Futility Policies and the Duty to Die (updated 2005)

I am on the road this week speaking to groups and doing radio interviews. So here is an article published in Voices magazine (a Catholic women’s’ magazine) in 2003 with an update in 2005.  In the intervening years, the problems have grown worse but I originally wrote this article when almost no one had heard of futility policies. Here is the article.

When I first saw “Jack” last September (2002), he was lying unconscious in an ICU with a ventilator to help him breathe. It had been two weeks since a truck struck the 60 year-old and his injuries were devastating — including broken bones, blunt-force trauma and a severe head injury.

When Jack’s family contacted me about seeing him, they were desperate. The doctors told them that he would never come out of the coma and the issue of withdrawal of treatment was raised. The wife refused.

I could make no guarantees but I gave Jack’s wife a pamphlet on coma stimulation and began visiting Jack weekly.

As an ICU nurse myself, I could see that some of the staff felt that taking care of Jack was a waste of time. So I was not surprised when the family was soon told that nothing more could be done. But it was shocking when the hospital told the family that Jack’s ventilator was going to be removed regardless of their wishes. The family was given a deadline to find another health facility to take him.

By that time, Jack was opening his eyes and his family thought he could squeeze their hands at times. The medical and nursing staff assured them that this was just a “reflex”.

After some frantic phone calls, Jack was transferred to a long care facility that took patients on ventilators. Soon after the transfer, his condition became critical again and the family insisted he be treated. Jack was transferred to a hospital ICU. When the staff found out I was a nurse, some of them asked me what the family’s rationale was for continuing treatment. It was obvious that they too felt Jack was a hopeless case.

But over time, Jack improved and was finally able to breathe on his own without a ventilator so he was transferred to a regular hospital bed. Eventually it became evident to all that Jack was starting to respond to commands but it took pressure to get rehab services for him.

Just before Thanksgiving — a little more than two months after his accident — Jack became fully awake. He is now in a rehabilitation facility near his home in Illinois where the staff is working to strengthen his arms and legs, which were broken in the accident. Now, no one meeting him would ever guess that he had had a brain injury.

Even doctors and nurses who ordinarily disdain religion often call cases like Jack’s “miracles”. Of course, for many in healthcare, it’s easier to believe in miracles than to accept that they were wrong and a life could have been unnecessarily or prematurely lost.

But while Jack’s story has a happy ending, many similar cases do not. Families often automatically accept or are even pressured into accepting a doctor’s grim prognosis for their loved one and withdraw treatment after a patient’s brain is injured by trauma or other conditions like a stroke. Usually, the patient then dies.

Unfortunately, families like Jack’s who choose to continue treatment despite a “hopeless” prognosis are increasingly being denied that choice because of “futile care” policies being adopted in many hospitals throughout the country.

And such “futile care” principles have so permeated much of medicine today that there are even cases of elderly or terminally ill patients expected to have months of life remaining whose doctors didn’t want to prescribe medications such as antibiotics because the person was going to die sooner or later anyway.

Futile Care Policies and “Choice”
Most people assume that either they or their families will have the right to decide about medical treatment when they become seriously or critically ill. The biggest problem, people are told, is that they or their loved one will be tethered to a machine forever if they do not sign a “living will” or other health care directive. The “right to die” movement has convinced most people and medical personnel that the ability to refuse treatment is one of the most important aspects of medical care to prevent patients and families from needless suffering. Indeed, poll after poll shows that most people say they would rather die than be a “vegetable”. And many people automatically assume that they would never want their lives prolonged if they had a terminal illness, were paralyzed or senile, etc. Most people assume that refusing treatment, like assisted suicide (the other goal of the “right to die” movement), means choice and control.

But a funny thing happened on the way to this supposed “right to die” nirvana.

Some families and patients did not “get with the program” 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 dysfunctional family relationships. (In contrast, families who agree to withdraw treatment are almost always referred to as “loving” and their motives are spared such scrutiny.)

