Home Health Care and Safety in the Age of Covid 19

In the 1990s, I reluctantly had to leave my hospital position in oncology after an  operation on my right foot surgery that left me unable to stand on my feet for even just a few hours. I decided to go into home health  to support my children and possibly help my foot heal.

Surprisingly, I found that I loved home health nursing and I learned a lot that even helped my patients when I was finally able to resume hospital nursing some years later.

Home health nursing wasn’t an easy job even back then. I drove up to 200 miles some days to care for just about every kind of patient from medical patients just needing blood work to hospice patients and even a young man unable to move below his neck after a diving accident. But I loved the independence and really getting to know my patients and helping them in their own environment.

In May, I wrote a blog “Covid 19 and Nursing Homes” about friends of mine who refused to go to extended care nursing facilities because of the outbreaks of Covid 19 which are especially dangerous to the elderly. Instead, these friends chose to stay home with help from home health caregivers, family and/or friends.

I wondered how home health nursing was now coping with the pandemic.

HOW COVID 19 IS CHANGING HOME HEALTH CARE

A May 18, 2020 article written by 3 geriatricians and titled “How coronavirus could forever change home health care, leaving vulnerable older adults without care and overburdening caregivers” reveals how Covid 19 is now changing a sector of health care that has received little attention during the pandemic.

According to the article, over 5 million people in the US are currently receiving paid home care from personal care assistants, home health aides, nurses and therapists. But even before Covid 19, there were not enough of these health care workers.

As the geriatricians write:

 “(N)ow, not only must home care continue for older adults, and for those with disabilities, but many people with COVID-19 will need it too”.

While home health care reduces the stress on hospital systems, Covid 19 means that home health care is facing new challenges.  Because home health workers travel to multiple homes and people, this increases the risk of possible Covid 19 transmission both for the workers and their often frail and older patients. How can health care workers and their patients both stay safe during the pandemic?

The geriatricians researched the problem and came up with 10 recommendations to  deal with Covid 19 and also improve home health care.

These recommendations include access to personal protective equipment (PPE), regular COVID-19 testing for both staff and patients,  Centers for Medicare and Medicaid Services (CMS) expanding the definitions of “home health” and “homebound” to include “personal care” to help more patients, as well as increasing federal funding for community health workers.

They also recommend more flexibility using options like telehealth which has been particularly useful for one of my older friends.

ONE BIG REASON WHY I LEFT HOME HEALTH NURSING

Although this article did not address this issue, one of the big reasons I finally left home health when my foot improved was the danger of working in a large city like St. Louis that has several high-risk areas as well as the roving packs of wild dogs  that were a problem at the time.

I often saw patients in these areas and sometimes even during the night when I was on call for the agency. On occasion, even the police stopped some of us nurses when were going in to see a patient in these high-risk areas and they offered to wait outside until we returned. I especially appreciated this because as a single mother, I was concerned about what could happen to my children if anything happened to me.

Personally, I saw guns in some households, was cut off by some young men trying to stop my car, dealt with some suddenly psychotic patients, tried to mitigate domestic disturbances, etc. Some areas were so high-risk that I took the fire escape for safety reasons rather than use the elevator to get to my patients’  apartments.

It took many attempts before we nurses finally got our agency to help us get pepper spray and provide a security person to accompany us nurses to high-risk areas when we felt it was necessary.

But sadly, I could never consider going back to home health now with the protests, riots and escalating violence we are seeing in many cities like St. Louis and other areas.

I fervently hope and pray that the important issues that are tearing our country apart will soon be resolved for the safety of all of us.

Especially because I am a nurse, I do know how much every life matters.

Ventilator Rationing, Universal DNRs and Covid 19 (Coronavirus)

As a nurse myself, it is hard to watch my fellow nurses bravely fighting on the front lines of this pandemic without being able to be there with them.

