How the New “Palliative Care and Hospice Education and Training Act” Could Threaten Conscience Rights.

Two weeks ago, I wrote about the new Senate Bill 693 titled the “Palliative Care and Hospice Education and Training Act” (now referred to the Committee on Health, Education, Labor, and Pensions) and warned about the current and future involvement of Compassion and Choices (the former Hemlock Society now pushing for legalizing physician-assisted suicide throughout the US) in “end of life” education for healthcare professionals. But Compassion and Choices is not the only organization supporting practices that, until the last few decades, were universally condemned.  For example, last year the American Nurses Association took a position approving VSED (voluntary stopping of eating and drinking) to hasten death  and that those decisions “will be honored” by nurses.

In addition, this year the American Medical Association House of Delegates rejected the AMA’s Council on Ethical and Judicial Affairs (CEJA) report recommending that the AMA continue its long standing policy opposing physician assisted suicide. Instead the delegates “voted 314-243 to refer the matter back to the trustees for further deliberation”.

Unfortunately, Senate Bill 693 does not contain any requirement of conscience rights protection in allocating grants to groups proposing to expand hospice and palliative care education programs for healthcare professionals.

BIOETHICS AND CONSCIENCE RIGHTS

According to Dr. Edmund Pellegrino, writing on the origin and evolution of ethics in 1999 for the Kennedy Institute of Ethics :

“In the 1960s and 1970s, building upon liberal theory and procedural justice, much of the discourse of medical ethics went through a dramatic shift and largely reconfigured itself into bioethics.”

Instead of the old Hippocratic Oath principles requiring high ethical and moral standards for doctors including prohibitions against actions such as assisting a suicide, bioethics has evolved into essentially four principles: Respect for autonomy (the patient’s right to choose or refuse treatment), Beneficence (acting in the best interest of the patient), Non-maleficence (not causing harm) and Justice (fairness, equality and distributive justice “so that the needs of the entire population are taken into account.” ) which often compete in actual medical situations.

Unfortunately, the principles of the new bioethics do not address the issue of conscience, which has now become a contentious issue in bioethics.

For example at the 2018 AMA meeting where the House of Delegates voted not to accept the Committee on Ethical and Judicial Affairs report’s recommendation to continue the AMA’s opposition to physician-assisted suicide, one doctor responded:

“We feel the AMA abandoned all physicians who, through conscience beliefs, want to support patients with this in states where it’s legal,” said Lynn Parry, MD, a Colorado delegate, on behalf of the PacWest group, which includes AMA delegates from six Western states that have legalized physician aid-in-dying. “I personally think we need to protect physicians in those states and would ask for referral back.” (Emphasis added)

Dr. Ezekiel J Emanuel, MD, PhD, an influential physician who was one of the architects of Obama care and a formerly strong opponent of assisted suicide, wrote in a 2017 New England Journal of Medicine article “Physicians, Not Conscripts — Conscientious Objection in Health Care” that:

“ Conscientious  objection  still  requires  conveying  accurate  information  and  providing  timely  referrals to ensure patients receive care.

……

“Health care professionals who are unwilling to accept these limits (on conscience rights) have two choices: select an area of medicine, such as radiology, that will not put them in situations that conflict with their personal morality or, if there is no such area, leave the profession.

……

“Laws may allow physicians, nurses, pharmacists, and other health care workers to deny patients treatment or to refuse to care for particular populations, but professional medical associations should insist that doing so is unethical.” (All emphasis added)

CONCLUSION

When it comes to issues like withdrawing feeding tubes from so-called “vegetative”  patients, terminal sedation to hasten death and physician-assisted suicide, this last point from Dr. Emanuel leaves those of us physicians and nurses who refuse to kill our patients or help them kill themselves with few options to continue in our professions.

Years ago when I was threatened with firing for refusing to increase a morphine drip on a comatose man who was removed from a ventilator but still continued breathing, I was told that this was acceptable “end of life” care to “prevent pain”.  I know one nurse who was fired for refusing to give morphine every hour to a dying patient in no distress and barely breathing because the family demanded it. I’ve heard from families who were automatically offered hospice instead of rehab when their loved one was elderly and injured.

When such outrages occur even outside of formal hospice or palliative care programs and considered “normal” end of life care, ethical healthcare professionals find no recourse through their professional organizations or the law to protect their patients from premature death.

Thus when healthcare legislation like SB 693 promotes giving grants to organizations who support or might support VSED, assisted suicide, etc. to train healthcare professionals in hospice and palliative care without clear conscience rights protection, both healthcare professionals and the public are at risk of a normalized culture of premature death.

 

Beware the New “Palliative Care and Hospice Education and Training Act”

Right now, there is a Senate Bill 693 titled “The Palliative Care and Hospice Education and Training Act” to authorize more and better training in palliative and hospice care. Although a provision (SEC. 6. Clarification) was recently added to explicitly forbid federal funding for any health care furnished for the purpose of causing or assisting the death of any individual by assisted suicide, euthanasia or mercy killing, many of us have serious concerns. (The similar House Bill 1676 has already passed and sent to the Senate.)

