Year: 2020

Can a POLST be Hazardous to Your Life?

nancyvalko end-of-life, law, Living wills, medical ethics

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!

Euthanasia: Canada, Conscience and Coercion

nancyvalko assisted suicide, conscience rights, euthanasia, medical ethics, mental health

A January 22, 2020 CNA article titled “Perform Euthanasia or Lose Government Funding”, Canadian Hospice Told” revealed that a secular Canadian hospice was at risk of losing its government funding over its refusal to euthanize patients who request an “assisted death.”

How could this happen?

First of all, Canadian health care (known to Canadians as “medicare”) is 69% publicly funded for “medically necessary” care administered by the 13 provinces and territories with different rules. 31% of Canadian health care costs are paid by the private sector for services not covered or only partially covered by medicare, such as prescription drugs, dentistry and optometry.

The problems started when the Canadian Supreme Court legalized MAiD (Medical Assitance in Dying” in 2015.

Soon after, the province of Quebec drew up guidelines for MAiD and made “euthanasia kits” for lethal injections available to every doctor in Quebec. Now most MAiD deaths in Canada are done by lethal injection.

In September 2016, about three months after euthanasia became legal in Canada, British Columbia’s Fraser Health Authority ( the publicly-funded organization responsible for administering healthcare in British Columbia) introduced a new policy which required all hospices receiving more than 50% of provincial funding for their beds to offer euthanasia to their residents. However, the hospice was operated by the non-profit organization the Delta Hospice Society, which is opposed to Canada’s MAiD

One doctor said that there are “‘strong lobbies’ backing this new effort to expand MAiD into additional institutions which receive provincial funding, including faith-based hospitals or hospices.” (Emphasis added)

HOW ONE CATHOLIC HEALTH CARE FACILITY RESPONDED TO MAiD

Unfortunately and in 2018, the Catholic Covenant Health system in the province of Alberta, Canada released a revised MAID policy:

“after consultations with more than 100 individuals and groups including doctors, Catholic bishops, Alberta Health Services, the Alberta government, patient advisers, families, ethicists and community members.
Under the policy, witnessing and signing of legal documents and assessments of eligibility can take place on Covenant Health sites. Patients deemed eligible for MAID would still be transferred to other facilities.” (Emphasis added)

A current check of the Covenant website on MAiD shows no change in policy.

THE CANADIAN “SLIPPERY SLOPE” ALSO CONTINUES

In January, 2020 the Halifax Group, published “MAiD Legislation at a Crossroads: Persons with Mental Disorders as Their Sole Underlying Medical Condition” that supported MAiD not only for non-dying persons ” experiencing enduring, intolerable and irremediable suffering from physical conditions” but also for persons who have “a mental illness as their sole underlying medical condition.” (Emphasis added)

This month, The Expert Advisory Group responded to the Halifax group, warning that the Canadian medical suicide law is the “most permissive in the world”.

THE EFFECT OF MAiD ON DOCTORS AND NURSES

Last year, The Canadian Catholic Nurses joined the National Association of Catholic Nurses in opposing the American Nurses Association’s draft position for neutrality on physician-assisted suicide (unfortunately later approved) and gave a chilling look at what may be our future if legalized assisted suicide is not opposed:

“Our association formed in 2018 primarily in response to Canadian nurses’ moral distress regarding the nation-wide legalization of medically induced death.

Professional associations and licensing bodies across Canada endorsed the legal changes, requiring conscientious objectors to participate in “Medical Assistance in Dying” by “effective referral” to facilitate access at the patient’s request. Faith-based health care facilities are pressured to participate. Nurse practitioners are trained and qualified to prescribe and administer lethal doses of medication to patients that they or others deem eligible for euthanasia.”

and

The Canadian experience with assisted suicide and euthanasia provides evidence for your continued resistance to the practice.

Unlike Oregon, Canada has not experienced a growth in palliative care along with the rapid expansion of induced death. Instead, 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.”

A 2018 study “Medical assistance in dying (MAiD): Canadian nurses’ experiences” stated that:

“It is vital to understand how MAiD is influencing nurses in the Canadian context to ensure a smooth transition of this end‐of‐life care option across settings and communities. ” (Emphasis added)

The study acknowledges some nurses’ “moral distress” but describes “how participating in, or declining to participate in MAiD is shaping the participants’ perceptions of nursing as a profession“. The authors suggest promoting concepts like “Providing holistic care without judgment, Advocating choice, Supporting a good death” to positively reinforce  that MAiD was “not a significant departure from their professional goals”. (Emphasis added)

(Ironically, 77% doctors in Laval, Canada refused to provide MAiD 18 months after legalization with the most common reason that MAiD was “too much of an emotional burden to bear”.)

