Caring for an Elderly Relative who Wants to Die

I was disturbed but not really surprised when I read the October 21, 2020 New England Journal of Medicine article by Scott D. Halpern, M.D, Ph.D., titled “Learning about End-of-Life Care from Grandpa”.

Dr. Halpern, a palliative care doctor and ethicist at the University of Pennsylvania, wrote about his elderly grandfather who had been widowed for the third time and wrote “My life was over too, only existence remained,” in a memoir for his family.

As Dr. Halpern writes, “It was downhill from there” as his grandfather coped with challenges like blindness, deafness and arthritis.

Family members offered to care for him but the grandfather chose to go into an assisted living facility where family members could visit him frequently. But then, Covid 19 visitations cut him off entirely from the outside world.

Eventually, the grandfather was allowed to see relatives one at a time outdoors at the facility.

Nearing his 103rd birthday, the grandfather started asking Dr. Halpern about “any plausible option to hasten death”.

New Jersey had recently approved physician-assisted suicide, but Dr. Halpern was “ambivalent” about that option. In addition, his grandfather did not have a terminal illness but rather was “dying of old age, frailty, and more than anything else, isolation and meaninglessness”.

Alarmingly, Dr. Halpern found that the medical code for this diagnosis called “adult failure to thrive” was being used not only used to access hospice but also to access physician-assisted suicide in some states.

Unable to find a New Jersey doctor willing to use physician-assisted suicide on his grandfather anyway, Dr. Halpern offered his grandfather the option of VSED (voluntarily stopping of eating and drinking) to hasten or cause death that the pro-assisted suicide group Compassion and Choices touts as “natural” and legal in all states.

THE TRUTH ABOUT VSED

Dr. Halpern wrote that his grandfather had trouble refusing food and water on his own. He started and stopped the process a few times.

Dr. Halpern was not surprised, writing that:

“ For people with a consistent desire to end their life, unencumbered by mental illness or immediate threats to their survival, the only alternative — to stop eating and drinking — is just too challenging. Hospice experts around the country had warned me that less than 20% of people who try to do so “succeed,” with most reversing course because of vicious thirst.” (Emphasis added)

Finally, Dr. Halpern’ write that his grandfather said “I just want it over with. Scott, do whatever you need to do.”

Dr. Halpern writes that he consulted his hospice team and began treating his grandfather’s thirst “as I treat other forms of discomfort — with morphine and lorazepam” (Emphasis added)

Even then, it took 12 long days for his grandfather to finally die.

The lessons that Dr. Halpern says he finally learned were that:

“despite many problems with physician-assisted dying, it may provide the most holistic relief possible for people who are not immediately dying, but rather are done living.”

And

stopping eating and drinking is largely impossible without knowledgeable family members and dedicated hospice care.” (All emphasis added)

CONCLUSION

Dr. Halpern obviously loved his grandfather and tried to meet his grandfather’s emotional and physical needs before telling him about the VSED option and eventually adding terminal sedation. And it seems that the imposed isolation because of potential Covid 19 infection was especially devastating for his grandfather.

But his justification for physician-assisted suicide as “the most holistic relief possible for people who are not immediately dying, but rather are done living” is chilling.

Unfortunately, that is an attitude seen all to often in medical professionals that has led to the expansion of some assisted suicide laws from terminal illness to non-terminal conditions like “completed life” and disabilities.

Both personally and professionally as a nurse, I know how difficult it can be on families when caring for a family member-especially an older relative-who says he or she wants to die.

But I also know that while we all can have sympathy for someone who says they want to die, the word “no” can be a powerful and loving response. The real answer is to help make living as good and meaningful as possible until death.

For example, I became the only caregiver when my elderly aunt developed diabetes and late-stage pancreatic cancer in 2000.

I went to doctor visits with her and went over the options with her. My aunt rejected chemo and radiation that had only a small chance of even slowing the cancer. She also refused hospice.

I offered to care for her in my home with my 15 year old daughter who also wanted to help. However my aunt felt it would cramp my daughter’s lifestyle so she decided to stay in her own home until she died.

So I helped her at home and purchased my first cell phone so that she could contact me at anytime. At that time, I was a single parent and worked full time nights in an ICU.

However, one day my aunt asked me about stopping her insulin to die faster. I told her how that could put her at risk for a heart attack or stroke from high blood sugar with no one there to help.

So she changed her mind and then even began opening up about her condition with others. She was stunned when people told her how inspiring she was and offered to help her in any way.

My aunt became happier than I had ever seen her.

Eventually, my aunt did accept hospice care at a facility she knew. I visited and called often. My aunt was physically comfortable and alert.

One day when my daughter and I went to visit her, we found that she had just died quietly in her sleep. The nurses had just stepped out to call me.

My daughter later wrote a beautiful essay about her first experience with death for her high school and received an A+. Her essay was later published on a nursing website.

In the end, causing or hastening death does not really solve anything but rather can be seen as an abandonment of the suffering person and a destroyer of the necessary trust we all must have in the ethics of our healthcare system.

We must never discriminate when it comes to helping anyone contemplating suicide.

.

