care, nutrition or hydration. It also allows funding for relieving pain or discomfort with an increased risk of death, as long as death is not intended. Lastly, Compassion & Choices has a goal of repealing ASFRA.

Don’t do it, Section 5(b). This section says: 

“As used in … [PCHETA], palliative care and hospice shall not be furnished for the purpose of causing, or the purpose of assisting in causing, a patient’s death, for any reason.” 

Sounds good, doesn’t it? Here’s the problem. It only applies to PCHETA funds, nothing else; PCHETA only funds education, research and public information, not the furnishing of care. In other words, Section 5(b) does nothing.

Committee stalemates over controversial changes to Brain Death Law

By Sara Buscher
Past Chairperson, EPC-USA

A draft of the revised Uniform Determination of Death Act (RUDDA) is headed to the Uniform Law Commission’s July 26 annual meeting for a First Reading. Possible actions could be to put this project on hold or to give the drafting committee further direction. It won’t be offered to the states this year.

This project began in response to those in the medical community who typically declare people brain dead. They asked the Uniform Law Commission to revise the UDDA to:

• Eliminate lawsuits by family members, especially by parents of children declared brain dead.
• Make it easier to ration medical care by declaring patients brain dead, especially those in Intensive Care Unit beds. 
• Make somewhat more organs available for transplantation.

The UDDA provides a shield from medical malpractice liability by granting doctors the right to declare living patients to be brain dead leading to the cessation of life-sustaining treatment. Brain death can be used to limit liability for medical malpractice by cutting off the costs of care for serious brain injuries.

An informal meeting between the Drafting Committee and 20 or so Commissioners was held on June 9. Because the Committee is stalemated, it has not voted. Instead language for the two camps is being presented and Commissioners are being asked to pick one. Usually draft uniform laws are recommended to the Commissioners after a drafting committee reaches a consensus. The Committee’s inability to arrive at a consensus reflects the lack of scientific evidence and disagreements within the medical community.

The Drafting Committee’s two options are:

• Option 1: Keep the existing UDDA which has not changed since 1980. It says: “An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.”

OR

• Option 2: Revise (loosen) UDDA criteria and provide suggested, but not required, opt-out option language for those who don’t want the loosened criteria applied to them. Draft language follows later.

Of the available options, EPC and EPC USA support Option 1 provided it does not violate the dead donor rule with a brain death opt-out for patients and providers that could be exercised at any time just like informed consent can be modified or changed at any time. In fact, we believe that people currently have the right to decide how their deaths should be determined and have provided language to do so in our Life Protecting Health Care Power of Attorney, available at https://epc-usa.org/resources/

If you want to provide input to the Uniform Law Commission you can email a letter to Drafting Committee Chair Judge Samuel Thumma at sthumma@appeals.az.gov with a copy to Lucy Grelle at lgrelle@uniformlaws.com, asking that it be posted online. It should be sent no later than July 12.

Drafting Committee’s Language

The language for Option 2 follows.

Determination of Death

     (a) An individual is dead if the individual has sustained:

              (1) permanent cessation of circulatory and respiratory functions; or

              (2) permanent

                      (A) coma,

                      (B) cessation of spontaneous respiratory functions, and

                      (C) loss of brainstem reflexes.

     (b) A determination of death under subsection (2) must be made in accordance with accepted medical standards.

Accommodation

    (a) An individual may object to a determination of death under Section [brain death].

    (b) An objection under subsection (a) must be expressed in the individual’s medical records.

    (c) A health-care institution shall adopt a policy in a record that sets forth the reasonable efforts it will make to accommodate an objection under subsection (a). The policy must:

           (1) require the institution to comply with the individual’s choice that a determination of death not be made under Section [brain death]; and

           (2) provide that an objection must be made before beginning the clinical evaluation for the determination of death under Section [brain death]

The UDDA and Option 2 allow people to be legally declared dead who are alive.

A open letter to the Drafting Committee from by 107 experts says of the current UDDA: “Now it is widely accepted that brain dead bodies are biologically living organisms.”[1] Harvard ethicist Robert Truog M.D. says the central justification equating brain death with biological death is now known to be false.” It is well accepted that “brain death” was legally adopted to allow the supply of organs for transplantation. “Donation after circulatory death determination is not preferred, as this manner of death tends to render organs unusable…”

One of the Commissioners argued for a law that would treat people who are biologically alive as legally alive instead of using a quality of life (rationing on the basis of disability) philosophy. His concern was ignored, but not disputed.

