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”.

I am glad you came!

Nancy Valko, RN ALNC

Is Compassion and Choices Aiming to Become the “Planned Parenthood” of Euthanasia?

With over $22 million in 2015 net assets,  a 4 star rating from Charity Navigator, enthusiastic media coverage and a new  Federal Policy Agenda for 2016 and Beyond” , Compassion and Choices increasingly appears to be following in the 4 star, politically and media supported, $1.3 billion dollar revenue ($528 million in government taxpayer funding) steps of the Planned Parenthood Federation of America.

While Compassion and Choices claims that it just “works to improve care and expand choice at the end of life”, it also admits that “We employ  educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals.” (Emphasis added)


Compassion and Choices has worked for decades not only to legalize physician-assisted suicide in every state but also to normalize and integrate physician-assisted suicide into medical practice and reaches out to established medical groups like the American Academy of Palliative and Hospice Medicine (AAPHM).

Currently, Oregon reports that 92.2% of its physician-assisted suicides were enrolled in hospice care and in Washington state,  93% of its assisted suicides “were assisted by an EOLWA (Compassion and Choices) volunteers”. 

Compassion and Choices also supports two other “legal” options for assisted suicide in states that haven’t passed physician-assisted suicide laws. One is “voluntary stopping of eating and drinking (VSED)” and the other is “palliative sedation-Sometimes called terminal sedation”. Significantly, the recommendations include the admission that “VSED includes pain and symptom management” and “Palliative sedation must be medically managed by a healthcare provider”. Thus the need to influence and train hospice and palliative care providers.

No wonder Compassion and Choices lists as one of its accomplishments that it:

Pioneered the medical model of aid in dying that helps ensure that doctors can ethically practice aid in dying in an open, legitimate and accessible way, and integrates the option into patients’ end-of-life care. The culmination of that work was the publication of clinical criteria in the Journal of Palliative Medicine in December 2015. (Emphasis added)

The first line of this article ““Clinical Criteria for Physician Aid in Dying” (their preferred name for physician-assisted suicide) is:

“More than 20 years ago, even before voters in Oregon had enacted the first aid in dying (AID) statute in the United States, Timothy Quill and colleagues proposed clinical criteria AID.”  (Emphasis added)

Timothy Quill, MD was the 2012 president and recipient of the Visionary award  of the American Academy of Palliative and Hospice Medicine. Dr. Quill also was the respondent in the 1997 US Supreme Court case Vacco v Quill arguing for physician-assisted suicide as a constitutional right. He lost unanimously then.

Now, Compassion & Choices’ website has a video presentation based on this article  titled  “Understand the Clinical Practice of Aid in Dying”  for doctors and other clinicians. The presentation even offers continuing medical education credits.

This would not be possible if the AAPHM had not changed its position on assisted suicide from opposition to “studied neutrality”, a position that the American Medical Association itself is now considering.


Compassion and Choices now has its “Federal Policy Agenda / 2016 & Beyond”.

The priorities on its agenda include:

Establish federal payment for palliative care consultations provided by trained palliative care professionals who will advocate for and support the values and choices of the patient….”  (Emphasis added)

Also included are “Professional Education and Development” training programs for doctors and other providers “in discussing terminal prognoses and death” and  “Policies and Payment Systems” to change medical policies and payments to a “a value-based healthcare payment system” that will “(e)ncourage Congress to direct CMS (the Centers for Medicare and Medicaid Services) and other federal agencies” to withhold   “appropriations or other funds”  for treatment that was “provided but (deemed) unwanted”.

This last provision reinforces the fear many healthcare providers already have that, if in doubt, it is safer not to treat a person rather than treat them in hope of a good result because of potential lawsuits or reimbursement problems.

Also a priority is “Public Education and Engagement”.  Compassion and Choices bemoans that one survey showed “22 percent of those aged 75 and older had neither written down nor talked to someone about their treatment preferences at the end of life.”

So naturally Compassion and Choices recommended strengthening the Centers for Medicare and Medicaid Services’ proposal to “reimburse doctors for communicating with patients about whether and how they would want to be kept alive if they become too sick to speak for themselves.”  This of course involves “living wills” and other advance directives that give people a list of some medical treatments or care to automatically refuse by a check mark. Unfortunately but tellingly, these directives include no explanation of the treatments themselves or their risks and benefits which is crucial for the informed consent or refusal required if the person was making the decision while fully conscious.


Compassion and Choices has been very involved in many legal cases about assisted suicide including the 1997 US Supreme Court’s Vacco v Quill decision finding no constitutional right to physician-assisted suicide. Undeterred, the organization continues to push for legalization of assisted suicide by fighting state by state while hoping for a possible future US Supreme Court decision that, like Canada’s in 2015, would legalize medically assisted suicide throughout the country.

In the meantime, if Compassion and Choices federal policy agenda is successful, they stand to benefit from a potential windfall of government taxpayer funding to provide their currently  “free consultation, planning resources, referrals and guidance”

As an article by Ashton Ellis has astutely observed ,

“The effort by pro-euthanasia group Compassion & Choices to use Brittany Maynard’s story to push physician-assisted suicide is part of a larger strategy. When talking about end-of-life issues, a strategically crafted frame points to only one logical conclusion: I’d rather be dead.”

