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Welcome to my blog!

I hope you will find it worthwhile and enlightening. These are my own personal observations and I encourage you to share yours.

Links to sources are underlined. Just click to see the referenced citation.

I also have an archive of older articles, etc. from Voices magazine at my other blog “Nancy Valko, RN ALNC”.

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Nancy Valko, RN ALNC

Assisted Suicide and the Psychiatrist

When a person is suicidal, it is standard to get a psychiatric or psychological evaluation to help treat the suicidal person-except in states that have physician-assisted suicide laws. In those states when a suicidal person wants assisted suicide, there is only a so-called “safeguard” that leaves it up to the opinion of the assisted suicide doctor as to whether or not such an evaluation is necessary.

Not surprisingly, very few such consultations are done since assisted suicide advocates insist that suicide is rational when a person is terminally or incurably ill.

But even if such an evaluation is done, would it be done according to the same standards as the evaluation of a suicidal person not seeking medically assisted suicide?

In my opinion, probably not.

PSYCHIATRIC AMBIVALENCE

In a recent Psychiatric Times article “Death and the Psychiatrist”,  editorial board member and ethics writer Dr. H. Steven Moffic struggles with the topic of medically assisted suicide:

The role of the psychiatrist is generally to determine whether psychiatric illness is contributing to the decision to die. The assumption is that the mental illness is treatable if it is diagnosed. Another related role is to assess competence to make a decision.

However, data indicate that psychiatrists are seldom called in by other physicians when they should be. Moreover, in the Netherlands and Belgium, physicians can now be called on to help mentally ill patients die.2 (Emphasis added)

Dr. Moffic goes on to note that:

Polls indicate that like the public, physicians and psychiatrists have mixed and ambivalent opinions about euthanasia, and—for moral reasons—few of us want any involvement.5” (Emphasis added)

And:

There are obvious financial considerations as Baby Boomers age and become ill. End-of-life medical costs are high and physician-assisted suicide offers a cheap, quick solution to conserve health care resources. (We in psychiatry know this all too well, since we were an early target of for-profit managed care cost savings.)13 (Emphasis added)

Yet he concludes:

Beyond the personal, what do I believe professionally about euthanasia? I lean toward the AMA position—that physician-assisted death could take us too far away from our healing role. Perhaps, though, a special cadre of physicians can be trained and dedicated to this role. (Emphasis added)

However, ambivalence does nothing to  stop or even limit medicalized suicide.

CONCLUSION

The traditional Hippocratic Oath was routinely taken by graduating medical students and promoted the standard of incorruptible virtue in the practice of medicine.  In the 1960s, that began to change and new Oaths were promoted as more up to date and relevant.

Significantly, one of the first parts of the Hippocratic Oath to be eliminated was:

I will not give a lethal drug to anyone if I am asked, nor will I advise such a plan; and similarly I will not give a woman a pessary to cause an abortion. (Emphasis added)

Now we have medicalized deaths actually promoted as civil rights.

Without strong ethical standards, enforceable laws and honorable health care providers,  how can we be expected to just automatically trust our health care system?

 

 

 

 

 

 

Ethics and Alzheimer’s-Part Two: Feeding Tubes

In 1988 during the Nancy Cruzan case involving a young, non-terminally ill woman in a so-called “persistent vegetative state” whose parents wanted her feeding tube withdrawn so she would die, I was asked if I was going to feed my mother who had Alzheimer’s disease. At the time, my mother had no problems with eating but I knew the real question was about a possible feeding tube later on.

Ironically, I had just written an  op-ed on the Cruzan case titled “Feeding is not Extraordinary Care  and I pointed out that if the withdrawal of food and water from people with severe brain injuries was accepted, the pool of potential victims would expand.

I was thinking about people like my mother and, sadly, I was right.

In 1993, just 3 years after Nancy Cruzan died a long 12 days after her feeding tube was removed, a letter in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, one of the future architects of Obamacare, acknowledged that the actual proof purported to show that the Cruzan case met Missouri law requiring “clear and convincing evidence” that Ms. Cruzan would not want to live in a so-called “vegetative” state rested only on “fairly vague and insubstantial comments to other people”.