As an RN with decades of nursing experience in hospice, oncology (cancer) and critical care, I have been involved with many end-of-life situations. I am an enthusiastic supporter of ethical palliative and hospice care which is indeed wonderful for patients of any age and their families.

Unfortunately, there is a growing trend towards calling unethical practices “palliative” or “hospice” care.

For example and just a few years ago in a Catholic hospital, I saw a nurse/friend’s life deliberately ended due to so-called palliative and hospice care labeled “comfort care.” She had recently suffered a serious brain injury and was declared hopeless after a couple of weeks. The family was strongly pushed to switch to “comfort care”.  She was taken off a ventilator, had her feeding tube removed (against her adult son’s wishes), and continued to receive the sedation medications used when she was on the ventilator, even receiving an increase in those medications when she continued to breathe on her own. Despite my friend’s son insisting that he wanted the feeding tube replaced and that he wanted to eventually care for his mother at home whatever her level of functioning was, he was told to wait until a doctor could order the feeding tube replaced. The hospital waited until he went home to sleep, transferred her to the hospice unit without his permission and she was dead by morning.

Unfortunately, similar stories have become increasingly more common since the 1970s when the Euthanasia Society of America changed its name to the Society for the Right to Die and promoted the new “living wills”. Now we have well-funded groups like Compassion and Choices (the former Hemlock Society) not only promoting physician-assisted suicide but also trying to change medical ethics from never deliberately causing or hastening death to merely a “choice” about when and how to die.

Two years ago in my blog “Is Compassion and Choices aiming to become the “Planned Parenthood” of Euthanasia?, I warned about the current and future involvement of Compassion and Choices in “end of life” education.

Here are some excerpts:

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)

……….

THE PALLIATIVE AND HOSPICE CONNECTION

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.

………..

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 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.

………..

WHERE THE MONEY AND POWER IS

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 him or her in hope of a good result because of potential lawsuits or reimbursement problems.

………

In the meantime, if the 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”.

CONCLUSION

I have already contacted my state senator to express my concerns and urged him to vote “no” on SB 693.

As Nancy Elliot, chair of the Euthanasia Prevention Council USA, ended in a great letter to Senators opposing the Palliative Care and Hospice Education and Training  Act :

“instead of creating a rival form of palliative care…Wouldn’t it be better to educate/update all physicians and nurses about pain and symptom management?”

Journal of the American Medical Association Article Calls Crisis Pregnancy Centers “Legal but Unethical”

When I first started nursing school, abortion was illegal in all 50 states and the American Medical Association (AMA) was influential and widely admired.

But, as cited and influential in the Roe v Wade decision in 1973, the AMA dropped its’ opposition to abortion in 1970  after a few states legalized abortion with resolutions  that stated:

“abortion is a medical procedure that should be performed by a licensed physician in an accredited hospital only after consultation with two other physicians and in conformity with state law, and that no party to the procedure should be required to violate personally held moral principles”.

I remember how upset many doctors were with the AMA after Roe v Wade and many dropped out of the AMA.

Now, there are over one million MDs in the US  but less than 25% of practicing doctors are members of the AMA, down from 75% in the 1950s. (This is not just because of abortion but also the politics of the AMA.)

The AMA today now stands firmly for abortion rights and even against common sense conscience rights protection.

“AT ‘CRISIS PREGNANCY CENTERS’, CRITICS SAY, IDEOLOGY TRUMPS EVIDENCE”

This is the title of a July 18, 2018 article in the Journal of the American Medical Association by Rita Rubin, MA excoriating crisis pregnancy centers (CPCs) as “legal but unethical”.

Among the allegedly “unethical” practices the article cites are that CPCs “don’t prescribe or provide birth control” and “dispense misleading information-sometimes mandated by the state-about disproved or exaggerated harms associated with abortion, including increased risk of breast cancer, depression and infertility”. The article also criticizes the free ultrasounds as “medically unnecessary” and “emotional manipulation”.

But, according to the article, the biggest ethical problem seems to be “withholding information” about obtaining abortions.

The article cites California as the first state to pass a crisis pregnancy mandatory disclosure law that mandates CPCs to “post or distribute a notice about California’s public programs that provide free or low-cost contraception, prenatal care, and abortion“.(Emphasis added)

The article criticizes the June 26, 2018, the US Supreme Court’s National Institute of Family and Life Advocates v. Becerra decision that struck down the California law as likely unconstitutional.

The JAMA article also decries a recent Health and Human Services’ announcement that Title X family planning services grants includes “natural family planning methods” and that faith-based organizations are eligible to apply for such grants.

THE REAL FACTS ABOUT CRISIS PREGNANCY CENTERS

As even the JAMA article admits, there are more than 3500 CPCs in the US, more than twice the number of US institutions that performed at least 1 abortion in 2014 according to the pro-abortion Guttmacher Institute. That is a decline of 3% between 2011 and 2014.

