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.

 

“What Kind of Society Do You Want to Live In?”

This month, CBS News aired a TV show titled “Why Down Syndrome in Iceland Has Almost Disappeared. Iceland encourages all expectant mothers to test their unborn babies for birth defects and, when a probable (85% accuracy, according to the show) Down Syndrome  diagnosis is made, almost all mothers have an abortion. This is the highest percentage of all countries. But Down Syndrome is not being “eradicated”. The children are.

In the show, an Icelandic mother who has a 7 year old daughter with Down Syndrome was interviewed. She said about her daughter:

“I will hope that she will be fully integrated on her own terms in this society. That’s my dream, Isn’t that the basic needs of life? What kind of society do you want to live in?” (Emphasis added)

A counselor at an Icelandic hospital had another view and

“tells women who are wrestling with the decision or feelings of guilt: “This is your life — you have the right to choose how your life will look like.” (Emphasis added)

Horrifyingly, she also shows the reporter “a prayer card inscribed with the date and tiny footprints of a fetus that was terminated.” (Emphasis added)

The counselor ends by saying:

“We don’t look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication… preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder — that’s so black and white. Life isn’t black and white. Life is grey.” (Emphasis added)

CONCLUSION

In June, I wrote a blog “Baby Doe and Karen-35 Years Later” about the medical discrimination that both of those gentle souls with Down Syndrome faced in their short lifetimes.

But as frightening as that discrimination was, the reaction from others-even family-when Karen was born was the most heartbreaking.

When Karen was born, there were no congratulations or smiles from the staff or relatives even though Karen was unarguably a beautiful and serene baby girl. But although shattered by the initial (and wrong) diagnosis of an inoperable heart defect, I was determined that Karen be welcomed at least by me. So on the night she was born, I sang “Happy Birthday” and told her how much I loved her through my tears.

After Karen tragically died almost 6 months later, even some family members told me that I should not have tried so hard to save “that baby”.

My point is that it is not enough to just be against aborting or withholding treatment from babies with disabilities. They and their parents must feel supported and encouraged instead of isolated or pitied.

Now that’s the kind of society I want to live in!

Miracle Babies

Yesterday, we learned that Baby Charlie Gard is expected to die soon as his heartbroken parents have decided to remove his life support because a US doctor had told them it was now too late to give Charlie nucleoside therapy. According to a BBC article, “US neurologist Dr Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week.” Baby Charlie’s parents are now asking the court to allow them to take Charlie home to die.

We have learned much from Baby Charlie’s tragedy, not only about the perils of government deciding who should live and who should die but also about the love and commitment of his dedicated parents and the importance of the worldwide support they received.

Now we know there is more hope for babies born with conditions like Baby Charlie’s because of the publicity and probably more parents will try to find alternatives when they are given a poor or fatal prognosis.

Here are two cases where the parents did just that and saved their children.

ABIGAIL BUETLER AND POTTER’S SYNDROME

During the fight to let Baby Charlie get experimental treatment, U.S. Congresswoman Jaime Herrera Beutler led the effort in the US Congress to get residency for Baby Charlie. That would have expedited efforts to help Baby Charlie receive the experimental treatment in the US.

Congresswoman Beutler’s interest was also personal.

In 2013, she and her husband found out that their unborn baby Abigail had Potter’s Syndrome, a fatal condition where the kidneys are missing. She and her husband were told that no one ever survived this condition and abortion was offered more than once.

They looked for other options and found there was an experimental treatment given before birth for other conditions that might work on their Abigail. The parents contacted many different hospitals before Johns Hopkins finally agreed to try.

Today, Abigail is a healthy four year old and has a kidney donated by her father a year ago. She is the first known person to survive Potter’s Syndrome, thanks to her dedicated parents.

NOAH WALL, BORN WITH LESS THAN 2% OF HIS BRAIN

Also known as the “boy with no brain”, four year old Noah Wall was born in the UK with a rare complication of spina bifida that caused fluid to compress his brain down to an estimated less than 2% brain tissue.

The condition was discovered before birth and the parents were told that even if he survived birth, he would be severely mentally and physically disabled. Abortion was offed 5 times.

But Noah did survive birth and an immediate surgery was done for his spina bifida and a shunt was installed to drain excess fluid from his brain.

