The Changing Rules for Organ Donation

BACKGROUND

Whether we are renewing our driver’s licenses, reading the news or watching TV, it’s almost impossible to miss the campaign to persuade us to sign an organ donation card.

But do we really know what we are signing?

While internet organ donor registration sites like Donate Life America and organdonor.gov still maintain that vital organs can only be harvested (the technical term for removal) after brain death (a controversial issue itself ), a whole new category of organ donors initially called NHBD (non-heart beating organ donors) and later changed to DCD (donation after cardiac death) was added in the 1990s.  This new pool of organ donors are patients who are severely brain-injured but not brain dead, on ventilators (breathing machines) and considered hopeless in terms of survival or predicted “quality of life”.

Organs from these patients are taken when families agree to stop the ventilator and allow doctors to take the person to an operating room where the patient’s organs are removed when (or if) the patient’s heartbeat and breathing stops for 2-5 minutes within a 1-2 hour time frame. If the patient does not die within the time frame, the transplant is cancelled because the organs are potentially damaged and the patient is then returned to a room to die without further treatment.

At first, there was some criticism of DCD on legal, medical and ethical grounds, especially after a 1997 segment of the TV show “60 Minutes” exposed the case of a young gunshot victim whose organs were taken by DCD but the medical examiner who conducted the autopsy said he believed the injury was survivable.

Nevertheless, this new kind of organ donation was deemed ethically acceptable in 2000 by the US Institutes of Medicine while unfortunately also finding “opinion is divided on the option of non-heart-beating donation for the patient who is ventilator dependent but conscious and who wants to stop life-sustaining treatment.

As of 2015, DCD comprised 8.9 percent of all transplants in the US but the procedure is still little-known to the public.

THE DEAD DONOR RULE AND IMMINENT DEATH DONATION

In 2016, UNOS (United Network for Organ Sharing), the organization that manages the nation’s organ transplant system under contract with the federal government, issued its decision on Imminent Death Donation, a policy that would take DCD a step farther to become virtual organ donor euthanasia.

Because “a substantial minority” of DCD donors fail to die fast enough in the 1-2 hour time frame for organ donation, UNOS was considering re-framing the issue as “the recovery of a living donor organ immediately prior to an impending and planned withdrawal of ventilator support expected to result in the patient’s death” to ensure better quality organs and avoid an unsuccessful procedure. (Emphasis added)

Not only would this language change DCD donors from dead donors to living donors, but this also effectively destroys the definition of Dead Donor Rule that states:

“The dead donor rule is an ethical norm that has been formulated in at least two ways: (1) organ donors must be dead before procurement of organs begins; (2) organ procurement itself must not cause the death of the donor. (Emphasis in original)

Although living organ donation can be ethical when a healthy person freely decides to donate an organ like one kidney to someone who has lost kidney function, this imminent death donation is entirely different because the donor’s organ is taken before a planned and expected death.

Writing in a 2013 New England Journal of Medicine article “The Dead-Donor Rule and the Future of Organ Donation”, a group of prominent doctors gave this rationale for abandoning the dead donor rule:

“Respect for autonomy requires that people be given choices in the circumstances of their dying, including donating organs. Nonmaleficence requires protecting patients from harm. Accordingly, patients should be permitted to donate vital organs except in circumstances in which doing so would harm them; and they would not be harmed when their death was imminent owing to a decision to stop life support. That patients be dead before their organs are recovered is not a foundational ethical requirement.” (Emphasis added)

The following year, a polling study in the Journal of Medical Ethics concluded that  the American public is “largely in support of organ removal even though it causes death in this scenario.” (Emphasis added)

CONSEQUENCES

Although UNOS ultimately decided to shelve last year’s proposal to approve Imminent Death Donation “because of its potential risks at this time, due to a lack of community support and substantial challenges to implementation”, that decision may only be temporary:

“In the future, it may be possible to adequately address those challenges through additional research or careful policy development or revision.”

However, apparently no bad ethical idea ever really dies when it comes to increasing the number of organs to transplant and now UNOS is currently considering “Living Organ Donation by Persons with Certain Fatal Diseases who Meet the Criteria to be Living Organ Donors”.