However, he noted that

“…increasingly it will be our collective determination as to what lives are worth living that will decide how incompetent patients are treated. We need to begin to articulate and justify these collective determinations.” (Emphasis added.) Source: The American Journal of Medicine January 1993 Volume 94 p. 115

ALZHEIMER’S AND FEEDING TUBES

When I was asked about whether I would feed my mother with Alzheimer’s, I gave the same answer I gave when my baby daughter Karen with Down Syndrome and a heart defect was critically ill in 1983: Their anticipated deaths must be from their conditions, not from deliberate starvation and dehydration.

In the end, neither one needed a feeding tube. My daughter’s kidneys and other organs shut down and, since food or water would cause worse fluid overload, Karen was not given extra fluid and her heart gave out a short time later. In my mother’s case, she eventually needed to be spoon-fed until she quietly died in her sleep.

As a former hospice and ICU nurse, these scenarios are very familiar to me. Multiple organ failure sometimes occurs with critical illness and dying patients often gradually lose their appetites as they approach death. In those cases, we would give what little these people want or need until death. But for people not dying or near death, we made sure that they had at least basic  medical care and the life essentials of food, clothing and shelter. This is-or used to be-simple common sense.

ALZHEIMER’S AS A FATE WORSE THAN DEATH

The easiest way to get people to accept death by starvation/dehydration is to get them to choose it for themselves even before they have a problem.

Thus, media stories of people and their families suffering tremendously because of Alzheimer’s are very persuasive. People fear becoming an economic and emotional burden on their families. Not surprisingly, many people then willingly check off feeding tubes and other medical treatments in their advance directives.

Position papers like that from the American Geriatrics Society and the Alzheimer’s Association can also paint a dark picture:

The Association asserts that research evidence support no medical benefit from feeding tubes in advance dementia and that feeding tubes may actually cause harm in the advanced state of Alzheimer’s. Additionally, it is ethically permissible to withhold nutrition and hydration artificially administer by  vein or gastric tube when the individual with Alzheimer’s or dementia is in the end stages of the disease and is no longer able to receive food and water by mouth

The presumption is that such a death is peaceful and painless when a person is assumed to be unaware in a “vegetative” or late Alzheimer’s state. However, Bobby Schindler has written an account of the reality  of a prolonged starvation/dehydration death on his sister Terri Schiavo that was hidden from the public.

“JOE’S” CASE

Several years ago, I cared for a man with early stage Alzheimer’s who had a serious pneumonia needing a ventilator for a couple of days. Afterwards, Joe (not his real name) was alert and cooperative but the ventilator tube unexpectedly affected his ability to swallow and speak easily. His family asked about a feeding tube and special swallow therapists to try to retrain his throat muscles so that he could eat and drink safely. That is how an even older friend of mine in the same situation but without Alzheimer’s was successfully treated recently.

However in Joe’s case, a neurologist was first called to evaluate Joe’s mental status. I was there as the doctor asked him questions like “How many fingers am I holding up?” The man answered the questions correctly but the neurologist immediately wrote for nothing by mouth including crucial blood pressure medications. He also then recommended no feeding tube to the family. No swallow therapy was ordered. Joe was never asked about this.

When I questioned the neurologist and pointed out that the man had given correct answers by nods and holding up the correct number of fingers when asked, the neurologist responded by saying that the man did not hold up his fingers “fast enough”!

This is the tragic reality when we judge some lives as not worth living.

UP CLOSE AND PERSONAL

One of my oldest friends, “Dr. Mary” (not her real name), is a pro-life doctor who asked me years ago to be her power of attorney for health care if she became incapacitated. She had never married and had no close relatives. She told me what she wanted, especially in light of the Nancy Cruzan case, and signed an advance directive available through our archdiocese.

My friend now has presumed Alzheimer’s dementia and she is now in the later stages. She can still feed herself, albeit somewhat messily. She no longer remembers my name or her friends’ names but she is delighted when we come.

At almost 90 and with inevitable death approaching, she now has a Do Not Resuscitate (DNR) order but her nursing home is well aware that this does not mean any reduction in care or attention.

Along with her other friends who visit and help, our goal now is to make Dr. Mary as happy and safe as possible. If she needs spoon-feeding, she will get it. All of us hope that Dr. Mary will never need a feeding tube but she will not be denied one if necessary.

