Author: nancyvalko

Happy Thanksgiving!

nancyvalko faith, family

Today I give thanks  to God for all my family, friends and blessings.

We have had so many blessings this year, most especially the health of our grandson Liam who had a bone marrow transplant in 2013, almost a year after we lost his 6 year old brother Noah who also had the rare autoimmune disease called HLH. Liam’s regular checkups have just decreased to every 2 months and he is now predicted to have a normal lifespan!

I also give thanks for my wonderful husband Kevin and our wonderful now-grown children, one of whom is hosting Thanksgiving for the first time instead of me. Yea!

I hope you all have a wonderful Thanksgiving too!

 

LIVING WITH “LIVING WILLS”

nancyvalko advance directives, disability, end-of-life, euthanasia, food and water, futility

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.

Terror in Paris

nancyvalko culture, faith

My first inkling that Paris had been hit by terrorists in Paris was an alarm on my smartphone that signaled the breaking news. All throughout this weekend, my husband and I monitored the news on TV with growing horror.

The pictures of the carnage were devastating. Years ago, I worked in an ICU with trauma victims. That made me extremely sensitive to the bloody reality of violence and its’ effect on victims, families and society. I could never accept the idea of extreme violence as mere entertainment in movies, video games, etc.

My family’s thoughts and prayers today are especially with the people of France. We also pray that our leaders and society will totally commit to stopping terrorism everywhere.

Germany Legalizes Assisted Suicide-As Long As It Is “Free”

nancyvalko assisted suicide, euthanasia, medical ethics, nursing

While the UK Parliament overwhelmingly defeated a physician-assisted suicide bill in September 2015, less than two months later the German parliament has passed a law legalizing some assisted suicides. As Reuters News reported:

“The bill, which was upheld with 360 out of 602 votes, criminalizes organizations that assist patients in terminating their own lives for profit. It is meant to prevent the commercialization of the procedure as a “suicide business.”

However, single instances of suicide assistance – by a doctor or relative – do not contradict the new law. A husband who helps his terminally ill wife to die would not be prosecuted.

“Commercial” assisted suicide would be punished by up to three years imprisonment, even if doctors allegedly perform the procedure to relieve suffering.

Why Germany?

The law is a surprise to many, especially since Germany has long been sensitive to the issue of euthanasia following its’ history in World War II when the Nazis used the practice to kill over 200,000 people with mental and physical disabilities as well as millions of Holocaust victims.

Actually, the 1945 Hadamar Trial involving euthanasia by healthcare professionals at the Hadamar psychiatric clinic was the first mass atrocity trial in the US zone of Germany following World War II. As a nurse, I was particularly horrified when I first read about the famous study of the willing participation of nurses titled “Killing while caring: the nurses of Hadamar”

What can we expect?

Former Justice Minister Brigitte Zypries said the new German assisted suicide law “will open an era of great legal uncertainty” and will certainly be appealed to the Federal Constitutional Court.

But If efforts to stop the German law fail, the law will doubtless be expanded in the future as other countries in Europe have done.

Although ignored or dismissed in the US, the expansion and problems of euthanasia/assisted suicide in European countries like the Netherlands, Belgium, Luxembourg and Switzerland show the danger of first accepting a supposedly “limited” assisted suicide law.

For example, the Netherlands now uses lethal injections to dispatch infants with disabilities and adults of any age even without physical illness or consent. Belgium has done planned organ donation after euthanasia by lethal injection with the Ethics Committee of Eurotransplant even formulating recommendations for organ donation after euthanasia.  And Switzerland has a booming business with assisted suicide organizations like Exit and Dignitas even though a study showed that 16% of assisted suicide deaths in Switzerland are of people who have no underlying illness.

Conclusion

As the late Richard John Neuhaus wisely said ” I believe in the slippery slope the same way I believe in the Hudson River. It’s there.”

But until we are ready to recognize the potent logic about the disastrous and unintended consequences when we legalize “just a little bit” of legalized medical killing, we may find that the slippery slope has no bottom.

Physician-assisted Suicide: Nurses in the Line of Fire

nancyvalko assisted suicide, conscience rights, medical ethics, nursing

Years ago, the newly legalized Oregon physician-assisted suicide law caused much discussion at my St. Louis hospital. Some of my fellow nurses said that they supported such a law but when I asked them if they would participate, they were shocked. “No, of course, the doctor would have to do it!”, one exclaimed. Some nurses, like perhaps most people,  thought assisted suicide would only occur at a patient’s home with his or her family sitting with the patient watching the drinking of the lethal overdose.