Nurses are a special breed. In my over 50 years as a nurse, I found that most of us chose nursing because we want to help people and alleviate suffering. We work the long hours on our feet, skip meals, hold hands and listen, cry when our patients die, etc. because we truly do care.

But the health care system has been changing. A dark new ethics movement is infecting our system and telling us not only that our patients have a right to choose to end their lives but also that some of our patients even “need” to die and that we can’t care for all of them during the Covid 19 pandemic.

Worst of all, we are being told that we can now know how to decide which patients are “expendable”.

VENTILATOR RATIONING

A 71 year old man with a heart condition arrives at a hospital is diagnosed with Covid 19. His condition worsens and he is placed on a ventilator to help him breathe. Then the infection rate spikes in the city and the hospital is overrun with severely ill patients, many between 20 and 50 years old and otherwise healthy.

The health care team is forced to decide which patients should they focus on and care for.

This is the scenario posed in a March 20, 2020 Medpage article “Ethics Consult: Take Elderly COVID-19 Patient Off Ventilator?— You make the call” along with an online survey with 3 questions:

1. Would you prioritize the care of healthier and younger patients and shift the ventilator from the elderly man to patients with a higher probability of recovering?
2. Would you change your decision if the elderly patient had been in intensive care for a non-COVID-19-related illness?
3. Would you prioritize the older man over college students who had likely been
infected during spring break trips?

After almost 4000 votes, the survey showed 55.65% voting yes on prioritizing the care of the healthier and younger patients, 78.11% voting no on changing their decision about the elderly patient if he didn’t have Covid 19 and 71.12% voting no on prioritizing the elderly man over college students likely to have been infected on a spring break trip.

So while most people fear becoming infected with Covid 19, less well-known ethical dangers may also affect us-especially those of us who are older or debilitated.

Every day, we hear about the shortage of ventilators needed for Covid 19 patients and the overworked and understaffed health care professionals providing the care. Now both mainstream media and medical journals are publishing articles about the ethical dilemma of denying CPR (cardiopulmonary resuscitation) or a ventilator to older patients or those with a poor prognosis with Covid 19 in a triage situation.

Triage is defined as “A process for sorting injured people into groups based on their need for or likely benefit from immediate medical treatment. Triage is used in hospital emergency rooms, on battlefields, and at disaster sites when limited medical resources must be allocated.” (Emphasis added)

But this definition does NOT include deciding how to triage people based on age or “productivity”.

UNIVERSAL DNRs

A March 25, 2020 Washington Post article “A Framework for Rationing Ventilators and Critical Care Beds During the COVID-19 Pandemic” posed the question: “how to weigh the ‘save at all costs’ approach to resuscitating a dying patient against the real danger of exposing doctors and nurses to the contagion of coronavirus.”

This is not just an academic discussion.

As the article reveals, “Northwestern Memorial Hospital in Chicago has been discussing a do-not-resuscitate policy for infected patients, regardless of the wishes of the patient or their family members — a wrenching decision to prioritize the lives of the many over the one.” (Emphasis added) And Lewis Kaplan, president of the Society of Critical Care Medicine and a University of Pennsylvania surgeon, described how colleagues at different institutions are sharing draft policies to address their changed reality.

Bioethicist Scott Halpern at the University of Pennsylvania is cited as the author of one widely circulated model guideline being considered by many hospitals. In an interview, he said a universal DNR for Covid 19 patients was too “draconian” and could sacrifice a young person in otherwise good health. He also noted that the reality of health-care workers with limited protective equipment cannot be ignored. “If we risk their well-being in service of one patient, we detract from the care of future patients, which is unfair,” he said.

The article notes that “Halpern’s document calls for two physicians, the one directly taking care of a patient and one who is not, to sign off on do-not-resuscitate orders. They must document the reason for the decision, and the family must be informed but does not have to agree.” (Emphasis added)

This could not only upend traditional ethics but also the law as “Health-care providers are bound by oath — and in some states, by law — to do everything they can within the bounds of modern technology to save a patient’s life, absent an order, such as a DNR, to do otherwise.”