But best of all, Dr. Mary will continue to receive our love until her Lord calls her home.

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.

 

 

 

Ethics and Alzheimer’s –Part One: Why I Can’t “Walk to End Alzheimer’s”

In the 1980s, my mother was diagnosed with Alzheimer’s disease, a progressive mental deterioration due to generalized degeneration of the brain.  It was quite a shock to the family and at that time, there was an unfortunate stigma attached to Alzheimer’s that led  some family members to insist that mom’s illness be kept secret.

At one point, my mother even wound up in a psychiatric unit before we found a good geriatrician, a doctor who specialized in care for older people as well as dementia. My mother eventually died of cancer while in the later stages of Alzheimer’s but she was able to be cared for at home until she died in her sleep the day she went to a nursing home.

After my mother’s death, I was glad to later learn about groups like the Alzheimer’s Association   and the development of community resources to help people with Alzheimer’s and their families. It would have been helpful with my mother.

Since it started in 1980, the Alzheimer’s Association is now international and the largest nonprofit funder of Alzheimer’s research . The organization’s public profile has exploded through media coverage of celebrity supporters and fundraising efforts like the “Walk to End Alzheimer’s”,  the world’s largest event to raise awareness and funds for Alzheimer’s disease care, support and research.

However, I cannot walk for Alzheimer’s because of its support of embryonic stem cell research as well as concerns about the organization’s position statements on issues like medical treatment and tube feedings. I will be addressing those issues in future blogs.

I do not intend to just single out this organization or portray it as “bad”.

I have been a volunteer for several organizations whose causes have directly touched family members and friends. However,  I do examine each organization to determine how and where its fundraising is used before I volunteer to help.

ALZHEIMER’S ASSOCIATION STATEMENT “RESEARCH USING HUMAN STEM CELLS

This 2011 position statement on their website states:

 “The Alzheimer’s Association policy supports and encourages any legitimate scientific avenue that offers the potential to advance this goal, including human embryonic stem cell research; and, we oppose  any restriction or limitation on research, provided that appropriate scientific review, and ethical and oversight guidelines and compliance are in place.” (Emphasis added)

Raising funds for research resulting in a cure of any disease is laudable, but without ethical boundaries, such research can cross the line. Embryonic stem cell research necessarily involves the destruction of human lives in their earliest stages and should not be allowed on even just humanitarian grounds, much less funded.

Ironically, embryonic stem cells have been a great disappointment in human research and even very harmful in some cases while ethical, non-embryonic stem cells are achieving great breakthroughs, for example in treating  cataracts of the eye and even paralysis.

As a nurse, I have known for decades  about  the ethically obtained stem cells from bone  marrow donors  that now every year save  the lives of  tens of thousands of people with cancer and other diseases.

In fact, my own grandson’s life was saved 3 years ago because of a bone marrow transplant!

So while I appreciate the Alzheimer’s Association’s  effort to help people with Alzheimer’s and their families find practical resources for help and support , I cannot walk to raise research money for a group that not only supports embryonic stem cell research but also opposes any restrictions.

CONSCIENCE RIGHTS, CRISIS PREGNANCY CENTERS-AND MORE

A new Illinois law was just signed by Governor Bruce Rauner with dire implications for pro-life health care providers.

As an August 9, 2016 National Catholic Register article titled  “Illinois Law Threatens Conscience Rights, Crisis-Pregnancy Centers” explains, this new law changes the former state Health Care Right of Conscience Act to require that pro-life doctors, nurses and even staff at crisis pregnancy centers  present abortion as a legal treatment option and are required to refer, transfer or give information about where to go for an abortion when a woman says she wants one.

While the terminology about other health care options is vague, the law specifically cites:

“family planning, counseling, referrals, or any other advice in connection with the use or procurement of contraceptives and sterilization or abortion procedures…”

Incredibly, this Illinois law  also defines conscience rights as merely religious:

 “Conscience” means a sincerely held set of moral convictions arising from belief in and relation to God, or which, though not so derived, arises from a place in the life of its possessor parallel to that filled by God among adherents to religious faiths

Ironically, as Kathy Bozyk, who operates the Southside Pregnancy Center in Chicago notes, while she is required by the law to discuss the alleged benefits of abortion and refer women to abortion providers, abortion businesses are not required to make referrals to crisis-pregnancy centers.