I explained that in hospitals or hospices, would we expect the assisting doctors to be present when the patient ingested the lethal overdose, not to mention staying with the patient and family during the time it could take for the patient to die? My colleague agreed that nurses, not doctors, would probably bear the brunt of the “dirty work” of assisted suicide.

Back in 2000 and three years after Oregon legalized physician-assisted suicide, I saw an article from Nursing Spectrum magazine titled “Assisted Suicide: What Role for Nurses?” that stated:

Initially, when the law was designed, the assumption was that physicians would be the first ones to explore PAS with patients,” says Pam Matthews, RN, BSN, administrator for Evergreen Hospice, Albany, OR, “but in reality, nurses are usually the ones in the line of fire…. Much of nurses’ roles lies behind the scenes long before the drama of PAS unfolds. Home care and hospice nurses actively help patients understand their rights, acting as advocates for those who are considering PAS.” (emphasis added)

How many nurses are really willing to “advocate” for physician-assisted suicide? The article states:

“Before PAS became law, it was publicly debated, and we performed surveys of our hospice teams’ feelings on the issue,” Matthews says. “We found that most nurses felt strongly that patients should have the choice of PAS, although most said they would not participate in the event.” (emphasis added)

Recently, I spoke to a nurse in Washington State who is against physician-assisted suicide law about nurses’ experience with physician-assisted suicide in her state. She referred me to a 2014 study in the Journal of Pain and Symptom Management titled “Dignity, Death, and Dilemmas: A Study of Washington Hospices and Physician-Assisted Death”. (click on link and click PDF to read the full text)

While 21% of the Washington hospices in this study, mostly religiously-affiliated, refused any involvement in assisted suicide, this study sadly confirms the how legalization has affected both hospices’ and nurses’ role in assisted suicide.

Here are some excerpts:

First of all, the study notes that:

(T)he primary patient rights organization that facilitates arrangements for physician-assisted death, Compassion & Choices, refers terminally ill patients to hospice programs as a first resort for end-of-life caregiving. (emphasis added)
And admits that:
The authorizing legal statutes in both states (Oregon and Washington) make no reference to the experience of severe pain or intolerable suffering as an indication for a patient to make a request for physician-assisted death but rely entirely on the entitlement due a patient in respect of their personal dignity. (emphasis added)
However, the study rationalizes the upwards of 90% of physician-assisted suicide victims being enrolled in hospice:

The designation of a ‘‘physician’’ as the primary professional resource for patients allows hospice programs to maintain fidelity to the norm that ‘‘hospice neither prolongs nor hastens dying’’ (our emphasis). In short, although most patients who use the Death with Dignity rights are enrolled in hospice, hospice programs want to stress that this is a ‘‘physician-directed’’ process, not ‘‘hospice-assisted’’ death.” (emphasis added)

The study provides further dubious rationalization:

Although the phrase (“hastening death”) is descriptively accurate about what typically happens when a patient ingests the medication, describing the process in this manner appears to compromise a central hospice precept that dying or death is not to be hastened. It thus raises a broader question about an evolving hospice identity and integrity in which, in contrast to historical tradition and practice, hospice programs are willing to incorporate practices that hasten death. Insofar as several hospices in both Oregon and Washington have policies with respect to palliative sedation, in which pain relief is the primary goal even if death is hastened as a secondary consequence, it may be that some hospice programs could legitimately claim that the issue has already been resolved, and physician-assisted death is the moral equivalent for hospice of palliative sedation.” (emphasis added)

As far as allowing the hospice nurse to exercise his or her conscience rights:

In every circumstance in which personal, moral, or ethical values are cited as a basis for a caregiver to request they withdraw from being the responsible caregiver for a patient that makes a request, another staff member must be available to assure continuity of care and avoid violating the hospice value of non-abandonment.” Two traditional tenets of hospice philosophy-non-abandonment and refraining from ‘‘hastening death’’-remain prevalent values but create their own complications. (emphasis added)

One obvious complication is that it may not always be possible to find another nurse willing to be involved in the assisted suicide and if not enough willing nurses can be found, this “right” to withdraw may result in workplace discrimination against such nurses or even rejection of some potential hospice nurses before employment.

The article also cites a surprising reason, denied or unmentioned in news stories, for some hospice policies restricting nurses from actually attending the assisted suicide:

This may be particularly compelling in circumstances where the patient experiences complications with the medication (e.g., when the patient aspirates the medication), and some further medical treatment is needed by the patient for death to occur. In this context, the restriction on hospice staff presence serves as a further check against physician-assisted death becoming hospice-assisted death.
(emphasis added)

In the conclusion, the study refers to a 2011 Hastings Center Report by ethicist Bruce Jennings, MA:

Jennings contends that legalized physician-assisted death presents a defining moral choice for hospice identity because ‘‘legalization(of physician-assisted death) would liberate dying people from what hospice had been teaching could be a meaningful and valuable time of life. On the other hand, a major part of that quality of living while dying that hospice champions is autonomy, respect, and dignity. How could hospice stand against that?”  (emphasis added.)

