Lethal Problems with Medical Futility and Disability Bias

In 2018,  Chris Dunn survived a freak diving accident that left him paralyzed, mostly blind and on a ventilator to breathe.  He spent most of the next year in an ICU in rural Maine.

Unable to see, eat, breathe or move on his own, the 44 year old father and concrete work spent his days in bed listening to the History Channel and hoping for a chance to show he could do more.

Efforts to find a rehab center failed. Even worse, hospital administrators and others were encouraging Chris’s mother Carol to put him in hospice to die.  As the article states:

“Drugged up and confined to bed, Chris waited while dealing with a hospital staff that didn’t know what to do with him. ‘There would be nurses that would come in and tell me, ‘You know you’re making your son suffer,’ says Carol. ‘I mean, what’s a mother to do with that?’”  (Emphasis added)

However, Carol refused to give up trying to find help for Chris and after 7 months, finally contacted the United Spinal Association. Jane Wierbicky, a longtime nurse and a member of the Association’s Resource Center team worked to help find a rehab center in Atlanta.

Now Chris only uses the ventilator a few hours a night, got outdoors to catch a fish, and returned home to spend Thanksgiving with his mother and girlfriend.

With the help of his mother and a team of advocates, Chris hopes to eventually live in an accessible apartment.

Medical care for Chris was not futile.

MEDICAL FUTILITY

The National Council on Disability defines “medical futility” as

“an ethically, medically, and legally divisive concept concerning whether and when a healthcare provider has the authority to refuse to provide medical care that they deem ‘futile’ or ‘nonbeneficial’. A “medical futility decision” is a decision to withhold or withdraw medical care deemed “futile” or “nonbeneficial.” (Emphasis added)

Because of my professional and personal experiences with disability bias as well as my volunteer work with people with disabilities, I have seen firsthand the potentially lethal effects of medical futility decisions based on disability. I have been writing on this topic for years, most recently on Missouri’s Simon’s Law enacted after the parents of a baby with Trisomy 18 and a heart defect who died later found out that doctors had ordered a “Do Not Resuscitate” and withheld life-sustaining treatment without their knowledge due to a secret medical futility policy at the Catholic hospital treating their son.

Recently, I found out that the National Council on Disability just published a 82 page comprehensive report titled “Medical Futility and Disability “  as part of a five-report series on the intersection of disability and bioethics.

In a letter to President Trump, the Council chairman states that the series:

“focuses on how the historical and continued devaluation of the lives of people with disabilities by the medical community, legislators, researchers, and even health economists, perpetuates unequal access to medical care, including life-saving care.

and notes that:

“In recent years, there has been a push to regulate medical futility decisions on the state and institutional levels. State laws, which vary greatly in their content and approach, define the protections, or lack thereof, of a patient’s wishes to receive life-sustaining treatment. Hospitals have turned to process based approaches, utilizing internal ethics committees to arbitrate medical futility disputes. Despite the increased attention, however, disability bias still finds its way into futility decision making.” (All emphasis added)

The Council identifies four factors that are influencing the futility debate today: “Advanced life-saving medical technology, Changes in healthcare reimbursement, Evolving concepts of patient autonomy and the Rise of the right-to-die movement”.

The report also extensively explores the legal issues  and several court decisions involving medical futility like the Terri Schiavo and Haleigh Poutre cases.

STATE LAWS

The Council report also evaluated current state laws regarding medical futility decisions and found only 11 with strong patient protections, 19 without patient protections, 19 with weak patient protections, and 2 with time-limited patient protections.

Further complicating the state laws is the lack of transparency for patients or other family members regarding an institution’s medical futility policies. Hospitals are rarely transparent with their medical futility policies, as in the Simon’s Law case. The report is right when it states that “the disclosure of medical futility policies is essential to providing patients, their surrogates, and their families with the information they need to protect their rights and ensure accountability”.

The Council also notes that “Disability nondiscrimination laws, including the ADA and Section 504 of the Rehabilitation Act, provide a viable, yet largely unexplored vehicle for enforcing the rights of people with disabilities in the medical futility context.”

The report ends with recommendations for Congress, the executive branch, medical and health professional schools, professional accreditation bodies, healthcare insurers and state legislatures to combat the problem of disability bias in healthcare.

CONCLUSION

One of the reasons I chose to become a nurse decades ago was the strong ethical principles in medicine. We were educated to treat all patients to the best of our ability regardless of race, disability, socioeconomic status, etc.  “Quality of life” was something to improve, not judge. The traditional hospice philosophy was to neither hasten nor prolong dying.

But over time, I saw ethics change. As the report itself notes, the advances in technology, changes in health care reimbursement, evolving concepts of patient autonomy and the rise of the right-to-die movement led to radical changes in both law and medical ethics.

The concept of medical futility was no longer limited to medically certain circumstances of treatment ineffectiveness but, all too often, also to the patient’s (and sometimes the family’s) perceived “quality of life”.

Such disability bias is often unrecognized, even by the medical professionals caring for the person, but it is a real bias that must be eliminated in our society.

I admire people like Chris Dunn and his determined mother who show us the possibilities when people with even severe disabilities get a chance to have the best life possible.

 

 

 

 

 

 

 

 

Are We Witnessing the Coming Extinction of Conscience Rights?

Last month, Wesley Smith, the well-known writer and lawyer who opposes assisted suicide and abortion, wrote an article titled “Bioethicist Wants to Morally Cleanse Medical Schools”  about plans to weed out pro-life potential doctors and nurses from even entering medical and nursing schools:

“Make no mistake. Schuklenk and his ilk — such as the adamant opponent of medical conscience, Ezekiel Emanuel — are deadly serious about crushing all dissent within the medical professions to emerging cultural paradigms, and plan to morally cleanse the ranks of doctors, nurses, pharmacists, and institutions of all  wrong thinkers, particularly of the religious and pro-life kind.”