CONCLUSION

Last year it was reported that “More than one in every 100 deaths in Canada is administered by a doctor“ but that even this number is likely higher because parts of Canada currently do not report such deaths.

The numbers are also likely to get higher as the Canadian euthanasia laws expand the eligibility criteria and health care professionals worry about losing their jobs if they refuse to participate.

Unfortunately, most of the US mainstream media ignores the Canadian euthanasia experience while approvingly reporting on the increasing number of US states legalizing physician-assisted suicide.

What all of us need to understand is that the legalized killing of any patient ultimately leads to the destruction not only of the patient but also of a trustworthy health care system and a truly safe and civilized society.

Is there a “New” Catholic Medical Ethics?

nancyvalko end-of-life, futility, Living wills, medical ethics, nursing, palliative care, Simon's Law, terminal/palliative sedation

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.

Roe v Wade 47 Years Later

nancyvalko abortion, disability, law, medical ethics

Like everyone else I knew, no one expected the US Supreme Court’s case Roe v Wade to legalize abortion in 1973. I was shocked when the Court legalized abortion with virtually no restrictions during the first trimester stating:

“(a) For the stage prior to approximately the end of the first trimester, the abortion decision and its effectuation must be left to the medical judgment of the pregnant woman’s attending physician. Pp. 163, 164.
(b) For the stage subsequent to approximately the end of the first trimester, the State, in promoting its interest in the health of the mother, may, if it chooses, regulate the abortion procedure in ways that are reasonably related to maternal health. Pp. 163, 164.” (Emphasis added)

It wasn’t until much later that I learned about the Doe v Bolton case (decided at the same time as Roe) that expanded the definition of “health”, stating that the “medical judgment (for abortion) may be exercised in the light of all factors–physical, emotional, psychological, familial, and the woman’s age–relevant to the well-being of the patient. All these factors may relate to health.” (Emphasis added)

That redefinition of a woman’s health opened the expansion of abortion.

Unfortunately, those of us who expressed horror about these decisions were quickly derided by those who supported legalized abortion. Even those of us who were medical professionals and knew better felt intimidated.

MY PERSONAL EXPERIENCE WITH ABORTION AND ITS EFFECTS

When I became a mother a few years after the Roe v Wade decision and read the prenatal development pamphlet given to expectant mothers, my heart ached for those mothers who chose abortion without such crucial information.

Eventually, I had a daughter born with Down Syndrome and a severe heart defect as well as another daughter who became pregnant at 18. I could understand the fear and desperation underlying an abortion decision and I was determined to help in some way by joining the pro-life movement.

Because of the pro-life movement, I have been better able to help desperate mothers, children with disabilities and their families as well as other people in danger of being seen as “inconvenient”, “unwanted” or “better off dead”.

THE ABORTION TRAJECTORY AND HOW IT IS CHANGING

After the Roe decision, it didn’t take long before “abortion rights” to begin expanding and now we have at least 8 states legislating abortion on demand throughout pregnancy  as well as at least 19 states allowing abortionists to leave babies to die who survive abortion.

Most recently, pro-abortion Democrats have blocked efforts to get Congress to vote on the “Born-Alive Abortion Survivors Protection Act” and in my home state of Missouri, the last Planned Parenthood clinic is still fighting closure over its health violations.

But despite all this activity on the pro-abortion side, many states have enacted strong protections for mothers and their unborn babies. Even the pro-abortion Guttmacher Institute acknowledges that:

“In 2019, conservative state legislators raced to enact an unprecedented wave of bans on all, most or some abortions, and by the end of the year, 25 new abortion bans had been signed into law”

And an encouraging new Marist/Knights of Columbus poll  shows that a majority of Americans (65%) would vote for candidates who back abortion restrictions and nearly two-thirds of Americans oppose abortion if the child will be born with Down Syndrome.

In addition, there are more pregnancy help centers than abortion clinics to help women and their unborn babies.

CONCLUSION

As abortions are decreasing and the abortion movement is exposed for its radical goals, it appears that more and more people are seeing the truth about abortion and the pro-life movement. Personally, I have never felt more encouraged since the Roe v Wade decision 47 years ago and especially by the inspiring words of President Donald Trump, the first sitting president to address the annual March For Life in Washington, D.C.:

“We cannot know what our citizens yet unborn will achieve. The dreams they will imagine. The masterpieces they will create. The discoveries they will make. But we know this: every life brings love into this world. Every child brings joy to a family. Every person is worth protecting….

Together, we will defend this truth all across our magnificent land. We will set free the dreams of our people. And with determined hope, we look forward to all of the blessings that will come from the beauty, talent, purpose, nobility, and grace of every American child.”

Lethal Problems with Medical Futility and Disability Bias

nancyvalko futility, law, medical ethics, nursing, Simon's Law

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.