For the sake of ourselves, our patients and our profession, how can we nurses NOT make a stand against physician-assisted suicide?

The “Miracle” of Dying (in hospice without food and water)

nancyvalko end-of-life, food and water, terninal/palliative sedation

Recently, a fellow nurse sent me an article she found disturbing titled “The miracle of dying” from the Los Angeles archdiocesan newspaper.

The article is ostensibly about the laudable goal of promoting emotional and spiritual healing for a dying person with comprehensive hospice and palliative care when cure is not possible.

Unfortunately, the article begins with the story told by Diane, dean of nursing at a Catholic university in California, about her father’s death. Diane’s frail, 99 year old father living in a Florida assisted living facility with no apparent life-threatening illness called her to say “I’ve outlived my usefulness. I’m ready to go”. When he decided to quit eating and drinking, Diane arranged for hospice care.

According to the article, it wasn’t long before the hospice nurse called back, saying it would take about 48 hours for her father to die and Diane took a flight to Florida to be there when he died.  The obvious impression left is that her father’s wish to stop eating and drinking was granted by the hospice.

Was Diane’s father evaluated physically and psychologically?  I have seen many elderly people who also felt their lives were useless successfully treated for depression as well as elderly people who had physical problems with eating regain their health with professional help. Why would we just send them to a hospice without exploring other options?

When I worked in hospice years ago, we would never have approved deliberate starvation and dehydration even at the patient’s request. We followed the trusted hospice philosophy that we neither hasten nor prolong the dying process. Unfortunately, we are seeing that ethical standard eroding to just honoring a patient’s “choice” to die. Ominously, state reports in Oregon, the first state to legalize physician-assisted suicide show that over 90% of reported physician-assisted suicide victims were enrolled in hospice.

Terminal Sedation

The rest of the article discusses death and California’s new physician-assisted suicide law with an ethicist and a doctor connected with Catholic health care institutions. While neither man supports the new California assisted suicide law, the comments by Roberto Dell’Oro, director of Loyola Marymount University’s Bioethics Institute are particularly alarming. Note this section from the article:

“For years, doctors have performed what’s known as “terminal sedation,” not to end somebody’s life but to make their patients more comfortable. Estimates of very seriously ill patients being terminally sedated have ranged from 2 to more than 50 percent. But the subject is rarely brought up in public.

One of the pillars it rests on goes back to the “double-effect” rule attributed to St. Thomas Aquinas in the 13th century, which justifies killing in times of war and for self-defense.

Regarding end-of-life matters, the principle posits that even when there’s a foreseeable bad outcome (death), it is morally acceptable if the intentional good outcome (relief of pain) outweighs it.

‘It’s a matter of stopping feeding and increasing pain medication that leaves you to die,’ explained Dell’Oro. ‘It’s not the practice of assisted suicide. Because the motivation, the intentionality of the physician remains the alleviation of pain, not the killing of the patient. That’s the fundamental difference.’ (emphasis added)

Unfortunately, this ethicist’s quote echoes Jack Kevorkian’s defense that he was just “relieving suffering” not mercy-killing his victims when he hooked them up to his death machine. There is a big difference between adequately treating pain even if that would diminish a person’s consciousness and deliberately rendering a person unconscious until death while withholding food and water. And now we have ethicists supporting terminal sedation for even “intractable emotional or spiritual anguish”.

COMPASSION AND CHOICES

Compassion and Choices is the pro-assisted suicide organization formerly known as The Hemlock Society and made famous by the Brittany Maynard physician-assisted suicide case. On its’ website, Compassion and Choices describes voluntary stopping of eating and drinking (VSED) and terminal sedation as good end of life options:

Voluntarily Stopping Eating and Drinking – When patients die naturally of chronic diseases, such as cancer, bodily changes take away their appetite, and they stop eating before they die. Some people decide to speed up the dying process by voluntarily stopping eating and drinking (VSED), which also relieves some of the symptoms common to dying. If a patient is already close to death, VSED usually leads to death in one to three weeks. Many people have used this method successfully….C&C believes hospice care is essential during VSED.” (Emphasis added)

In the case of terminal sedation which they call “palliative sedation”, it is described as:

Some dying patients experience so much pain or such unmanageable symptoms they cannot get relief from medications unless the dose is high enough to make them unconscious. Palliative sedation provides enough medication to keep the person unconscious and continuously pain and symptom-free. All nutrients and fluids are stopped, and the person usually dies within a few days. Patients using palliative sedation should be monitored around the clock to be sure the sedation is adequate. Intensive monitoring can be done at home under hospice care. (Emphasis added)

Of course, Compassion and Choices is working to legalize physician-assisted suicide throughout the US but, in the meantime, note that it endorses VSED (voluntary stopping of eating and drinking) and terminal sedation in hospice as a legal alternative.

