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.

 

Can a POLST be Hazardous to Your Life?

First, we had the “living wills” developed in the 1970s by the Euthanasia Society US (later renamed the Society for the Right to Die) to allow people to states their wishes for or-most importantly-against certain medical treatments in case they become unable to communicate their decisions. By 1991, The Patient Self-Determination Act was passed and every health care facility was required to ask every patient if they had such a document.

Today, we have many types of such documents including the newest one called the “Physician Orders for Life-Sustaining Treatment” (POLST)  that was developed in Oregon (the first state to legalize physician-assisted suicide) in 1991.

A POLST is a short document that people can carry with them with checkoffs for CPR (cardiopulmonary resuscitation) and tube feedings. And if the person is still alive but unable to communicate, the POLST has checkoffs for whether the person wants “Comfort measures only”, “Limited Interventions” like antibiotics and IV fluids, or “Full treatment”.

Although efforts to pass a national POLST law have failed so far, many states have passed their own versions that lead to serious concerns.

Most recently, Illinois is now considering a POLST bill SB 3524 that amends and expands the previous Health Care Surrogate Act.

Among the changes in the Illinois bill are changing “qualified physician” to “qualified health care practitioner” which  “means an individual who has personally examined the patient and who is an Illinois licensed physician, advanced practice registered nurse, physician assistant, or licensed resident after completion of one year in a qualified graduate medical education program”. (Emphasis added)

The bill also removes the requirement of a witness to the signature of the person, legal guardian or health care surrogate on the POLST form. This is an important requirement to be reasonably certain that the POLST reflects the person’s wishes.

The bill  defines a person’s “qualifying conditions” for a POLST as “Terminal condition”, “Permanent unconsciousness”, or “Incurable or irreversible condition” (a definition that alarms many disability groups).

The bill also defines “Life-sustaining treatment” as “any medical treatment, procedure, or intervention that, in the judgment of the attending physician, when applied to a patient with a qualifying condition, would not be effective to remove the qualifying condition or would serve only to prolong the dying process“. (Emphasis added)

Also, the bill states that the health care provider acting on the POLST in “good faith” is not “subject to any criminal or civil liability, except for willful and wanton misconduct, and may not be found to have committed an act of unprofessional conduct.” (Emphasis added)

A February 16, 2020 editorial in the Journal of the American Medical Association titled “Physician Orders for Life-Sustaining Treatment and Limiting Overtreatment at the End of Life” had this chilling observation about physicians’ attitudes and POLSTs:

Even with the best of counseling, some patients will refuse any limitations of treatment—36% of the patients in the study by Lee et al1 had POLSTs that indicated “full treatment,” presumably including admission to the ICU, mechanical ventilation, and cardiopulmonary resuscitation, if necessary. While receipt of these therapies would be considered POLST-concordant care, clinicians sometimes object to providing care that they perceive will be unbeneficial or even harmful. These conflicts between clinicians and patients or their surrogates are a common problem in ICU care and are seen as a major contributor to distress and frustration among clinicians.” (Emphasis added)

CONCLUSION

A 2013 article “The Problem with POLST – Physician Orders for Life-Sustaining Treatment” succinctly describes the problems with POLST and what we should instead be striving for:

“POLST only makes sense in cases of patients with terminal illnesses, in end stage disease with no real options. By that point in time there are no therapeutic treatment decisions to be made. Yet, a patient who is under treatment who is living with a disease, there are alternative treatment decisions to be made. There are risks to weigh and an up to date informed consent required. It cannot be left up to a patient to research new literature and evidenced based medical standards.

POLST even precludes an assessment by a paramedic to make any decisions on overall survivability at the time of emergency care in the field. Surrogate decision makers are not consulted, advance health directives are not read or considered, and second opinions are not sought. Intelligent and experienced assessments are precluded by POLST. In cases of non-terminal patients POLST does not respect society’s moral mandate to respect life and instead treats life cavalierly by simply pinning a card on a person’s chest with life and death decisions of timely and clear origin.” (Emphasis added)

As a former hospice, oncology and ICU nurse, I wholeheartedly agree!

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.

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 Academy of Family Physicians Urges the American Medical Association to Drop Opposition to Physician-assisted Suicide

Compassion and Choices, the former Hemlock Society and now well-funded promoter of assisted suicide and other death “choices”, is celebrating the new resolution by the American Academy of Family Physicians (AAFP) to oppose the American Medical Association’s (AMA) long-standing opposition to assisted suicide.

The AFFP, the second largest component society of the AMA with over 131,000 members, just approved a new resolution adopting a position of  “engaged neutrality toward medical-aid-in-dying (aka physician-assisted suicide) as a personal end-of-life decision in the context of the physician-patient relationship.” (Emphasis added)

But as Dr. Rebecca Thoman, campaign manager for Doctors for Dignity for Compassion and Choices explained when the Massachusetts Medical Society adopted the same policy in 2017:

A “‘neutral engagement’ position is even better than a simply neutral position. It means if Massachusetts enacts a medical aid-in-dying law, the medical society will offer education and guidance to physicians who want to incorporate medical aid in dying into their practices.” (Emphasis added)

Now, yet another physician-assisted suicide bill is expected to be introduced next year in the Massachusetts legislature.

The AAFP resolution also stated that:

“By supporting the AMA’s opposition to medical aid in dying, some members feel the AAFP is telling them that they are unethical

and that

“the American Academy of Family Physicians reject(s) the use of the phrase ‘assisted suicide’ or ‘physician-assisted suicide’ in formal statements or documents and direct(s) the AAFP’s American Medical Association (AMA) delegation to promote the same in the AMA House of Delegates.” (Emphasis added)

CONCLUSION

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

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

Still, it was a surprise that in June 2018, the American Medical Association House of Delegates rejected the AMA’s Council on Ethical and Judicial Affairs (CEJA) strong report recommending that the AMA continue its long standing policy opposing physician assisted suicide. Instead the delegates “voted 314-243 to refer the matter back to the trustees for further deliberation”.

With the crucial help of a supportive media, Compassion and Choices started this momentum towards acceptance of physician-assisted suicide and other death choices like VSED (voluntary stopping of eating and drinking), terminal sedation and withdrawal of even spoon-feeding, affecting not just doctors but also nurses and other health care professionals and institutions.

In addition, Compassion and Choices also opposes conscience rights, even stating that  the new Federal Conscience and Religious Freedom Division:

“is not about freedom; it’s about denying patient autonomy. Under their proposed rules, providers are encouraged to impose their own religious beliefs on their patients and withhold vital information about treatment options from their patients — up to, and including, the option of medical aid in dying. And your federal tax dollars will be used to protect physicians who make the unconscionable decision to willfully withhold crucial information regarding their care from a patient and abandon them when they are most vulnerable.” (Emphasis added)

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

When the most basic medical ethic of not killing patients or helping them to kill themselves can be discarded in favor of “choice” or “quality of life”,  none of us of us can afford to be neutral- or silent-on this life or death issue.