At a 1994 pediatric ethics conference I attended, one participant was even applauded when he suggested that parents who refused to withdraw treatment from their “vegetative” children were being “cruel” and even “abusive” by not “allowing” their children to die. In some cases, doctors and ethicists have even gone to court to force withdrawal of treatment over a family’s objections. These ethicists and doctors were stunned when judges were often reluctant to overrule the families.

Yet over the years and unknown to most of the public, many ethicists have still refused to concede the choice of a right to live and instead have developed a new theory that doctors cannot be forced to provide “inappropriate” or “futile” care and treatment to patients deemed “hopeless”. This theory has now evolved into “futile care” policies at hospitals in Houston, Des Moines, California and many other areas. Even Catholic hospitals are now becoming involved.

In the July-August 2000 issue of the Catholic Health Association’s magazine Health Progress, Catherine M. Mikus and Reverend Peter Clark — a lawyer and an ethicist — argue that it is “time for a formalized medical futility policy” in Catholic hospitals. Like many such articles in secular ethics journals, the authors refrain from being too specific about what conditions and which patients would be subject to such a policy. The authors concede that even the American Medical Association says that medical futility is a concept that “cannot be meaningfully defined” and is a “subjective judgment” on which there is no widespread agreement.

Mikus and Clark make it clear that they are not talking about treatments that are “harmful, ineffective, or impossible”, the traditional concept of medical futility that, of course, is not ethically obligatory. For example, no doctor would honor a family’s request for a kidney transplant for a person who is imminently dying. Instead, the authors argue for a new definition of futility to overrule patients and/or families on a case-by-case basis based on the doctor’s and/or ethicist’s determination of the “patient’s best interest”. Ironically, the “right to die” movement was founded on the premise that patients and/or families are the best judges of when it is time to die. Now, however, we are being told that doctors and/or ethicists are really the best judges of when we should die. This is reminiscent of the imperious statement attributed to Henry Ford that his Model T customers could “paint it any color, so long as it’s black”. Thus the “right to die” becomes the “duty to die”, with futile care policies offering death as the only “choice”.

But despite the lack of consensus on what constitutes futile care, these Catholic authors are passionate about why such policies should be adopted and insist that their policies are “firmly rooted in the Catholic tradition”:

“Proper stewardship of these resources entails not wasting them on treatments that are futile and inappropriate. They must be rationally allocated; to waste them is ethically irresponsible and morally objectionable”. (Emphasis added)

In other words, a social justice-style argument is being made to save money.

Unfortunately, when it comes to Mikus and Clark’s opinions, not only is a sense of humility lacking but also a sense of God’s jurisdiction:

“In assessing whether a treatment is medically futile, physicians must consider carefully not only the values and goals of the patient/surrogate, but also those of the community, the institution, and society as a whole”. (Emphasis added)

This not only ignores God’s ultimate role in life and death but also turns the Hippocratic oath on its head. While the Hippocratic oath is no longer routinely used with medical students, its enduring legacy has always been the sacredness of the commitment of the doctor to his individual patient. Now, new doctors are often told that their ultimate commitment instead resides with the health and welfare of society.

It is appalling that Catholic doctors are now also being encouraged to adopt the secular and utilitarian concept of the greatest good for the greatest number rather than a spiritual commitment to each individual for whom they care. Under this new standard, Jesus the great Healer must be considered a failure for tenderly concerning Himself with healing such “little” lives during His ministry rather than constructing a more “politically correct” health system.

Where Do We Go from Here?
Just a generation ago, doctors and nurses were ethically prohibited from hastening or causing death. Family disputes and ethically gray situations occurred, but certain actions (such as withdrawing medically assisted food and water from a severely brain-injured but non-dying person) were considered illegitimate no matter who was making the decision.

But with the rise of the modern bioethics movement, life is no longer assumed to have the intrinsic value it once did, and “quality of life” has become the overriding consideration. Over time, the ethical question “what is right?” became “who decides?” — which now has devolved into “what is legally allowed?”

Thus, it is not surprising that the Health Progress article on futility policies is subtitled “Mercy Health System’s Procedures Will Help Free Its Physicians from Legal Concerns”. This is no afterthought, but rather the greatest fear of the authors that families may sue.