“Brain death” is a label reflecting value judgments

Professor Thaddeus Pope says “…brain death is recognized as a value judgment instead of as a scientific truth.”^[2] The lack of scientific evidence shows up in several ways, particularly wide variation on standards in standards, misdiagnosis and racial disparities.

Lack of Scientific Evidence

The American Academy of Neurology (AAN) Guideline for determining brain death is the Drafting Committee’s favored “accepted medical standard”. (At one time they referred to it in a definition of the medical standard.) The AAN Guideline says the evidence supporting brain death determinations is severely limited. So, the AAN relies on the UDDA legal standard, not scientific evidence, for its brain death medical standards, saying in its Guideline: “because of the deficiencies in the evidence base, clinicians must exercise considerable judgment when applying the criteria in specific circumstances.” In other words, the Guideline allows its criteria to be overridden by clinical judgment.

Systemic Racism

It is fairly well known that organ donation and distribution discriminate on the basis of race. Blacks have the highest per capita rate of being declared brain dead of any race with whites being the lowest. Despite that, whites are well over 1.5 times as likely to get a transplanted organ as Blacks. The number of organ transplants performed on blacks in 2020 was 27.7 percent of the number of blacks currently waiting for a transplant. The number of transplants performed on whites was 47.6 percent of the number currently waiting.

Wide Variation in Medical Standards leads to Misdiagnosis

Brain death diagnostic procedures vary so widely that an AMA Journal of Ethics article says such inconsistency should not be tolerated; it will lead to more misdiagnosis and erode public trust. The author says the UDDA by designating “accepted medical standards” allows them to be set nationally, regionally and locally. “If we cannot promise robust and 100% accurate diagnosis of brain death, we cannot in good faith counsel families about organ donation, as to do so would violate the dead donor rule.”

Under the current UDDA, from 50% to 84% of brain dead people are misdiagnosed; how many could recover is unknown. The tests that would identify these people are not run. Once these people are declared brain dead, insurance coverage stops, life-sustaining treatment is withdrawn[3] and they die. Both Options 1 and 2 ignore this.

Issues Raised by the Draft Language

The language itself raises some issues and goes further than you would think for circulatory and respiratory death as well as brain death. Remember Damar Hamlin, the football player who collapsed during a game when his heart stopped? His heart was restarted several times on the field, but he was unconscious (i.e., in a coma) and ended up in the hospital on a ventilator. Under the Drafting Committee’s proposal it’s possible he could have been declared brain dead as the following discussion illustrates. Yet with treatment, he has recovered and been cleared to play football.

Brain death is not limited people who are going to die anyway.

Neither Option 1 nor 2 limits brain death to those who are going to die anyway. In fact, people who could live for many years and people who could fully recover can be declared brain dead.

The change to “permanent” is not limited to treatments rejected by the patient.

The Committee’s memo says: “irreversible” as used in the UDDA means cessation cannot be reversed; “permanent” means cessation could be reversed but it will not be. Remember Damar? What if the doctors decided to stop restarting his heart? In the meeting it was suggested this would come into play by not performing CPR when the patient has a Do Not Resuscitate (DNR) order. Neither Option 1 nor 2’s language limit withheld treatments to only those the patient has rejected.

The change to Coma⁺ from Whole Brain criteria reaches too far.

The Committee is getting input only from those medical organizations that want the UDDA loosened. Option 2’s language ignores parts of the brain that typically continue to function in people now labeled brain dead. There are other practice areas of medicine, such as the Neurocritical Care Society with its Curing Coma Campaign, that believe more people can have improved outcomes and quality of life if the focus is on treatment for patients dealing with coma. The comatose should not be written off.

An analysis in the AMA Journal of Ethics says the existing brain death examination “evaluates function but cannot distinguish between a “stunned,” quiescent brain and an irreversibly damaged brain;… ‘super locked-in patients’ …could appear brain dead, despite preserved consciousness or afferent olfactory and visual pathways, analogous to vegetative patients who demonstrate subclinical awareness when carefully interrogated.” We know that coma can evolve to persistent vegetative state or partial consciousness and that about 50% of those in a persistent vegetative state following a traumatic injury, eventually recover consciousness. This process takes a few months to a year, but brain death is usually determined much more quickly. A quick labeling of brain death does not allow this healing process to take place.

---

[1] Shewmon DA et al., “Statement in Support of Revising the Uniform Determination of Death Act and in Opposition to a Proposed Revision,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine (2021):5 of 35.

[2] Thaddeus Mason Pope, "Brain Death Forsaken: Growing Conflict and New Legal Challenges," Journal of Legal Medicine 37, no. 3-4 (July-December 2017): 265-324.

