Non-Brain Death Organ Donation Part Two

By Nancy Valko, RN, ALNC

February 20, 2015

(This is an updated version of an article originally published in the February newsletter of the Pro-Life Healthcare Alliance .

Although non-brain death organ donation started over 20 years ago, it is mostly unknown to the  general public who sign organ donor cards assuming that they will be carefully diagnosed as  “brain dead” before their organs are harvested. (See “Non-Brain Death Organ Donation, Part  One,” )

Originally called non-heart beating organ donation (NHBD), and later DCD (donation after cardiac death), it is now called donation after circulatory death (also DCD) because donor hearts can sometimes be restarted for transplantation. I call it non-brain death organ donation because “brain death” criteria are not used.

In March, 2011, the Organ Procurement and Transplantation Network (OPTN) published proposed policy rules on non-brain death organ donation and opened its website for public comments. Despite many critical comments and an article in the Washington Post titled “Changes in controversial organ donation method stir fears” [1], the OPTN has now finalized some very dismaying standards.[2]

In one of the most disturbing sections, “Consent for DCD”, the OPTN states that “Conditions involving a potential DCD donor being medically treated/supported in a conscious mental state will require that the OPO (organ procurement organization) confirms that the healthcare team has assessed the patient’s competency and capacity to make withdrawal/support and other medical decisions.” [Emphasis added.] There is no mention of evaluation for depression or other difficulties that may influence the person’s decision, which omission obviously could lead to a new form of assisted suicide.

The OPTN policies also state that “Any planned withdrawal of life sustaining medical treatment/support will be carried out in accordance with hospital policy.” Even the guidelines suggested in the two Institutes of Medicine reports on non-brain death organ donation, like waiting a minimum 5 minutes (after cessation of the donor’s breathing and heartbeat) before harvesting, have been generally jettisoned in favor of locally decided rules. As the OPTN admits, its policies “…set the minimum requirements for DCD recovery but do not address local practices, cultural and resource issues…” Thus, like brain death criteria, the rules surrounding non-brain death donation can potentially vary even from hospital to hospital without the patient or family even being aware. And as one of the inventors of the NHBD protocol, Dr. Michael DeVita, has admitted, “the possibility of [brain function] recovery exists for at least 15 minutes.”[3]

Another major problem is that, even though doctors screen such patients for a rapid inability to continue breathing without a ventilator, at least an estimated 20 per cent of non-brain death donors do not stop breathing and heartbeat fast enough after withdrawal of a ventilator to have usable organs. These patients are then just returned to their rooms to die without further treatment.[4]

How can doctors be so wrong in some cases? Could such patients potentially improve? A 2003 article in the New England Journal of Medicine illustrated a disturbing lack of objective medical standards for withdrawal of ventilators even outside an organ donation decision. This article admitted that no study was done to “validate physician predictions of patients’ future functional status and cognitive function” and the researchers did not ask doctors to ”justify their predictions of the likelihood of death or future function.”[5]

These are just a few of the criticisms of non-brain death organ donation that have been raised by ethicists, doctors and other concerned people.

Informed Consent

 How many people know the Uniform Anatomical Gift Act was revised in 2006 to include “first person” authorization when a person signs an organ donor card or other legal donation document that “not only continues the policy of making lifetime donations irrevocable but also is restated to take away from families the power, right, or authority to consent to, amend, or revoke donations made by donors during their lifetimes.”[6]?

With the discussion about problems with non-brain death organ donation absent in mainstream media, what can you do to protect yourself from a potentially unwanted organ donation?

First of all, know the facts. It is necessary to do your own research since fact sheets often provide only minimal information when you sign an organ donor card while you are renewing your driver’s license or checking off a box in your advance directive. Therefore, you may not be giving the truly informed consent such a momentous decision requires.

Keep informed about new strategies being proposed such as “presumed consent” which is the assumption that everyone is willing to donate his/her organs unless there is evidence that they would not want to donate. Illinois narrowly avoided a “presumed consent” statute a few years ago.

However, there are alternative ways to donate that people who are uncomfortable with brain death and/or non-brain death donation might consider. For example, people can become a living organ donor for a kidney. Such kidneys also have many advantages over both brain dead and non-brain dead kidneys such as usually lasting twice as long. (See: “The Benefits of Living Donation”) While there are risks to such a surgery for the donor, living organ donation avoids the ethical concerns about determining death.

Other alternatives are the donation of blood or bone marrow donor while living or, after death, the donation of tissues like bone or corneas that can be taken even hours after death is certain.