Instead, abortion groups like the National Abortion and Reproductive Rights Action League (NARAL) continue to actively fight crisis pregnancy centers, accusing them of false and misleading information as well as threatening women’s safety. They are a strong force working to get laws like this passed.

PUSHBACK

There is an unfortunate and surprising assessment of the law in the NCR article from Robert Gilligan, executive director of the Catholic Conference of Illinois:

According to the article, Mr Gilligan said that although the Conference was disappointed that the governor signed the law, the Catholic Conference was able to negotiate, with opposing parties, a revision to the original bill that the state’s 43 Catholic hospitals can live with, saying with regard to the requirement to refer, transfer or provide written information on where to find an abortion facility :

He said co-sponsors of the bill said even simply ripping out the pages of a phone book with names of all the local OB-GYNs in a certain area would be enough to comply.

If accurate, is this a helpful or even realistic response?

Fortunately, we have courageous, front-line  health care providers like Kathy Bozyk who refuse to comply, Illinois Right to Life continuing its opposition and pro-life legal groups like the Alliance Defending Freedom (ADF) who filed a lawsuit in state court against Governor Rauner on behalf of The Pregnancy Care Center of Rockford and the Chicago-based Thomas More Society that plans a lawsuit.

It’s important to note that this Illinois law comes on the heels of a December California law forcing pro-life pregnancy centers and state-licensed medical clinics to distribute information on where and how to obtain a state-funded abortion or face fines of $1000 a day.

So it is imperative that  all of us throughout our nation work to ensure that strong conscience rights be upheld, strengthened, correctly defined and even expanded to include all health care ethics issues, especially in the face of possible or actual assisted suicide laws.

Conscience rights are essential to help us protect our patients from a healthcare system that is increasingly succumbing to a “culture of death” mentality.

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?

 

 

Conscientious Objection, Conscience Rights and Workplace Discrimination

The tragic cases of  Nancy Cruzan and Christine Busalacchi , young Missouri women who were claimed to be in a “persistent vegetative state” and starved and dehydrated to death, outraged those of us in Missouri Nurses for Life and we took action.

Besides educating people about severe brain damage, treatment, cases of recovery and the radical change in medical ethics that could lead to the legalization of euthanasia, we also fought for healthcare providers’ rights against workplace discrimination for refusing to participate in deliberate death decisions. We talked to nurses who were threatened with termination.

Although Missouri had some protections against forcing participating in abortion, there were no statutes we could find where health care providers were protected against being forced to participate in deliberate death decisions. We were also told by some legislators that our chance of success was almost nil

Nevertheless, we persisted and after years of work and enduring legislators watering down our original proposal to include lethal overdoses and strong penalties, Missouri Revised Statutes, Section 404.872.1 was signed into law in 1992. It states:

Refusal to honor health care decision, discrimination prohibited, when.

404.872. No physician, nurse, or other individual who is a health care provider or an employee of a health care facility shall be discharged or otherwise discriminated against in his employment or employment application for refusing to honor a health care decision withholding or withdrawing life-sustaining treatment if such refusal is based upon the individual’s religious beliefs, or sincerely held moral convictions.

(L. 1992 S.B. 573 & 634 § 7)

Fast Forward to Today

In 2016, we face groups like Compassion and Choices that have pushed assisted suicide legislation through in some states and hoping for an eventual sweeping Supreme Court decision making assisted suicide a constitutional right like abortion.

Some European countries like Belgium and Holland have virtual euthanasia on demand for even non-terminally ill people of any age. In Canada, their Supreme Court has forced assisted suicide on that country and now the province of Quebec has lethal injection kits available to any doctor.

Not surprisingly, conscience/workplace rights for health care providers are being vigorously fought both in those countries and here in the US.

For example, Compassion and Choices’ Barbara Coombs Lee, one of the architects of Oregon’s assisted suicide law, claims that strong conscience-right protections encourage “workers to exercise their idiosyncratic convictions at the expense of patient care” at the end of life.

Hope on the Horizon?