Obviously, crisis pregnancy centers are seen as threatening to the pro-abortion movement.

As CPC volunteer Patty Knap observed in her blog The Real Reason Crisis Pregnancy Centers Must Always be Free”,  “The difference between an abortion center and a pro-life pregnancy center is like day and night. Or life and death.”

Ms. Knap observes that, unlike an abortion clinic that charges for everything, CPCs don’t charge for anything-including pregnancy tests. Instead, Ms. Knap says, “Every pregnancy center in the country is constantly fundraising”.

Ms. Knap says offering their services without charge is necessary because the trust factor is so important. When their clients understand the motivation of someone who isn’t profiting from the decision they are making, they are more likely to accept the truth and real help.

CONCLUSION

Just as outrageous as California’s attempt to compel crisis pregnancy centers to advertise abortion is that so many mainstream media outlets continue to ignore or disparage the ongoing efforts of the pro-life movement to offer desperate women a loving opportunity for them and their unborn babies.

We may sometimes wonder if attending fundraising baby showers in our churches, picketing abortion clinics with telephone numbers for help, donating to Birthright, etc.  is really accomplishing much. But, as the successes of CPCs show, even the smallest effort by a great number of people can produce the awesome result of helping distressed mothers and saving their babies’ lives.

Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover

People with severe brain injuries from accidents, strokes, illness, etc. are often in comas at first. If they don’t die or spontaneously wake up, they can progress to a “persistent vegetative state” (PVS) described as “awake but unaware” and/or a “minimally conscious state” (MCS) described as definite, but extremely limited, awareness of self or environment, and limited means of communication. People with these conditions have had court battles over removing their feeding tubes such as the 1988 Nancy Cruzan (PVS) and the 2001 Robert Wendland (MCS) right to die” cases.

Now, an August 9, 2018 Medscape article “New Guideline for Minimally Conscious, Vegetative States Released”  reveals that 3 specialty societies including the American Academy of Neurology have just published a new guideline with 15 recommendations for “accurate diagnosis, prognosis and treatment for these conditions”.

The reason for the new guidelines, according to Dr. Joseph Giacino, who was one of the authors of the study, is because:

“Misdiagnosis of  DoC (“disorders of consciousness”) is common because underlying impairments can mask awareness — in fact, there is a 40% rate of misdiagnosis, leading to inappropriate care decisions as well as poor health outcomes.” (Emphasis added)

The 223 page new guideline titled Practice guideline update: Disorders of consciousness” states that:

 “Clinicians should refer patients with DoC (disorders of consciousness) who have achieved medical stability to settings staffed by multidisciplinary rehabilitation teams with specialized training to optimize diagnostic evaluation, prognostication, and subsequent management, including effective medical monitoring and rehabilitative care.”

and

When discussing prognosis with caregivers of patients with DoC (disorders of consciousness) during the first 28 days after injury, avoid statements suggesting that these patents “have a universally poor prognosis”. (All emphasis added)

According to Dr. Giacino, “Approximately 20% of individuals who have disturbance in consciousness from trauma regain functional independence between 2 and 5 years post-injury, even though they may not return to work or pretrauma functioning.” (Emphasis added)

The study also cites the drug amantadine and brain imaging showing that the brain can still respond normally to stimulus even though the person seems unaware as potentially helpful.

What about the “right to die” for these people? Ominously, the guideline does mention 1 study found that hospital mortality was 31.7%, with 70.2% of those deaths associated with the withdrawal of life-sustaining therapy”. (Emphasis added)

IS THE “40% MISDIAGNOSIS” RATE REALLY NEWS?

Doctors like Dr. Keith Andrews of the UK and US doctor Mihai Dimancescu published  medical journal articles  in the 1990s showing that around 40% of patients in a so-called “persistent vegetative state” were misdiagnosed.  And in 1987, the Royal Hospital for Neuro-Disability in the UK opened a “vegetative state” unit and later developed the “Sensory Modality Assessment and Rehabilitation Technique (SMART)” as a clinical tool for the assessment and rehabilitation of people with disorders of consciousness following severe brain injury.

Despite this, most media stories about cases like Terri Schiavo’s and “right to die”/assisted suicide groups continued to insist that “PVS” is a hopeless condition for which everyone should sign a “living will” to ensure that food and water is withheld or withdrawn to “allow” death.

This happened despite articles like the New York Times’ 1982 article “Coming Out of Coma”.  about the unexpected return of consciousness of Sgt. David Mack over a year after the famous “right to die” neurologist Dr. Ron Cranford  predicted ”He will never be aware of his condition nor resume any degree of meaningful voluntary conscious interaction with his family or friends” before. (Emphasis added)

There have also been articles about people like Terry Wallis who in 2003 regained consciousness after 19 years in a “minimally conscious” state. Unfortunately, such cases were often explained away as just “misdiagnosis” or a “miracle”.