[3] Life sustaining treatment, referred to as organ sustaining treatment continues for brain dead organ donors until the organs are harvested.

Proposed changes to the Uniform Determination of Death Act (UDDA) will lead to more litigation.

Date: March 14, 2023

To: Members of the ULC Drafting Committee re the Uniform Determination of Death Act

I have been observing your meetings on the Uniform Determination of Death Act (UDDA) on behalf of the Euthanasia Prevention Coalition USA. We are aging and disability advocates, lawyers, doctors, nurses and politicians who support positive measures to improve the quality of the lives and well being of people instead of offering them assisted suicide and euthanasia.

I am an attorney with a varied background. Relevant to your deliberations, I was a columnist on medical decision making for a state bar publication, a pro bono member of a disability rights litigation team, specializing in disability discrimination within health care, and a member of a governor’s task force on controlling health care costs.

As you consider revisions to the UDDA, I recommend you ask yourselves if they will increase or decrease trust between patients and physicians. Consider the example of Lisa Avila whose family rejected her brain death diagnosis and resulting plan to stop life supporting treatment after the same providers missed her fatal ectopic pregnancy. “For them to push the family to do that is just unspeakable,” said Lisa Avila's aunt, Jessica Jule. “Pretty much they're trying to kill her to reduce them from having to pay the bill that it would cost to keep her alive,” said Avila's cousin, Yvette Townsend.

Not only did their distrust affect decisions for Lisa, it will impact future decisions her family members and friends will make about their own health and that of others. It is well known that distrust leads to a failure to engage and then once receiving health care, insistence on aggressive treatments, especially in communities subjected to health care disparities.

The importance of the trust that underpins medical relationships cannot be overemphasized.

Medical professional relationships have strong elements of trust and are marked by unique vulnerabilities and power disparities. These relational features arguably are greater for medical care than in any other professional arena. In addition, medical liability is seen as an important influence on health care quality and cost, which are of substantial public policy significance.

American Law Institute (ALI) Tentative Draft No. 1 of the Restatement Third of the Law of Torts: Concluding Provisions (March 2022) Ch 11 Liability of Medical Professionals and Institutions, Introductory Comments at 91. For sale at (Link).

Brain death is a label applied to people thought not worth saving. Professor Thaddeus Pope says brain death “has been described as ‘at once well settled and persistently unresolved.’ This is no surprise once brain death is recognized as a value judgment instead of as a scientific truth.”1 Harvard ethicist Robert Truog M.D. says the central justification equating brain death with biological death is now known to be false.” It is well accepted that “brain death” was legally adopted to allow the supply of organs for transplantation. “Donation after circulatory death determination is not preferred, as this manner of death tends to render organs unusable…”

Thus, the Drafting Committee’s effort is fraught with controversy and challenges. Clever wordsmithing will not change that. In this letter, I will comment on your draft language as of the end of your February 10-11 meeting.

Reversible but Permanent Due to Clinician Inaction

The Drafting Committee has changed the criteria for both circulatory/respiratory death and brain death from “irreversible” to “permanent.” This means clinicians can refuse to act to reverse patient conditions. This language would allow a clinician who has caused a potentially fatal injury to refuse to treat the patient, instead waiting for the person to die. This completely undermines trust.

Functional Impairment instead of Anatomical Location of Brain Injury

The Drafting Committee has changed the criteria from whole brain death to a list of functional impairments. The change is from “irreversible cessation of all functions of the entire brain, including the brain stem” to “permanent coma, permanent cessation of spontaneous respiratory functions, and permanent loss of brainstem reflexes…” We know that coma can evolve to persistent vegetative state or partial consciousness and that about 50% of those in a persistent vegetative state following a traumatic injury, eventually recover consciousness. This process takes a few months to a year, but brain death is often quickly determined. A quick labeling of brain death does not allow this healing process to take place.

The Committee’s draft allows for family to gather for a short time after brain death has been determined before circulatory-respiratory support is stopped. Think about what this says to the family: we’ll let you say good-bye while your loved one looks/is alive; then we’ll pull the plug because your loved one really isn’t dead until we do that. This very seriously undermines trust.

The underlying problem is that, brain death represents a value judgment. An analysis in the AMA Journal of Ethics says brain death examination “evaluates function but cannot distinguish between a “stunned,” quiescent brain and an irreversibly damaged brain;… ‘super locked-in patients’ …could appear brain dead, despite preserved consciousness or afferent olfactory and visual pathways, analogous to vegetative patients who demonstrate subclinical awareness when carefully interrogated.”