When I was a hospice nurse in the mid-1990s, terminal sedation and withholding food and water were unthinkable.  We worked hard to make sure our terminally ill patients and their families had physical, emotional and spiritual support. It was gratifying to hear our patients and families tell us how meaningful and even healing the experience was. I even saw some dying people unexpectedly linger until an issue was resolved, a loved one came to the bedside or even until the family was ready.

When we try to just get death over with as soon as possible, we are really abandoning our dying patients and their families at  one of the most important and momentous events in their lives. We need to respect death not accelerate it.

Euthanasia Kits, Conscience rights and Coercion

nancyvalko assisted suicide, Canada, conscience rights, medical ethics

The country that gave us Celine Dion, Mike Myers and Joni Mitchell is now giving doctors euthanasia kits?

As I wrote in a September blog “Disaster in Canada”, this past February, the Canadian Supreme Court unanimously ruled to end the long-standing ban on physician-assisted suicide and gave federal and provincial governments 12 months to craft legislation to respond to the ruling. Despite concerns raised by opponents of assisted suicide, the Canadian supreme court agreed with the trial court that physician-assisted suicide laws like that in Oregon has curtailed such abuses and missteps. “The risks associated with physician-assisted suicide,” the high court stated, “can be limited through a carefully designed and monitored system of safeguards.”

But even before such legislation is made, Canada’s second largest province Quebec is jumping to allow to active euthanasia via lethal injections.

In a shocking article in the British Medical Journal titled “’Euthanasia kits’ are prepared for Quebec doctors as palliative care centres rebel on right to die” , new guidelines from the College of Medicine in Quebec on physician-assisted suicide include “euthanasia kits”. These kits contain three sequential injections: a benzodiazepine sedative to relieve anxiety, a barbiturate to induce coma, and a curare-type neuromuscular block to stop the heart and respiration with backup doses, and detailed instructions. These kits will be available to all licensed physicians in Quebec. (Emphasis added)

Ironically, this lethal injection protocol mimics the lethal injection protocols used in the US for executions that are now being challenged by groups like the ACLU as “cruel” and “inhumane.”

The rationale for doctor-administered lethal injections over the self-administered oral lethal overdoses just signed into law in California is explained in the BMJ article:

The college decided that doctors should administer the drugs intravenously rather than simply prescribe an oral drug. Yves Robert, secretary of the college, said that this had involved seeking advice from abroad, including speaking to the first doctor to legally prescribe life ending drugs in Oregon, USA, nearly 20 years ago. “He told us there were some bad side effects,” Robert said, including regurgitation and, in a few cases, reawakening days later.” (Emphasis added)

Apparently, the annual Oregon state health reports on assisted suicide that rely merely on the assisting doctors’ self-reporting of problems are not much of a “safeguard”. Nonetheless, all the public (and the Canadian supreme court) continues to hear is that physician-assisted suicide laws are working well without any problems.

PUSHBACK

But the existence of euthanasia kits is not the whole story.

As the BMJ article reports, all 29 of Quebec’s palliative care centers announced a collective decision not to offer physician-assisted suicide, now renamed “medical aid in dying.” At least for now.

One director stated that “There is no doctor here who’s willing to push that syringe.”

This refusal has apparently enraged physician-assisted suicide supporters like Gaétan Barrette, Quebec’s health minister, who stated:

“Once again, this is a comment that prioritizes the views of the physician, when the law is made for the patient,” said Barrette. “I have a very formal announcement to make to these doctors: physicians, nowhere in Quebec, are owners of the institution. Not of the institution, nor of the floor, nor of a single bed. In no way can a doctor say: ‘In room 326, this will never happen.’ That is completely inappropriate.”

So now there are now efforts to challenge the conscience rights of objecting doctors.

Euthanasia/assisted suicide supporters know that without enough medical professionals willing to perform medicalized killing, the movement itself is dead.

Unfortunately, such supporters have had better luck in the US with convincing groups like the California Medical Association, the American Public Health Association, The American College of Legal Medicine, American Medical Student Association and American Medical Women’s Association and The American Academy of Hospice and Palliative Medicine to support legalized physician-assisted suicide or take a “neutral” position using polls, not principles.