Physician-assisted Suicide Laws: Real Safeguards? No. Discrimination. Yes!

Many years ago before the first physician-assisted suicide law was passed in Oregon, I was asked to see a patient I will call “Eleanor” who was on the oncology (cancer) unit where I worked.

Eleanor was larger than life even when she became ill with cancer in her 50s. Spirited and feisty with a wicked sense of humor, Eleanor regaled us doctors and nurses with her tales about her event-filled life. But over some months when her cancer treatments failed to cure her, Eleanor’s mood darkened and she told me of her plans to commit suicide either with a “doctor” like Jack Kevorkian or by her own hand. She was insistent that she die before she became mentally diminished or physically dependent on others. I notified the doctor and spent time talking with her.

With treatment and especially by addressing her fears and the ramifications of a suicide decision, I was elated when Eleanor changed not only her mind but also her attitude. Once she decided against suicide, she embraced life fully and with gusto. She eventually died comfortably and naturally.

However, after Eleanor changed her mind about suicide and mentioned me, her friends tracked me down and threatened to get me fired because I was unjustly “interfering with her right to die”. Instead of being happy or relieved for Eleanor, these friends were instead outraged that we took the usual measures we would take with anyone to prevent a suicide.

I was shocked then but I am not now, especially after physician-assisted suicide was legalized in some states and one of its’ victims,  the late Brittany Maynard, became a celebrity.


When a patient expresses thoughts of suicide, this is considered an emergency. As health care providers, we notify the doctors and an evaluation is done.

As the American Family Physician website states in Evaluation and Treatment of the Suicidal Patient:

“Important elements of the history that permit evaluation of the seriousness of suicidal ideation include the intent, plan, and means; the availability of social support; previous suicide attempts; and the presence of comorbid psychiatric illness or substance abuse. After intent has been established, inpatient and outpatient management should include ensuring patient safety and medical stabilization; activating support networks; and initiating therapy for psychiatric diseases. Care plans for patients with chronic suicidal ideation include these same steps, as well as referral for specialty care.” (Emphasis added)

However, physician-assisted suicide laws like Washington state’s “Death with Dignity Act” only  requires doctors to

 (e) Refer the patient for counseling if appropriate under RCW 70.245.060


If, in the opinion of the attending physician or the consulting physician, a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling.” (Emphasis added)

Not surprisingly, very few people are referred for counseling since assisted suicide activists and some others consider such suicides “rational”.


While it can be painful to the family (as I personally know), when suicide is determined to be the cause of death, it must be reported as such on the person’s   death certificate.

However, the Washington State assisted suicide law actually forbids doctors from listing  suicide or assisted suicide as the cause of death: “(2) The attending physician may sign the patient’s death certificate which shall list the underlying terminal disease as the cause of death.

There are even detailed “Instructions for Physicians and Other Medical Certifiers for Death Certificates: Compliance with the Death with Dignity Act”:

“If you know the decedent used the Death with Dignity Act, you must comply with the strict requirements of the law when completing the death record:

  1. The underlying terminal disease must be listed as the cause of death.
  2. The manner of death must be marked as “Natural.”
  3. The cause of death section may not contain any language that indicates that the Death with Dignity Act was used, such as:
  4. Suicide
  5. Assisted suicide
  6. Physician-assisted suicide
  7. Death with Dignity
  8. I-1000
  9. Mercy killing
  10. Euthanasia
  11. Secobarbital or Seconal
  12. Pentobarbital or Nembutal

The Washington State Registrar will reject any death certificate that does not properly adhere to the requirements of the Death with Dignity Act.1 If a death certificate contains any reference to actions that might indicate use of the act, the Local Registrar and Funeral Director will be instructed, under RCW 70.58.030, to obtain a correction from the medical certifier before a permit to proceed with disposition will be issued.”(Emphasis added)

This flies in the face of the 2003 CDC’s Medical Examiners’ and Coroners’ Handbook on Death Registration and Fetal Death Reporting that states:

“The death certificate is the source for State and national mortality statistics (figures 1–3) and is used to determine which medical conditions receive research and development funding, to set public health goals, and to measure health status at local, State, national, and international levels.” (Emphasis added)

The Handbook also gives the distinctions between manners of deaths:

Natural—‘‘due solely or nearly totally to disease and/or the aging process.’’

Suicide—‘‘results from an injury or poisoning as a result of an intentional, self-inflicted act committed to do self-harm or cause the death of one’s self.’’

Why were the activists and lawyers who wrote this law not challenged when it was written to actually require doctors to lie on a legal document and add yet another layer of secrecy?

Again, as I wrote in my previous blog “Why Should Physician-Assisted Suicide Laws Grant Special Privileges?” , legislatures and the public need to know and challenge these outrageous provisions as well as being informed about the personal and societal dangers of assisted suicide itself. We must demand truth, transparency and accountability, especially when life and death are at stake.

Why Should Physician-Assisted Suicide Laws Grant Special Privileges?