The Committee’s new language allows more false positive, i.e. incorrect, determinations that people who are alive and possibly could recover will be labeled legally dead. This seriously undermines trust.

Disability Discrimination

Reliance on functional impairments instead of biological injuries as discussed above raises a question of whether the language facially discriminates on the basis of disability. The disability community is looking at this question.

Clever Elimination of Informed Consent

The draft purports to accommodate objections to the harmful apnea test for brain death and for being determined brain dead. However, the objection(s) must be lodged before brain death tests are started. Since no notice of the right to object is required, this is a hollow right. Further, committee discussions indicated this would replace any rights to receive required disclosures for giving informed consent. Informed consent, which is recognized by the common law throughout the country, underpins the trust patients place in physicians and health care systems. Taking this right to informed consent away by ambiguity undermines that trust.

Medical Malpractice Should Not be Rewarded

The Drafting Committee’s charge is in response to concerns from medical providers about increased litigation and challenges to brain death determinations.2 Cases specifically cited in raising these concerns frequently involve alleged medical malpractice leading to what families see as alleged brain death.

Lisa Avila, age 36, died from an undiagnosed ectopic pregnancy, but was labeled brain dead.

Jahi McMath, age 13, lost her airway after a tonsillectomy, allegedly because of malpractice. She was declared brain dead in California but not in New Jersey.

Aden Hailu, age 20, came out of an appendectomy and exploratory surgery with severely low blood pressure and severe, catastrophic brain damage due to lack of oxygen. Her father refused to consent to brain death testing.

Professor Truog says:

Although the issues described above have generated a substantial number of legal challenges, they have not been overwhelming in either their number or their impact, and practice under the current UDDA has been generally well-accepted by the public for more than 40 years. The risk of future lawsuits could also be mitigated by providing an opt-out for patients who object to the determination of death by neurologic criteria, a concession that has been available in New Jersey for more than 3 decades.3

Holding providers accountable for malpractice, including malpractice in determining whether someone is dead, is necessary to support trust in the medical system. Those who commit malpractice should not be given an easy way out by labeling the impaired patient brain dead.

Sincerely,
Sara Buscher, Attorney & C.P.A.
Immediate Past Chair, EPC-USA

1 Thaddeus Mason Pope, "Brain Death Forsaken: Growing Conflict and New Legal Challenges," Journal of Legal Medicine 37, no. 3-4 (July-December 2017): 265-324.
2 Truog RD. “The Uncertain Future of the Determination of Brain Death” JAMA Published online February 07, 2023.
3 Supra n. 2.

A New Assisted Suicide Organization Arises

This article was published on March 13, 2023 on Nancy Valko's blog.

Nancy Valko

By Nancy Valko

In my June, 2016 blog “Tolerating Evil”, I wrote:

“(A) few days after California’s new assisted suicide law took effect, one doctor immediately opened up a dedicated assisted suicide clinic in San Francisco.

Dr. Lonny Shavelson, 64 and a long-time supporter of physician-assisted suicide, was an emergency room doctor for 29 year and then spend 7 years at an Oakland clinic for immigrants and refugees before taking a 2 year break.

His new assisted suicide business could be quite lucrative. Although Medicare will not pay for assisted suicide costs, Shavelson said he will charge $200 for an initial patient evaluation. If the patient is deemed qualified under California law, Shavelson said he would charge another $1800 for more visits, evaluations and legal forms.

Lonny Shavelson

Shavelson defends his business by claiming that: 

“..the demand (for assisted suicide) is so high, that the only compassionate thing to do would be to bring it above ground and regulate it.”

Now, a new medical group called American Clinicians Academy on Medical Aid in Dying has been formed with a Board of Directors and Advisors and chaired by the same Dr. Lonny Shavelson.

The board of this organization includes a Nursing Coordinator, Director of End-of-Life Doula Education, a Volunteer Systems Advisor, as well as Hospice and Palliative Care Advisors including chaplains, nurses and social workers. There is also an “Aid in Dying Ethics Consultation Service”, ethicist, lawyer and pharmacists. An Investigations and Data Collection group is also included as well as State Liaisons in various states.

Also included is Resident Training and Education, Patient Liaisons and Volunteers, Chaplains and End-of-Life Spiritual Advisors, a legal advisor/ethicist, and a member of the San Francisco/Marin Medical Society with a Master’s in Public Health degree.

The American Clinicians Academy on Medical Aid along with the older Death with Dignity organization just had their second conference February 17-18 in Portland Oregon and provided “13 continuing education units for doctors and nurses” and 10 for social workers.