Surprising New Test for Predicting Recovery after Coma

An April 29, 2020 Nature Journal article titled “Olfactory sniffing signals consciousness in unresponsive patients with brain injuries” found that nasal response to odors (sniffing) by 43 severely brain-injured patients predicted the likelihood of recovery and long-term survival.

According to Noam Sobel, PhD, of the Weizmann Institute of Science in Rehovot, Israel, one of the authors of the article and speaking to MedpageToday:

“If you sniff at an odorant, then it’s 100% you will regain consciousness to at least a minimal level, and you will likely live for years,” he told MedPage Today. “If you don’t sniff at an odorant, that is a bad sign, but not all hope is lost.” (Emphasis added)

Amazingly, he said that 37.5% of the unresponsive patients who didn’t sniff did eventually regain consciousness.

Dr. Giacino, PhD of Harvard Medical School who helped write the 2018 American Academy of Neurology guidance on disorders of consciousness told Medpage that this study is “a cleverly and carefully designed study that adds another much-needed tool to the consciousness-detection toolbox” even though “Between 30% and 60% of patients who sustain severe TBI (traumatic brain injury) have diminished or complete loss of smell due to the mechanics of the injury.”)

He also noted that, based on available evidence, about four in 10 patients who are deemed unconscious on bedside examination actually retain conscious awareness and that “A significant portion of these patients have covert consciousness — preserved cognitive function that cannot be expressed through speech or movement.” (Emphasis added)

WHY IS THIS STUDY SO IMPORTANT?

As Dr. Giacino said in the Medpage article:

“Published evidence from Canada in a large cohort of ICU patients with traumatic brain injury [TBI] found that approximately 70% of the deaths were due to withdrawal of treatment and in about 60% of cases, the decision to stop treatment was made within 72 hours,” he said. “It’s possible that a positive sniff test might delay this decision, which is important since we know that about 20% of TBI patients who survive what appears to be catastrophic injury recover to a functionally-independent level by 5 years post-injury.” (Emphasis added)

As we have seen over the past decades, whether or not a severely brain-injured person is or can become conscious has become a life and death matter. We have seen this in the cases of Nancy Cruzan, Terri Schiavo and Zach Dunlap even though, as I wrote in my August 18, 2018 blog, “Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover”.

THIS ISSUE HAS BEEN CLOSE TO MY HEART FOR DECADES.

Just before Drs. Jennet and Plum invented the term “persistent vegetative state” in 1972,  I started working with many comatose patients as a young ICU nurse. Despite the skepticism of my colleagues, I talked to these patients as if they were awake because I believed it was worth doing, especially if it is true that hearing is the last sense to go. And why not do it to respect the patient as a person?

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.

But “Mike” didn’t die and almost 2 years later returned to our ICU fully recovered and told us that he would only respond to me at first and refused to respond to the doctor because he was angry when heard the doctor call him a “vegetable” when the doctor assumed ‘Mike” was comatose!

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 later woke up.

Over the years, I’ve written about several other patients like “Jack”“Katieand “Chris in comas or “persistent vegetative states” who regained full or some consciousness with verbal and physical stimulation. I have also recommended Jane Hoyt’s wonderful 1994 pamphlet “A Gentle Approach-Interacting with a Person who is Semi-Conscious  or Presumed in Coma” to help families and others stimulate consciousness. Personally, I have only seen one person who did not improve from the so-called “vegetative” state during the approximately two years I saw him.

CONCLUSION

But I never even thought to give any of my patients a sniff test. What a simple test for medical professionals to do!

And even though this study is small and needs to be replicated and validated, I believe it is further evidence that we need to reevaluate our current medical ethics and laws that allow life-sustaining treatment to be withdrawn from people with severe brain injuries on the premise that such brain-injured people have no “quality of life” and that such injuries are routinely hopeless.

And I hope that the sniff test can become a standard part of all medical evaluations of people with severe brain injuries.

Health Care Rationing, Covid 19 and the Medical Ethics Response

While the key medical model in the US for Covid 19 deaths has just again been revised from 240,000 to 100,000 to now just 60,000 by August along with concerns about the possible overuse of ventilators in Covid 19, there is still a push for medical health care rationing guidelines.

As the April 8, 2020 Wall Street Journal article As Coronavirus Peaks, New York City’s Hospitals Prepare ‘Live or Die’ Guidance” notes, some hospitals and health care systems are coming up with guidelines and scoring systems to allocate ventilators. At the same time, New York lawmakers have recently passed a measure to protect hospitals and clinicians from certain medical malpractice lawsuits while the Covid 19 virus strains the health system.

Disability groups are complaining about discrimination in health care rationing plans that would “illegally deprive people based on age, mental cognition or disability”. In addition, a recent Center for Public Integrity analysis shows that policies in 25 states would ration care in ways disability advocates have denounced.

While such rationing plans are usually said to be based on determining which patients have little if any chance of a good outcome, i.e.  medical futility, even the American Medical Association has admitted in its Code of Ethics that “However, physicians must remember that it is not possible to offer a single, universal definition of futility. The meaning of the term “futile” depends on the values and goals of a particular patient in specific clinical circumstances.” (Emphasis added)

THE CATHOLIC MEDICAL ETHICS PERSPECTIVE

Medical ethics in Catholic health care institutions are often considered the most stringent in terms of protecting human life from conception to natural death. So what do Catholic ethics authorities say about rationing?