Thanks to the efforts of his devoted parents and sister to keep his brain stimulated, Noah has confounded the doctors by the regrowth of his brain. When a CT scan of his brain was done years later, doctors found that Noah now has 80% of his brain tissue. Even more amazing to the doctors, Noah has developed into a charming, expressive and empathetic little boy who now attends a local primary school, despite still having  some physical and mental impairments.

This year,  a documentary about Noah was made. I saw it myself a few weeks ago on TV and I highly recommend seeing it.

And as the UK’s Daily Mirror newspaper article wrote:

“Neurosurgeon Dr Nicholson sums up the larger importance of Noah’s incredible story:

‘He teaches the medical profession that you can’t ever know’.”

CONCLUSION

Over the years, medical progress has made great strides while medical and legal ethics have deteriorated because of a “quality of life” mentality.

This has led to medically discriminatory attitudes affecting people with disabilities as I personally found out when my daughter Karen was born with Down Syndrome and a severe heart condition.

All children with disabilities deserve both a welcome and a commitment to help them have the best life possible from not only their parents but also from the rest of us.

35 Years after Baby Doe Continued: The Simon Crosier and Charlie Gard Cases

Last week, I wrote about Baby Doe and my daughter Karen and how both were medically discriminated against 35 years ago because they were born with Down Syndrome. The ethical rationale in both cases help set the stage for the legalized assisted suicide/euthanasia we struggle against today.

Unfortunately, the legal right to live for children with disabilities and their parents continue to be under attack today with the cases of Simon Crosier and Charlie Gard.

SIMON CROSIER

Last August, I wrote a blog titled “Parent Power” about the efforts by some legislators in Missouri and Kansas to block the passage of Simon’s Law, a bill that exposed and sought to change the secret futility policies in even some Catholic hospitals that led to the death of Simon Crosier, a baby born with Trisomy 18.

Since that blog, Kansas finally did pass Simon’s Law but in Simon’s home state of Missouri, the bill is still stuck in committee even though new information about the life expectancy and prognosis for such children led to an opinion editorial in the prestigious Journal of the American Medical Association (JAMA) admitting that withholding life-sustaining treatment from babies with Trisomy 13 and 18 was really a value judgment rather than a medical judgment.

The fight for Missouri’s Simon’s Law will continue.

CHARLIE GARD

On June 30, 2017, the parents of 11 month old Charlie Gard lost their appeal to European Court of Human Rights to keep their son with a rare genetic disorder on life support and take him to the US to try an experimental treatment. The appeal was filed after Britain’s Supreme Court decided to let the hospital remove Baby Charlie’s life support, finding that prolonging Charlie’s life was “not in his best interests.”

Baby Charlie has a rare genetic disorder affecting his muscles and brain that has caused  brain damage, seizures and prevents him from breathing on his own.  A neurologist in the US has suggested an experimental nucleoside treatment that might, in theory, offer some benefit although the treatment has not been tried before in a situation like Baby Charlie’s.

On Facebook, Charlie’s parents said that they were “heartbroken” and aghast that the hospital would not even allow them to take their son home to die.

Charlie’s parents have been fighting for months for the right to take their son to the US try this experimental treatment. By the time of the court decision, $1.7 million had been raise through crowdfunding media to cover expenses.

Unlike the Simon Crosier case, the withdrawal of treatment decision by the hospital was not secret.

Apparently under British law, parents do have the right to make decisions about the treatment of their children unless the treatment is not in a child’s “best interests” and usually it is parents who refuse treatment for their children on moral of religious grounds who end up in court.

The Charlie Gard case has caused enormous conflict among ethicists, lawyers and even religious leaders across the world as well as the general public.

However, in the last few days, Baby Charlie and his parents gained support from two important people: Pope Francis and US President Donald J. Trump.

At first, a Vatican official issued a statement on Baby Charlie that “We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.” But a few days later and after much criticism of the first statement, Pope Francis expressed hope that the desire of 10-month-old Charlie Gard’s parents “to accompany and care for their own child to the end” will be respected. (Emphasis added)

Then, after a July 3, 2017 offer by President Trump to help, an unnamed US hospital came forward to offer free treatment to Baby Charlie.