The conference included presentations like “ Some Myths about Aid in Dying”, “State Differences — Present and Future Legal Considerations”, “Hospices and Aid in Dying — A land of many journeys”, “Prognostic Dilemmas in Aid in Dying”, “Medical Aid in Dying for ALS: Navigating Complexities from Prognosis to Ingestion” and “Clinician Attendance on the Aid-in-Dying day — Doctors, nurses, volunteers, end-of-life doulas, hospice staff” and “Socially-Challenging Settings and Circumstances — homeless and impoverished; family conflicts; skilled nursing and long-term care facilities” and “Medically Challenging Cases: Complex gut function; Self-administration by oral, rectal, PEG and ostomy routes” presented by Dr. Shavelson himself. (All emphasis added)

The first National Clinicians Conference on Medical Aid in Dying occurred in 2020 at UC Berkley in California. It was sponsored by groups like UC Davis Health, Mission Hospice and Home Care, the San Francisco Marin Medical Society and the Center for Bioethics and Humanities at the University of Colorado that promotes “Research at the Intersection of Bioethics and Policy for Persons with Disability” (emphasis added) among other groups.

Apparently, Compassion and Choices now has some competition in the relentless campaign to legalize and normalize medically assisted suicide in every US state.

Compassion and Choices

Now, Compassion and Choices has a new “Federal Advocacy and Policy-Bringing the voice of the terminally ill to Capitol Hill“ that:

“advances federal legislation and regulatory change focused on:

• Strengthening and expanding the full spectrum of end-of-life care such as advance care planning, hospice care, and palliative care, while protecting end-of-life options and patient autonomy from federal efforts to weaken or overturn federal and state laws.
  

• Addressing disparities in end-of-life care for historically disadvantaged populations and advancing healthcare equity at life’s end.
  

• Expanding professional end-of-life care education, training and development for all healthcare professionals.
  

• Preventing healthcare entities from disregarding patient values and preferences by refusing care due to their ethical directives and policy-based restrictions. (All emphasis added)”

Compassion and Choices strongly opposes the “Assisted Suicide Funding Restrictions Act (ASFRA) (seeking repeal)” that:

“Prohibits the use of federal funds to provide or pay for any healthcare item or service or health benefit coverage for the purpose of causing, or assisting to cause, the death of any individual.” as well as “Seeking to permanently vacate the proposed rule, “Protecting Statutory Conscience Rights In Health Care (83 FR 3880),” from the U.S. Department of Health and Human Services, which attempted to allow medical providers expanded exemptions from critical healthcare services beyond what the law currently allows.”

Compassion and Choices also supports effort to “Establish Comprehensive Telehealth Reform” and also ominously, the Palliative Care and Hospice Education Act (PCHETA)

Conclusion

In 2018, I wrote the blog “Beware the New Palliative Care and Hospice Education and Training Act” (PCHETA)” about Senate Bill 693.

A similar bill had already passed in the House and this Senate bill was also expected.

As I wrote then:

“As an RN with decades of nursing experience in hospice, oncology (cancer) and critical care, I have been involved with many end-of-life situations. I am an enthusiastic supporter of ethical palliative and hospice care which is indeed wonderful for patients of any age and their families.

Unfortunately, there is a growing trend towards calling unethical practices ‘palliative’ or ‘hospice’ care.”

And we certainly should not be allocating federal dollars for this.

But, despite the enormous push for the PCHETA, it never passed.

There was great opposition by American Association of Physicians and Surgeons, the National Association of Pro-life Nurses , Sara Buscher, a retired attorney and CPA was the  chair of the Euthanasia Prevention Coalition – USA. who advocates for the elderly and disabled , the Healthcare Advocacy and Leadership Organization (HALO) and others.

Now, Compassion and Choices is working hard again to get PCHETA passed to “increase the number of faculty at accredited healthcare programs” and “promote increased education and research in Palliative Care and Hospice care.” (All emphasis added)

If groups promoting medically assisted suicide throughout the US are successful in taking over the ethics education of our health care professionals, eliminating conscience rights for healthcare providers and institutions, continue to dismantle so-called legal safeguards called “obstacles” and allow the same poor oversight and documentation found in Oregon, the first state to legalize assisted suicide, we will see the inevitable and inexorable expansion of medically assisted suicide that we are now seeing in Canada.

We need to demand the highest ethical standards in healthcare to protect ourselves, our healthcare institutions and the most vulnerable among us who need hope and help-not medically assisted suicide.