As Wesley warns after speaking with such prospective medical and nursing students, “such culling already occurs outside of official policy”.

CONSCIENCE RIGHTS FOR HEALTH CARE INSTITUTIONS

Now health care institutions that forbid their employees from participating in abortion and euthanasia are at risk.

As an October 29, 2019 article in the Journal of the American Medical Association (JAMA) titled “Colorado End-of-Life Options Act-A Clash of Organizational and Individual Conscience” explains, a new court case may result in conscience rights being legally upheld when a doctor agrees to help a patient commit assisted suicide against a religious healthcare institution’s policy.

This came about when the Colorado legislature could not pass a physician-assisted suicide in 2014 and 2015 but a new, problematic referendum was introduced and passed by Colorado voters in 2016.

While hospitals and clinics in other states with assisted suicide laws are allowed to prohibit their employees from participating, the Colorado, the referendum added a little-noticed provision in the 2016 Colorado referendum that stated:

“A health care facility may prohibit a physician employed or under contract with the facility from prescribing medication to an individual who intends to use the medication on the facility’s premises. The facility must provide advance written notice of its policy to the physician and its patients. A health care facility may not discipline a physician, nurse, pharmacist, or other person for actions taken in good faith or for refusing to participate in any way.” (Emphasis added)

As the JAMA article notes,This provision virtually guaranteed the Colorado law would eventually be challenged”.

This set up the current case Mahoney et al v. Centura Health Corporation” involving Neil Mahoney, a Colorado man with advanced cancer, who wanted physician-assisted suicide and found geriatrician Barbara Morris, MD. Dr. Morris was willing to write the lethal overdose prescription. However, the religiously based Centura Health System where she was employed forbade participation in assisted suicide. Mr. Mahoney and Dr. Morris filed a lawsuit on August 21, 2019 and the doctor was fired on August 26 for violating the ethical directives provided for Catholic health care services.

The article concludes that:

“the case seems destined to have a potentially significant effect on national policy. If the courts rule that the Constitution allows hospitals to exert control over individual physicians’ claims of professional conscience, it will be a victory for corporate medicine.

But if the state law is upheld, the case could establish that physicians’ professional conscience claims hold or take precedence over the ethical and religious directives of religiously affiliated hospitals. It is possible that at least some religiously affiliated health systems might rather close than allow that outcome.” (All emphasis added)

CONCLUSION

As Wesley Smith writes, eliminating pro-life health care providers and institutions is  becoming part of an utilitarian agenda in the bioethics movement where “legalized euthanasia, free and unfettered abortion at all stages of gestation, infanticide, eugenic embryo engineering, invidious forms of health-care rationing based on ‘quality of life,’ etc., are all part of the mainstream bioethics agenda, or at the very least, are seen as respectable advocacy memes.”

With the current support of a predominantly sympathetic mainstream media, well-funded and politically active groups like Planned Parenthood and Compassion&Choices are also putting pro-life health care providers and their supportive institutions in grave danger of becoming an endangered species in law, politics and health care.

If this happens, our health care system will radically change-especially for the unborn, the elderly and people with disabilities.

When dedicated and compassionate people are denied entry into the health care professions because they refuse to deliberately end lives, harassed and/or fired when they refuse to participate in a deliberate death decisions and religiously based healthcare institutions are forced by law to allow lives to be ended by “choice” or close their doors, will any of us be able to trust our healthcare system when we need it the most?

We need to educate ourselves and the public before it’s too late.

Can Getting a DNR Tattoo be Hazardous to Your Health?

Cardiopulmonary resuscitation (CPR) is a lifesaving technique developed in the 1960s  for emergencies such as a heart attack or near drowning when a person’s breathing or heartbeat has stopped. Even non-medical people can be trained in basic CPR. However, not every person can be saved with CPR and some who do survive can have some brain damage.

In the early 1970s when I was a young ICU nurse, patients who appeared to be dying or their families could agree to a “do not resuscitate” (DNR) order.

But the 1991 Patient Self-Determination Act, along with the so-called “right to die” cases like Nancy Cruzan and Karen Quinlan, resulted in  the widespread use of DNR orders in hospitals.

So now after years of concern with rising health care costs, older people worried about becoming a “burden” to their adult children, and the push for people to sign “living wills” to refuse certain treatments if they become incapacitated,  it should not be a surprise that a growing number of people-including young, healthy people-are getting DNR (do not resuscitate) tattoos.

But what does that mean when an unconscious person is rushed to an emergency room?

Recently, there was a serious discussion of an actual case and a poll on ethics and DNR tattoos in MedPage, a newsletter for health care professionals.

The case involved a patient who arrived in an emergency room and unconscious after suffering a heart attack while jet skiing on vacation. He had ‘Do Not Resuscitate’ tattoo on his chest. There was a signature under the tattoo. However, the ambulance crew called restarted his heart with a defibrillator. The man was stabilized but hours later he has another heart attack.

The poll question and results from the 1580 votes were:

“Do you comply with the DNR tattoo or not?

Yes: 43.04%

No: 56.96%”

I was appalled that 43% would treat a DNR tattoo as the equivalent of a legal document and I agree with the reasoning of the lawyer/doctor reviewing this case who wrote that “the legally correct course of action would be to temporarily ignore the tattoo unless and until evidence that the tattoo reflects the patient’s current thinking is brought forth.”

PROBLEMS WITH DNR ORDERS

Unfortunately in hospital situations, DNR orders are sometimes misinterpreted as not wanting to live  or “do not treat” when the person had assumed it would apply only in extreme circumstances.