Doctors are understandably afraid of civil or malpractice lawsuits. In this article, Mikus and Clark attempt to convince doctors that a written futility policy — no matter how vague — is necessary. Then doctors would use the power of an ethics committee to back up their decisions in any legal proceeding in order to prove that the determination of futility meets the hospital’s standard of care.

Even more ominously, there have been efforts to incorporate futile care policy into state and federal law. For example, Senator Arlen Specter introduced the Health Care Assurance Act of 2001 that, while aimed at improving health care for children and the disabled, nevertheless contains a provision that there is no obligation:

“to require that any individual be offered, or to state that any individual may demand, medical treatment which the health care provider does not have available, or which is, under prevailing medical standards, either futile or otherwise not medically indicated”. [Emphasis added.]

The first step in solving a problem is to recognize it. We cannot always rely on a mainstream media that would rather exhaustively cover a star’s shoplifting charge than alert us to thorny ethical problems. Legislation and policies are often developed without public knowledge or comment. Health insurance can no longer be counted on to pay for all needed treatment in many situations.

This is why publications such as Voices and many other Catholic periodicals, pro-life news services and the Internet are so important, especially in the area of ethics. We in the Church are also blessed with encyclicals, Vatican documents and the writings of the doctors of the Church, which give clear principles that are still just as valid and useful as ever in a world of increasing technology and seductive decadence.

If we truly want to protect lives, save souls and fight injustice, we cannot remain silent in the face of an ever-expanding “culture of death”.

Postscript (2005): A couple of years after this was published, Jack was home and doing well when I was contacted by a documentary team from the UK who were making a film about Jack’s experience. I was asked to be a part of this.

I spent a lot of time with the British team and they told me how giving up on someone like Jack would not happen in the UK, despite their government-run National Health Service.

I knew this because in 2000, Dr. Keith Andrews of the Royal Hospital for Neuro-disability and his team in the UK had determined that “The slow-to-recover patient is often incorrectly labelled as being in VS (vegetative state)” at a rate of four out of 10. Dr. Andrews and his team developed the SMART (Sensory Modality Assessment and Rehabilitation Technique) to be used in hospitals to reduce the danger of misdiagnosis.

 

 

 

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.

The Catholic Church, Experimental Treatments and Charlie Gard

A disturbing statement made by Archbishop Vincenzo Paglia, head of the Vatican’s Pontifical Academy for life, appearing to support the European Court of Human Rights decision to reject Baby Charlie Gard’s parents’ request to go to the US for an experimental treatment for their critically ill son struck a nerve with many Catholics. And although Pope Francis quickly expressed his support for Baby Charlie and his parents shortly after the statement, the ethical issue of experimental treatment remains confusing to many people, Catholic or not.

But what has the Catholic Church really said about experimental means?

VATICAN STATEMENT ON EUTHANASIA

Perhaps the best guidance can be found in the 1980 Vatican Statement on Euthanasia that states:

“If there are no other sufficient remedies, it is permitted, with the patient’s consent, to have recourse to the means provided by the most advanced medical techniques, even if these means are still at the experimental stage and are not without a certain risk. By accepting them, the patient can even show generosity in the service of humanity. – It is also permitted, with the patient’s consent, to interrupt these means, where the results fall short of expectations.” (Emphasis added)

The document further explains that:

But for such a decision to be made, account will have to be taken of the reasonable wishes of the patient and the patient’s family, as also of the advice of the doctors who are specially competent in the matter. The latter may in particular judge that the investment in instruments and personnel is disproportionate to the results foreseen; they may also judge that the techniques applied impose on the patient strain or suffering out of proportion with the benefits which he or she may gain from such techniques. (Emphasis added)

This is a common sense and balanced approach that was not controversial in 1980 and should apply in Baby Charlie Gard’s situation, especially since there is apparently disagreement among doctors about the experimental treatment.

TWO CASES OF EXPERIMENTAL TREATMENT

When I worked with cancer patients in the 1980s and 1990s, I especially remember two patients who decided to try experimental treatments.

One was an older woman whose cancer had spread to her brain. A new drug had been developed that would have to be administered via an access implanted in her head. She desperately wanted to spend more time with her family and was willing to try the drug despite the potential side effects and poor chance that the drug would work.