In addition, there is hopeful medical research involving adult stem cells to repair organs and building artificial organs that may someday replace the organ donation we have now.

Having a daughter-in-law who currently needs a living donor kidney transplant, I am aware of how much such a “gift of life” can mean, but I believe it should not be at the expense of ethics or informed consent.

About the author: Nancy Valko, RN, ALNC, has been a registered nurse for 45 years and is a spokesperson for the National Association of Prolife Nurses . A long-time speaker and writer on medical ethics and other health issues, she has a blog “A Nurse’s Perspective on Life, Healthcare and Ethics” and an archive of her articles from 1988-2014 titled “Nancy Valko, RN ALNC”.  She is also now a legal nurse consultant.

FOOTNOTES

[1] “Changes in controversial organ donation method stir fears” by Rob Stein. Washington Post, September 19, 2011. Online at:  http://www.washingtonpost.com/national/health-science/changes-in-controversial-organ-donation-methodstir-fears/2011/09/15/gIQAlY9agK_story.html

[2] Organ Procurement and Transplantation Network Policies. U.S. Department of Health & Human Services. Current as of 2/1/2015. Online at http://optn.transplant.hrsa.gov/ContentDocuments/OPTN_Policies.pdf

[3]”The Death Watch: Certifying Death Using Cardiac Criteria,” Michael A. DeVita, MD, University of Pittsburgh Medical Center, Pittsburgh, Pa., Prog. Transplant 2001; 11(1):58-66, © 2001 North American Transplant Coordinators Organization

[4] “Organ Procurement after Cardiocirculatory Death: A Critical Analysis”, Mohamed Y. Rady, MD, PhD, Joseph L. Verheijde, PhD, MBA, and Joan McGregor, PhD. Journal of Intensive Care Medicine. September/October 2008, available online at http://jic.sagepub.com/cgi/reprint/23/5/303.pdf

[5] Withdrawal of Mechanical Ventilation in Anticipation of Death in the Intensive Care Unit” by Deborah Cook, M.D., et al. New England Journal of Medicine, Volume 349:1123-1132, September 18, 2003, Number 12. Abstract available online at: http://content.nejm.org/cgi/content/short/349/12/1123

[6] REVISED UNIFORM ANATOMICAL GIFT ACT (2006), page 30. Online at: http://www.uniformlaws.org/shared/docs/anatomical_gift/uaga_final_aug09.pdf

January 12, 2015

Non-Brain Death Organ Donation

 

By Nancy Valko, RN ALNC

Would you sign an organ donor card if you knew that you didn’t necessarily have to be diagnosed as “brain dead” before your organs were removed? Would you sign an organ donor card if you knew that the card would override your family if they objected?

These scenarios might sound far-fetched but they are very real today even though unknown to most people. The understandable zeal to obtain organs and tissues for transplantation has gone much farther than most people realize when they agree to future organ donation.

The current non-brain death organ donation policy started with ethics journal articles in the mid-1990s when it was called “non-heart beating donation” and promoted as a way to increase the supply of organs to transplant beyond the “brain death” organ donations. This was accomplished by linking organ donation with withdrawal of treatment decisions from people considered hopelessly ill or dying but who did with not meet the criteria for “brain death”. This change in policy came in the wake of court decisions upholding the right to refuse treatment for incapacitated patients like Nancy Cruzan, a brain-injured woman said to be in a so-called “vegetative state.”

Since Dr. Isajiw and I presented the following paper in 2004, the term “non-heart beating organ donation” has been changed to “donation after cardiac death” and around 5% of organs donated in the US now come from such donors. (Source: The Challenge of Organ Donation after Cardiac Death” by Matt Wood. February 20, 2014. Science Life. Online at: http://sciencelife.uchospitals.edu/2014/02/20/the-challenge-of-organ-donation-after-cardiac-death )

Moreover, there is now “first person consent” law that considers a signed organ donor card the legal and ethical equivalent of signing an advance directive. This means that no one (not even family) can then override the decision to donate organs. (Source: “If I sign an organ donor card, will my wishes be carried out?” by Katrina Bramstedt, PhD. Online at: http://www.sharecare.com/health/organ-transplants-and-health-care/sign-organ-donor-card)

 

Other new developments include efforts to pass “presumed consent” laws that change the organ donation system from one that requires a person to “opt-in” for organ donation to an “opt-out” system that presumes everyone is automatically an organ donor unless they have specifically refused. Recently, Illinois was set to be the first state to approve a “presumed consent” bill before it was narrowly defeated with the help of disability organizations.

People sign organ donor cards because they sincerely want to help save or improve the lives of others after they themselves die but without adequate information, is this truly informed consent?