For example, a new nurse was taking care of a young girl with mental retardation who was eating when she suddenly started choking. The new nurse ran to her head nurse in a panic and was told that, because the parents agreed to a DNR order, the nurses could only just hold her hand!

Obviously, relieving the choking by removing the food should have been done.

CONCLUSION

The results of not understanding  DNR orders can be tragic but too many people-including medical professionals-don’t realize the legal and ethical ramifications.

Personally, I chose to make a durable power of attorney for health care naming my husband as the decision maker if I could not speak for myself rather than a “living will” or other advance directive with various treatments to check off if I can’t speak for myself.

I want all the options, risks and benefits of treatments fully explained to my decision maker based on my current condition so that he make an informed decision. This would include the use of a DNR if or when I am dying.

What we all desperately need now is more awareness and common sense when it comes to asking for or allowing a “Do Not Resuscitate” order, especially a DNR tattoo.

 

Accidental Oversight or Deliberate Omission in new Palliative Care and Hospice Education and Training Act?

With the enthusiastic support of Compassion and Choices (which promotes legalizing assisted suicide throughout the US), the first Palliative Care and Hospice Education and Training Act (PCHETA) was introduced in Congress in 2016  to allow millions of dollars in federal grants to, in the bill’s words, “increase the number of permanent faculty in palliative care at accredited allopathic and osteopathic medical schools, nursing schools, social work schools, and other programs, including physician assistant education programs, to promote education and research in palliative care and hospice, and to support the development of faculty careers in academic palliative medicine.”

While palliative care has been traditionally defined as “compassionate comfort care that provides relief from the symptoms and physical and mental stress of a serious or life-limiting illness” and hospice care as “compassionate comfort care (as opposed to curative care) for people facing a terminal illness with a prognosis of six months or less, based on their physician’s estimate”, the PCHETA bill may radically change such care.

I started writing  about the potential dangers with the PCHETA bill in Congress in 2018 when it was passed by the US House of Representatives and sent to a Senate Committee for approval. The PCHETA stalled there, thought to be at least partially due to concerns by some U.S. senators about the bill’s potential problems with hastening of death and legalized assisted suicide  despite a “clarification” in the bill that that “None of the funds made available under this Act (or an amendment made by this Act) may be used to provide, promote, or provide training with regard to any item or service for which Federal funding is unavailable under section 3 of Public Law 105–12 (42 U.S.C. 14402)” such as assisted suicide, euthanasia or mercy killing.

So after the bill stalled, a second “clarification” was added to the Senate bill (now S. 2080) in July, 2019 that states “Sec. 5(b) ADDITIONAL CLARIFICATION.—As used in this Act (or an amendment made by this Act), palliative care and hospice shall not be furnished for the purpose of causing, or the purpose of assisting in causing, a patient’s death, for any reason.” (Emphasis added)

This second clarification is critical because, as the US Conference of Catholic Bishops representative Greg Schleppenbach, has written:

“This provision is important because for the first time anywhere in federal law or regulations it explicitly states that palliative and hospice care cannot be furnished for the purpose of causing or assisting in causing death.  These protective provisions were added as a condition of our support for this bill.” (Emphasis added)

But on October 28, 2019, the House PCHETA (HR 647) bill that does NOT contain the second clarification was reintroduced and quickly passed by the US House of Representatives on a voice vote  and sent to the Senate for approval. That bill is now in the Senate Committee on Health, Education, Labor, and Pensions. (Senators can now be contacted by even email.)

OPPOSITION TO THE PCHETA BILL CONTINUES

Even with the second clarification, many groups continue to voice concern about the PCHETA bill because many of us nurses and doctors are seeing unethical practices such as assisted suicide, terminal sedation, voluntary stopping of eating, drinking (VSED) and even spoon feeding, etc. being used to cause or hasten death but often called palliative or “comfort care” for such patients.

We worry that the Palliative Care and Hospice Education and Training Act (2019) can allow federal funding to teach and even institutionalize such unethical practices without sufficient oversight, safeguards or penalties.

Julie Grimstad of the Healthcare Advocacy and Leadership Organization (HALO) also voices concerns about funding new palliative care and hospice programs, citing the 2019 Department of Health and Human Services Office of Inspector General report titled Vulnerabilities in Hospice” that documented serious problems.

She also cites Dr. Farr A. Curlin, a palliative medicine specialist at Duke University, who warns that:

“When the goal of HPM (Hospice and Palliative Medicine) shifts from helping patients who are dying to helping patients die, practices that render patients unconscious or hasten their death no longer seem to be last-resort options,” [emphasis added]

HALO is joined by other groups who officially oppose PCHETA S.2080 such as the National Association of Pro-life Nurses  and the Euthanasia Prevention Coalition USA

CONCLUSION

Whether or not the omission of the second clarification in the bill sent to the Senate was intentional, the omission validates the genuine concern many of us have that the traditional end of life care ethic to neither hasten nor postpone dying is rapidly being replaced by “quality of life” judgments, economic concerns and patient “choice” to die.

Northern Ireland Forced into Legalizing Abortion on Demand

My husband and I just returned from a long-anticipated and wonderful trip to Ireland with our friends, one of whom was born in Ireland to an unwed mother at the infamous Magdelene Laundries and adopted by a St. Louis family when she was 2 1/2 years old.

We traveled all around Ireland and Northern Ireland, enjoying the friendly people, beautiful old churches, stately castles, charming villages and great food.

We were able to see or read some news there but the topics were mainly about the Brexit deal for Ireland to leave the European Union.

Returning home, I was flabbergasted to read about the sudden legalization of abortion on demand in Northern Ireland forced by the UK that occurred October 22 when we were on our trip.