MY EXPERIENCE

Just before Drs. Jennet and Plum invented the term “persistent vegetative state” in 1972,  I started working with these many comatose patients as a young ICU nurse. Despite the skepticism of my colleagues, I talked to these patients as if they were awake because I believed it was worth doing it for the patient if hearing is truly the last sense to go. Because of this, I unexpectedly saw some amazing recoveries and one patient later  told me that he would only respond to me at first and refused to respond to the doctor because he was angry when heard the doctor call him a “vegetable” when the doctor assumed the patient was comatose.

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

CONCLUSION

It is good news that the American Academy of Neurology and other groups are finally rethinking their approach to people with severe brain injuries, especially the recommendation to start rehabilitation therapies as soon as the person is medically stable and the recommendation for  periodic and thorough testing over time.

This is crucial because the often quick prognosis of “hopeless” attached to people with severe brain injuries can-and has-led to early withdrawal of feeding tubes and ventilators as well as DCD (donation after cardiac/circulatory death) for these non-brain dead people.

Dr. Joseph Fins MD and chief of Medical Ethics at Weill Cornell Medical College perhaps says it best when he praises the new guideline as “a real step forward for this population that has historically been marginalized and remains vulnerable” and “suggests that brain states are not static, but dynamic, and that people can improve over time”. (Emphasis added)

 

 

 

 

 

Caught in Social Media Bias

I have been hearing about Facebook blocking or restricting “conservative” content on the internet. Recently, there was a National Right to Life News story about a Republican judge from my state of Missouri who could not “boost”  (pay for reaching a wider audience) a pro-life video of his nephew overcoming a life-threatening birth defect detected prenatally. Facebook’s stunning rationale?

“Your Ad wasn’t approved because it doesn’t follow our Advertising Policies. We don’t allow ads that contain shocking, disrespectful or sensational content, including ads that depict violence or threats of violence.” (Emphasis added)

A short time ago, I saw that a shared written item from #NoAbortionCoercion on protecting conscience rights for healthcare providers on our National Association of Prolife Nurses (NAPN) Facebook page  was not allowed to be “boosted” because it also conflicted with Facebook’s advertising policies.

The item read:

“Conscience rights of healthcare providers must always be protected. As nurses, the government is constantly telling us what we must and mustn’t do when caring for our patients. There can be no coercion to act against our consciences. Compassion and love is and will always be at the center of what we do. #NoAbortionCoercion”

Our NAPN media nurse says that this has happened before and he has been told that some ads are considered “political”.

However, NAPN is a 501C3 educational organization, not a political one. We have only volunteers, not salaried employees. We do not endorse candidates.

I am a spokesperson for NAPN and as our NAPN website states :

“NAPN is a not-for-profit organization uniting nurses who seek excellence in nurturing for all, including the unborn, newborn, disabled, mentally and or/physically ill, the aged and the dying. Beginning in 1973, when abortion was accepted as a legal alternative to pregnancy, healthcare professionals have been confronted by an ever-increasing number of morally challenging life issues. The list of ethical dilemmas continues to grow: in vitro fertilization, cloning, fetal experimentation, organ donation and transplantation, nutrition and hydration, patient rights, certain sterilization practices, looming rationing of medical resources, assisted suicide and euthanasia, and stem cell research with its promise of advances in the treatment of disease. No one is more affected by these morally challenging issues than the nurse and the pressure to utilize unethical techniques and practices in the care of patients is increasing. Through a united, educational, professional organization such as NAPN, nurses can, in good conscience, deliver the best possible patient care while preserving, protecting and defending respect for human life.”

NAPN also helps to support nurses facing conscience rights legal battles and even offers a $1000 pro-life scholarship award each year to the school of the winning nursing student based on his or her essay, academic achievements, demonstration of leadership and participation in pro-life activities. Applications for the next 2018-2019 award will be posted soon on our website and Facebook page.

CONCLUSION

Of course, NAPN is only one of many groups and individuals complaining about apparent bias against pro-life or conservative groups on social media.

Facebook founder Mark Zuckerberg testified in April before the US Congress that he had no knowledge of bias against conservatives but as Lifenews.com and other news sources have found, there is conservative speech being suppressed not only by Facebook but also Twitter, Google and YouTube. We need more than just reassurances that improvements will be made while the problems are still ongoing.

With so much of the mainstream media enthusiastically supporting abortion, assisted suicide and other deliberate death decisions while ignoring or negatively reporting on issues like conscience rights and alternatives like crisis pregnancy centers, it is especially important for the public to be able to access social media sites like NAPN’s for real facts.

In today’s volatile legal and cultural climate, we need all available information-not a double standard.

An “Acceptable” Prejudice

This week, Fox News had a story  about John Cronin, a young man with Down Syndrome who, with his father, founded and runs what is now a $4 million dollar company called Crazy Socks.