In May, a hospital in Poland stopped performing abortions after every single doctor signed a pledge refusing to do them.

Now, several hospitals in Santa Barbara  and Palm Springs as well as Providence medical centers are opting out of the new California assisted suicide law.

Personally, I believe that if people are given a choice when they are sick, they would naturally prefer a hospital that is committed to care rather than assisted suicide.

Thus, conscientious objection, workplace discrimination/conscience rights laws and the power of institutions dedicated to ethical health care can help turn the tide against assisted suicide laws or at least save some lives and mitigate some of the damage caused by assisted suicide laws. It may take a long time before killing sick or disabled people is again seen as abhorrent and unethical but the effort will be worth it.

As I have said before, “NO!” is a powerful and potentially lifesaving word.

 

Brain Death: Do We Know Enough?

 

The following is my article published in the National Catholic Bioethics Quarterly (Spring 2016): 55-59. © 2016 The National Catholic Bioethics Center Quarterly.

Abstract. Every year, people make decisions based on trust in the certainty of diagnoses of brain death. These decisions range from signing an organ donation card to withdrawing life support from a loved one. Two recent developments have revived concerns about medical standards for determining brain death. One is a recent study on variability in brain death policies in the United States; the other is the filing of a federal lawsuit to rescind the death certificate of Jahi McMath, a teenager who appears to have survived a 2013 declaration of brain death. The author examines these developments and asks whether trust in the certainty of brain-death determinations is currently warranted.

Nancy Valko, RN, ALNC, is a legal nurse consultant and a spokesperson for the National Association of Prolife Nurses. A registered nurse since 1969, she has worked mostly in critical care as well as hospice, oncology, and home health. She is a past co-chair of the St. Louis Archdiocesan Respect Life Committee. She received the People of Life award from the US Conference of Catholic Bishops in 2015.

—————————————————————————

Two recent developments on the controversial issue of brain death have revived concerns about the medical standards currently used for determining brain death. One was the publication of a JAMA Neurology study of 508 US hospitals, titled “Variability of Brain Death Policies in the United States,” by Dr. David Greer et al., which found major variations in their policies for determining brain death. The study concluded that “hospitals should be encouraged to implement the 2010 AAN [American Academy of Neurology] guidelines to ensure 100% accurate and appropriate determination of brain death.”1

The other development surrounds a federal lawsuit pushing to rescind the death certificate of Jahi McMath. McMath, a teenager from Oakland, California, was declared brain dead two years ago but is apparently still surviving and may be showing some signs of improvement.2

Every year, people make decisions—to withdraw life support from loved ones or to sign organ donation cards—based on trust in the certainty of a diagnosis of brain death. Is such trust warranted?

A Short History of US Brain-Death Policies

Although the concept of irreversible coma was first introduced in 1959, the cur- rent legal and medical concept of brain death gained widespread acceptance after the publication, in 1968, of “A Definition of Irreversible Coma,” the report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death.

The stated purpose of the Harvard report was “to define irreversible coma as a new criterion for death,” because new technology such as ventilators could maintain a patient “whose heart continues to beat but whose brain is irreversibly damaged.” The committee noted that “obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation.” The Harvard paper laid out four conditions for a diagnosis of brain death: (1) unreceptivity and unresponsitivity, (2) no movement or breathing, (3) no reflexes, and (4) a flat electroencephalogram, providing confirmatory data that should be utilized “when available.”3

Starting in the early 1970s, various state legislatures and courts acted to turn brain death into a legally recognized standard for determining death by loss of all brain function. Patients declared brain dead could then be removed from life support measures, like mechanical ventilation, without legal ramifications or their organs could be harvested while their hearts were still beating and a ventilator kept their lungs functioning.