Both disability and pro-life groups have condemned such health care rationing with Covid 19, especially for older people and people with disabilities.

However, this and more is apparently already happening.

In an April 1, 2020 Wall Street Journal article “What the Nurses See: Bronx Hospital Reels as Coronavirus Swamps New York” a co-worker told the nurse interviewed that the nurses were no longer doing chest compressions to resuscitate Covid 19 patients because “it uses lots of protective gear and puts workers at greater risk than chemical resuscitations”. This was corroborated by other nurses who said this has become an “unspoken rule.”

CONCLUSION

How can we protect ourselves and our loved ones in these circumstances?

At the very least and whether or not we are older or have disabilities, we should consider or reconsider our advance directives.

As the Life Legal Defence Foundation  writes in their “SPECIAL MESSAGE ABOUT COVID-19 AND ADVANCE HEALTH CARE DIRECTIVES”:

As COVID-19 spreads around the globe, the public is learning about the importance of mechanical ventilators in providing temporary breathing support for many of those infected. Ventilators are saving lives!

A false understanding of respirators and ventilators has become commonplace in recent years. Many people think that these and similar machines’ only role is prolonging the dying process. The widely publicized treatment of COVID-19 patients is helping to dispel that myth. Many patients rely on machines temporarily every day for any number of reasons and go on to make full recoveries.

Unfortunately, many individuals have completed advance health care directives stating or suggesting that they do not wish to receive breathing assistance through mechanical ventilation.

Please take the time to review any advanced medical directives (including POLST forms) signed by you or your loved ones to make sure they are clear that mechanical ventilation is not among the forms of care that are refused. If there is any ambiguity, you may want to consider writing, signing, and dating an addendum specifying that mechanical ventilation is authorized. (Emphasis in original)

I would add that other treatments or care such as DNRs and feeding tubes also not be automatically checked off. I believe it is safer to appoint a trusted person to insist on being given all information concerning risks and benefit before permission is given to withdraw or withhold treatment.

Even as the nation is racing to get more ventilators and staff as we cope with this terrible pandemic, we all must continue to affirm the value of EVERY human life.

 

Is there a “New” Catholic Medical Ethics?

A few years ago, a middle-aged prolife nurse friend of mine had a sudden cardiac arrest after her mother died but was resuscitated. She was taken to the same Catholic hospital where I received my nursing education. She wound up sedated and on a ventilator to help her breathe, along with a feeding tube. Her 24 year old son wanted all efforts made to save her and several of us volunteered to help if and when she returned home.

Instead and after a week or  two, her son was urged to remove her ventilator but, even then, she kept breathing even with the sedation medication used to control her tremors. But the son was horrified to see that her feeding tube was removed at the same time as the ventilator and against his wishes. The staff insisted that he agreed to this and that it was documented in the computer. He insisted he never agreed to this and demanded that the feeding tube be reinserted but the staff said they could not without a doctor’s order.

The son stayed for hours waiting for a doctor but the staff said the doctor was busy. A nurse from hospice came in and pushed for hospice but the son said he wanted to take his mother home eventually so he and the volunteers could care for her. The hospice nurse then told him that his mother was dying and her organs were failing.

I happened to be there at the time and, as a critical care nurse myself, I told the hospice nurse that I saw that my friend’s vital signs were normal and her kidneys were obviously functioning. I also questioned the dangerous increase in her sedation medication after her ventilator was removed because it could suppress her breathing. I was ignored. With a heavy heart, I lhad to leave to work my night nursing shift at another hospital but I told the son to call me if the doctor did not come.

The next morning, the son called me to tell me that the hospital just called to tell him his mother was dead.

He had stayed for several hours after I left but finally went home to get some sleep, thinking his mother was stable. He was devastated to later learn that his mother had been transferred to hospice against his wishes after he left. My friend then died a few hours later. She never got her a feeding tube or her sedation lowered or stopped. And she tragically died alone.