On April 3, 2020, the US Catholic Conference of Bishops (USCCB) issued a powerful statement “Bishop Chairmen Issue Statement on Rationing Protocols by Health Care Professionals in Response to Covid-19” that stated:

“Every crisis produces fear, and the COVID-19 pandemic is no exception. However, this is not a time to sideline our ethical and moral principles. It is a time to uphold them ever more strongly, for they will critically assist us in steering through these trying times.”

and

“Good and just stewardship of resources cannot include ignoring those on the periphery of society, but must serve the common good of all, without categorically excluding people based on ability, financial resources, age, immigration status, or race.” (Emphasis added)

The statement cited other Catholic health care groups like Catholic Medical Association, the National Association of Catholic Nurses and the National Catholic Bioethics Center that all issued helpful statements.

However another Catholic group mentioned, the Catholic Health Association, has also issued a problematic statement on the rationing issue titled “Code Status and COVID-19 Patients “ stating that:

“CPR may be medically inappropriate in a significant portion of elderly, critically ill patients with COVID-19 and underlying comorbidities. As per Parts 3 and 5 of the Ethical and Religious Directives for Catholic Health Care Services, if it is shown that the burdens exceed the benefits, it is morally acceptable to withhold such procedure.” (Emphasis added)

And even worse:

“If treating clinicians, including more than one physician, determine that CPR is not medically appropriate, a Do Not Attempt Resuscitation Order (DNR) may be written without explicit patient or family consent.” (All emphasis added)

In a separate April 7, 2020 statement from the  National Catholic Partnership on Disability titled “Rights of Persons with Disabilities to Medical Treatment During the COVID-19 Pandemic , the NCPD states “As The Office of Civil Rights of the U.S. Department of Health and Human Services has recently reminded us, America’s basic civil rights laws, including the Americans with Disabilities Act, prohibit discrimination:

“[P]ersons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities. ”  (Emphasis added)

CONCLUSION

Over my many decades as a nurse, I have seen the question of “quality of life” deteriorate from what can we do to improve the quality of life for every patient to judging whether or not a patient has sufficient quality of life to justify treatment or care like a feeding tube.

During that time, Alzheimer’s and major CVAs (strokes) in advanced age have come to be seen as fates worse than death that should not be a burden on people and their families or a waste of health care resources.

Before my own mother developed Alzheimer’s and a terminal cancer, she often told me that she never wanted to be a “burden to her family”. I never considered her a “burden” when I cared for her and she was comfortable and fed to her last day. I will never tell my children what my mother told me.

And especially with assisted suicide polls showing much public support, we cannot afford to play into the idea that some people are “better off dead” regardless of whether or not they “choose” a premature death or someone else “chooses” it for them.

We should also remember the lethal legacy of the 2005 Hurricane Katrina disaster. Flooding caused the New Orleans mayor to issue an unprecedented mandatory evacuation of the city with the exception of major hospitals. But when conditions worsened at the large Memorial Medical Center and evacuation efforts were slow, some medical staff allegedly euthanized some of the patients.

However and despite strong evidence, a massive PR campaign portraying those patient deaths as “compassionate” resulted in the 2007 grand jury refusing to indict the doctor and 2 nurses charged.

As we see this debate over medical ethics in crisis situations continue today, we must continue to insist that every person deserves a natural lifespan without discrimination.

Ventilator Rationing, Universal DNRs and Covid 19 (Coronavirus)

As a nurse myself, it is hard to watch my fellow nurses bravely fighting on the front lines of this pandemic without being able to be there with them.

Nurses are a special breed. In my over 50 years as a nurse, I found that most of us chose nursing because we want to help people and alleviate suffering. We work the long hours on our feet, skip meals, hold hands and listen, cry when our patients die, etc. because we truly do care.

But the health care system has been changing. A dark new ethics movement is infecting our system and telling us not only that our patients have a right to choose to end their lives but also that some of our patients even “need” to die and that we can’t care for all of them during the Covid 19 pandemic.

Worst of all, we are being told that we can now know how to decide which patients are “expendable”.

VENTILATOR RATIONING

A 71 year old man with a heart condition arrives at a hospital is diagnosed with Covid 19. His condition worsens and he is placed on a ventilator to help him breathe. Then the infection rate spikes in the city and the hospital is overrun with severely ill patients, many between 20 and 50 years old and otherwise healthy.

The health care team is forced to decide which patients should they focus on and care for.

This is the scenario posed in a March 20, 2020 Medpage article “Ethics Consult: Take Elderly COVID-19 Patient Off Ventilator?— You make the call” along with an online survey with 3 questions:

1. Would you prioritize the care of healthier and younger patients and shift the ventilator from the elderly man to patients with a higher probability of recovering?
2. Would you change your decision if the elderly patient had been in intensive care for a non-COVID-19-related illness?
3. Would you prioritize the older man over college students who had likely been
infected during spring break trips?

After almost 4000 votes, the survey showed 55.65% voting yes on prioritizing the care of the healthier and younger patients, 78.11% voting no on changing their decision about the elderly patient if he didn’t have Covid 19 and 71.12% voting no on prioritizing the elderly man over college students likely to have been infected on a spring break trip.