A BRIEF HISTORY OF ABORTION IN IRELAND

The United Kingdom legalized abortion with the Abortion Act in 1967, years before the 1973 Roe v Wade decision that legalized abortion in the US. But the Abortion Act was never extended to include Northern Ireland, a part of the UK, which then only allowed abortion for “a severe and long-term physical or mental risk to the woman’s health”.

In 2016, the United Nations tried to pressure Ireland into legalizing abortion on demand and overturn Ireland’s Eighth Amendment that protected both unborn babies and their mothers equally as deserving a right to life. This made Ireland one of the safest places in the world for pregnant mothers and their unborn babies and with one of the lowest maternal mortality rates in the world.

But tragically in May 2018, a voter referendum to legalize abortion in Ireland passed. On January 1, 2019, the law took effect even though 95% of Irish doctors refuse to perform abortions.

And after the Irish voter referendum on abortion passed in May 2018, a poll by Amárach taken in October found that 60% of Irish residents oppose taxpayer-funded abortions, 80% say health care workers should not be forced to carry out abortions against their conscience, 79% favor a woman seeking an abortion being offered the choice of seeing an ultrasound before going through with the abortion and 69% of those surveyed believe doctors should be obliged to give babies that survive the abortion procedure proper medical care rather than leaving the babies to die alone.

But in Northern Ireland, recent rulings in the High Court in Belfast and the Supreme Court in London stated that the abortion situation in Northern Ireland was “incompatible with human rights legislation”. So now, Northern Ireland is being forced to accept abortion up to 24 weeks or beyond if “the mother’s health is threatened or if there is a substantial risk the baby will have serious disabilities”. But, as happened in Ireland, hundreds of medical professionals-including doctors, nurses and midwives-say they will not participate.

Andrew Cupples, a Northern Irish GP, said that some medical professionals have even said they will walk away from the healthcare service itself if they are forced to participate in abortion services.

Nurses&Midwives4Life Ireland  and Doctors For Life Ireland have been especially vocal and active in opposing abortion and those of us in the National Association of Pro-life Nurses have been enthusiastically supporting their efforts and encouraging others to do so as well.

CONCLUSION

My husband and I, as well as our friends, are very proud of our strong Irish heritage and firmly pro-life so this news about Northern Ireland was a blow.

But like the good doctors and nurses of Ireland, we will never give up.

As the abortion movement grows ever more hardened and radical, none of us must give up exposing the terrible truth about abortion as well as showing the life-affirming dedication to caring for both mother and unborn child that truly defines the pro-life movement.

 

 

 

Press Release: The National Association of Pro-life Nurses On Federal Judge Blocking North Dakota Law Informing Women of Abortion Pill Rescue Reversal

The National Association of Pro-life Nurses (NAPN) joins the American Association of Pro-life Obstetricians and Gynecologists, Heartbeat International   and the Alliance Defending Freedom in responding to the September 13, 2019 decision by a federal judge granting the American Medical Association’s (AMA) motion for a temporary injunction blocking the new North Dakota law requiring doctors to inform women seeking medical pill abortions about abortion reversal if they change their minds.

Already, 8 other states have passed abortion pill reversal informed consent laws with at least 750 babies saved.

The AMA’s position is that this information is a “government mandated message that they would not otherwise recite and refer their patients to government-created materials and government-sanctioned referrals about an experimental medical treatment that has not been proven safe and effective or approved by the FDA, that violates accepted ethical standards and best practices in medical care, that undermines Physicians’ ability to provide their patients with the highest standard of medical care, and that contradicts Physicians’ viewpoints.” (Emphasis added)

In reality, the abortion reversal drug progesterone is a natural pregnancy hormone to grow the placenta and provide nourishment for the unborn baby. It is sometimes given to pregnant women who have or have had bleeding, miscarriage, infertility or other problems as well as routinely with in vitro fertilization.

In medical pill abortions, the first abortion drug mifepristone blocks this natural progesterone while the second abortion drug misoprostol is usually taken by the woman 36-72 hours later to cause expulsion of the unborn baby.

If progesterone is given before the second abortion pill, the chances of the baby surviving increase from 25% (the survival rate without natural progesterone) to 68% (the average survival rate after giving natural progesterone)The timing between the first and second drug is the crucial window where abortion reversal if possible.

There is even a website at www.abortionpillreversal.com for information on abortion reversal that includes a hotline phone number at 1-877-558-0333.

But unfortunately, this is critical information that Planned Parenthood and the AMA apparently don’t want women to get.

It is ironic that the abortion industry constantly proclaims that the public should just “trust women” when it comes to abortion but apparently it does not trust women with the truly informed consent required before any other treatment or procedure.

Contact

Marianne Linane RN, MS, MA, National Association of Pro-Life Nurses Executive Director

📞  (202) 556-1240
✉  Director@nursesforlife.org

Nancy Valko, RN ALNC Spokesperson for the National Association of Pro-Life Nurses

📞 (314) 504-5208

Website: www.nursesforlife.org

Facebook: https://www.facebook.com/Nurses4life/

Two Disturbing Articles about the Education of Doctors and Nurses

A September 12, 2019 Wall Street Journal op-ed titled “Take Two Aspirin and Call Me by My Pronouns- At ‘woke’ medical schools, curricula are increasingly focused on social justice rather than treating illness” exposed the problem with including politically popular courses at the expense of hard science.

This was preceded by an August 23, 2019 MedPage article titled A Radical Change to Nursing Board Exams” that exposed a “A lack of situational teaching in clinical settings has led to inadequate skills in critical thinking and decision-making on the part of novice new graduate nurses” resulting “in an epidemic of poor clinical judgment among novice nurses, preventing them from making the best decisions for their patients and incurring huge costs to the institutions where they work for longer orientation periods and malpractice lawsuits.” (Emphasis added)

It is hoped that this new nursing board exam will force nursing schools to make clinical judgment and clinical experiences a central part of nursing education.