In 1981, the US Uniform Determination of Death Act formally added “irreversible cessation of all functions of the entire brain, including the brain stem” to the legal definition of death.4 However, while the act set the general legal standard for determining brain death, it did not dictate the medical criteria. Many state laws  just cite “accepted medical standards” for determining brain death. Over the years, efforts were made to standardize these medical criteria, most recently by the AAN guidelines established in 2010.5

Not All Hospitals Comply with the Guidelines

In an interview with Medscape, David Greer, the lead author of the study in JAMA Neurology, expresses concern that not all of the 508 US hospitals surveyed were “100% compliant” with the 2010 guidelines by the American Academy of Neurology. Of the hospitals surveyed, the Medscape article notes that only “about a third of policies (33.1%) required specialist expertise in neurology or neurosurgery, but 150 policies had no mention of who could perform the determination.” 6 The article also notes that not all hospital policies require testing of lower brainstem function to establish the loss of all brain function, and not all comply with other AAN recommendations such as establishing the cause of the brain dysfunction, the absence of effects of specific medications like sedatives, and crucial aspects of the apnea test.

One of the potentially disastrous consequences of these inconsistencies in hospital testing policies is that a person can be treated as a living patient at one hospital but declared brain dead at another.

Would full compliance with the 2010 guidelines “ensure 100% accurate and appropriate determination of brain death”? Probably not, given the findings of the 2010 report updating the AAN guidelines.7 Eelco Wijdicks et al. observe that “many of the details of the clinical neurologic examination to determine brain death can- not be established by evidence-based methods. The detailed brain-death evaluation protocol that follows is intended as a useful tool for clinicians. It must be emphasized that this guidance is opinion-based. Alternative protocols may be equally informative.” They also note that there is “insufficient evidence” to determine such crucial standards as “the minimally acceptable observation period to ensure that neurologic functions have ceased irreversibly,” “the comparative safety of techniques used for apnea testing,” and the accuracy of “newer ancillary tests [in confirming] the cessation of function of the entire brain.”8

The significance of these criteria is highlighted in a 2012 article, “A Survey of American Neurologists about Brain Death: Understanding the Conceptual Basis and Diagnostic Tests for Brain Death,” by Ari Joffe et al.9 The authors note, “It has been shown that some brain functions continue after accurately clinically diagnosed BD (brain death), including EEG activity in 20%, evoked potential activity in 5%, and hypothalamic neuroendocrine function in > 50%. These activities may be explained by the finding that continued brain blood flow occurs in 5–40% of BD patients, and pathologic destruction of brain does not occur in more than 40% of BD patients (even after over 24–48 hr. of maintained circulation).”10 Thus there seems to be reasonable cause for concern whether even 100 percent compliance with AAN guidelines would completely ensure the accuracy of a diagnosis of brain death or the validity of some critical brain-death tests.

Jahi McMath

In December 2013, thirteen-year-old Jahi McMath suffered cardiac arrest after undergoing surgery for sleep apnea at Children’s Hospital Oakland, in California. Although doctors managed to resuscitate her, they declared McMath brain dead and prepared to remove the ventilator. Hoping she might recover, however, the family insisted that it remain in place.

After several court battles, a judge permitted McMath’s family to transfer her to a facility in New Jersey that allowed the continued use of the ventilator. Two years later, McMath’s family is still fighting, suing in federal court have her death certificate rescinded.11 According to the family’s attorneys, “Jahi does not fulfill California’s statutory definition of death, which requires the irreversible absence of all brain function, because she exhibits hypothalamic function and intermittent responsiveness to verbal commands.” 12

A ruling to rescind McMath’s death certificate would have profound implications for the medical and legal determination of brain death, especially since her initial diagnosis was confirmed by multiple doctors in a well-respected hospital.

McMath is not the first person to survive for a prolonged time after a brain- death diagnosis. Alan Shewmon, MD, studied approximately 175 cases of long-term survival after a declaration of brain death, for periods ranging from one week to more than fourteen years.13 In other cases, pregnant women declared brain dead have been able to gestate unborn babies for weeks or months until a healthy delivery.14

Most concerning of all are cases like that of Zach Dunlap, a young man from Oklahoma who was declared brain dead after an all-terrain vehicle accident in 2008. Testing showed no blood flow to his brain, and Dunlap was being considered for organ donation when a relative discovered a physical response from Zach. Four months later and already making plans to return to work, Dunlap appeared on NBC’s Today show, where he told hosts that he heard a doctor say he was dead, and it “just made me mad inside.”15

Alarmingly, there have been other reported “near misses” like Dunlap’s that also did not lead to rigorous medical investigations to determine what went wrong with the initial brain-death determinations. Yet experts continue to maintain that there is “no documented report of patients regaining brain function after being declared brain dead,” although some allow that “maybe mistakes happened and they weren’t reported.”16