A May 2016 Gallup poll titled Euthanasia Still Acceptable to Solid Majority in US”   reports that now 69% of those surveyed agree that “doctors should be allowed by law to end a patient’s life by some painless means” if the person “has a disease that cannot be cured” and “if the patient and his or her family request it”.  (Emphasis added)

There is also reported  growing support among doctors  for medically assisted suicide.

This is alarming but should not be surprising in view of the intense and usually one-sided portrayal  of assisted suicide as “courageous” and honorable while unassisted death is routinely portrayed as agonizing to both the family and the patient.

However, there are few healthcare providers who actually want to personally participate in ending a life even when they say they support legalizing assisted suicide. This is one reason why Compassion and Choices, the former Hemlock Society, has been involved in most of the assisted suicides in Oregon and Washington.

The reluctance of most doctors and nurses to participate in assisted suicide has come about despite the unique and special protections given to healthcare providers who participate in medically assisted suicide that can actually encourage healthcare providers to participate without fear of legal consequences.

Note two of these provisions in the Oregon law :

“The Health Services shall make rules to facilitate the collection of information regarding compliance with ORS 127.800 to 127.897. Except as otherwise required by law, the information collected shall not be a public record and may not be made available for inspection by the public.” (Only an “an annual statistical report of information” is made public.) (Emphasis added.)


No person shall be subject to civil or criminal liability or professional disciplinary action for participating in good faith compliance with ORS 127.800 to 127.897. ” (Emphasis added.)

There is also no requirement that the doctor or anyone else witness or even be present at the lethal overdose.

But why are the activists and  lawyers who write these laws not challenged when they purposely omit  the stringent documentation and oversight required for any  other medical intervention by relying on doctors’ self-reporting the process  while also granting these doctors virtual immunity from any legal, civil or professional liability  for coercion, complications, abuse etc.?

One answer is that this allows the media and even doctors like Dr. Ezekiel Emanuel (one of the architects of Obamacare) to declare:

“Euthanasia and physician-assisted suicide are increasingly being legalized, remain relatively rare, and primarily involve patients with cancer. Existing data do not indicate widespread abuse of these practices.”  (Emphasis added)

The second answer is that these provisions allow assisted suicide doctors  (who obviously have more in common with the infamous Dr. Jack Kevorkian than the iconic Marcus Welby, MD of the 1970s)  to privatize the death and thus prevent any real investigation, followup or even serious medical research as well as allowing the coverup of any problems.

Apparently, nothing can be allowed to interfere with the carefully manufactured image of a kindly doctor helping a patient in excruciating pain to have a quick painless demise.

No other area of medical practice-even lethal injection execution-is allowed such secrecy and immunity.

Legislatures and the public need to know and challenge these outrageous provisions as well as being informed about the personal and societal dangers of assisted suicide itself. We must demand truth, transparency and accountability, especially when life and death are at stake.


Neutrality Kills

In 1994, Oregon became the first state to pass a physician-assisted suicide law. This came after the Oregon Medical Association changed its position from opposition to neutrality. 21 years later and after multiple failed attempts, the California state legislature approved the latest physician-assisted suicide law after the California Medical Association changed its opposition to neutrality.

The message sent-and received- was that if doctors themselves don’t strongly oppose physician-assisted suicide laws, why should the public?

Now the American Medical Association is set to reconsider changing its traditional opposition to assisted suicide to neutrality. This would be another, even more far-reaching disaster in terms of national impact.

For years, the euthanasia/assisted suicide activists of Compassion & Choices have successfully lobbied 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 at least take a “neutral” position.

As a former home health and hospice nurse, I am particularly outraged that the latest organization to crumble to Compassion & Choices is the Visiting Nurses Associations of America.

According to its website, Compassion & Choices says that the VNNA had Compassion & Choices as part of the their Public Policy Leadership Conference “where they discussed their federal agenda for 2016 and the important role that members of the VNAA play in end-of-life care.”

With millions of dollars from donors to advance its agenda, a supportive media that ignores dangerous facts, popular ethicists who change positions with the polls and a legal system that has helped to undermine protections for the medically vulnerable, it may seem that Compassion & Choices is getting closer to achieving its goal of forcing doctors and nurses to supply medically assisted death on demand.

For example, a 2014 survey of over 21,000 American and European doctors responding to an ethics survey conducted by Medscape (a password-protected website for medical professionals) showed that-for the first time-a majority of doctors polled supported assisted suicide.

However, here are a few ways any of us can help turn around this dire situation:


  •  Educate yourself on the facts and consider joining others to publicly oppose medically assisted suicide/euthanasia in our courts, legislatures and media outlets.
  • Demand that suicide prevention and treatment must be made available to all, not just the young and physically healthy.
  • Ask your health care professionals about their position on assisted suicide/euthanasia and support only health care providers who will not assist suicide or refer for it.
  • Discover and reach out to at risk individuals and their families who may be in your neighborhood or church. Loneliness and isolation can be debilitating.
  • Consider volunteering at a local nursing home or facility. Some churches have even started programs to encourage church members to visit one hour, once a week with one patient.

None of us can afford to be neutral- or silent-when it comes to this life or death issue.

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.


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)


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.


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


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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.


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?