I still have nightmares about this.

THE “NEW” CATHOLIC MEDICAL ETHICS

While medically futile treatment has long been accepted as medically useless or gravely burdensome to the person, we now see a new bioethics with “quality of life”, economics, societal and family burdens, etc. included in the determination of medical futility.

This January, I was horrified to find that the influential Catholic magazine Commonweal published an article titled “Giving Doctors a Say-Futility and End-of-Life Ethics”  that also injects “respect for physicians as moral agents” to defend the rationale behind the (often secret) futility policies in Catholic hospitals  by citing cases like the Charlie Gard and Simon Crozier cases where medical care was removed from two infants with life-threatening conditions against the parents’ wishes.  In Charlie Gard’s case, the medical care was withdrawn by court order and in Simon Crozier’s case the medical care was withheld without the parents knowledge. Both boys died.

Tragically, the outrageous Simon Crosier case occurred in the same Catholic hospital where I once worked and where my daughter with Down Syndrome and a critical heart defect was made a Do Not Resuscitate behind my back and against my expressed wishes.

As a nurse and a mother, I was shocked by the Commonweal article but not surprised.

I have been writing about the deterioration in medical ethics even in Catholic institutions for many years.

In the Commonweal article, Michael Redinger (co-chair of the Program in Medical Ethics, Humanities at Western Michigan University , and Law} defends medical futility and criticizes the Simon’s Law passed in the Missouri legislature last year to prohibit “any health care facility or health care professional from instituting a do-not-resuscitate or similar order without the written or oral consent of at least one parent or legal guardian of a non-emancipated minor patient or resident”.  (Emphasis added)

Instead, Professor Redinger writes that “These efforts, collectively referred to as ‘Simon’s Law’ legislation, are well-intentioned but misguided”.

His Commonweal article concludes that:

“Given the coordinated efforts of Right to Life groups across the country and their ties to the Catholic Church, it is necessary to begin a broader conversation about the incompatibility of such laws with church teaching. Such a conversation would help guide individual Catholics at the end of life, and support Catholic bishops in their oversight of Catholic hospitals. Even better, it would relieve the medical staff at Catholic hospitals from the immense moral distress that comes from violating our oath to do no harm.” (Emphasis added)

 

HOW COULD THIS HAPPEN?

After years of research and my own experiences with Catholic hospitals and staff, I have seen the tremendous influence of the Catholic Health Association which boasts that it’s health care ministry comprises more than 600 hospitals and 1,600 long-term care and other health facilities in all 50 states,  When I received my nursing education in a Catholic hospital in the late 1960s, 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 as our standard of excellence.

But now, as Catholic Health Association ethicists Fr. Patrick Norris and the late Fr. Kevin O’Rourke have stated in 2007 regarding futility :

“end-of-life decisions exemplify the principle of double effect, (wh)erein the withholding/withdrawing of life support is either morally good or neutral, the intention of the act being to remove either an ineffective or gravely burdensome treatment. The evil effect of the death is not a means to achieving the good effect (avoiding an inappropriate treatment), and, given appropriate circumstances, the good achieved is commensurate with the harm that occurs as a foreseen but unintended effect of a good action. The invocation of the principle of double effect in these cases properly distinguishes between physical causality and moral culpability.” (Emphasis added)

CONCLUSION

I have been called by many distraught relatives who have said they thought their loved one was “safe” in a Catholic hospital but saw problems. One case involved an older woman who had a stroke (cerebral vascular accident) and was in a coma and expected to imminently die but continued to live several days later with normal vital signs. The woman had a pro-life living will to reject life-sustaining treatment, including a feeding tube, if she had a “terminal event” and was imminently dying. The relative wanted to know if this was indeed a “terminal event”.