CONCLUSION

On their GoFundMe page , Baby Charlie’s parents wrote:

If Charlie receives this treatment and it does work like the Dr in America thinks, it won’t be just Charlie’s life that has been saved, it will be many more children in the future, who are born with this horrible disease and it will open up other trials on other mitochondrial depletion syndrome’s.

We need to change things and show how determined parents can forge a path for other families encountering similar obstacles. We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives.. hopefully starting with Charlie xxx (Emphasis in original)

Over my decades of nursing experience, I have seen people decide to try experimental treatments because they hoped for a cure, improvement or at least to help doctors learn more that may help someone else later.

Sometimes the treatments worked and sometimes they didn’t but after talking with these patients (or parents), I could not help but admire their love, courage, faith and determination.

May God bless Baby Charlie, Baby Simon and their parents!

Baby Doe and Karen-35 Years Later

When I started nursing school 50 years ago, medical ethics was not a course but rather common sense principles incorporated into our education. There was no controversy about not harming patients, integrity, equality of treatment regardless of status, etc.

So, of course, abortion and euthanasia were unacceptable and even thinkable in those days.

I particularly remember one teacher who told us about the hypothetical situation of a child with Down Syndrome whose parents wanted to let their baby die and how we naturally had to put the interests of the child first. This kind of protection for patients was routine both ethically and legally in those days.

In 1982, I remembered that situation when Baby Doe,  a newborn baby boy with an easily correctable hole between his esophagus (food pipe) and trachea (windpipe), was denied this lifesaving surgery by his parents and a judge because he also had Down Syndrome. Six days later, Baby Doe starved and dehydrated to death while his case was being appealed to the Supreme Court after the Indiana Supreme Court ruled 3-1 against saving him.

My husband, a doctor, and I were appalled when we first read about Baby Doe in the newspaper and my husband suggested that we adopt the baby ourselves and pay for the surgery.

I said yes but with some reluctance since I was already pregnant with our third child and our other children were just 5 and 3. But who else was better situated than us to care for a child with a disability who needed surgery?

In the end, we were too late to save Baby Doe. We found out that Baby Doe’s parents had already rejected the many other families who tried to adopt him.

Five months later, I gave birth to my daughter Karen who also happened to have Down Syndrome and a life-threatening condition that needed surgery.  Karen was born with a complete endocardial cushion defect of the heart  that the cardiologist told us was inoperable. We were told to just take her home and our baby would die within 2 weeks to 2 months.

I was heartbroken and cried for 3 days in the hospital before I finally got mad. My obstetrician never came back to check on me in the hospital even though I had a C-section and I demanded a second opinion on her heart condition in case the cardiologist was biased against children with Down Syndrome.

I insisted on leaving the hospital early with my daughter because I wanted as much time as possible with her and especially because I realized that I needed to research Karen’s heart condition to effectively advocate for her.

I joined the St. Louis Down Syndrome Association which helped me enormously, especially with my research and emotional support. Fortunately, it turned out that the initial prognosis was wrong and the cardiologist told us that Karen’s heart could be fixed with just one open-heart operation at age 6 months.

I was elated until the cardiologist told me that he would support my decision to operate “either way”, meaning I could refuse surgery just like Baby Doe’s parents.

I was furious and told him that the issue of Down Syndrome was irrelevant to Karen’s heart condition and that my daughter must be treated the same as any other child with this condition. I also added that if he were biased against people with Down Syndrome, he could not touch my daughter.

To his credit, this doctor recognized the injustice and because of Karen, he eventually became one of the strongest advocates for babies with Down Syndrome.

Unfortunately, I ran into other medical professionals caring for Karen who were not so accepting. One doctor actually told us that “people like you shouldn’t be saddled with a child like this” and another doctor secretly wrote a DNR (do not resuscitate) order against my instructions at the time. It was then that I realized that my so-called “choice” to save my daughter was really a fight.

Tragically, Karen died of complications of pneumonia when she was just 5 ½ months old and just before her scheduled open-heart surgery. I will always miss her but I am so grateful that I was her mother. Karen changed many lives for the better, especially mine.