It is a myth that physician-assisted suicide will only ever involve oral lethal overdoses requested by terminally ill patients in unbearable pain. As we have seen with the relentless progression of medically assisted killing in Holland, Luxembourg, and Belgium, it is just a matter of time before lethal injections are considered more humane than unreliable oral overdoses and the pool of potential victims expands beyond the terminally ill and just those who request it.

Tragically, it is a very short step from saying “I would not want to live like that” to saying “No one should live like that.”

Like those doctors of conscience in Quebec, those of us in the US who are also medical professionals need to be our own Resistance Movement against medicalized killing and the efforts to coerce us into participating.

This is Down Syndrome Awareness Month

nancyvalko abortion, disability, medical ethics, prenatal testing

In 1982, I was appalled when I read about the Baby Doe controversy  in which the parents of a newborn boy with Down Syndrome refused a common but life-saving surgery,  leaving him to die of starvation and dehydration while lawyers were appealing his case to the US Supreme Court. Four months later,  I gave birth my third child, a beautiful little girl named Karen Ann who had Down Syndrome and a major heart defect. Picture of Karen’s homecoming.

.In 2000, I wrote an article about Karen.  I reprint it here in honor of my Karen and Down Syndrome Awareness month:

“Who Wants a “Defective” Baby?”

“Of course, no one wants to adopt a defective baby. ” This was said with much emotion (and not much charm) by an older gentleman in a class at a local university where I was speaking this past April. I had been invited to discuss the legalities and effects of Roe v. Wade from a pro-life point of view to a class of senior citizens studying the Constitution and the Supreme Court.

While several of these senior citizen students defended abortion as a matter of complete privacy for the mother, their arguments centered around the “need” for legalized abortion as a solution for social problems.

Since I had told the story of my daughter Karen, born in 1982 with Down Syndrome and a severe heart defect, the pro-abortion students were extremely vocal about the personal and societal justifications for aborting a baby like Karen. Hence the statement about no one wanting to adopt a “defective” baby.

“Happily, sir,” I told the senior student, “You are wrong. Even back when I had Karen, I found out from the National Down Syndrome Association that there was a list of people waiting to adopt a baby with Down Syndrome. Just the night before, I added, I had found a new website for matching prospective parents with children who had chromosomal and physical defects.

The student refused to believe that this could be true.

The effects of Roe v. Wade
Life of the mother, incest, rape and fetal defect are the four hard cases usually cited to justify what has now become abortion on demand. All of these are uncommon reasons given in the estimated 1.3 million abortions every year; but the possibility of having a child with a birth defect is a common fear nearly all expectant mothers experience and, not surprisingly, polls show that the majority of the public support abortion in this circumstance.

Although I have always been pro-life, I could understand the fear underlying these poll results. Then my own daughter was born.

Just two weeks before the birth of my daughter Karen, I saw a mother trying to pry her young son with Down Syndrome away from a display case at the supermarket. She looked exhausted.

“Please, Lord,” I silently prayed, “Let this baby be ok. I can handle anything but Down’s.”

When Karen was born with Down Syndrome, I was stunned. But I was quickly put in touch with mothers from the Down Syndrome Association who replaced my fears with information and realistic hope.

Then a doctor told me the truly bad news. Karen had a heart defect, one so severe that it seemed inoperable and she was not expected to live more than 2 months. That certainly put things in the proper perspective.

What “pro-choice” really means
It turned out later that Karen’s heart defect was not quite as bad as originally thought and could be corrected with one open-heart surgery, but I was shocked when the cardiologist told me he would support me 100% if I decided not to agree to the surgery and allow her to die. This was especially hard to hear because, as a nurse, I knew that the doctor would have been otherwise enthusiastic about an operation offering a 90% chance of success — if my child didn’t also have Down Syndrome. Apparently, even though Karen was now a legal person according to Roe v. Wade by the fact of her birth, this non-treatment “option” could act as a kind of 4th trimester abortion.

It was then that I realized what pro-choice really meant: Choice says it doesn’t really matter if a particular child lives or dies. Choice says the only thing that really matters is how I feel about this child and my circumstances. I may be “Woman Hear Me Roar” in other areas according to the militant feminists, but I was not necessarily strong enough for a child like this.

I also finally figured out that Roe v. Wade’s effects went far beyond the proverbial desperate woman determined to end her pregnancy either legally or illegally. The abortion mentality had so corrupted society that it even endangered children like my Karen after birth. Too many people, like the student in Supreme Court class, unfortunately viewed Karen as a tragedy to be prevented.