I asked if the woman was on a morphine infusion. She was and hadn’t seemed to be in pain. I explained that the sedation could account for her coma and suggested that they ask the doctor about trying to slow or stop the morphine to see.

The relative called back to say that the morphine was stopped and that the woman started to wake up and even seemed to recognize them. However, the Catholic chaplain told the woman’s sister who was her power of attorney for health care that her apparent response was only a reflex. The sister ordered the morphine turned back on.

The family was upset and considered legal action but decided that this would split the family so they gave up. Not surprisingly, the woman eventually died 2 weeks later.

After this case, I later wrote a blog “Living with ‘Living Wills’ about the little-known pitfalls of advance directives and how they could work against what a person wants.

The bottom line is that everyone must remain vigilant when they or a loved one becomes seriously ill, regardless of the hospital or institution. It is also important not to be afraid to ask questions.

There are also non-denominational, non-profit groups like Hospice Patients Alliance  and the Healthcare Advocacy and Leadership Organization (I am on the advisory board) that have much useful information and resources for patients, families and the public.

But without a change in policies and attitudes, those of us medical professionals who believe we should never cause or hasten death may become an endangered species as well as our medically vulnerable patients.

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.

 

 

 

 

 

 

 

 

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.

 

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.

American Nurses Association Damages Good Nursing with Misleading “No Stance” on Assisted Suicide

In 2017 and despite opposition by nurses and groups like the National Association of Pro-life Nurses, the American Nurses Association (ANA) approved a new position on “Nutrition and Hydration at the End of Life” supporting a form of suicide called VSED ( voluntary stopping of eating and drinking) to “hasten death”.

The ANA also stated regarding VSED that nurses who have “an informed moral objection….should communicate their objections whenever possible, to provide safe alternative nursing care for patients and avoid concerns of patient abandonment” (Emphasis added)

In March 2019, the American Nurses Association (ANA) then wrote a draft position paper “The Nurse’s Role When a Patient Requests Aid in Dying” that would have dropped the ANA’s long-standing opposition to physician-assisted suicide and even change the term “physician-assisted suicide” to “medical aid in dying”. The paper would require nurses to be “non-judgmental when discussing end of life options with patients”, and that nurses who object to assisted suicide are still “obliged to provide for patient safety, to avoid patient abandonment, and to withdraw only when assured that nursing care is available to the patient.

In other words, nurses would have to abandon their vital role in the prevention and treatment of people with suicidal ideation for some of their patients when the issue is assisted suicide. Conscience rights could only be invoked if free from “personal preference, prejudice, bias, convenience, or arbitrariness”. (Emphasis added)

Many people responded with shock and dismay, including many nursing organizations like the National Association of Pro-life Nurses and even the Canadian Catholic Nurses Association  that warned about their experience after assisted suicide was legalized there in 2015:

“we experience ongoing demands for access to lethal injections for new categories of patients, including “mature minors;” those who write advanced directives; and those whose mental illness is the sole condition underlying their request.” (Emphasis added)

THE FINAL POSITION

Now the ANA has issued its final position on “The Nurse’s Role When a Patient Requests Medical Aid in Dying” (aka physician-assisted suicide) that claims it is not “a stance for or against medical aid in dying but rather to frame the nurse’s compassionate response within the scope of practice”. (Emphasis added)

However, this new final position has the same problems as the draft when it states that a nurse should:

 “Remain objective when discussing end-of-life options with patients who are exploring medical aid in dying”

And now, a new requirement is added for the nurse who objects to participating in assisted suicide:

“Never ‘abandon or refuse to provide comfort and safety measures to the patient’ who has chosen medical aid in dying. Nurses who work in jurisdictions where medical aid in dying is legal have an obligation to inform their employers that they would predictively exercise a conscience-based objection so that appropriate assignments could be made.” (All emphasis added)

This obligation to preemptively inform employers about objections to participating in terminating life opens a nurse to potential discrimination, bullying or even termination of employment, not to mention the chilling effect on ethical men and women considering a nursing career.