I became active in the Down Syndrome Association, promoted President Reagan’s “Baby Doe” rules ,  provided babysitting/respite for many children with various disabilities, and even got a chance to talk to then Surgeon General C. Everett Koop about setting up a national hotline for new parents of children with disabilities to find resources.

But most importantly, I was determined to find out what had happened to medical ethics  over the years since nursing school that resulted in the Baby Doe tragedy and hopefully help reverse the mindset that people with disabilities were “better off dead”.

What I discovered was a landmark 1979 book titled “Principles of Biomedical Ethics” written by Tom Beauchamp PhD, a professor of philosophy, and James Childress PhD, a theologian and also a professor of philosophy. Neither one had a medical degree.

They devised these four principles for medical ethics:

  • Autonomy – The right for an individual to make his or her own choice.
  • Beneficence – The principle of acting with the best interest of the other in mind.
  • Non-maleficence – The principle that “above all, do no harm,” as stated in the Hippocratic Oath.
  • Justice – A concept that emphasizes fairness and equality among individuals.

Although all these principles were considered equal, it wasn’t long before autonomy became the cornerstone principle in ethics and law, ultimately leading not only to Baby Doe but also to the legalization of assisted suicide/euthanasia.

Ironically, all these principles have been used to justify cases like Baby Doe’s as well as assisted suicide/euthanasia.

Beneficence and non-maleficence have become a ways to see death as an actual blessing to real, perceived or potential suffering. Ominously, the justice principle has become the rationale for rationing under the guise of supposedly not wasting scarce healthcare resources .

CONCLUSION

35 years after Baby Doe, some things like medical technologies and education for people with disabilities are better but many things like assisted suicide/euthanasia have pushed the ethics of death even farther and are a threat to all of us and our loved ones.

The Baby Doe tragedy should have been a fire alarm for the evils we see today but it is never too late or impossible to try to promote a culture of respect for all lives.

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.

How Can Belgian Catholic Psychiatric Hospitals “Adjust” for Euthanasia?

I was in disbelief when I read Michael Cook’s article “Belgian Catholic psychiatric hospitals ‘adjust’ their view of euthanasia”.  I had to read the translated version on the Brothers of Charity order’s statement itself  myself to see if this was “fake news”.

Thankfully, Brother Rene Stockman, the superior general of the Brothers of Charity order, spoke out and said he was devastated by the news and then did three things:

“(F)irst we informed the whole congregation that as general superior we cannot accept this decision, because it is going totally against our charism of the charity. Secondly, we informed the Belgian Bishops conference about the situation and I am in contact with the president, Cardinal De Kesel. Also the Nuncio is informed. Thirdly, we informed the Vatican and all the information has been given to the Secretariat of State. In the meantime we continue to offer our clear arguments why we can never accept euthanasia.”

Brother Rene also warned that:

“In reality, only a few brothers are still involved in the government of the organization, so the majority are lay-people. Yes, there was a lot of pressure, but pressure doesn’t mean that we have to capitulate”

And

“Indeed, the presence of the brothers is not nearly sufficient, but also secularization is also poisoning the congregation in Belgium.”

Ironically, this comes less than 2 years after a pro-assisted suicide UK news service documentary titled “24 and Ready to Die” about Emily, a depressed young Belgian woman, was released but ended with the young woman changing her mind at the last moment.    Despite this, the documentary continued to support euthanasia even though one psychiatric “expert” who treated Emily was obviously wrong when she claimed that Emily’s suffering was so bad that it was “not compatible with life” and that her life did not have “sufficient quality”.

Emily is not the only one to change her mind. A 2014 Belgian study of 100 psychiatric patients  asking for euthanasia  showed that  “8 postponed or cancelled the procedure”. The study’s authors rationalized that these cancellations were “because simply having this option gave them enough peace of mind to continue living”! (Emphasis added)

Fortunately in 2016, the American Psychiatric Association passed a resolution opposing assisted suicide for the mentally ill.

Conclusion

As at least 3 European countries now allow assisted suicide for people with psychiatric problems and other countries like Canada are debating similar measures. Ethicists now write articles like ”Euthanasia for Reasons of Mental Health”  exploring the concept of including people with mental illness.

In the meantime, families like mine will continue to struggle with safety and treatment issues for our severely and chronically mentally ill relatives. We want real help for our loved ones, not assisted suicide or euthanasia. It is not compassionate, supportive or humane to have our loved ones “put down” like dogs.