So while most people fear becoming infected with Covid 19, less well-known ethical dangers may also affect us-especially those of us who are older or debilitated.

Every day, we hear about the shortage of ventilators needed for Covid 19 patients and the overworked and understaffed health care professionals providing the care. Now both mainstream media and medical journals are publishing articles about the ethical dilemma of denying CPR (cardiopulmonary resuscitation) or a ventilator to older patients or those with a poor prognosis with Covid 19 in a triage situation.

Triage is defined as “A process for sorting injured people into groups based on their need for or likely benefit from immediate medical treatment. Triage is used in hospital emergency rooms, on battlefields, and at disaster sites when limited medical resources must be allocated.” (Emphasis added)

But this definition does NOT include deciding how to triage people based on age or “productivity”.

UNIVERSAL DNRs

A March 25, 2020 Washington Post article “A Framework for Rationing Ventilators and Critical Care Beds During the COVID-19 Pandemic” posed the question: “how to weigh the ‘save at all costs’ approach to resuscitating a dying patient against the real danger of exposing doctors and nurses to the contagion of coronavirus.”

This is not just an academic discussion.

As the article reveals, “Northwestern Memorial Hospital in Chicago has been discussing a do-not-resuscitate policy for infected patients, regardless of the wishes of the patient or their family members — a wrenching decision to prioritize the lives of the many over the one.” (Emphasis added) And Lewis Kaplan, president of the Society of Critical Care Medicine and a University of Pennsylvania surgeon, described how colleagues at different institutions are sharing draft policies to address their changed reality.

Bioethicist Scott Halpern at the University of Pennsylvania is cited as the author of one widely circulated model guideline being considered by many hospitals. In an interview, he said a universal DNR for Covid 19 patients was too “draconian” and could sacrifice a young person in otherwise good health. He also noted that the reality of health-care workers with limited protective equipment cannot be ignored. “If we risk their well-being in service of one patient, we detract from the care of future patients, which is unfair,” he said.

The article notes that “Halpern’s document calls for two physicians, the one directly taking care of a patient and one who is not, to sign off on do-not-resuscitate orders. They must document the reason for the decision, and the family must be informed but does not have to agree.” (Emphasis added)

This could not only upend traditional ethics but also the law as “Health-care providers are bound by oath — and in some states, by law — to do everything they can within the bounds of modern technology to save a patient’s life, absent an order, such as a DNR, to do otherwise.”

Both disability and pro-life groups have condemned such health care rationing with Covid 19, especially for older people and people with disabilities.

However, this and more is apparently already happening.

In an April 1, 2020 Wall Street Journal article “What the Nurses See: Bronx Hospital Reels as Coronavirus Swamps New York” a co-worker told the nurse interviewed that the nurses were no longer doing chest compressions to resuscitate Covid 19 patients because “it uses lots of protective gear and puts workers at greater risk than chemical resuscitations”. This was corroborated by other nurses who said this has become an “unspoken rule.”

CONCLUSION

How can we protect ourselves and our loved ones in these circumstances?

At the very least and whether or not we are older or have disabilities, we should consider or reconsider our advance directives.

As the Life Legal Defence Foundation  writes in their “SPECIAL MESSAGE ABOUT COVID-19 AND ADVANCE HEALTH CARE DIRECTIVES”:

As COVID-19 spreads around the globe, the public is learning about the importance of mechanical ventilators in providing temporary breathing support for many of those infected. Ventilators are saving lives!

A false understanding of respirators and ventilators has become commonplace in recent years. Many people think that these and similar machines’ only role is prolonging the dying process. The widely publicized treatment of COVID-19 patients is helping to dispel that myth. Many patients rely on machines temporarily every day for any number of reasons and go on to make full recoveries.

Unfortunately, many individuals have completed advance health care directives stating or suggesting that they do not wish to receive breathing assistance through mechanical ventilation.

Please take the time to review any advanced medical directives (including POLST forms) signed by you or your loved ones to make sure they are clear that mechanical ventilation is not among the forms of care that are refused. If there is any ambiguity, you may want to consider writing, signing, and dating an addendum specifying that mechanical ventilation is authorized. (Emphasis in original)

I would add that other treatments or care such as DNRs and feeding tubes also not be automatically checked off. I believe it is safer to appoint a trusted person to insist on being given all information concerning risks and benefit before permission is given to withdraw or withhold treatment.

Even as the nation is racing to get more ventilators and staff as we cope with this terrible pandemic, we all must continue to affirm the value of EVERY human life.

 

Roe v Wade 47 Years Later

Like everyone else I knew, no one expected the US Supreme Court’s case Roe v Wade to legalize abortion in 1973. I was shocked when the Court legalized abortion with virtually no restrictions during the first trimester stating:

“(a) For the stage prior to approximately the end of the first trimester, the abortion decision and its effectuation must be left to the medical judgment of the pregnant woman’s attending physician. Pp. 163, 164.
(b) For the stage subsequent to approximately the end of the first trimester, the State, in promoting its interest in the health of the mother, may, if it chooses, regulate the abortion procedure in ways that are reasonably related to maternal health. Pp. 163, 164.” (Emphasis added)

It wasn’t until much later that I learned about the Doe v Bolton case (decided at the same time as Roe) that expanded the definition of “health”, stating that the “medical judgment (for abortion) may be exercised in the light of all factors–physical, emotional, psychological, familial, and the woman’s age–relevant to the well-being of the patient. All these factors may relate to health.” (Emphasis added)

That redefinition of a woman’s health opened the expansion of abortion.