CONCLUSION

In its press release on the final position, the ANA states that its new position is “a step in a new direction for ANA and provides guidance for almost 1 million registered nurses in the U.S. who practice in the nine jurisdictions where medical aid in dying (MAID) is legal.” The ANA also states that “This statement is intended to reflect only the opinion of ANA as an organization regarding what it believes is an ideal and ethical response based on the Code of Ethics for Nurses with Interpretive Statements.” (All emphasis added)

However, the ANA also claims that it ‘is the premier organization representing the interests of the nation’s 4 million registered nurses’ even while  less than ten percent of the nation’s nurses are members of the ANA or other professional organizations” and that number is declining.

The ANA along with the American Medical Association (AMA) are the best known health care professional organizations and both are very politically active.

Ironically and just last month, the AMA House of Delegates decisively reaffirmed the AMA’s long-standing opposition to assisted suicide while the ANA has now surrendered its influence to the pro-assisted suicide movement.

Just as bad, the ANA has now effectively abandoned ethical nurses’ conscience rights when it comes to deliberate death decisions.

Although we now have the Conscience and Religious Freedom Division established by the Trump administration in the Office for Civil Rights to enforce already existing “federal laws that protect conscience and the free exercise of religion and prohibit coercion and discrimination in health and human services” and has a link to file a conscience or religious freedom complaint, it’s final rule implementation has now been delayed by lawsuits.

As assisted suicide and other such deliberate death decisions continue trying to expand, it is more necessary than ever that all of us-the public as well as healthcare professionals-understand and fight the pro-death movement to regain our trust in the healthcare system.

Press Release: The National Association of Pro-life Nurses comments on recent AMA decision

The National Association of Pro-life Nurses comments on recent AMA decision

This month, the AMA House of Delegates overwhelmingly approved a strong report from AMA’s Council on Ethical and Judicial Affairs reaffirming current AMA policy on physician-assisted suicide stating that:

“permitting physicians to engage in assisted suicide would ultimately cause more harm than good. Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks. Instead of engaging in assisted suicide, physicians must aggressively respond to the needs of patients at the end of life.”

This happened despite the enormous pressure from assisted suicide supporters and groups like Compassion and Choices as well as some other professional associations to change its’ long standing opposition to physician-assisted suicide to “neutrality”.

But this is not just about doctors.

Earlier this year the American Nurses Association (ANA) wrote a draft position paper about also dropping its longstanding opposition to assisted suicide. The ANA draft paper also proposed changing the term “assisted suicide” to ““aid in dying”, requiring that nurses to be “non-judgmental when discussing end of life options with patients”, and that nurses who object to assisted suicide are still “obliged to provide for patient safety, to avoid patient abandonment, and to withdraw only when assured that nursing care is available to the patient.”  (Emphasis added)

In other words, nurses must abandon their vital role in detecting and preventing suicide for some of their patients when the issue is assisted suicide. This kind of discrimination is not only lethal to the patient but also discourages dedicated, ethical people from entering or remaining in the healthcare professions.  The National Association of Pro-life Nurses strongly opposed the proposal due to conscience concerns raised by it.  The objections can be found on the NAPN website, www.nursesforlife.org.  No formal position has yet been taken.

Although most doctors and nurses are not members of the ANA or AMA, if such organizations capitulate to the pro-assisted suicide groups, legalized assisted suicide throughout the US may be inevitable.

Hopefully, the ANA will follow the AMA example of continued opposition to assisted suicide and begin to restore the public’s trust that we will never kill our patients or help them kill themselves.

Contact

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

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

Great News: American Medical Association Votes to Continue Opposition to Physician-assisted Suicide. But Will the American Nurses Association Follow?

Over the last few years the American Medical Association (AMA) has been under enormous pressure from assisted suicide supporters and groups like Compassion and Choices as well as some other professional associations to change its’ long standing opposition to physician-assisted suicide to “neutrality”.