This story follows the February announcement that the new Gerber Spokesbaby is Lucas Warren who had Down Syndrome. The famous baby food company stated that Lucas “exemplifies Gerber’s longstanding heritage of recognizing that every baby is a Gerber baby.” (Emphasis added)

However, this past week, the influential ethicist Arthur L. Caplan, PhD wrote a commentary titled “Should It Be Harder to Get Abortions for Down Syndrome Babies?”
for Medscape, a password protected medical news website for health professionals.

In his commentary, ethicist Caplan recognizes the worries that “Down Syndrome is becoming increasingly rare in Europe and the United States” because of prenatal testing and abortion.

But he contends that because:

“In recent years, we have even seen kids with Down syndrome appearing on cheerleading squads, or being put into beauty pageants. It’s clear that there has been movement to not exile or isolate children in the United States with Down syndrome and to try and get them more mainstream.” (Emphasis added)

Nevertheless, ethicist Caplan accepts the ultimate “exile” of Down Syndrome by abortion because “After all, legally, you don’t have to have any reason to decide to end the pregnancy.” (Emphasis added) He additionally cites polls showing high public support for abortion for “genetic  or hereditary diseases”.

Therefore he also criticizes the few states that have passed laws to protect unborn babies testing positive for Down Syndrome from abortion. (Emphasis added)

Dr. Caplan says he is not against “offering information to parents” about Down Syndrome but he is against “mandating” that such information be given.

Perhaps Dr. Caplan has forgotten that in 2008, the Kennedy Brownback law “Prenatally and Postnatally Diagnosed Conditions Awareness Act” was overwhelmingly passed by both houses of Congress and signed into law “(t)o amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions.”

DOWN SYNDROME AND PREJUDICE

Unfortunately, prenatal discrimination naturally leads to postnatal discrimination as I personally discovered when my husband and I had our daughter Karen who had Down Syndrome and a heart defect. We were shocked when the cardiologist gave us the option of refusing cardiac surgery and letting her die despite the excellent chance for survival with surgery.

Although we chose life for our daughter, we later found that Karen was secretly made a “Do not Resuscitate” (DNR) during one hospitalization by our trusted pediatrician who said I was “too emotionally involved with that retarded baby”. Unfortunately, we eventually lost our Karen to complications from pneumonia before her planned surgery.

I’m sure Dr. Caplan would not be in favor of terminating anyone because of race, sex, etc. but he apparently has a “politically correct” blind spot when it comes to abortion.

Ironically, one of the state laws that ethicist Caplan objects to states:

“That Indiana does not allow a fetus to be aborted solely because of the fetus’s race, color, national origin, ancestry, sex or diagnosis or potential diagnosis of the fetus having Downs syndrome or any other disability.”  (Emphasis added)

Sadly, that Indiana law was ruled unconstitutional in 2018 because of the legal “right to abortion” for any or no reason at all.

CONCLUSION

There is no test that will prove that an unborn baby is “perfect”, either before or after birth. For example, many of us have had our so-called “normal” children unexpectedly die or become addicted to illegal drugs years after birth. It is a sad conceit to assume that we can ensure the happiness of ourselves and our families by testing and then controlling which of our unborn babies are allowed to live.

In reality, a 2016 study “Positive attitudes prevail within families of people with Down syndrome” showed that almost 90% of families with members having Down Syndrome reported pride, love and even feelings of enrichment.

And a 2011 study in the American Journal of Medical Genetics titled “Self-perceptions from People with Down Syndrome “ found that “99% of people with Down syndrome indicated that they were happy with their lives”.

Nevertheless, as those of us who have had children with Down Syndrome know, the negative stereotypes of people with Down Syndrome persist despite these studies and often affect the medical professionals and ethicists charged with giving women and families information and options (including adoption) for conditions like Down Syndrome. Incomplete or biased information can be deadly and result in the now up to 90% of mothers who abort their unborn babies after a diagnosis of Down Syndrome.

The world is so much poorer without people like my late daughter Karen who was greatly loved. Prejudice against Down Syndrome justified as the legal “right to abortion” is lethal, not “acceptable”.

Women and their families surely deserve both comprehensive information and support when a prenatal diagnosis like Down Syndrome is made.

And every child, born or unborn, deserves a chance for life.

A Legacy for Jahi McMath

As a mother who has lost two beloved daughters, my heart goes out to Jahi McMath’s  mother Nailah Winkfield after the recent loss of her daughter after an almost 5 year battle to save her and have California rescind her death certificate after doctors concluded that Jahi was “brain dead”.

Jahi McMath was only 13 years old when she suffered complications after what was supposed to be a routine tonsillectomy and was declared “brain dead”. But instead of just accepting the diagnosis, her mother insisted that Jahi continue to be treated with a ventilator and have a feeding tube in the hope that she could improve.

The California hospital refused and a death certificate was issued for Jahi. The case made national news with influential ethicists like Arthur Caplan, PhD stating about Jahi that “You can’t really feed a corpse” and “She is going to start to decompose.” Other experts like Dr. Alan Shewmon disagreed.