Thanks to the disability advocacy group Not Dead Yet (NDY), I was recently alerted to this new  proposed organ donation policy change and read UNOS’ public comment proposal that describes such patients as having “a progressive, incurable, chronic disease that is fatal and will ultimately be terminal” and gives examples like Alzheimer’s and Multiple Sclerosis.

In its statement opposing the policy change, NDY points out:

“Yet the Committee seems to want to create a special subgroup of living donors to whom the normal rules governing living donations do not apply and whose deaths are of less concern than the deaths of other donors because these living donors are presumably anticipated to die soon anyway. The recommendations would promote overt and lethal discrimination between donors based on disability and perceived health status…

One example of the Committee’s biased double standard is while OPTN policy is not to accept persons as living donors if they show evidence of suicidality, it urges an exception for people with certain fatal diseases so as not to preclude people with plans for assisted suicide (where legal) from first undergoing a living organ donation. (pg. 10) Surely, public confidence in the organ procurement system will not be enhanced by any policy proposal that hints toward a future in which organ euthanasia is accepted and promoted.” (Emphasis added)

CONCLUSION

Unfortunately, the short time frame for public comments on this new policy is now closed and UNOS apparently does not send out alerts to the general public. Also, to the detriment of the public, the media tends to publicize feel-good stories about donation rather than explore controversial policies.

Personally, I am for ethical donation of organs and tissues. Years ago, I volunteered to donate a kidney to a friend and our youngest grandson was saved in 2013 by an adult stem cell transplant.

But I do not have an organ donor card nor encourage others to sign one because I believe that standard organ donor cards give too little information for truly informed consent. Instead, my family knows that I am willing to donate tissues like corneas that can be ethically donated after natural death and will only agree to that donation.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us, especially when it comes to organ donation. We need to demand transparency and information before such policies are quietly implemented.

 

Do Pro-Lifers Really Believe That “Life Begins at Conception and Ends at Birth”?

meeting Kaylee

One of the most frequently repeated myths in the abortion debate is that pro-lifers really don’t care about life. Some abortion supporters even maintain that pro-lifers believe “life begins at conception and ends at birth”   and do nothing for women and babies after birth.

The picture above is of me holding my newest granddaughter Kaylee Marie for the first time on May 17, 2017. Of course, we think she is gorgeous and are thrilled that she is a healthy 7 lb. 8 oz.

Some babies are not born so fortunate. Kaylee’s late Aunt Karen was born in 1985 with a severe heart defect as well as Down Syndrome and faced medical discrimination regarding heart surgery. The ones who stepped up to help were not the so-called “pro-choice” people but rather people who were pro-life.

It was after Karen that I actively joined the pro-life movement and learned that pro-lifers not only helped women and babies in crisis pregnancies but were also active in helping people of all ages and conditions as an antidote to the culture of death.

These wonderful people inspired me to get into personally helping families caring for babies with disabilities, working with people who had severe brain injuries and volunteering with people who had terminal illnesses, dementia or suicidal ideation.

And now, of course, I am also helping my daughter and her husband to get some sleep and adjust to the awesome responsibility and joy of their first child, baby Kaylee.

CONCLUSION

Kaylee’s mom was my next child after Karen. Foregoing medically unnecessary prenatal testing, I happily carried my daughter Joy with the certain knowledge that every child is truly a gift from God and that you can never lose when you love.

Abortion of any baby is ultimately a failure of  that love and reality. We in the pro-life movement are committed to promoting the best for all babies-even the planned and dearly wanted ones like Kaylee Marie-as well as their moms.

This is because pro-life is really an attitude of caring and helping, not political ideology.

My Trip to Georgetown University: The Inspiration of a New Generation

I was honored to be asked to give a talk at the annual Cardinal O’Connor Conference On Life at Georgetown University in Washington D.C. on January 28, 2017, the day after the annual March for Life. To be honest, I believe that I received more from the conference and students than I could ever contribute!