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!

Should Ethics Committees be Death Panels?

I volunteered to serve on a newly started hospital ethics committees in the 1990s. While I wanted to help analyze difficult cases and serve as a resource for hospital personnel with ethical concerns, I became increasingly alarmed when I saw cost containment and judgments based on “quality of life” brought up as decisive factors by others on the committee.

I understood more when I researched the beginnings of ethics committees.

BACKGROUND

After numerous failed attempts to legalize euthanasia, the Euthanasia Society of America invented the “living will” in 1967 as a first step in gaining public acceptance of euthanasia by promoting a so-called “right to die”. The group achieved much success by publicly promoting “living wills” as a patient rights document that would give people and/or their families  choice and control at the end of life or, especially after the 1976 Karen Quinlan case, if their quality of life was considered too poor.

Karen Quinlan’s case (where despite predictions,  she continued to live for years after her ventilator was removed) effectively extended the “right to die” to non-terminally ill people said to be in a “persistent vegetative state”, a term invented in 1972 to describe brain-injured people who were awake but assumed unaware.

The later cases of Nancy Cruzan and Terri Schiavo  further extended the “right to die” to withdrawal of feeding tubes and other basic medical care.

Eventually the Euthanasia Society of American became The Society for the Right to Die and finally evolved into Compassion and Choices and the “right to die” became “death with dignity” by lethal overdose.

ETHICS COMMITTEES

Ethics committees in hospitals began to emerge after the Quinlan case as an alternative to controversial court cases and became more prevalent in the 1980s, especially after the Baby Doe case in 1982. That case involved a newborn boy with Down Syndrome and an easily correctable defect that prevented him from eating safely. The parents refused the surgery and were upheld by a judge. An appeal was started but the baby died of starvation and dehydration before his appeal could be heard. Disability, pro-life and other groups and individuals were outraged.

Concerns about lethal medical discrimination against infants with disabilities resulted in the Baby Doe Regulations mandating maximal care to any impaired infant, unless certain exceptions are met.

However, there was much medical and legal opposition to these rules and:

“By the end of 1984,  the American Academy of Pediatrics and the American Hospital Association issued statements supporting the use of interdisciplinary ethics committees as an alternative to governmental investigation in such cases.” (Emphasis added)

AN UNEXPECTED PROBLEM

But a surprising development happened on the way to privatizing life and death decisions through ethics committees.

Some people and families resisted and insisted that medical treatment be continued for themselves or their loved ones despite a “hopeless” prognosis and the recommendations of doctors and/or ethicists to stop treatment. Many doctors and ethicists were appalled that their expertise would be challenged and they theorized that such families or patients were unrealistic, “in denial” about the prognosis or were mired in guilt or dysfunctional family relationships.

However, these doctors and ethicists were shocked when in 1991, a court ruled in favor of the husband of Helga Wanglie when he insisted that treatment be continued for his wife despite a “persistent vegetative state” diagnosis.

That court decision was widely criticized in ethics circles and in 1999, Texas enacted a medical futility law.

THE TEXAS ADVANCE DIRECTIVES ACT

In 1999, Texas became the first state to expressly permit doctors to stop life sustaining treatment without consent after a review process by an ethics committee. According to the Texas Advance Directives Act, when care is deemed “futile” or “inappropriate” and the patient or family disagrees,  the patient or family is given 10 days to find another health facility for the patient and pay for “any costs incurred” in the transfer. “If a provider cannot be found willing to give the requested treatment within 10 days, life-sustaining treatment may be withdrawn unless a court of law has granted an extension. “ (Emphasis added)

Thus an ethics committee becomes the equivalent of a death panel.

This kind of ethics committee overreach has now spread far beyond Texas. For example in 2002, I was involved in a similar a case in Missouri involving a brain-injured man despite the state not having a Texas-style law.  It was difficult to find another health care facility to accept the man within the 2 week deadline given by the hospital but ultimately the man not only survived but recovered after the transfer.

The Texas law is now being challenged in the case of Evelyn Kelly, individually, and on behalf of the estate of David Christopher Dunn v Harris Methodist Hospital, a case where a terminally ill, conscious man’s mother fought the ethics committee’s decision to remove his ventilator.