Unfortunately, those of us who expressed horror about these decisions were quickly derided by those who supported legalized abortion. Even those of us who were medical professionals and knew better felt intimidated.

MY PERSONAL EXPERIENCE WITH ABORTION AND ITS EFFECTS

When I became a mother a few years after the Roe v Wade decision and read the prenatal development pamphlet given to expectant mothers, my heart ached for those mothers who chose abortion without such crucial information.

Eventually, I had a daughter born with Down Syndrome and a severe heart defect as well as another daughter who became pregnant at 18. I could understand the fear and desperation underlying an abortion decision and I was determined to help in some way by joining the pro-life movement.

Because of the pro-life movement, I have been better able to help desperate mothers, children with disabilities and their families as well as other people in danger of being seen as “inconvenient”, “unwanted” or “better off dead”.

THE ABORTION TRAJECTORY AND HOW IT IS CHANGING

After the Roe decision, it didn’t take long before “abortion rights” to begin expanding and now we have at least 8 states legislating abortion on demand throughout pregnancy  as well as at least 19 states allowing abortionists to leave babies to die who survive abortion.

Most recently, pro-abortion Democrats have blocked efforts to get Congress to vote on the “Born-Alive Abortion Survivors Protection Act” and in my home state of Missouri, the last Planned Parenthood clinic is still fighting closure over its health violations.

But despite all this activity on the pro-abortion side, many states have enacted strong protections for mothers and their unborn babies. Even the pro-abortion Guttmacher Institute acknowledges that:

“In 2019, conservative state legislators raced to enact an unprecedented wave of bans on all, most or some abortions, and by the end of the year, 25 new abortion bans had been signed into law”

And an encouraging new Marist/Knights of Columbus poll  shows that a majority of Americans (65%) would vote for candidates who back abortion restrictions and nearly two-thirds of Americans oppose abortion if the child will be born with Down Syndrome.

In addition, there are more pregnancy help centers than abortion clinics to help women and their unborn babies.

CONCLUSION

As abortions are decreasing and the abortion movement is exposed for its radical goals, it appears that more and more people are seeing the truth about abortion and the pro-life movement. Personally, I have never felt more encouraged since the Roe v Wade decision 47 years ago and especially by the inspiring words of President Donald Trump, the first sitting president to address the annual March For Life in Washington, D.C.:

“We cannot know what our citizens yet unborn will achieve. The dreams they will imagine. The masterpieces they will create. The discoveries they will make. But we know this: every life brings love into this world. Every child brings joy to a family. Every person is worth protecting….

Together, we will defend this truth all across our magnificent land. We will set free the dreams of our people. And with determined hope, we look forward to all of the blessings that will come from the beauty, talent, purpose, nobility, and grace of every American child.”

Down Syndrome, the Gift of Innocence, and Abortion

In a beautiful op-ed in the December 23, 2019 Wall Street Journal titled “Down Syndrome and the Gift of Innocence” , William McGurn writes about a small group of contemplative nuns called the Little Sisters Disciples of the Lamb who reside in France.

The order was founded in 1985 by Mother Line, now prioress, and Sister Véronique, who felt a vocation but could not find an order to accept her because she has Down syndrome. Now there are 10 sisters (eight with Down syndrome) who exist so that “those who are in last place in the world”—women with Down syndrome—can “hold in the church the exceptional role of spouses of Christ. In practice this means that able-bodied sisters devote their lives to ensuring their fellow sisters with Down syndrome can live their vocations.”:

“The smiling faces of our little sisters with Down syndrome are a great message of hope for many injured families,” Mother Line tells me. “Our smallness will also say that we are made for very great things: to love and to be loved.”

And while the rest of the world dismisses innocence as naïve or childish, Mr. McGurn writes that:

“the nuns choose to cherish and exalt innocence—and the unconditional love and trust that comes with it—as an example of how we are meant to live with one another.”

DOWN SYNDROME AND ABORTION

In contrast to these wonderful nuns, a federal judge recently reversed his own ruling on a hard-fought pro-life abortion law passed in my home state of Missouri by blocking a provision that prohibits discriminatory abortions on unborn babies with Down syndrome.

Missouri was set to join several other states that passed such laws until U.S. District Judge Howard Sachs reversed his decision.

It is hoped that this decision will be appealed. As Justice Clarence Thomas has previously written about such laws that protect unborn babies from eugenic discrimination:

“… this law and other laws like it promote a State’s compelling interest in preventing abortion from becoming a tool of modern-day eugenics.”

and

“Although the Court declines to wade into these issues today, we cannot avoid them forever. Having created the constitutional right to an abortion, this Court is dutybound to address its scope.” (All emphasis added)

AN “ACCEPTABLE” PREJUDICE?