Jahi’s mother went to court but a judge declared that Jahi met California’s criteria for brain death and that the hospital could remove Jahi’s  ventilator. However, the judge stayed the order for awhile so Jahi’s mother could appeal.

Instead and with the help of lawyers and The Terri Schiavo Life & Hope Network ,  Jahi’s mother was able to get her daughter transferred to New Jersey, a state that allows a religious exemption for determining death solely on the basis of the stopping of breathing and heartbeat instead of “brain death”.

After the transfer, Jahi’s  family released videos showing that not only did Jahi’s  body not deteriorate but also that Jahi seemed to be improving and moving her toes.

Sadly, Jahi unexpectedly died June 22, 2018 from excessive bleeding and liver failure after an operation for an intestinal problem. Jahi’s mother says she does not regret the years-long efforts to save her daughter and maintains that Jahi was able to communicate with me with her hands,” “Sometimes her feet, sometimes her head, but we spoke with her hands.”

A SURPRISING DEVELOPMENT

On April 11, 2018 and before Jahi died, the Harvard Medical School held a conference on “Brain Death and the Controversial Case of Jahi McMath”.

The results of this conference were released just days after Jahi’s  death and, according to The Mercury News, said that:

” Jahi McMath’s  brain showed subtle signs of improvement over the five-year span following the original declaration that she was brain-dead — suggesting a legal ‘resurrection’ from death to life and challenging our widely held understanding of what it means to be officially dead.” (Emphasis added)

And also that Jahi:

continued to grow, developed breasts, had menstrual cycles, digested food, excreted waste, fought off infections, healed wounds and seemed to respond to basic commands, according to medical testimony provided at a conference about the case.” (Emphasis added)

Dr. Robert Truog, the director of the Harvard Center for Bioethics who organized the conference, has long maintained that the legal definition of brain death as the “irreversible cessation of all functions of the entire brain, including the brain stem” was a  “legal fiction”.

But in a July 2, 2018 Mercury News article “Jahi McMath improved after she was declared brain-dead, doctors say”, Dr. Truog also said that “brain death” does not necessarily signify biological death but merely the extreme end of the spectrum of brain injury and that:

Even if (“brain dead”) patients are not biologically dead, their profound neurological impairment means that, for legal purposes, they can be treated as if they are dead.” (Emphasis added)

In the meantime, Jahi McMath now has two death certificates- one in California and one in New Jersey-and her family has a malpractice lawsuit against the original hospital.

CONCLUSION

Jahi McMath leaves behind many who mourn her but also the achievement of bringing public attention to the problems with the “brain death” diagnosis.

Unfortunately, as one new bioethicist wrote in a blog “Redefining Death in the Law” after attending the Harvard conference, with the legal concept of “brain death” undermined, death itself may be reduced to merely a personal choice:

“In the absence of a true biological or moral basis for the current conception of brain death, the law ought to reflect that death is largely a values judgement. Individuals should be allowed to state a preference during advanced care planning as to which definition of death most closely aligns with their personal beliefs. Religious accommodations are a step in this direction, but a more respectful and coherent law would give everyone a choice in defining their own death.” (Emphasis added)

Instead, I would submit that what we really should be doing is giving every brain-injured patient time, treatment and a chance to recover as fully as possible.

Now that would be a great legacy for Jahi McMath!

 

 

Alfie Evans and the Shocking UK Gosport Independent Panel Report

The Baby Alfie Evans’s case this year shocked the world but now we learn his forced death against his parents’ wishes follows a legal and healthcare nightmare in the UK.

Some of us expressed concerns years ago about the UK’s “Liverpool Care Pathway” developed in the 1990s to improve care of the dying by applying “the high standard of palliative care prevalent in hospices to other clinical settings”.  But the “Liverpool Care Pathway” went horribly wrong and in 2009, the UK Daily Mail published an article “Euthanasia by the back door: Hospitals ‘death pathway’ is open to error” with cases of non-dying patients considered “not worth saving” who died from the “combination of dehydration and powerful painkillers”, explaining that:

“Under the Liverpool Care Pathway, doctors can withdraw fluids and drugs from patients if they are deemed close to death. Many are then put on continuous sedation so they die free of pain.

But sedation can often mask signs of improvement, meaning doctors may be closing the door on people who would otherwise live for months.”