Although Mr. Dunn has since died, the case continues on the question of whether the Texas law is constitutional or not.

In the summary judgement motion filed, Ms. Kelly and her lawyers state that the ethics committee’s action “is an alarming delegation of power by the state law” and “is a far cry from the due process intended to protect the first liberty mentioned in Article 1, Section 19 of the Texas Constitution and that of the Fourteenth Amendment”. (Emphasis added)

Mrs. Kelly and her lawyers make a good point. How can a life and death decision be automatically delegated by law to an unregulated, unaccountable group of individuals outside the legal system?

Even worse, how can the right to live have less legal protection than the “right” to be dead?

The answers to these questions are critically important.

Parent Power

During the last few months, I have been writing about efforts by some legislators in Missouri and now Kansas to block the passage of Simon’s Law, a bill that exposed and sought to change the secret futility polices in hospitals that led to the death of Simon Crosier, a baby with Trisomy 18. I even wrote my own testimony in support of the bill.

But now in a stunning development, Dr. John Lantos wrote an opinion editorial in the Journal of the American Medical Association (JAMA) admitting that withholding life-sustaining treatment from babies with Trisomy 13 and 18 was really a value judgment rather than a medical judgment:

Thirty years ago, pediatric residents were taught that trisomy 13 and 18 were lethal congenital anomalies. Parents were told that these conditions were incompatible with life. There was a tacit consensus that life-sustaining treatment was not medically indicated. Clinical experience usually was consistent with this self-fulfilling prophecy.

But with social media, this changed.  Parents share stories and videos, showing their happy 4 and 5 year old children with these conditions. Survival, it turns out, is not a rare as once thought.”

This survival is even more impressive in light of a related JAMA article titled “Outcomes of Surgical Interventions in Children with Trisomies 13 and 18”   which stated that although “The median age of survival was 13 and 9 days, respectively, in children with trisomies 13 and 18”:

Among children with trisomies 13 and 18 who lived to 6 months, survival at age 10 years was 51% and 60%, respectively.

Note that what is changing the former medical perception of “incompatible with life” is not any new medical advance but rather loving parents who refused to accept the predicted death sentences for their babies, insisted on treatment and then used Facebook and other social and regular media to show off their children’s real lives. I call this Parent Power and it is based on love.

That power may help bills like Simon’s Law to finally pass.

DOWN SYNDROME (Trisomy 21)  AND PARENT POWER

I personally  learned about parent power when my daughter Karen was born in 1982 with Down Syndrome and a severe heart defect. 20+ years before Karen’s birth,  children with Down Syndrome were routinely institutionalized as accepted medical practice. But by the time Karen was born, almost all newborns with Down Syndrome went home with their parents and eligible early childhood programs.

What caused this dramatic change?

Again, it was primarily parent power.

Parents like Kay and Marty McGee not only ignored the standard medical advice to institutionalize their daughter but also fought for support and help for their daughter and others like her. They eventually founded the National Association for Down Syndrome in 1960 (http://www.nads.org/about-us/history-of-nads/ )

By working with other parents and reaching out to willing educational, legal and medical professionals, they helped change medical attitudes, the educational system and public acceptance of people with Down Syndrome who are now achieving goals once thought impossible.

Although it continues to be a long-term effort to ensure non-discriminatory medical treatment for people with Down Syndrome or other disabilities, people with Down Syndrome who were once predicted to die at an early age now have a life expectancy of 60 years and are achieving goals once thought impossible.

THE FIGHT  IS STILL FAR FROM OVER

Unfortunately and on the heels of the welcome editorial comment on babies with Trisomy 13 and 18, comes the news about the tragic circumstances surrounding the death of little Israel Stinson.

Two-year old Israel died after a judge suddenly and unexpectedly rescinded a court order that prevented a California hospital from removing the ventilator from little Israel before his parents could get an opinion from another neurologist after conflicting medical opinions about whether or not Israel was brain dead.

In this case, parent power was overturned by a single judge after the family thought that Israel was protected by a court order.

Not only is this personally tragic for Israel and his parents but this development also serves to devastate the crucial trust needed in our medical and legal systems.