I was shocked but not actually surprised by these two disturbing articles.

NURSING EDUCATION

I started to notice the problems some new nurses were having several years ago after the traditional 3 year nursing diploma education in hospitals was  phased out in favor of 2 year associate degree programs (ADN) and 4 year bachelor degree programs (BSN) with less clinical experience.

Many of our new nurses had trouble with decision-making and couldn’t function well in the hospital. Many were demoted to nursing assistant or left after their trial period. I tried to personally help some of these new nurses who were obviously dedicated and wanted to do their best for their patients but many froze from the fear of making a wrong decision.

These new nurses needed more continuous help than I could give so I talked to nursing supervisors but the situation did not change much.

In the meantime, my hospital announced that every nurse now must have a bachelor degree in nursing (BSN) by 2021. This started at many hospitals after a 2010 Institute of Medicine paper recommended a goal that 80% of nurses have a BSN by 2020. RN to BSN programs then proliferated, eventually even online.

Most of my fellow nurses who took these BSN courses on their own time while working full-time complained to me that these courses were not especially helpful clinically and more geared to management preparation and community education. They also complained about exhaustion and difficulty managing family, work and study. Several wound up getting sick themselves.

Although the hospital helped with the expense of the BSN degree, the hourly salary increase for a BSN only went up to 10 cents more an hour when I was there.

MEDICAL EDUCATION

In the September 12, 2019 Wall Street Journal op-ed “Take Two Aspirin and Call Me by My Pronouns”  by Dr. Stanley Goldfarb, a former associate dean of curriculum at the University of Pennsylvania’s School of Medicine, highlights  another but similar problem. He asks “Why have medical schools become a target for inculcating social policy when the stated purpose of medical education since Hippocrates has been to develop individuals who know how to cure patients?”

He complains that:

“These educators focus on eliminating health disparities and ensuring that the next generation of physicians is well-equipped to deal with cultural diversity, which are worthwhile goals. But teaching these issues is coming at the expense of rigorous training in medical science. The prospect of this “new,” politicized medical education should worry all Americans.” (Emphasis added)

He also states that:

“The traditional American model first came under attack by progressive sociologists of the 1960s and ’70s, who condemned medicine as a failing enterprise because increased spending hadn’t led to breakthroughs in cancer treatment and other fields. The influential critic Ivan Illich called the medical industry an instrument of “pain, sickness, and death,” and sought to reorder the field toward an egalitarian social purpose. These ideas were long kept out of the mainstream of medical education, but the tide of recent political culture has brought them in.” (Emphasis added)

He concludes:

“Meanwhile, oncologists, cardiologists, surgeons and other medical specialists are in short supply. The specialists who are produced must master more crucial material even though less and less of their medical-school education is devoted to basic scientific knowledge. If this country needs more gun control and climate change activists, medical schools are not the right place to produce them.” (Emphasis added)

After an apparent avalanche of criticism, the Wall Street Journal wrote an editorial defending Dr. Goldfarb’s op-ed stating:

“Patients want an accurate diagnosis, not a lecture on social justice or climate change. Thanks to Dr. Goldfarb for having the courage to call out the politicization of medical education that should worry all Americans.” (Emphasis added)

CONCLUSION AND SOLUTIONS

I became an RN fifty years ago in what I now call a “golden age”.

Before we could even be admitted to nursing school, we had to submit a character reference. My fellow nursing students were as excited and dedicated as I was to become the best nurse possible for our patients. We regularly saw programs like “Marcus Welby, MD” and “Medical Center” where doctors and nurses worked tirelessly and bravely to help their patients.

When my preferred hospital changed its nursing program from a 3 year diploma program to a 2 year ADN program, I was worried but decided to trust the hospital. However, I felt somewhat unprepared after graduation and found a 1 year nursing internship program at another hospital that gave me supervised clinical experience in every area.

Not only did that increase my competency, it changed my mind from specializing in pediatrics to critical care. I think that such programs should be encouraged at every hospital for new nurses to help solve the problem of poor decision-making and clinical judgement. Nothing substitutes for actual clinical experience which is in short supply  in many ADN and BSN programs.

Also 50 years ago, rigorous ethics were an important part of our nursing education with “do no harm” to patients, report our mistakes, never lie, advocate for our patients regardless of age, socioeconomic status or condition, etc. incorporated as standard requirements. We happily took the Nightingale Pledge.

However in the 1970s, I saw ethics slowly become “bioethics”. The tried and true Hippocratic Oath principles requiring high ethical and moral standards for doctors including prohibitions against actions such as assisting suicide and abortion gave way to “bioethics” with essentially four principles:

1. Respect for autonomy (the patient’s right to choose or refuse treatment)

2. Beneficence (the intent of doing good for the patient)

3. Non-maleficence (not causing harm)

4. Justice (“fair distribution of scarce resources, competing needs, rights and obligations, and potential conflicts with established legislation”)

Unfortunately, those principles are malleable and then used to justify actions and laws that would be unthinkable when I graduated. That bioethics mindset slowly changed not only medical and nursing education but also the principles that informed our work.

While we cannot recreate the past, we can reform our medical and nursing education and practice to return these professions-and our medical and nursing associations-to positions of trust. This is crucial not only for our professions but also for our patients and the public.

 

Here is What Sara Buscher Wrote to a Senator about the PCHETA

I have written before about the Palliative Care and Hospice Education and Training Act (PCHETA) that has now been reintroduced in 2019 but today, I have a guest column.

Sara Buscher recently wrote a well-researched letter to her congressman opposing the new PCHETA bill and has given me permission to use it here.

To find your state’s House of Representative member, go to https://www.house.gov/representatives/find-your-representative

To find your US Senator. go to https://www.senate.gov/senators/index.htm and type your state into the search box near the end.