In 2013, the British Journal of General Practice published “The Liverpool Care Pathway for the dying: what went wrong?” . The authors acknowledged the problems that led an independent review to call for an end to the Liverpool Care Pathway but concluded that:

“(a)vacuum left by the abolition of the LCP makes a return to the ‘bad old days’ of poor or non-existent communication about dying a real possibility: we would argue that the response to poor use should be right use, not non-use” and  called for “increased funding and training in palliative care and suggest that skills in end-of-life care should become a required competency for all health care professionals.” (Emphasis added)

THE GOSPORT INDEPENDENT PANEL REPORT

More details of this scandal have just now surfaced in a report on the Gosport War Memorial Hospital  where patients were often admitted for rehabilitation or respite care. The report concludes that at least 450 patients had their lives “shortened” by denial of food and water along with powerful painkillers between 1989 and 2000. It details cases and concerns and ultimately acknowledges the families’ years-long pleas for the truth. Here is one excerpt:

“Those (nurses) who raise concerns about the conduct and practice of colleagues are now widely known as ‘whistle-blowers’. To put it into context, it is generally agreed that the NHS (National Health Service) has not been good at protecting people who take such a difficult step; as the documents make clear, the events of 1991 were no exception. Nor should the consequences for whistle-blowers be underestimated: these commonly included disciplinary action and undermining of professional credibility.

“The documents show that, following a complaint to the Trust in 1998 and the police investigation, it should have become clear to local NHS organisations that there was a serious problem with services at the hospital. Although the successive police investigations undoubtedly complicated the NHS response, it is nevertheless remarkable that at no stage was there a public admission of failure or any public apology. Nor was there a proportionate clinical investigation into what had happened. On the contrary, the documents show numerous instances of defensiveness and denial – to families, to the public and the media, and to health service and other organisations.” (Emphasis added)

CONCLUSION

Will charges now be brought against those involved in the Gosport War Memorial Hospital euthanasia deaths? Who knows? The Independent Panel only concluded that:

“With this Report and an online archive of documentation, the Panel has completed its Terms of Reference. The Panel now calls upon the Secretary of State for Health and Social Care and the relevant investigative authorities to recognise the significance of what is revealed by the documentation in this Report and to act accordingly.

But just as important is the question “Has health care now improved?”

Unfortunately, the answer may be no.

As the UK Telegraph reported in 2015 in the article “New NHS (National Health Service) death guidelines ‘worse than Liverpool Care Pathway’”, the Liverpool Care Pathway was supposedly phased out in 2014 in favor of the National Institute of Health and Care Excellence (NICE) guidelines. but families were still reporting poor end of life care, including denial of food and water.

And now, unlike that Liverpool Care Pathway horrors that were hidden for so long, we had the very public case of Baby Alfie Evans this year where courts enforced the doctors’ decision to shorten his life by removing his ventilator, refused his family’s requests to transfer him or take him home and even take away his feedings when he continued to breathe for days after the ventilator was removed.

Apparently, the death culture is apparently very hard to kill in the UK and, as we are finding, also in the US.

“Fatal Flaws”: A Must-See Film

With the American Medical Association considering changing its’ long-standing opposition to physician-assisted suicide despite the recommendations of its’ ethics committee and the California assisted suicide law declared unconstitutional now reinstated pending appeal, assisted suicide/euthanasia groups like Compassion and Choices (the well-funded former Hemlock Society) are ramping up efforts nationwide to legalize assisted suicide.

Along with major media outlets overwhelmingly supporting their efforts and a recent Gallup poll showing  that the “Majority of Americans (73%) Remain Supportive of Euthanasia”, how do we fight against this and educate the public?

One excellent answer can be found in the recently released 80 minute film “Fatal Flaws”.

“Fatal Flaws” features filmmaker Kevin Dunn who spent three years traveling throughout Europe and North American asking the question “should we be giving doctors the right in law to end the life of others by euthanasia or assisted suicide?”

In the film, Mr. Dunn respectfully interviews people and experts on both sides of the issues and the candid testimonies are powerful and moving. I have viewed the film myself and I believe that showings of this film to senior citizen groups, pro-life groups, churches and clergy, medical professionals, etc. would go a long way in educating the public, many of whom are supportive  or unsure of where they stand.

The film was produced in association with The Euthanasia Prevention Coalition. For information on purchasing the  “Fatal Flaws” film and/or the accompanying pamphlets, please go the Euthanasia Prevention Coalition “Fatal Flaws” site.

There will be a preview viewing of the film at the National Right to Life Convention June 29, 2018.

On a personal note: I am speaking at the NRL convention myself on the Alfie Evans’ case June 30, 2018 and I would love to meet those of you attending the convention.

 

 

Good News/Bad News about Alzheimer’s

First the good news:

Alzheimer’s disease is a currently irreversible, progressive brain disorder that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks.

However, a new study “Estimation of lifetime risks of Alzheimer’s disease dementia using biomarkers for preclinical disease” shows that “most people with preclinical Alzheimer’s disease will not develop Alzheimer’s dementia during their lifetimes”, according to a mathematical analysis based on several large, long-term studies.

According to the Alzheimer’s Association , the term “preclinical” refers to “a newly defined stage of the disease reflecting current evidence that changes in the brain may occur years before symptoms affecting memory, thinking or behavior can be detected by affected individuals or their physicians”.

Although biomarkers are still being investigated and validated, this new study can be reassuring to many people worrying that, for example, forgetting where they left their car keys means the beginning of Alzheimer’s.