2.http://www.wf-f.org/NHBD-VatMar2004.html

“Non-heart beating Organ Donation and the ‘Vegetative State’” (2004)

Editor’s Note: The following was presented by Dr. George Isajiw to the participants in the International Congress on “Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas”, held in Rome March 17-20, 2004.

On May 23, 2003, the newspaper of the Archdiocese of St. Louis, the St. Louis Review, published an editorial stating that “the NHBD (non-heart beating organ donation) protocol is cruel and dangerous and does not meet standards of respect for human life” and called for an immediate moratorium on NHBD at all St. Louis hospitals.

Reaction was swift and critical. The St. Louis Post-Dispatch cited transplant surgeons and others who defended NHBD as a way to increase organ donations by taking organs from patients who “have little brain activity and are in a vegetative state with no hope of recovery and whose families decide to discontinue life support.1 Michael Panicola, vice president of ethics for the Catholic SSM Healthcare System, defended NHBD as “an opportunity for people to give the gift of life when they don’t meet brain death criteria.”

FACTS ABOUT NON-HEART BEATING ORGAN DONATION

For the past several years, a little-known but disturbing revolution has been occurring in organ donation. In the understandable but sometimes alarming zeal to obtain more organs, a new procedure called “non-heart-beating organ donation” has been quietly added to brain death organ donation in more and more hospitals in the United States and in other countries.2

Here, we are referring only to so-called “controlled NHBD protocols, although the “uncontrolled NHBD protocols, which are used for patients who have failed resuscitation efforts, have their own set of ethical problems which overlap with “controlled” NHBD, such as cannulation for preservation of organs before consent can be obtained.

While brain death organ donation means that the person is legally dead but still has a heartbeat when organs are harvested, the potential NHBD patient does not meet the brain death criteria but is termed “hopeless” or “vegetative” soon after suffering a devastating condition such as a severe stroke or trauma, and while still needing a ventilator to breathe. Because of the legal acceptance of the so-called “right to die”, families or other surrogates then agree to have the ventilator turned off, a “do not resuscitate” order is written, and when the patient’s breathing and heartbeat stops, the organs are removed.

In NHBD, the ventilator is usually stopped in an operating room while a doctor watches for up to one hour until the heartbeat and breathing stops. After an interval of usually just 2 to 5 minutes, the patient is declared dead and the transplant team takes over to remove the organs. A determination of brain death is considered unnecessary even though one of the inventors of the NHBD protocol, Dr. Michael DeVita has admitted, “the possibility of [brain function] recovery exists for at least 15 minutes”. Nonetheless, Dr. DeVita defends waiting only 2 minutes before harvesting the organs because he believes that the person is unconscious and, as he writes, “the 2-minute time span probably fits with the layperson’s conception of how death ought to be determined”.3

A recent article in the New England Journal of Medicine illustrates the disturbing lack of objective medical standards for withdrawal of ventilators.4 This article, published in September of 2003, admits that no study was done to “validate physicians’ predictions of patients, future functional status and cognitive function”, and the researchers did not ask doctors to ”justify their predictions of the likelihood of death or future function”.

With such subjective standards being used for withdrawal of ventilators, it should not be surprising that the potential NHBD patient will unexpectedly continue to breathe for longer than the usual one hour time limit required for the organ transplant to be successful. In these cases of failed NHBD, the transplant is then cancelled but, rather than resuming care, the patient is just returned to his or her room to eventually die without any treatment or further life support.

The recent case of Jason Childress illustrates the lethal problems with this non-treatment plan and the lack of objective medical or ethical standards for withdrawing ventilators.5

Jason is a young man who was severely brain-injured in a car accident and became the subject of a “right to die” case in which the judge ordered the removal of his ventilator 2 months after his accident. Against all predictions and because his tube feedings were not also stopped, Jason continued to breathe on his own and is now showing signs of improvement and receiving treatment. Ominously, the doctors, initial recommendation to withdraw the ventilator 2 days after his accident could have made him a prime candidate for NHBD since he would have possibly been too injured to breathe on his own that soon after his accident. The rush to declare patients “hopeless or “vegetative soon after illness or injury can thus deprive at least some patients of the chance of survival or even recovery.6

Some NHBD protocols do not even require that the donor be mentally impaired at all. For example, one ethicist wrote about the case of a fully conscious man with ALS who decided to check himself into a hospital, have his ventilator removed and donated his organs under NHBD criteria. The ethicist wrote, “An operating room nurse reported feeling that the procedure was ‘Kevorkian-like'”.7

CONCLUSION Even more pressure to increase the use of NHBD is apparently coming in the US, even though the public has been kept largely uninformed about this new method of obtaining organs. For example, last November, an advisory committee to the US Health and Human Services department recommended that, in the future, all hospitals should establish policies and procedures to “manage and maximize” NHBD and also be required to “notify organ procurement organizations prior to the withdrawal of life support to a patient, so as to determine that patient’s potential for organ donation”. Unknown to most of the public, hospitals are now already required to report every death to the local transplant organization even when tissue or organ donation is refused and, if enacted, this new proposal will put further pressure on medical personnel and distraught families.