September 8, 2019

Via Email to sean_riley@ronjohnson.senate.gov

The Honorable Ron Johnson

United States Senate

Washington, DC 20510

September 8, 2019

RE:      Palliative Care and Hospice Education Training Act (PCHETA),

  1. 2080 (in Senate HELP Committee) and related bill H.R. 647

Dear Senator Johnson:

I am a retired attorney and C.P.A. who served on Governor Tommy Thompson’s task force on health care costs. I managed employee benefit programs for the State of Wisconsin and later at the University of Wisconsin. As a lawyer in private practice, I advocated for the elderly and disabled. I currently serve on the board of the Euthanasia Prevention Coalition – USA.

I urge you to object to this bill being “hot-lined,” oppose it and vote against it. As one accountant to another, this bill is a rip off. In effect it will help create a second tier of health care where people receive poorer care, and are sometimes euthanized. The bill provides federal funding for palliative care medical education and a public awareness option for “selling” palliative care to patients and their families. Palliative care grew out of and includes hospice care. It provides an earlier pathway to hospice care.

Government Funding is Unneeded

Government funding is not needed. If enacted, the bill will cost the federal government $86 million over the next four years.[1] Palliative care has already spread rapidly.[2] Through 2006, the George Soros’ Open Society Institute and the Robert Wood Johnson Foundation spent more than $200 million to develop and expand palliative care.[3] With philanthropic[4] funding, palliative care has grown to the point that more than 80% of US patients who are hospitalized for serious illness have access to it.[5] Over 2017-19, $40 million is being spent to develop community programs for serious illness.[6]

We know that philanthropic funding did not stop when the bill failed to pass two years ago. During that time, palliative care has continued to expand. If enacted, this bill would replace philanthropic dollars with federal tax dollars. So, this bill would benefit those who want to reshape medicine for the rest of us according to their worldview.

 Elusive Cost Savings

If there are any savings, which is questionable as discussed below, providers would likely keep them. When the government pays a flat fee, like Medicare and Medicaid do for hospitalizations, the providers keep all the savings.[7] For example, if Medicare or Medicaid pays $20,000 per case and the hospital spends only $13,000, thereby saving $7,000, the government still pays $20,000 and provider keeps $7,000. The same is true of all the managed care programs and hospice. Industry proposals would have Medicare pay for palliative care like it does for hospice with a flat daily fee.[8]

I am concerned that palliative care, like its older sister hospice will not live up to its cost savings hype. Palliative care researchers are claiming they can save end of life costs that hospice and advance care planning also claim to be saving. It just isn’t possible to save the same costs (use of Intensive Care Units (ICUs), reducing hospitalizations, and reducing aggressive care at the end of life) more than once.

A study done for the Medicare Payment Advisory Commission (MedPAC) found Medicare hospice benefits have not lowered Medicare costs in the last year of life.[9] According to the consultant, some researchers showed hospice saved money by picking time periods that compared apples to oranges.[10]

Enactment Could Erase Medicare Fraud Recoveries

The HHS Office of Inspector General says hospices are defrauding Medicare of hundreds of millions of dollars by enrolling people who are not terminal and then billing Medicare at the highest rates.[11] Hospices are already using palliative care as a “loss leader” to enroll more patients into hospice earlier.[12] Hospices make more money by enrolling people who are not eligible for hospice as they need less care.[13] As a result, for-profit hospices are the most profitable Medicare-financed health service. Id. They expect palliative care to become as profitable.[14] Competition will drive out small non-profit hospices.[15]

The PCHETA bill could erase Medicare fraud recoveries by extending palliative care including hospice to those with a “serious or life threatening illness,” the definition of which is to be decided after enactment with input from hospice and palliative care insiders (Bill Section 4 creating section 904(c)(3)). If defined in a way that allows end of life hospice-like care to be called palliative care, it would legitimize enrolling the people who are now being fraudulently enrolled in hospice. Medicare spent $9.5 billion on hospice benefits for patients who outlived their terminal prognosis in 2016.[16] Nearly half of hospices are unsure they could pass a government audit, saying their biggest concern is their enrollment of people who are not terminal. Id. So, this bill could benefit those who game the system.

A Government Stamp of Approval May Hoodwink People

Palliative care can start alongside normal medical care and then eventually shift to hospice care without access to normal medical care. The HHS Office of Inspector General (OIG) reported that people were inadequately informed about the consequences of enrolling in hospice and some were placed in hospice completely without their knowledge.[17] In California, the Senior Medicare Patrol reported that elderly people living in their own homes were approached by nurses and sold housekeeping services that turned out to be Medicare hospice enrollment, leaving them without access to their medications and with unpaid medical bills.[18]

A government stamp of approval may lead more people to poor palliative care and in some cases, euthanasia. Last year, the HHS-Office of Inspector General (OIG) reported that hospice enrollees were receiving poor care.[19] More recently, HHS-OIG reported that 80% of hospices had deficiencies that posed risks to beneficiaries, with 20% jeopardizing patients’ health.[20]

Instances of patients being overdosed to unconsciousness until they die (this is called “palliative sedation” or “terminal sedation”) have increased according to Duke University professor Farr Curlin, M.D.:

Many patients and their families don’t trust HPM [Hospice and Palliative Medicine] and are resistant to it.… These individuals tell stories about loved ones who declined slowly over time, fighting the good fight with the support and companionship of their family members and friends. When HPM professionals became involved in their care, their loved ones were put on powerful drugs, became unconscious and unresponsive, and were soon dead. These stories are clearly shared within communities and powerfully shape people’s perceptions of HPM, which many see as a sophisticated and seductive way of getting people to die.[21]

I was involved in a case where a family member authorized pain relief for her sister and was assured the staff would keep her warm in a snugly blanket because she was always cold. Three hours later, she was dead after massive repetitive doses of powerful drugs.