Persistent Controversies

Controversy about brain death has simmered for years in bioethical and medical circles. Influential  experts such as Robert Truog and Franklin Miller argue that doctors should drop the rule requiring that people be declared dead before vital organs are taken, and instead merely obtain “valid informed consent for organ donation from patients or surrogates before the withdrawal of life-sustaining treatment in situations of devastating and irreversible neurologic injury.”17

The Catholic Church has been involved in the controversy over brain death since the Harvard report cited Pope Pius XII’s 1957 address “The Prolongation of Life” to support its recommendations.18 Since then, there have been several papal statements and conferences on the determination of brain death. Collectively, these are widely seen to indicate a cautious acceptance of the concept of brain death that is based on the assurance of medical certainty to provide moral certainty.

When the issue is death, medical ethics must be backed up by accurate medical facts. In the case of the legal and medical definition  of brain death as “irreversible cessation of all functions of the entire brain, including the brain stem,”19 medical science, not philosophical speculation, must provide the proof beyond a reasonable doubt.

When cases like those of McMath and Dunlap are routinely dismissed instead of rigorously investigated to establish the facts, medical certainty is not achieved and medical integrity is undermined. In addition, when hospitals set their own standards and policies for determining brain death without external accountability, lives—as well as the essential and necessary trust in the health care system—can and possibly will be lost.

Footnotes:

1. David M. Greer et , “Variability of Brain Death Policies in the United States,” JAMA Neurology 73.2 (February 1, 2016): 213, doi: 10.1001/jamaneurol.2015.3943.3943. The updated AAN guidelines are presented in Eelco F. M. Wijdicks et al., “Evidence-Based Guideline Update: Determining Brain Death in Adults—Report of the Quality Standards Subcommittee of the American Academy of Neurology,” Neurology 74.23 (June 8, 2010): 1911–1918.

2. McMath et v. State of California et al., no. 4:2015cv06042 (N.D. Cal. Dec. 23, 2015); see David DeBolt and Malaika Fraley, “Jahi McMath: Family Sues in Federal Court to Have Brain-Dead Girl Declared Alive,” Mercury News, December 24, 2015, http://www.mercurynews.com/.

3. Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, “A Definition of Irreversible Coma,” JAMA 6 (August 5, 1968): 337, doi: 10.1001/jama.205.6.337. P. Mollaret and M Goulon identified irreversible coma in their essay “Le Coma Dépassé (memoire preliminaire),” Revue Neurologique 101.1 (July 1959): 3–15.

4.National Conference of Commissioners on Uniform State Laws, Uniform Determination of Death Act, approved 1980/1981, http://www.uniformlaws.org/.

5. Allison Gandey, “New Brain Death Guidelines Issued,” com, June 10, 2010, http://www.medscape.com/.

6. Pauline Anderson, “Not All Hospital Brain Death Policies Comply with Guidelines,” com, December 30, 2015, http://www.medscape.com/, emphasis added.

7. Wijdicks et al , “Evidence-Based Guideline Update.”

8. Ibid. 1911, 1914, emphasis added.

9. Ari Joffe et , “A Survey of American Neurologists about Brain Death: Understanding the Conceptual Basis and Diagnostic Tests for Brain Death,” Annals of Intensive Care 2.1 (February 17, 2012): 1–8, doi: 10.1186/2110-5820-2-4.

10. Ibid, 4

11. DeBolt and Fraley, “Jahi McMath”

12. Winkfield v. Children’s Hospital Oakland, no. RG-15760730, first amended com plaint (CA, Ct. Alameda County, Nov. 4, 2015), para. 36, original emphasis.

13. Alan Shewmon, “Chronic ‘Brain Death’: Meta-Analysis and Conceptual Con- sequences,” Neurology 51.6 (December 1998): 1538–1545.

14. Majid Esmaeilzadeh et , “One Life Ends, Another Begins: Management of a Brain-Dead Pregnant Mother—A Systematic Review,” BMC Medicine 8.74 (November 18, 2010): doi: 10.1186/1741-7015-8-74.