Ironically, at the same time, new information is coming forward about these so-called “hopeless” patients who are considered potential NHBD candidates. A September 2003 article in the New York Times featured the work of Dr. Joseph T. Giacino and others with people who have had severe brain damage but who are now showing signs of “complex mental activity even after months or years with little sign of consciousness”.9 And, of course, there are many reported cases even in the media of brain-injured people who improve or even recover long after the doctors declared them hopeless.

Yet, even this may not be enough for some ethicists like Dr. Robert Truog, who recently proposed that “individuals who desire to donate their organs and who are either neurologically devastated or imminently dying should be allowed to donate their organs, without first being declared dead.”10 In other words, Dr. Truog wants to eliminate even the controversial NHBD protocol in favor of just taking organs from incapacitated or dying patients while they are obviously still alive.

Linking the so-called “right to die” with organ donation, as NHBD does, has truly opened a terrible Pandora’s box. While organ donation can be a gift of life and a worthy goal, we must not allow the deaths of some people to be manipulated to obtain organs for others. The position of Cardinal Justin Rigali, now Archbishop of Philadelphia, who was at that time the Archbishop of St. Louis and who asked for an immediate moratorium and re-evaluation of NHBD, is eminently sensible and should be replicated worldwide.

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NOTES

[1] “Archdiocese criticizes some organ retrievals by Deborah L. Shelton, St. Louis Post-Dispatch, 6/10/03.

[2] “It is difficult to determine whether other countries such as Holland and Japan adopt a uniform defensible template in their practice of controlled NHBOD and information from the UK is also extremely limited as to the extent and nature of practice”. From “Non-heart beating organ donation: old procurement strategy” new ethical problems by M. D. Bell, Journal of Medical Ethics 2003; 29:176-181. Online at: http://jme.bmjjournals.com/cgi/content/full/29/3/176

[3] “The Death Watch: Certifying Death Using Cardiac Criteria” by Michael A. DeVita, MD, University of Pittsburgh Medical Center, Pittsburgh, Pa. Prog. Transplant 11(1):58-66, 2001. © 2001 North American Transplant Coordinators Organization

[4] “Withdrawal of Mechanical Ventilation in Anticipation of Death in the Intensive Care Unit” by Deborah Cook, M.D., et al. New Englnad Journal of Medicine, Volume 349:1123-1132, September 18, 2003, Number 12. Abstract available online at: http://content.nejm.org/cgi/content/short/349/12/1123

[5] “Jason Childress Still Breathing, Receives Proper Medical Care” by Steven Ertelt, LifeNews.com Editor, September 25, 2003. Available online at: http://www.lifenews.com/bio58.html

[6] “Ethical Implication of Non-Heart Beating Organ Donation” by Nancy Valko, RN. Voices magazine, Michaelmas 2002 Volume XVII, No. 3. Online at: http://www.wf-f.org/02-3-OrganDonation.html

[7] A Primer for Health Care Ethics by Kevin O’Rourke, O.P., Georgetown University Press, 2000, p. 182

[8] US Department of Health and Human Services Advisory Committee on Organ Transplantation, Recommendations to the Secretary. November 2002. Available online at: http://www.organdonor.gov/acotrecsbrief.html

[9] “What if There Is Something Going On in There?” by Carl Zimmer. New York Times, 9/28/03

[10] “Role of brain death and the dead-donor rule in the ethics of organ transplantation” by Robert D. Truog, MD, FCCM; Walter M. Robinson, MD, MPH. Critical Care Medicine Journal, September 2003; 31(9):2391-2396

George Isajiw, M.D., is based in Washington, DC, and is Internal Medicine Consultant to the Linacre Institute of the Catholic Medical Association. He is also past president of the Catholic Medical Association, USA. His 2002 paper “Advance ‘Mis-Directives’: Euthanasia in Catholic Hospitals in the United States” appears here.

Nancy Valko, a registered nurse, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-life Nurses and a Voices contributing editor. She is based in St. Louis, MO.