To maximize profits, the director of Novus Health Services regularly directed nurses to make hospice patients “go bye-bye” with overdoses of drugs like morphine.[22] Novus is now facing a $60 million Medicare fraud indictment.[23]

Clinical practices in palliative medicine regularly result in shortening lives.[24] In one study, 39% of physicians and nurses said they intended to shorten survival with medications and treatment withdrawals.[25] A survey of over 800 hospice and palliative care physicians revealed 45% would sedate patients who were not actively dying to unconsciousness and then withhold food and fluids until they died.[26] One-fourth of them said it did not matter to them how long the patient had to live. Id.

I hope you will do everything you can to kill this bill.

Sincerely,

Sara Buscher

[1] https://www.cbo.gov/publication/54309

[2] https://www.medscape.com/viewarticle/892289

[3] Palliative Care Grantmaking Snapshot Report 2009 (data up to 2006) at page 4, available at amydwrites.com/yahoo_site_admin/assets/docs/Palliative_Care_Grantmaking_Snapshot_Report.13155115.pdf

[4] “Mr. Soros is now funding a project that focuses on the development of palliative care globally. We help govern­ments develop pain and palliative care initiatives and policies.” https://www.mskcc.org/experience/physicians-at-work/kathleen-foley-work

[5] See note 2.

[6] https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2017.0653 grant from Gordon and Betty Moore Foundation.

[7] J. Brian Cassel, Whose Costs Are Saved When Palliative Care Saves Costs?, Health Affairs Blog Sept. 2014 at https://www.healthaffairs.org/do/10.1377/hblog20140929.041603/full/

[8] See proposals via links at https://www.nationalcoalitionhpc.org/aahpm-pacssi-payment-model-ptac-results-a-win-for-patients-and-families/

[9] Spending in the Last Year of Life and the Impact of Hospice on Medicare Outlays (Updated August 2015), MEDPAC http://www.medpac.gov/docs/default-source/contractor-reports/spending-in-the-last-year-of-life-and-the-impact-of-hospice-on-medicare-outlays-updated-august-2015-.pdf?sfvrsn=0

[10] See note 9 at the Appendix.

[11] https://oig.hhs.gov/oei/reports/oei-02-16-00570.asp linking to the complete report.

[12] https://hospicenews.com/2019/05/14/study-71-of-u-s-adults-have-never-heard-of-palliative-care/ A loss leader is a service sold below cost to attract more customers who will then buy more profitable services. www.businessdictionary.com/definition/loss-leader.html

[13] For-profit hospices saw profit margins exceed 15 percent in 2012, according to a new report from the Medicare Payment Advisory Commission, known as MedPAC, which advises Congress on health policy. No other Medicare-financed health service was as profitable. https://www.huffpost.com/entry/hospice-report_n_55b1307ee4b0a9b94853fc7a 

The 2016 profit margin was 16.8%. http://www.medpac.gov/docs/default-source/data-book/jun19_databook_entirereport_sec.pdf?sfvrsn=0 at p 190.

[14] See note 12.

[15] hospicenews.com/2019/08/27/confessions-of-a-board-member-small-hospice-non-profits-will-not-survive/

[16] homehealthcarenews.com/2018/10/nearly-half-of-hospice-providers-uncertain-they-would-survive-an-audit/

[17] See note 19.

[18] https://cahealthadvocates.org/beneficiaries-pay-the-price-for-hospice-fraud/

[19] https://oig.hhs.gov/oei/reports/oei-02-16-00570.asp linking to the complete report.

[20] https://oig.hhs.gov/oei/reports/oei-02-17-00020.asp linking to the complete report.

[21] Farr A. Curlin, MD Hospice and Palliative Medicine’s Attempt at an Art of Dying, ch 4 in Dying in the Twenty-First Century, edited by Lydia Dugdale, MD, MIT Press 2015 at page 48.

[22] https://www.bizjournals.com/dallas/news/2016/03/30/novus-hospice-ceo-directed-nurses-to-overdose.html

[23] https://www.justice.gov/usao-ndtx/pr/sixteen-individuals-charged-60-million-medicare-fraud-scheme

[24] Cohen L, et al., Accusations of Murder and Euthanasia in End of Life Care, J Pall Med 2005.8.1096 at 1102.

[25] See note 24 at 1099.

[26] Plots created by Sahr N, Ph.D from data reported on in Maiser S et al., A Survey of Hospice and Palliative Care Clinicians’ Experiences and Attitudes Regarding the Use of Palliative Sedation, J Pall Med 2017 Sep;20(9):915-92.

The National Association of Pro-life Nurses Statement Opposing the Palliative Care and Hospice Education and Training Act (2019)

The National Association of Pro-life Nurses joins the Euthanasia Prevention Coalition USA and the Healthcare Advocacy and Leadership Organization (HALO) and other organizations in opposing the  Palliative Care and Hospice Education and Training Act (2019) H.R. 647, S.2080.  (HALO has issued an action alert with the contact numbers for legislators on the Senate committee considering this bill.)

As nurses, we strive to care for our seriously ill, disabled and terminally ill patients with compassion and the highest ethical standards. We applaud the medical innovations and supportive care options that can help our patients attain the highest quality of life possible.

However now many of us nurses are now seeing unethical practices such as assisted suicide, terminal sedation (with withdrawal/withholding of food, water and critical medicines), voluntary stopping of eating, drinking and even spoon feeding, etc. used to cause or hasten death but often called palliative, “comfort” or routine hospice care for such patients.