Medical progress or search and destroy?
In the late 1950s, a picture of the unborn baby using sound waves became the first technique developed to provide a window to the womb. Ultrasound in recent years has been used to save countless lives by showing women that they were carrying a living human being rather than the clump of cells often referred to in abortion clinics.

But while expectant parents now routinely and proudly show ultrasound pictures of their developing baby, there is a darker side to prenatal testing. Besides ultrasound, which can show some birth defects, blood tests like AFP testing and the Triple Screen to test for neural tube defects or Down Syndrome are now becoming a routine part of prenatal care. Amniocentesis and chorionic villus sampling are also widely available tests to detect problems in the developing baby. It seems that every year, new testing techniques are tried and older ones refined in the quest to find birth defects prenatally.

97% of the time, women receive the good news that their baby seems fine; but the tests are not foolproof, and they can only test for hundreds of the thousands of known birth defects. Relatively few such birth defects can be treated in the womb at the present time. Some women want testing so that they can prepare for a child who has a birth defect, but when the tests do show a possible problem like Down Syndrome, up to 90% of women will abort.

While some hail prenatal testing as a way to prevent birth defects, the effects of such testing has led to what author Barbara Katz Rothman calls the “tentative pregnancy” in her 1993 book of the same name. Although Rothman calls herself pro-choice, her studies of women considering amniocentesis led to her conclusion that such testing has changed the normal maternal-child bonding in pregnancy and the experience of motherhood, usually for the worse.

“I might not be pregnant”
I observed this firsthand several years ago when I ran into an acquaintance and congratulated her on her obvious pregnancy. I was stunned when she replied, “Don’t congratulate me yet. I might not be pregnant.”

“Diane”, the mother of a 5-year-old boy, went on to explain that she was awaiting the results of an amniocentesis and said, “I know what you went through with your daughter but I can’t give up my life like that. If this (the baby) is Down’s, it’s gone.”

I reassured her that the test would almost surely show that her baby was ok, but I added that if the results were not what she expected I would like her to call me. I promised that I would give her any help she needed throughout the pregnancy and that my husband and I or even another couple would be willing to adopt her baby. She was surprised, as I later found out, both by my reaction and the information about adoption.

Diane gave birth to a healthy baby girl a few months later and apologized for her comments, saying that she probably would not have had an abortion anyway. But I understood her terrible anxiety. Society itself seems to have a rather schizophrenic attitude towards children with disabilities.

On one hand, people are inspired by the stories of people who have disabilities and support organizations like the Special Olympics; but, on the other hand, many people consider it almost irresponsible to bring a child with disabilities into the world to suffer when prenatal testing and abortion are so available.

But as the vast majority of parents who are either natural or adoptive parents of children with disabilities will attest, all children are born with both special gifts and special limitations. No child should be denied birth because of a disability or even a limited life expectancy.

Women who do abort after a diagnosis of a birth defect are also hurt. Besides depriving themselves of the special joys — which occur along with the difficulties — of loving and caring for such a child, these women often experience unresolved grief, guilt and second-guessing instead of the relief and peace they expect.

A few years ago, a local hospital which performs late-term abortions for birth defects asked a miscarriage and stillbirth counseling group to help with their distressed patients. The group declined, citing the fact that the most reassuring message they give grieving mothers is that there is nothing they did or didn’t do that caused the death of their babies. Obviously, that was not a statement they could make to mothers who abort. There is a very real difference between losing and terminating a child.

How many of these mothers knew before their abortions that, in practical terms, there has never been a better array of services and support for children with disabilities and their parents? Or that their children were dearly wanted by prospective adoptive parents? Such information might have been just the support they needed to choose life for their children.

Final thoughts
Despite the best medical care, my Karen died at the age of 5 and 1/2 months, but the impact of her life has lived on. At her funeral Mass, the priest talked about how this child who never walked or talked had transformed the lives of those who met her.

Especially mine.

After Karen died, I sat down and tried to put into words what Karen and all children with disabilities have to teach the rest of us. The following reflection was published in the National Down Syndrome Association newsletter in May, 1984.

THINGS NO TEACHER EVER TAUGHT
In 1982 my daughter, Karen, was born with Down Syndrome and a severe heart defect. Less than six months later she died of complications of pneumonia. Karen may have been retarded but she taught me things no teacher ever did.

Karen taught me:

That life isn’t fair — to anyone. That self-pity can be an incapacitating disease. That God is better at directing my life than I am. That there are more caring people in the world than I knew. That Down Syndrome is an inadequate description of a person. That I am not “perfect” either, just human. That asking for help and support is not a sign of weakness. That every child is truly a gift from God. That joy and pain can be equally deep. That you can never lose when you love. That every crisis contains opportunity for growth. That sometimes the victory is in trying rather than succeeding. That every person has a special purpose in life.