Initially, the drug did make her worse and she was near death. Three times we called her family to come in because death was imminently expected and she was in a coma.

But she surprised us all by recovering and two years later was still doing well without any recurrence of the cancer. The doctors were astounded.

In another case, a man in his 40s with two sons also decided to be part of a clinical trial of a new drug for his cancer. Some of my colleagues questioned why he would take on such a challenge so I talked with him. He said that he accepted the fact that he was probably going to die of his cancer but he wanted to try the drug not only in the hope that it would benefit him or others like him but also because he wanted his sons to know that he fought to live and be with them.

Although this man died, he left a brave legacy of love to his boys.

CONCLUSION

It is important to understand that medical progress and technological marvels often happen because doctors, patients and family persist in trying.

For example, it wasn’t that long ago that AIDS was considered incurable. Experimental drugs did not work at first but later ones did and now AIDS is no longer an automatic death sentence.

Baby Charlie’s parents worked hard to find a potential treatment and even raised the money to transport their son to the US. The hospital’s decision to usurp the parents and unilaterally remove Baby Charlie’s life support has led to an outpouring of support for Baby Charlie and his parents.

Let us hope that this latest court appeal will reverse the hospital’s decision and help restore the rights of parents reasonably trying to help their children

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!

Rest in Peace, Nat Henthoff

The famous writer and intellectual Nat Henthoff died January 7, 2017 at the age of 91.

Wesley Smith wrote a wonderful tribute to this self-described “Jewish, atheist, civil libertarian, left-wing pro-lifer” in an article titled “Nat Henthoff, Memory Eternal”  for the National Review.

I knew Nat for many years. He was a wonderful man with a great sense of humor and a great intellectual with expertise in many areas including journalism, jazz and law. He was also proud of being a total Luddite and insisted that I send him all my articles by snail mail instead of email-which drove me crazy!

I was honored when he quoted me in his 2003 article “The Culture of Death” in the Village Voice but I was embarrassed when he sent a photographer from the newspaper to take my picture for the article.

I now treasure that article.

Rest in peace, Nat. We miss you  and we will never forget you!

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.

 

 

 

Can We Choose to Live?

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

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

  • improving quality of life;

  • sufficiently prolonging life of acceptable quality; or

  • bringing benefits that outweigh the burdens of treatment

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

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

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

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

I understand her concern.

THE CATHOLIC  DURABLE POWER OF ATTORNEY FOR HEALTH CARE DIRECTIVE

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

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

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

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

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

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

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

THE MISSOURI DURABLE POWER OF ATTORNEY DIRECTIVE

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

This directive has a section stating:

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

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

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

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

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

CONCLUSION

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

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

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

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

 

 

My testimony for Simon’s Law

On February 16,  a hearing was held by the Health committee of the Missouri Legislature on Simon’s Law.

Here is my submitted testimony to Dr. Frederick and all the committee members:

I am a past member of the Down Syndrome Association in St. Louis, an RN and legal nurse consultant and most importantly, the mother of a daughter who had special needs.
I cannot be at the hearing tomorrow but please accept my testimony in favor of Simon’s Law:

In September 1982, I gave birth to a beautiful baby girl we named Karen. Karen was born with both Down Syndrome and a severe heart defect called a complete endocardial cushion defect. A pediatric cardiologist was called in and even before I left the recovery room, he gave me the bad news about our Karen’s heart defect and even said that it was inoperable. He said to take Karen home where she would die in 2 weeks to 2 months.

This doctor turned out to be wrong. Further testing revealed that Karen’s heart defect could be fixed with one open heart operation and she had a 90% chance of survival.

My husband (a doctor) and I (an ICU nurse) were determined that our daughter receive the best medical care possible for her heart condition and without bias because she had Down Syndrome. We knew about the recent Baby Doe case where the parents of baby boy with Down Syndrome and an easily correctable tracheoesophageal fistula refused surgery so that their baby would die. The case went to court and a judge ruled that the parents could make that lethal choice. As medical professionals, we were appalled by this case but at least we could make sure that our daughter would have her chance at life. Or so I thought.