We believe that the Palliative Care and Hospice Education and Training Act (2019) will allow federal funding to teach and institutionalize such unethical practices without sufficient oversight, safeguards or penalties.

For example, the Section 5 Clarifications (p. 21) against federal funding for objectionable practices “furnished for the purpose of causing, or the purpose of assisting in causing, a patient’s death, for any reason” is toothless. Such practices are already  considered acceptable by many influential hospice and palliative care doctors like Dr. Timothy Quill, a board-certified palliative care physician, 2012 president of the American Academy of Hospice and Palliative Medicine and promoter of legalizing physician-assisted suicide and terminal sedation.

It is also disturbing the Compassion and Choice, the largest and best funded organization promoting assisted suicide and other death decisions,  has a mission statement stating:

“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.”

and a “Federal Policy Agenda / 2016 & Beyond”  goal to:

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….” (All emphasis added)

As nurses, we are also very concerned that the Act contains no conscience rights protection for those of us-doctors and nurses alike-who will do anything for our patients except deliberately end their lives or help them kill themselves.

Many of us have already faced threats of termination of employment for refusing to participate in unethical, life-ending practices without support from our nursing organizations like the American Nurses Association that recently dropped their traditional opposition to physician-assisted suicide and voluntary stopping of eating and drinking.

For the sake of protecting our patients, the integrity of our medical and nursing professions as well as our healthcare system, we urge the public and our congressional representatives to oppose this dangerous Act.

 

Marketing Death and Alzheimer’s Disease

An April, 2019 study in the Journal of the American Medical Association titled “Attitudes Toward Physician-Assisted Death From Individuals Who Learn They Have an Alzheimer Disease Biomarker” found that  approximately 20% of cognitively normal older adults who had elevated beta-amyloid — a biomarker that is thought to increase the risk of Alzheimer’s disease — said they would consider physician-assisted suicide if they experienced a cognitive decline. Not everyone with amyloid plaques goes on to develop Alzheimer’s disease.

Although no state with legalized physician-assisted suicide currently allows lethal overdoses for people with Alzheimer’s or other dementia, Emily Largent, JD, PhD, RN (one of the authors of the  study) said that:

“Our research helps gauge interest in aid-in-dying among a population at risk for developing Alzheimer’s disease dementia and grappling with what they want the end of life to look like”

And

“Public support for aid-in-dying is growing…Now, we are seeing debates about whether to expand access to aid-in-dying to new populations who aren’t eligible under current laws. That includes people with neurodegenerative diseases like Alzheimer’s disease.”

CHOOSING DEATH

As the US birth rate declines to a 32-year low  while people are living longer, now there are more people older than 65 than younger than 5. This has major economic and cultural implications, especially with diseases such Alzheimer’s that usually affect older people.

Back in 2012, I wrote   about a Nursing Economic$ Summit “How Can We Afford to Die?” that had an 8 point action plan. One of the points discussed the importance of getting everyone over the age of 18 to sign “living wills” and other advance directions that also included the caveat: “if many patients have advance directives that make positive, cost-conscious systemic change impossible, most of the other efforts discussed as part of our  action plan will go for naught”. (Emphasis added).

It should not be a surprise that the latest Oregon physician-assisted suicide report   shows that 79.2% of those people dying by assisted suicide were age 65 or older and most reported concerns such as “loss of autonomy” and “burden on family, friends/caregivers”.

With Alzheimer’s disease routinely portrayed as the worst case scenario at the end of life for a person (and their family), there are now programs to “help” people plan their own end of life care.

Such programs include Death Cafes where “people drink tea, eat cake and discuss death” and the Conversation Project  that is “dedicated to helping people talk about their wishes for end-of-life care”. The Conversation Project was co-founded by journalist Ellen Goodman after years of caring for her mother, who had Alzheimer’s.

Compassion and Choices (the former Hemlock Society) is the largest and best funded organization working for decades to change laws and attitudes about assisted suicide and other deliberate death options. Compassion and Choices now has a contract rider for people in assisted living facilities that:

 “will respect Resident’s end-of-life choices and will not delay, interfere with nor impede any lawful option of treatment or nontreatment freely chosen by Resident or Resident’s authorized healthcare proxy or similar representative, including any of the following end-of-life options” which include:

“Forgoing or directing the withdrawal of life-prolonging treatments

Aggressive pain and/or symptom management, including palliative sedation,

Voluntary refusal of food and fluids with palliative care if needed

Any other option not specifically prohibited by the law of the state in which Facility is located.” (Emphasis added)

CONCLUSION

I have both a professional and personal interest in Alzheimer’s disease.

Having taken care of a mother with Alzheimer’s until her death, I treasure many of the moments I had with her. It is possible to both begin the eventual mourning and still appreciate the special moments that indeed do come. My mom was a very high-strung woman who constantly worried about everything. The Alzheimer’s calmed her down somewhat and especially blunted her anxiety about the presence of a tracheotomy for her thyroid cancer.

One of my favorite memories is sitting on a couch with my mom on one side and my then 2 year-old daughter on the other. Sesame Street was on and I noticed that both Mom and my daughter had exactly the same expression of delight while watching the show. A friend thought that was sad but I found it both sweet and profound that their mental capacities had intersected: One in decline, one in ascension. Perception is everything.

Also, I often took care of Alzheimer’s patients as a nurse and I enjoyed these patients while most of my colleagues just groaned. Even though such patients can be difficult at times, I found that there is usually a funny, sweet person in there who must be cared for with patience and sensitivity. I found taking care of people with Alzheimer’s very rewarding.

And although I might be at a higher risk of developing Alzheimer’s disease myself because of my mother, I won’t be taking a test for biomarkers to try to predict the future.

Instead, I will spend my time living the best life I can and hopefully helping others. I believe that life is too  precious to spend time worrying about things that might happen.