That I needed to worry less and celebrate more.

Why California’s Governor Brown is Wrong About Physician-assisted Suicide For “Excruciating Pain”

nancyvalko assisted suicide, medical ethics, palliative care

When California Governor Jerry Brown signed the physician-assisted suicide law, he wrote

“In the end, I was left to reflect on what I would want in the face of my own death,” the governor wrote. “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

Gov. Brown apparently believes the two myths promulgated by pro-assisted suicide organizations and most mainstream media about physician-assisted suicide: 1. Unbearable pain is routine in terminal illnesses and often cannot be relieved. 2. Unbearable pain is the reason people choose physician-assisted suicide.

As a former hospice, oncology, trauma, and critical care nurse, I made sure my patients had the best pain control possible after one unforgettable incident that happened shortly after I graduated from nursing school.

In 1969, I cared for a 32-year old woman I will call “Joan” who was dying from cancer. Joan looked emaciated with her skin  stretching over her bones and she was in terrible pain. Joan’s pain was so intense at times that she even talked about wanting us to kill her. At the time she was on a relatively small dose of Demerol given by an intramuscular shot every 4 hours as needed for pain.

I gave her the shot, wincing as I injected it into her shrunken buttock but the shot did nothing for her pain. I went to my head nurse who said to repeat the injection in four hours but  “Joan” continued to have intense pain.

I reported this to my head nurse and Joan’s doctor, suggesting that the dose be increased and/or given more often. The doctor told me no because he said he did not want her to “become addicted” to pain meds. I couldn’t believe my ears. I told him that she was imminently dying, even asking us about killing her to relieve the pain. Joan didn’t have to worry about addiction. I knew that from nursing school. The doctor still refused.

I went over his head to the chief of staff and the assistant director of nursing to plead for Joan. Instead, I was told that if I gave Joan her shot even 15 minutes earlier than the 4 hours, I would be fired.

I was frustrated to the point of tears but I knew there was one thing I could do.

I spent the last two days of Joan’s life with her as much as possible while working my shifts. After my shifts, I would sit with her for hours telling her stories, stroking her back, and doing whatever I could to distract her from the pain until she finally fell asleep. I would not abandon her.

After Joan died, I decided to learn everything I could about pain relief so that I could rebut a future ignorant doctor and help my patients. And I did. I studied every article on pain relief that I could find and talked to experts in the field as well as experienced colleagues. I’m still doing this 46 years later.

I never again had a patient die with severe pain.

For example and 20 years later, I started working on an oncology (cancer) floor in honor of my mother who I cared for until she died  from cancer and Alzheimer’s disease. As I promised my father, I made sure she was comfortable and Mom was even alert and in good spirits at the end.

I loved my new job in oncology but one day I came in hearing a woman down the hall screaming. That was unusual on our floor. It turned out that this woman I’ll call “Kim” was also a 32-year old woman with terminal cancer.

Kim’s pain had been under good control at home with long-acting morphine pills supplemented with fast acting morphine pills to relieve breakthrough pain. However, her family mistakenly thought that since her pain was relieved, she did not need to take her long-acting pills. Kim agreed but the result over a short time was terrible pain unrelieved by slowly increasing a morphine drip.

Working with the doctor, I came up with an overnight game plan to aggressively and quickly treat her extreme pain. The doctor agreed after I promised to monitor Kim closely so that her breathing would not be compromised.

By the next morning, Kim’s pain was finally under control and shortly afterward, she was able to be discharged home on her usual medication regimen.

Governor Brown, using pain as a reason to enlist doctors and nurses to help patients kill themselves is perverse not only because pain can be controlled, especially with the medical advances we have today but also because Oregon’s own report shows that physician-assisted suicide victims in Oregon cited “Losing autonomy”, “Less able to engage in activities making life enjoyable”, “Loss of dignity”,“ Losing control of bodily functions” and “Burden on family, friends/caregivers” before “Inadequate pain control or concern about it” as the top end of life concerns.

Personally, I will continue to fight for good pain and symptom control for all patients as passionately as I oppose physician-assisted suicide.

CALIFORNIA GOVERNOR SIGNS ASSISTED SUICIDE BILL AND MY 1996 ARTICLE “NO BLANK BULLETS”

nancyvalko assisted suicide, conscience rights, euthanasia, medical ethics

USA Today article: Calif. governor signs assisted suicide bill

Comment: Note the quote about why Governor Brown signed this bill after it was defeated 4 times in committee with weeks of deliberation: “In the end, I was left to reflect on what I would want in the face of my own death,” the governor wrote. “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

Unfortunately, it seems too many people base their judgements about physician-assisted suicide based on possible future self-interest rather than what the bill allows-medicalized killing by suicide-instead of the terrible consequences on people at risk, medical ethics and society.