The title of my talk was “Killing or Caring? A Nurse’s Professional and Personal Journey”. I spoke about the progression of the Culture of Death through 4 professional and personal stories from abortion through assisted suicide. My stories included my 1982 fight to save the life of my newborn daughter with Down Syndrome and a severe heart defect against some lethal medical discrimination based on her disability. The second story was about how a young man in a car accident in the early 1970s “miraculously” recovered when we nurses refused to give up after the doctor initially predicted that the young man would at best be a so-called “vegetable” if he lived. The third story was about my daughter who died by suicide in 2009 at the age of 30 using an assisted suicide technique she read about and the tragedy of suicide contagion when assisted suicide is normalized and even glamorized. My last story was how I was almost fired from my ICU unit when I refused to participate in a withdrawal of treatment/terminal sedation euthanasia.

I was so moved by the enthusiastic response of the students to the message that the Culture of Death cannot be ignored or tolerated because evil will always expand until we stop it by demanding the recognition that every life is valuable and worthy of protection. I also loved getting a chance to talk to so many of the students after the talk. They inspired me!

Even on my trips to and from Georgetown University, I met two other inspiring young people. One was a lovely young African-American woman seated next to me on the flight to Washington, D.C. She told me about her career as a police officer patrolling the toughest area in Oakland, California. She also spoke about her passion to help the community and how she embraced the challenges of her choice. Who could not be inspired by that?

The Uber driver who drove me to the airport after my talk was similarly inspiring. It turned out that he was a young nurse who emigrated here from Ethiopia last year and was now studying for his national nursing exam to practice in the U.S. His story was fascinating and when he learned I was a veteran nurse, we had a wonderful discussion about nursing as a great career.

CONCLUSION

We sometimes hear the pessimistic opinion that our next generation is self-absorbed and only interested in money and the next cultural fad.

Based on my experiences in Georgetown, I think that our next generation may prove to be one of the best!

The Slippery Slope-Tactics in the Assisted Suicide Movement

I first saw this tactic  in the mid-1980s when Missouri was considering a “living will” law to allow a person to refuse “death prolonging procedures” if a person became terminally ill and unable to speak for himself or herself.  Some of us warned about a broader agenda, citing court cases involving feeding tubes and seriously brain-injured but non-terminally ill patients like Paul Brophy and Claire Conroy in New Jersey and Massachusetts . In  response, “right to die” activists (as they were known then) added the ”safeguard” of not allowing the withholding of food and water to the Missouri law  and the bill was passed.

Not surprisingly, Missouri soon faced the Nancy Cruzan case  involving the withdrawal of a feeding tube from a non-terminally ill young woman in a so-called “persistent vegetative state”.  Soon after that,  a Missouri Designated Health Care Decision Maker Act was passed that would allow a person to designate someone to make health care decisions (or a relative if there is no document) including withholding or withdrawing of feeding tubes when the person was incapacitated whether or not they were terminally ill or even in a so-called “vegetative state”.

Now, over 30 years later, we have legalized physician-assisted suicide in several states and the District of Columbia and the former “right to die” groups are now known as Compassion and Choices.

TODAY’S SLIPPERY SLOPE TACTICS

In a December 2016 commentary article titled “End of Life Liberty in DC” for a publication supported by the University of Pittsburgh School of Law, lawyer and long-time assisted suicide activist Kathryn L. Tucker surprisingly criticizes the new assisted suicide law quietly signed into law by the mayor of Washington, DC. this month.

While most people might believe that passage of yet another assisted suicide law would be cause for celebration for assisted suicide activists, Ms. Tucker is unhappy with the so-called “safeguards” in the DC law-just as “right to die” activists were with Missouri’s “living will” law.

Ms. Tucker now complains about the “many burdens and restrictions imposed” by these “safeguards” which, ironically, are added by assisted suicide activists themselves when they  “routinely face arguments of insufficient ‘safeguards’”.  Ms. Tucker lists some of these so-called “burdens and restrictions”:

  • Patients electing AID (aid in dying, the activists preferred term for physician-assisted suicide) must make at least three requests, two oral and one written.
  • The requests must be witnessed.
  • A second opinion confirming diagnosis and prognosis is required.
  • A mental health specialist must be consulted if the attending or consulting physician has concerns regarding the patient’s ability to make an informed decision.
  • A minimum fifteen-day waiting period must elapse between the two oral requests.
  • Physicians must collect and report a vast amount of demographic data on who chooses AID and why.