15. Natalie Morales, “‘Dead’ Man Recovering after ATV Accident,” NBC News, March 24, 2008, nbcnews.com/.

16. Pauline Anderson, “Not All Hospital Policies ”

17. Robert Truog and Franklin G. Miller, “The Dead Donor Rule and Organ Transplantation,” New England Journal of Medicine 359.7 (August 14, 2008): 675, doi: 10.1056/NEJMp0804474.

18. Ad Hoc Committee of Harvard Medical School, “Definition of Irreversible Coma,” 88 note 1, citing Pius XII, “The Prolongation of Life,” Address to an International Congress of Anesthesiologists (November 24, 1957), The Pope Speaks 4 (Spring 1958): 393–398.

19. Commissioners on Uniform State Laws, “Uniform Determination of Death Act,” sec 1.

Caring for Difficult People

As nurses, we have the privilege to get to know and help all kinds of people we might never have had a chance to meet otherwise on a very personal basis. Sometimes we care for them during some of the most stressful times in their lives.

Doctors and nurses are supposed to treat everyone according to the highest medical and ethical standards without regard to race, gender, socioeconomic status, nationality, etc. but, like everyone else, we can find some individuals particularly difficult.

One incident that changed my perspective on caring for difficult people happened many years ago when I was a young nurse.

I used to pride myself on keeping my cool in any tense situation until the day I almost lost it with a difficult patient.

A young man with drug addiction was admitted to our floor and he incessantly and loudly demanded more pain medication from all his doctors and nurses. No one could reason with him.

Then one day, he came up to me and screamed in my face. I couldn’t calm him and, despite my best intentions, I could feel my anger rise and my face turn red.

Suddenly, an unexpected thought flashed through my mind: “This is the face of Jesus!” At that moment, I was looking directly into this young man’s eyes and I felt a wave of empathy.

Although I did not say a word, the young man’s face suddenly changed and he stepped back almost as if he had been struck. He stopped yelling and started talking. In the end, he actually apologized for his behavior and admitted that he needed help. He was never verbally abusive to any of us after that.

I was stunned by this remarkable change and it changed my perspective. As I tell younger nurses now, it is usually easy to care for pleasant people but it is the difficult ones that need us the most and who often can teach us how to really respect every life.

Perhaps there is a lesson here not just for nurses but for everyone in this current climate of anger and division in our society: When we respect and recognize the intrinsic value in every human being, we really do have a chance to achieve a more just and peaceful society.

A Surprise Wedding Present

As most of you know, my daughter Marie died by suicide in 2009. I believe in an all merciful God who loves my daughter even more than I ever could. I trust in Him and I know that my Marie is with Him.

However, I knew that our whole family and especially Marie’s little sister Joy would especially miss her when Joy was planning her wedding this year.

I don’t usually pray for something personal except for help with more wisdom, patience, etc. but  Joy and Marie were especially close and Joy had been Marie’s maid of honor in 2005. The two of them even lived together for the last few months of Marie’s life.

When Joy was younger, the three of us would often talk about Joy’s possible future wedding  and Marie would tease Joy about probably becoming a” bridezilla”. Marie promised that she would personally keep her little sister in line if that happened.

So I knew that there could be a shadow over Joy’s happiness at her wedding and I prayed for a sign that Marie was at peace.

However, I was totally stunned when, the week before Joy’s wedding, a package came from Kentucky with a carefully wrapped, thirty year old letter inside. The package was from  Marie’s older but then close friend Stephanie who had moved away in 1983.

Stephanie wrote that she just happened to find a letter Marie had written to her at age 7 and had to send it to me. The letter was even typewritten! Who knew that Marie could figure out a typewriter?

The letter contained a lot of spelling mistakes but it was hilarious to read Marie’s description of her life at age 7. Marie even wrote down each family member’s age which told us how old she was at the time. (See photo: Marie’s letter at age 7 to Stephanie)

Marie wrote about how her older brother was nice and mean sometimes. Marie also wrote about her little sister Joy and how she ate a “dede” bug. All I could do was smile.

What a wonderful wedding present for Joy and all of us!  At the wedding, we all felt that Marie was there and celebrating with us.

As my late mother often used to say, “God is good!”

Here is the proof:

Joy and Chris wedding pic favorite

Joy and Chris May 21, 2016