This month, the AMA House of Delegates decisively approved a strong report from AMA’s Council on Ethical and Judicial Affairs reaffirming current AMA policy on physician-assisted suicide stating that:

“permitting physicians to engage in assisted suicide would ultimately cause more harm than good. Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks. Instead of engaging in assisted suicide, physicians must aggressively respond to the needs of patients at the end of life.”

Dr. Shane Macaulay, MD, of Kirkland, Wash., speaking for the Washington delegation supported the report, stating that:

“Oregon legalized assisted suicide in 1997 with repeated assurances that it would stay contained and would not become euthanasia” (but) “Just last month, the Oregon state House of Representatives approved a bill to allow patient death by lethal injection, showing the inevitable progression from assisted suicide to euthanasia once physicians have accepted the idea that taking a patient’s life is permissible.”

Dr. David Grube, the national medical director of the pro-assisted suicide organization Compassion and Choices, countered that physician-assisted suicide is:

“a rarely-used request from patients, and yet it’s a response we can give to them when they’re suffering. The enemy is not death, but the enemy is terminal suffering; responding to that in ways that provide comfort is what matters the most.”

Ironically, physician-assisted suicide laws themselves do not require that pain or other suffering be present but rather death expected within six months.

In the Compassion and Choices article titled “AMA contradicts itself by passing resolution saying medical aid in dying is unethical, but ethical doctors can practice it”, Dr. Grube further criticizes the decision, saying:

“The report by the AMA Council on Ethical and Judicial Affairs (CEJA) reinterpreted the AMA’s Code of Medical Ethics (CEJA) by maintaining that ‘physician-assisted suicide’ (i.e., medical aid in dying) is ‘fundamentally incompatible with the physician’s role as healer,’ while paradoxically saying physicians can provide medical aid in dying ‘according to the dictates of their conscience without violating their professional obligations.’” (Emphasis added)

However, the report itself concluded that:

“Because Opinion E-5.7O   powerfully expresses the perspective of those who oppose physician-41 assisted suicide, and Opinion E-1.1.7   (on the exercise of conscience) articulates the thoughtful moral basis for those who support assisted suicide, the Council on Ethical and Judicial Affairs recommends that the Code of Medical Ethics not be amended, that Resolutions 15-A-16 and 14-A-17 (on neutrality) not be adopted, and that the remainder of the report be filed.”

As I wrote in my 2016 blog “Neutrality Kills”:

In 1997, Oregon became the first state to pass a physician-assisted suicide law. This came after the Oregon Medical Association changed its position from opposition to neutrality. 21 years later and after multiple failed attempts, the California state legislature approved the latest physician-assisted suicide law after the California Medical Association changed its opposition to neutrality.

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

BUT THIS IS NOT JUST ABOUT DOCTORS

Earlier this year the American Nurses Association (ANA) wrote a draft position paper  about dropping its longstanding opposition to assisted suicide. The ANA draft paper also proposed changing the term “assisted suicide” to ““aid in dying”, requiring that nurses to be “non-judgmental when discussing end of life options with patients”, and that nurses who object to assisted suicide are still  “obliged to provide for patient safety, to avoid patient abandonment, and to withdraw only when assured that nursing care is available to the patient.” (Emphasis added)

In other words, nurses must abandon their vital role in detecting and preventing suicide for some of their patients when it comes to assisted suicide. This kind of discrimination is not only lethal to the patient but also discourages dedicated, ethical people from entering or remaining in the healthcare professions.

Although most doctors and nurses are NOT members of the ANA or AMA, if such organizations capitulate to the pro-assisted suicide groups, legalized assisted suicide throughout the US may be inevitable.

Hopefully, the ANA will follow the AMA example of continued opposition to assisted suicide and begin to restore the public’s trust that we will never kill our patients or help them kill themselves.