The bias against children like Karen soon became apparent when the cardiologist said he would support us “100%” if we chose to let our Karen die without surgery. I had to insist that Karen be treated for her heart defect the same way any other child would be treated for the same heart defect. To do otherwise was medical discrimination and illegal.

Then, the surgeon recommended for Karen’s pre-op heart catheterization was overheard questioning the wisdom of even treating “all these little mongoloids”! Another doctor sympathetically told us that “people like you shouldn’t be saddled with a child like this.” We were stunned by this negative view of children with Down Syndrome.

Later on when Karen developed a pneumonia that was being successfully treated in the hospital, I found out that my trusted pediatrician had even made Karen a “Do Not Resuscitate” behind my back because I “was too emotionally involved with that retarded baby”. The DNR was rescinded and we took Karen home but I found it hard to trust any doctor after that.

Unfortunately, Karen developed another bout of pneumonia and died of complications just before her scheduled open-heart surgery. But even at the very end, when Karen was apparently dying, a young resident physician “offered” to pull all her tubes so that she would die as soon as possible. I reported this young man to the chief of pediatric cardiology who was furious with the resident. (This chief of cardiology later started a clinic for children with Down Syndrome to meet their special health needs.)

Although we lost Karen when she was just 5 ½ months old, I still treasure my time with her and because of her, I became an advocate and volunteer for people with disabilities.
I wish I could say that my story is unique but I have seen many similar situations over the last three decades involving people of all ages with disabilities.

Therefore, I beg you to approve Simon’s Law. It will potentially save lives as well as send a strong message that medical discrimination against the disabled based on subjective judgements of “medical futility” and/or predicted “poor quality of life” is wrong.

Sincerely,

Nancy Valko, RN ALNC

LIVING WITH “LIVING WILLS”

In the early 1970s when I was a young ICU nurse, none of us medical professionals had even heard of a “living will”. There was a universal presumption for life and “quality of life” was something to be improved, not judged.

Nevertheless, sick people could and did refuse treatment and even check themselves out of the hospital against medical advice. When patients appeared to be dying, they or their families could agree to a “do not resuscitate” (DNR) order. Overly aggressive or useless treatments could be discouraged when such measures were considered medically futile or excessively burdensome for the patient. But one thing we didn’t do was offer to withhold or withdraw medical care like tube feedings to cause or hasten a patient’s death.

Unknown to us, all this began to change after Louis Kutner, a Chicago lawyer, wrote an article in the Indiana Law Journal titled Due Process of Euthanasia: The Living Will, A Proposal” in 1969. (emphasis added). By 1970, The Euthanasia Society of America (later renamed the Society for the Right to Die) distributed 60,000 living wills. In 1976, California passed the nation’s first “living will” law. Now, there are proposals to eventually include even physician-assisted suicide in “living wills”.

I use the common term “living will” to represent the wide variety of end of life documents that have evolved since the original “living will”, including the newest but problematic one called POLST (physician orders for life-sustaining treatment).

I wrote a 2001 article “Of Living Wills and Butterfly Ballots”   because I was concerned that many people were signing such documents with little knowledge of the history and problems with such documents that I witnessed as a nurse and ethics committee member. However, with the crucial help of a sympathetic media, court cases involving seriously brain-injured people like Terri Schiavo and government mandates such as the 1990 Patient Self-Determination Act have resulted in the heavy promotion of “living wills” as simple, worry-free documents. Now the federal government is set to begin paying healthcare providers for talking to all Medicare beneficiaries about such documents.

CAN “LIVING WILLS” BE HAZARDOUS TO YOUR HEALTH?

Recently, I talked to lawyers who expressed confusion and concern over the “living wills” they were asked to draw up. In addition, Medscape, a subscription website for medical professionals, and the American Medical News have published recent articles such as “Advance Directives May Be Hazardous to Your Health”  and “Clearing Up Confusion on Advance Directives”. The last article even warns

“misinterpretations of end-of-life documents too often result in lost lives or unwanted care” such as when “physicians incorrectly assume that DNR means not to treat a patient who is critically ill”.