A few days ago, the head of the American Civil Liberties Union (ACLU)  Disability Rights Project Susan Mizner defended abortion for unborn babies with Down Syndrome writing that:

“There is no question that stigma, prejudice, and misconceptions about people with disabilities are widespread. But forcing someone to carry a pregnancy to term against their will does nothing to tackle underlying and systemic ableism and discrimination against people with disabilities.

“On the contrary, forced pregnancy threatens a person’s physical, mental, and emotional health, as well as the stability and wellbeing of their family, including existing children.” (All emphasis added)

As an RN and mother who had to fight medical discrimination against my daughter Karen who had both Down Syndrome and a heart defect as well as a past board member of the St. Louis Down Syndrome Association, I take great exception to this dangerously inaccurate statement. We can never eliminate prejudice by eliminating people with disabilities before or after birth.

CONCLUSION

I applaud the Little Sisters Disciples of the Lamb in France who cherish their sisters with Down Syndrome who have so much to give to the world and I am horrified by the several states that have now passed laws that allow abortion for any reason at any time during pregnancy or even after birth.

Although unborn babies with Down Syndrome are especially at risk, we must remember that ALL children enter the world with the “gift of innocence” and none deserve to be killed before birth.

 

A Very Special 6th Birthday Party

Recently, I was invited to a 6th birthday for a special boy.

“John” (as I will call him for privacy reasons) was born a healthy baby boy. But when he was a few months old, he stopped breathing and 911 was called. Apparently, John had a near-SIDS (sudden infant death syndrome) event.

John was resuscitated but the doctors in the emergency room told the parents that he had severe brain damage.

John’s mom was a special education teacher and told the doctor that she often cared for severely brain-injured children and would do the same for her son. She was just so glad he survived.

I was called about John to help with information and support.

At one point months later, John became critically ill and was hospitalized. The doctors did what they could but said his chances of survival were bleak.

However, John surprised us all by getting better and going home. He was tough!

It takes a lot to care for a child on a ventilator and feeding tube at home but John’s parents were up to the task, along with help from their church and family members. John’s family later expanded when his two younger sisters were born. They obviously love their big brother.

When John had his 6th birthday a few weeks ago, it was a joyous occasion with family and friends. I was delighted to be invited. Although John is still severely brain-injured and still on a ventilator and feeding tube, he spent much of the party cuddled in his grandfather’s arms. He was the center of attention.

John’s grandfather told me about his brother who was born with cerebral palsy decades ago. The family was told that he would not live long but with supportive siblings and parents, the brother lived a good life until he died at age 60. The grandfather is still proud of his brother.

CONCLUSION

When my Karen was born with Down Syndrome in 1982, I didn’t really know what to expect and I was shocked by negative attitudes-even from her medical professionals.

But that was wonderfully counteracted by the other parents in the St. Louis Down Syndrome Association who told me how their child was a blessing and how that child opened their hearts and eyes. I was awed by these other parents’ concern, help and support for my daughter and our family.

I later asked these amazing parents if they were like this before their child was born. Every one of them said no and that it was their child that led them to open their hearts and eyes.

I eventually discovered how true this is even though my Karen only lived 5 1/2 months and I’ve been blessed by meeting other children with special needs and their parents.

Too often, people assume that a child with special needs is automatically a family tragedy.

The truth is that children with even severe disabilities can teach the rest of us so much about love, acceptance, true happiness and resilience.

And, of course, faith.

 

 

Lessons from the Victory against Assisted Suicide in Maryland

In a dramatic end, the Maryland Senate was deadlocked in a 23-23 on their physician-assisted suicide bill when it came time for the last senator to vote on March 27, 2019.

Sen. Obie Patterson decided not to cast a vote which effectively killed the bill that needed a majority vote to pass.

Sen. Patterson told reporters that “I researched it, I talked with folks and my decision today was not to cast a vote. But I think I did my job. I did not relinquish my responsibility to thoroughly review all of the concerns I had about the bill. At the end of the day, I felt I could not cast a vote.”

This fourth attempt in Maryland to pass a physician-assisted suicide bill had just passed in the Maryland House of Delegates following “an intense and emotional debate that brought some lawmakers to tears”.

Although there was testimony on both sides with many personal stories, a Goucher College poll of people in Maryland showed 62% of those polled supported “allowing terminally ill adults to obtain medication to end their lives”. The Maryland State Medical Society that previously opposed assisted suicide bill had now changed its stance to “neutrality”.

Kim Callinan, CEO of the Compassion & Choices organization that promotes such legislation throughout the US had said that “with baby boomers beginning to reach retirement age, they are dealing with deaths of their parents and peers, causing them to rethink their views on death experiences allowing terminally ill adults to obtain medication to end their lives.”

Disability advocates were forced to wait to testify until all witnesses in favor of the bill testified, effectively blocking those advocates who had to leave.

LESSON ONE: DON’T GIVE UP EDUCATING  LEGISLATORS AND THE PUBLIC ON THE FACTS AND DANGERS OF ASSISTED SUICIDE

Although it seemed that the bill would pass in the Senate, all the efforts by disability advocates, pro-life people, medical professionals, concerned Maryland residents, etc. to write, speak and even march about the facts and dangers of physician-assisted suicide apparently had an effect.