While the cause of Alzheimer’s is still a mystery, research on the disease is massive and ongoing. Currently, there are drug and non-drug treatments that may help with both thinking and behavior symptoms. There is hope.

THE BAD NEWS

With the many negative stories in major media about Alzheimer’s, it is no wonder that people are so afraid of it.

As Deakin University Professor Megan-Jane Johnstone says in her book “Alzheimer’s disease, media representations and the Politics of Euthanasia-Constructing Risk and Selling Death in An Ageing Society”  :

“Alzheimer’s has been portrayed as the ‘disease of the century’ that is poised to have a near catastrophic impact on the world’s healthcare system as the population ages…

This representation of the disease—along with other often used terms such as ‘living dead’, a ‘funeral that never ends’ and a ‘fate worse than death’—places Alzheimer’s as a soft target in the euthanasia debate because it plays to people’s fears of developing the disease and what it symbolizes. It positions Alzheimer’s as something that requires a remedy; that remedy increasingly being pre-emptive and beneficent euthanasia.” (Emphasis added)

While countries like Belgium and Holland have long allowed lethal injections for people with Alzheimer’s , this is forbidden in the US-for now. However, assisted suicide groups are now trying new “living wills” stating that if or when the person is diagnosed “with Alzheimer’s or another incurable dementing disease”, he or she refuses not only a feeding tube but also even assistance with oral eating and drinking to end their lives.

Compassion and Choices, the well-funded former Hemlock society, has long promoted VSED (voluntary stopping of eating and drinking) as a legal alternative to assisted suicide in states without assisted suicide laws. But at the present time, people who cannot make medical decisions because of  conditions like Alzheimer’s cannot sign an advance directive.

So influential major media outlets like the New York Times often publish articles such as the May 30, 2018 article titled “Alzheimer’s? Your Paperwork May Not Be in Order” that quote Dr. Judith Schwarz:

“People should at least understand what the normal process of advanced dementia is about,” Dr. Schwarz said. “Feeding tubes are not the issue…. Opening your mouth when a spoon approaches is a primitive reflex that persists long after you’ve lost the ability to swallow and know what to do with what’s put in your mouth.” (Emphasis added)

Dr. Schwarz’s advice?

“Complete her organization’s Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia.”

But what Dr. Schwarz and others do not want to talk about is the often tragic reality of deliberate death by starvation and dehydration.

Although media articles portray VSED as a gentle, peaceful death, a 2018 Palliative Practice Pointers article in the Journal of the American Geriatric Society  titled Voluntary Stopping Eating and Drinking” states:

“VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers…The most common symptoms encountered after starting VSED are extreme thirst, hunger, dysuria (painful urination due to concentrated urine NV),  progressive disability, delirium, and somnolence.” (Emphasis added)

Most chillingly, the authors state:

 “Because an individual with delirium may forget his or her intention and ask for drinks of water, caregivers will struggle with the need to remind the incapacitated individual of his or her own wishes. This possibility should be anticipated and discussed with the individual in advance. While reminding the individual of his or her prior intentions may feel like coercion, acquiescing to requests for water will prolong the dying process for someone who has clearly articulated the desire to hasten death.” (Emphasis added)

The authors also state that if the patient’s suffering becomes severe, “proportionate palliative sedation and admission to inpatient hospice should be considered”. This is not the so-called peaceful death at home within two weeks that people envision with VSED.

Lastly, on the legal requirement of  a cause on the death certificate, the authors state:

“the clinician may consider including dehydration secondary to the principle illness that caused the individual’s intractable suffering. Although VSED is a self–willed death (as stopping life support might also be), use of the word “suicide” on death certificates in this context is discouraged because in incorrectly suggests that the decision for VSED stemmed from mental illness rather than intolerable suffering.” (Emphasis added)

So, like assisted suicide, the real cause of death is basically falsified with the rationale that the deliberate stopping of eating and drinking to hasten death is just another legal withdrawal of treatment decision like a feeding tube.

CONCLUSION

Years ago, my mother told me that she never wanted to be a burden on her family.

I never told my children that-especially when they were teenagers and already thought I was a burden to their lifestyles! Instead, I told them that the “circle of life” includes caring for each other at all ages and stages. Such caring also eliminates future guilt and leaves a sense of pride that we did the best we could for each other during our lives.

When my mother developed Alzheimer’s in the late 1980s (and later terminal thyroid cancer), a friend asked if I was going to feed her. At the time, my mother was fully mobile and able to get ice cream out of the freezer and eat it. I was shocked and offended.

“Do you want me to tackle her?!” I asked my friend.

“Oh, no!”, he answered, “I was talking about a feeding tube later on.”

I told him that my mother would die of her disease, not from deliberate starvation and dehydration.

Near the end of her life, we did spoon feed my mother and she enjoyed it very much before dying peacefully in her sleep.

For decades now, I have enjoyed caring for many people with Alzheimer’s or other dementias both personally and professionally.  I can attest that such people can be sweet and funny and as well as difficult at times.

Just like the rest of us!