When even doctors and lawyers are confused, there is a big problem. In the real world of medicine, I even heard some doctors say that if in doubt, it might be legally safer not to treat than to treat someone with a “living will” in an emergency because of lawsuits where a patient with a “living will” survived or had serious impairments.

SHOULD I EVEN HAVE A “LIVING WILL”?

When “living wills” first came out, I felt I was safer not to have one to make sure I received treatment. Later, I changed my mind. I felt it was safer to designate someone I trusted with the legal authority to make decisions if I was unable to speak for myself rather than just leave it to my family members, some of whom vigorously disagreed with my stance for feeding brain-injured people like Terri Schiavo.

I never tell people that they must or must not have a “living will” but everyone should be fully informed. I do encourage people to check out information sites like the Pro-Life Healthcare Alliance’s “Informed-A Guide to Critical Medical Decisions”  which has sections explaining ventilators, CPR (cardiopulmonary resuscitation), feeding tubes, misuse of opioids and sedatives as well as end of life considerations.

There are also several informative and protective “living will” documents from organizations like the Patients Rights Council and the American Life League. The National Right to Life Committee even has such documents online and specific to state laws.

SOME POINTS TO CONSIDER BEFORE SIGNING A “LIVING WILL” STYLE DOCUMENT

Here are some of my personal recommendations as a nurse before signing a standard “living will” or even a protective one.

1. Make sure the document is as short as possible, simple to understand and that the presumption for life is expressly stated so that if doctors are in doubt about your wishes, they should treat you.

What most people do not know is that “living will” style documents often go unread by doctors and nurses until a critical situation develops and time is of the essence. Even worse, some doctors and nurses still assume or misinterpret “living wills” as meaning the patient does not want treatment, especially if the patient is older or disabled.

2. Avoid vague terms like “significant recovery” and “terminal event” that have no objective medical standard and can easily be misinterpreted.

I’ve seen patients who have just had a stroke or head injury incorrectly judged “terminal” or “incurable by doctors. Such patients often get better with time and treatment. And, of course, any treatment that is medically futile or excessively burdensome to the patient can be ethically withdrawn later. I add the emphasis because now futility and burden are too often assumed to mean an inadequate “quality of life” or economic burden to the family or society.

3. Designate one person you trust to make your medical decisions with a backup person or persons.

Sometimes when only one person is the designated decision maker, he or she may be unavailable or incapacitated so a backup is important especially in a critical situation.

4. Consider not checking off particular treatments or conditions to be automatically refused.

Personally, I wanted a positive “living will” that only designates my decision maker and his/her right to make decisions about my care rather than signing a “living will” to refuse future treatment or set possible future conditions where I would want treatment stopped or withheld. Instead, I want all current options, risks and benefits of treatment fully explained to my decision maker based on my current condition.

5. Many “living wills” contain a section on pain with such sentences such as “I want my doctor to give me enough pain medicine to relieve my pain”. You might consider adding a phrase like “without hastening my death.”

I have seen unnecessarily high doses of pain medicine deliberately given to make a patient unconscious while food and water were stopped. Often, this was called “comfort care” instead of terminal/palliative sedation  but the result was hastening or causing death by dehydration and/or suppression of breathing.

Everyone wants and deserves adequate pain control at the end of life. Carefully increasing doses of pain medication and other measures work in virtually any situation and family members should advocate this for their loved ones.

CONCLUSION

There may be no perfect “living will” but as a former hospice nurse and family caregiver myself, I believe that dying people have a right to a good death with as few medical interventions as possible for comfort without deliberately hastening or causing death. The time before death may be short or long but I believe that people have the right to die at their own natural pace.

Death is not something to get over with as soon as possible. As some people with terminal illness have told me, they hated being treated as if they were already dead when they were still alive. They wanted to hear jokes, be with family and friends, go to church, etc. And since hearing is thought to be the last sense to go, I interacted with my dying patients in comas just as I did with my conscious patients.

The process of coming to terms with  death can be difficult at times but it also can be a meaningful time to review a life with all its joys and sorrows as well as a time for family and friends to show love, support and even healing.