Ms. Tucker claims these so-called burdens and restrictions “impose heavy governmental intrusion into the practice of medicine, which is concerning because it creates barriers to patient access and to physician participation.” (Emphasis added)

Instead, Ms. Tucker proposes another, more expansive statute without the usual so-called “safeguards” that would provide:

a clear safe harbor (i.e. immunity) for physicians to practice aid in dying in conformity with standard of care. This reflected a positive step in the direction of normalizing AID within the practice of medicine. Medicine is not routinely governed by statute but, rather, by the type of care that a competent health care professional would render in similar circumstances —referred to as standard of care or best practice. (Emphasis added)

In other words, Ms. Tucker is proposing a policy that makes assisted suicide simply normal medical care with special protections against criminal, civil or disciplinary actions for doctors who participate even though such immunity is not given for other medical practices.

CONCLUSION

Ms. Tucker and other are deadly serious about this. When Vermont passed its assisted suicide law in 2013, the law contained a “sunset” provision that would end “nearly all regulation” after the first three years. Fortunately, this was repealed in 2015.

However, assisted suicide activists will not give up on this as Compassion and Choices makes clear:

We firmly believe — and experience demonstrates — that working within healthcare systems to normalize medical aid in dying will ensure fewer people suffer at the end of their life. (Emphasis added)

As Ms. Tucker demonstrates, assisted suicide advocates will promise anything to get assisted suicide laws passed but it appears that they will never be satisfied until assisted suicide becomes a private and unfettered practice using well-funded groups like Compassion and Choices as the potentially taxpayer-funded “experts” in charge of policies, referrals, training and education.

Can We Choose to Live?

In a 2016 study “What does “futility” mean? An empirical study of doctors’ perceptions” in the Medical Journal of Australia distilled this definition from the majority of responses:

Futile treatment is treatment that has only a very low chance of achieving meaningful benefit for the patient in terms of:

  • improving quality of life;

  • sufficiently prolonging life of acceptable quality; or

  • bringing benefits that outweigh the burdens of treatment

Alarmingly, the article also states: “Doctors may reach a view that treatment is futile, informed by their definition of futility and clinical indicators such as functional status, disease severity, and age.” (Emphasis added.)

Over 10 years ago, I wrote an article “Futility Policies and the Duty to Die” about little-known futility policies being promoted, even in Catholic hospitals. These policies allow doctors and ethics committees to overrule patients’ or families’ decisions to continue  care or treatment when a person’s prognosis or “quality of life” was considered too poor.

In February, I wrote about the still not passed Simon’s Law here in Missouri that exposed the secret futility policies that led to the death of Simon Crosier, a baby with Trisomy 18.

However, a couple of weeks ago, a horrified nurse friend showed me two health care directive she recently received as a patient. One was from a Catholic  health care facility and the other was a standard Missouri durable power of attorney directive . The wording in both made her question whether such futility policies were now being incorporated into such directives.

I understand her concern.

THE CATHOLIC  DURABLE POWER OF ATTORNEY FOR HEALTH CARE DIRECTIVE

A person signs such a directive in order to have a family member or other trusted person make health care decisions when they are incapacitated. An legally incapacitated person is  defined as  a “Person unable to make rational decisions or engage in responsible actions. Mental and/or physical deficiency, disability, illness, drug use causing temporary or permanent impairment.”

“Living wills” and other advance health care directives,  invented by so-called “right to die” groups, claimed to give people the power to choose at the end of life

Remembering the prolonged dehydration deaths of Nancy Cruzan and Terri Schiavo, two non-terminally ill but severely brain-injured women said to be in the so-called “persistent vegetative state”, a person might sign a directive but want to prevent such a terrible death for himself or herself.

However, while this Catholic directive has a section to make such a decision, it also an asterisked section attached to both withdrawal and refusal of withdrawal:

I DO NOT AUTHORIZE my Agent/Proxy to direct a health care provider to withhold or withdraw artificially supplied nutrition and hydration (including tube feeding of food and water) as  permitted by law.*

*(In a XXXXX health care facility, nutrition and hydration may be withheld or withdrawn if I have an irreversible condition which is end-state or terminal AND if the means of preserving my life have likely risks and burdens which outweigh the expected benefits or are disproportionate without a reasonable hope of benefit.) (Emphasis added)

Using such terms as “end-state or terminal”  could, for example, apply  not only to a “persistent vegetative state” but also to Alzheimer’s or other dementia. “Artificially supplied” could encompass a simple IV while the asterisked section inexplicably does not even include the words “artificially supplied” before the food and water.  Along with using terms like “disproportionate without a reasonable hope of benefit” without stating who makes that determination or what the criteria is for benefit, the average person could be understandably confused in a real life situation.