When the bill was sent to a Senate committee to evaluate before being sent to the entire Senate for final passage, members of the committee now had reservations about the assisted suicide bill itself. Committee chairman Senator Bobby Zirkin said the bill as introduced to the committee was “flawed to its core”, even though he said he didn’t want to stand in the way of terminally ill people “who are truly, truly at the end of their life and out of treatment options.”

The senate committee members “spent more than 7 hours hashing out dozens of proposed amendments to the bill” before agreeing to vote it out to the full senate with these changes requiring patients:

“Be at least 21 years old, a change from 18 in the original bill.

Have their diagnosis confirmed by their attending physician and a consulting physician. Those two physicians cannot be in the same practice or have a financial relationship

Ask for the prescription three times, including once in private with a doctor and with witnesses.

Undergo a mental health evaluation.”

The senators also set a stricter definition of who could qualify for assisted suicide, and removed the prescribing doctors’ immunity “from civil lawsuits related to prescribing the fatal drugs.”

Kim Callinan, CEO of Compassion & Choices said “the new drastically revised version of this bill includes troubling amendments that we know from our experience in other states will make the bill nearly impossible for patients to access.”

But as I noted in my previous blog on the assisted suicide bill, the Maryland Against Physician Assisted Suicide coalition correctly noted that even with the revisions, the bill “does not offer sufficient protection of those in our system of health care who are most vulnerable to abuse” and should not be passed.

After the bill died in the senate, one senator said he would sponsor yet another assisted suicide bill sometime in the future.

LESSON TWO: REVIEW THE RESULTS

As the Baltimore Sun article on the defeat of the assisted suicide bill noted:

“Some senators who voted against the bill recalled the General Assembly’s action a few years ago to abolish the death penalty — in part on the grounds that life is precious, even the life of a convicted criminal.

Sen. Michael Hough, a Frederick County Republican, said that his vote in favor of keeping the death penalty has haunted him. He pledged to himself that if he ever faced a vote like that again, “I would err on the side of life.”

Others questioned the logic of allowing doctors, who they see as people who save lives, to participate in a process that leads to death.

“There are no do-overs in this type of law,” said Sen. Bryan Simonaire… “Doctors have and will continue to make mistakes and miscalculations. They are humans. Once a life is taken, it is final.” (All emphasis added)

We may not always know what resonates with a legislator charged with representing his or her district but it is an awesome responsibility to make laws involving life or death decisions. That decision should not just be based on polls or horrific fears about death.

LESSON THREE: REACH OUT TO ALL GROUPS AND PEOPLE

None of us who oppose assisted suicide has the power, money or media support that Compassion and Choices has. But when we band together and use all our personal stories as well as the moral, legal, disability and medical perspectives against assisted suicide, we can win state by state and even educate the public nationally.

Our goal should not only be about defeating assisted suicide and upholding truly ethical healthcare but also to offer hope and support to improve the lives of all people experiencing suicidal despair, whether or not they are terminally ill.

 

 

The Most Important Thing I Told a Maryland Legislator

I just recently returned from a trip to Maryland where Jack Ames of Defend Life asked me to speak to various groups, hopefully including legislators, about opposing a current physician-assisted suicide bill in the Maryland legislature. The Maryland “End of Life Options” bill was, as usual, based on the first physician-assisted suicide law passed in Oregon with a few additional loopholes.

I was able to speak to many groups during my trip but unfortunately, I could not be scheduled to speak at the legislature’s committee meeting where people from both sides of the issue were able to speak.

However, one of the Defend Life people and I went to the statehouse to see if we could get in to talk to some legislators personally. We were only able to get to speak to one legislator and he was considered to be on the side of passing such a bill. We were told we only had 5 minutes to talk to him.

We were there for much longer.

We talked about our personal experiences, especially about my 30 year old, physically healthy daughter Marie who killed herself after a 16-year struggle with substance abuse using an assisted suicide technique she learned after reading pro-assisted suicide advocate Derek Humphry’s book Final Exit.

I told him about Marie’s death which was horrific instead of peaceful and that was like an atom bomb dropped on our family. I talked about the reality of suicide contagion which led two people close to Marie became suicidal but who were able to be saved. We talked about the increasing epidemic of suicides we have now  and how seductive is the message that killing ourselves can solve problems like not wanting to be a burden on our families. That is what my daughter told me and one of the biggest reasons given by people who have resorted to physician-assisted suicide.

I also told him about at least six problems with physician-assisted suicide laws that most legislators-and the public-don’t know but that are inherent in physician-assisted laws. These include such problems as the total immunity for doctors and the secrecy involved, mandatory falsification of physician-assisted suicide death certificates and the obvious medical discrimination between treating suicidal people who are physically healthy and suicidal people who are considered terminally ill and seeking physician-assisted suicide.

I also told him about my experiences as a nurse with suicidal people-some of whom were terminally ill-and how (except for my daughter) they all changed their minds with listening, support and referral to a mental health specialist. I also told him about a UCLA project started when California legalized physician-assisted suicide. The project offered an intensive intake process for patient requesting physician-assisted suicide conducted by trained psychotherapists and social workers instead of physicians and offering help and support for any needs the patient might have. Not only did the project show that “most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss”, but also that “only” 25% of patients went on to commit physician-assisted suicide.