Almost 20 years ago and before Oregon implemented its physician-assisted suicide law, I wrote the following commentary for the January-March 1996 edition of the Patients Rights Council newsletter. I believe it is just as valid today.

No Blank Bullets

Ready… aim… fire!

All the B-movie scenes I watched as a child flashed through my mind when I heard that a convicted murderer had been recently executed by firing squad. My visceral reaction was to cringe, instantly imagining the terror of being blindfolded and waiting for the bullets to hit. What I couldn’t imagine, though, were the feelings of being one of the men called to pick up and aim a piece of cold, hard steel at another human being. Would the man cope by pretending it was just another round of target practice? Would he try to remember the details of the murders and the tears of the victims’ families to muster the outrage that such crimes call for? What did he feel after the execution — sadness or satisfaction?

I was not surprised to later learn that one of the firing squad guns contained only blank bullets. In such circumstances, it is sensible to protect each executioner from the certain knowledge that he personally ended another’s life. In the more common lethal injection executions, the process is said to include at least two people and two buttons to start the process. Again, the procedure for legally terminating another life tries to protect those whom society asks to perform the awful task.

It is ironic, therefore, that society is considering the addition of yet another kind of execution to the legal list — assisted suicide — but this time without the blank bullets.

Few people would seriously consider legalizing relative– or family-assisted suicide. The inherent dangers of this type of private killing are much too obvious. Thus, the goal must be physician-assisted suicide or, more accurately, health care professional-assisted suicide, since nurses also must necessarily be involved when the assisted suicide occurs in a health facility or home health situation. We doctors and nurses are the ones society is now considering asking to perform the act of terminating lives, but unlike the firing squad or the lethal injection team, we will know and have to live with the certain knowledge that we caused death.

It is doubly ironic that when a convicted murderer tries to discourage efforts by lawyers to stop his or her execution, this is considered as a sign of stress or mental disorder, while a sick person’s willingness to die is considered an understandable and even courageous decision! How do we reconcile the two views that killing is the ultimate punishment for a convicted murderer and, at the same time, the ultimate blessing for an innocent dying or disabled person?

Both the American Medical Association and the American Nurses Association have recently issued strong statements against assisted suicide and euthanasia. While acknowledging the very real deficiencies too often found in care at the end of life, these organizations call for more education and access to help instead of the simple but dangerous option of killing terminally-ill or severely-disabled people or helping such people kill themselves. It is eminently logical that our concern for life should not be limited to just the curable.

And, although some polls show that a significant number of doctors and nurses, like the general public, say they could support assisted suicide in a hypothetical case, when faced with the realities and ramifications of legalizing the practice, most express deep concerns and fears regarding its implementation.

Society has long insisted that health care professionals adhere to the highest standards of ethics as a form of protection for society. The vulnerability of a sick person and the inability of society to monitor every health care decision or action are powerful motivators to enforce such standards. For thousands of years doctors (and nurses) have embraced the Hippocratic standard that “I will give no deadly medicine to any one, nor suggest any such counsel.” Should the bright line doctors and nurses themselves have drawn to separate killing from caring now be erased by legislators or judges?

As a nurse, I am willing to do anything for my patients — except kill them. In my work with the terminally ill, I have been struck by how rarely these people say something like, “I want to end my life.” And the few who do express such thoughts are visibly relieved when their concerns and fears are addressed and dealt with instead of finding support for the suicide option. I have yet to see such a patient go on to commit suicide.

This should not be surprising. Think about it. All of us have had at least fleeting thoughts of suicide in a time of crisis. Imagine how we would feel if we confided this to a close friend or relative who replied, “You’re right. I can’t see any other way out either.” Would we consider this reply as compassionate or, instead, desperately discouraging? The terminally-ill or disabled person is no different from the rest of us in this respect.

I often wonder if right-to-die supporters really expect us doctors and nurses to be able to assist the suicide of one patient and then go on to care for a similar patient who wants to live without this having an effect on our ethics or our empathy. Do they really want to risk more Jack Kevorkians setting their own standards of who should live and who should die?

The excuse that the only real issue is the patient’s choice would be cold comfort to us doctors and nurses when we have to go home and face the fact that we helped kill another human being or had to remain silently powerless while some of us legally participated. There will be no blank bullets then for us — or for society.