THE MISSOURI DURABLE POWER OF ATTORNEY DIRECTIVE

Many, if not most, Missouri hospitals have this directive.

This directive has a section stating:

If I am persistently unconscious or there is no reasonable expectation of my recovery from a seriously incapacitating or terminal illness or condition, I direct that all of the life-prolonging procedures that I have initialed below be withheld or withdrawn. (Emphasis added)

This list includes not only “artificially supplied nutrition and hydration” but also antibiotics, CPR and “all other life-prolonging medical or surgical procedures that are merely intended to keep me alive without reasonable hope of improving my condition or curing my illness or injury.” (Emphasis added) Note that, according to the directive, a person need not have a terminal illness or be in a coma to qualify for withdrawal.

The next section can seem reassuring if a person has qualms about a decision to withdraw treatment or care being made too quickly or influenced by age or disability.  However, the directive only states that such treatments or care may  be tried-at the doctor’s  discretion-for an undefined “reasonable”period of time before withdrawal. Unfortunately, this section also includes automatic consent to pain relief, even in dosages that can suppress breathing and appetite as in terminal sedation:

3. However, if my physician believes that any life-prolonging procedure may lead to a recovery significant to me as communicated by me or my Agent to my physician, then I direct my physician to try the treatment for a reasonable period of time.  If it does not cause my condition to improve, I direct the treatment to be withdrawn even if it shortens my life.  I also direct that I be given medical treatment to relieve pain or to provide comfort, even if such treatment might shorten or suppress my appetite or my breathing, or be habit-forming. (Emphasis added)

The Catholic health directive also includes this section, almost verbatim.

CONCLUSION

With the help of the media, mentally disabling conditions like Alzheimer’s are often portrayed to the public as a fate worse than death and a terrible burden on a family. Tragically, the “right to die” mentality has led many people to conclude that they should die if they develop such conditions or, if dying, that their death may be accelerated to spare their families.

As a nurse who has seen the problems with advance directives firsthand, I helped design my own durable power of attorney advance directive without exemptions or checkoffs that could be misused or misinterpreted. I also educated my husband and family about the medical ethics involved.

As I wrote in my blog Living with “Living Wills”, there are better alternatives available to the standard kinds of advance directives even though no directive is foolproof.

Adequately informed consent is required for legal consent to surgery. Shouldn’t advance directives that involve life or death be held to the same standard before signing?

 

 

Miracle Baby Comes Home for Christmas

Francesca and Lee Moore-Williams held their beautiful 18 month old daughter Bella’s hand as her ventilator was turned off and they waited for her death. But just 30 minutes later, Bella awoke  “kicking and screaming” according to the UK’s Mirror newspaper article “Miracle baby whose life support was turned off home for Christmas”. Five months later, she is scheduled to come home this Christmas.

Bella’s health became a concern in April when clumps of her hair fell out. Three months later, she took a turn for the worse and was admitted to a hospital in critical condition. Doctors told the parents that a MRI scan showed abnormalities on both sides of her brain and at some point, the decision was made to turn off the ventilator supporting her breathing.

According to the Mirror article:

She was later diagnosed with the genetic disorder Biotinidase deficiency, which is so rare it affects just one in every 60,000 births.

Sufferers of the condition do not produce enough biotin – a vitamin which is essential for healthy cell growth.

The deficiency can be fatal if left untreated but will now be managed safely with tablets.

And today:

Bella, of Clacton-on-Sea, Essex, who turns two in January, is now learning to walk and talk and her hair is growing back.

Experts say she is around eight months behind other children her age but she is expected to catch up.

Francesca said: “She’s at nursery and to look at her you wouldn’t think she’s been through what she has.