When you combine this with the fact that an admitted 1/3 of terminally ill Oregon patients who obtain the lethal overdose for assisted suicide never take it and with no follow-up as to whether the diagnosis was wrong, people changed their minds or even what happened to the dangerous lethal medication in the home etc., it is obvious that lethal mistakes are being made.

THE MOST IMPORTANT THING I TOLD THE LEGISLATOR

However, what seemed to be the most important point that stunned the legislator was telling him that if he voted for the physician-assisted suicide bill, he would have to personally shoulder the responsibility for the lives subsequently lost that obviously could have been saved.

I told him that like other ethical medical professionals, my most profound fear was harming or worst of all killing a patient, however inadvertently. I told him that despite my decades of nursing, I always knew I would have to leave my profession if such a tragedy happened because I would be devastated and lose my confidence in my abilities.

I told him that now with the facts we gave him, it was up to him to vote responsibly and hopefully share our information with others.

CONCLUSION

Most people assume that legislators are always lawyers who carefully read and understand legislation before voting. Wrong!

And most people don’t understand that most legislators rely on lobbyists for their information. Well-funded groups like Compassion and Choices are able to afford lobbyists, activists, access to sympathetic media outlets, etc. that promote their physician-assisted suicide agenda while other groups like pro-life groups and disability advocates have to rely on passionate volunteers.

Years ago, a legislator here in my home state of Missouri said he felt his constituents were against a certain piece of legislation. Why? Because he said he had received 4 letters!

This was before the internet has made it easier to contact our representatives but this shows how powerful our individual efforts can be.

We need everyone to speak out and speak up, especially when it comes to dangerous legislative bills like physician-assisted suicide.

 

 

 

“Life is Worth Living, Even if It is Painful and Short”

I was greatly moved by a December 21, 2018 op-ed in the Wall Street Journal by Gayle Somers titled “Life Is Worth Living, Even if It Is Painful and Short” with the subtitle “My son’s addiction caused great suffering and ended with a fatal overdose. I’ve never regretted his birth”

In this op-ed, Ms. Somers told the story of her son’s birth and eventual death 33 years later from an accidental overdose after a 14 year battle with drug addiction. That resonated with me since I lost my 30 year old daughter Marie to suicide using an assisted suicide technique after a 16 year battle with addiction.

But it was Ms. Somers’ wonderful statement “I’ve never regretted his birth” that caused me to write a letter to the editor that was published today:

“As someone who has lost a daughter to suicide and has also lost another daughter and a grandson to medical conditions, I really appreciate and agree with Gayle Somers’ op-ed “Life is Worth Living, Even if it is Painful and Short” (Dec. 22). My first daughter died at 30 after struggling with substance abuse for 16 years.

As a nurse and friend of bereaved parents, I also have never met a parent or grandparent who regretted the birth of his or her lost child.

I once was asked for advice by a bereaved mother after her 2-year-old son with Down Syndrome died unexpectedly. She wanted to know what might help her accept her son’s death with a hopeful outlook. From my own personal experience, I told her that solace comes when a lost child’s life rather than his death becomes the most important fact about him. The love itself never dies.

Nancy Valko

St. Louis

CELEBRATING LIFE

Ms. Somers also wrote in her op-ed that:

“These days pregnant women can take prenatal tests to learn about genetic defects their babies may have. Sometimes I’m grateful that no test allows you to see how a child’s life will unfold. All parents instinctively shrink from the excruciating expectation of a child’s suffering and, inevitably, their own suffering.

Some parents are so frightened at the prospect of raising a child with a genetic abnormality that they end the child’s life in the womb. While I understand this temptation—to spare the child the struggle, to spare yourself the pain—reflecting on the time I spent with my son convinced me that life is worth it despite the suffering.”

This also resonated with me since I lost my 5 1/2 month old daughter Karen who had Down Syndrome and a severe heart defect just before her scheduled surgery in 1983.

Two years later, I was pregnant again and the doctor strongly urged me to have an amniocentesis to test for Down Syndrome. I refused not only because of the unnecessary risk to the baby but also because I knew I would love this baby regardless of any condition or lifespan. Because of Karen, I was not afraid to welcome this baby.

Happily, my daughter Joy was born healthy and now has a baby daughter of her own to share with us.

CONCLUSION

Over the years, I’ve been inspired by many parents who have lost children of all ages. Some of these children died of natural causes and some from medical malpractice, tragic accidents, suicide and even murder.

The pain of losing a child is naturally devastating, especially at first. However, I have seen those same parents also rise up and honor those children’s lives by helping others or fighting injustices.

I consider Ms. Somers one of those inspiring parents, especially how she ended her op-ed by writing:

“Even knowing what we know now about how our children’s lives would end, all of us would choose life, no matter how short, no matter how painful. We welcomed our children into our families. We gave them names, and then, one day, we began to learn how to do what all parents must do—love without limits, comfort during the pain, not shrink from the suffering, give thanks for the gifts our children are to us.”