Perhaps this Christmas “miracle” also holds a message about the need for hope and humility for those of us in the medical professions.

Merry Christmas and Happy Holidays to all!

 

 

Wall Street Journal article July 8, 2015: “Brain Stimulation May Give Hope to Coma Patients”

Coma is a term unfortunately often misused by the media to also encompass conditions like “persistent vegetative state” or “minimally conscious state” as it is in the title of this article.

The article “Brain Stimulation May Give Hope to Coma Patients” recounts how a 36 year old man, severely brain-injured for 6 years, was selected for a 2007 study of deep brain stimulation using an implantable device improved for 6 months.  According to the article:
“The patient regained voluntary movements of one limb. He also was able to chew, swallow
and speak again, conveying cognitive and perceptual responses.”

The author of the article, Patricia cites this as a potential breakthrough for the severely brain-injured whose

“Annual costs of care are in the double-digit billions.”

However, other measures have already helped such patients to improve or recover over the last two decades.

I first discovered this in the early 1970s, I worked in a top ICU with many people who were in comas from accidents or other brain traumas. I was teased by my colleagues for talking to these people, telling them what day it was, what I was doing to them, etc. “Do you talk to your refrigerator, too?” they laughed.

I told them that if hearing indeed was the last sense to go, perhaps these coma patients would be reassured by, for example, hearing that I was turning them to wash their backs instead of pushing them out of bed. Why not do it?

Then one day a 17 year old young man I will call “Mike” was admitted to our ICU in a coma and on a ventilator after a horrific car accident. The neurosurgeon who examined him predicted he would be dead by morning or become a “vegetable.” The doctor recommended that he not be resuscitated if his heart stopped.

Personally, I was shocked that the doctor said this in front of the patient.

But Mike didn’t die that night and, after a few weeks, he was weaned off the ventilator and could even move a finger on command and eventually he even said “Hi”. However, I was baffled when Mike didn’t respond at all to the neurosurgeon, even with deep pain stimulation.

After a few weeks and with much coaxing Mike finally did say “Hi” to the shocked surgeon. Soon after Mile was transferred out of our ICU to a nursing home where the whole staff assumed he would spend the rest of his life severely impaired.

However, two years later, a handsome young man strode into our ICU, announced he was Mike, and thanked us for saving his life. We were stunned and overjoyed. Laughing, I told him that he wouldn’t remember this, but he used to respond a little to some of us nurses but didn’t for the neurosurgeon. The laughter stopped when Mike revealed that he purposely hadn’t responded to the doctor because he had heard him call him a vegetable and it made him angry.

After that, every nurse was told to treat all our coma patients as if they were fully awake. We were rewarded when several other coma patients woke up and some even recovered.

Today, Mike would probably be dead because of his refusal to respond to a doctor because withdrawal of ventilators, food and water and basic medications have become almost routine when a patient is severely brain-injured unless the family objects. I have seen many people like this called “hopeless” and eventually warehoused in nursing homes to be forgotten.

Over the years, I’ve written about many other patients in comas, “persistent vegetative states”, etc. who improved or even woke up with verbal and physical stimulation instead of the brain stimulation explained in this article.

For example, doctors like Dr. Keith Andrews of the UK and US doctor Mihai Dimancescu did studies years ago that showed around 43% of patients in a so-called “persistent vegetative state” were misdiagnosed. In 1988, Britain’s Royal Hospital for Neuro-Disability developed the Sensory Modality Assessment and Rehabilitation Technique (SMART) is a clinical tool for the assessment and rehabilitation of people with disorders of consciousness following severe brain injury.” For decades, I’ve also recommended Jane Hoyt’s wonderful pamphletA Gentle Approach-Interacting with a Person who is Semi-Conscious or Presumed in Coma”.

People do need to know that there is ongoing research and hope for the severely brain-injured.
As Pope John Paul II wrote in his historic 2004 address to the participants in the International Congress on “Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas :
“The sick person in a vegetative state, awaiting recovery or a natural end, still has the right   to basic health care (nutrition, hydration, cleanliness, warmth, etc.), and to the prevention  of complications related to his confinement to bed. He also has the right to appropriate rehabilitative care and to be monitored for clinical signs of eventual recovery.” (Emphasis added)