end-of-life

Covid 19 and Nursing Homes

nancyvalko Covid 19, end-of-life, law, medical ethics

Recently, two good friends of mine with physical limitations who had been waiting for over a year to enter a carefully chosen assisted living/long term healthcare facility changed their minds about going. They found out that the facility had at least one resident with Covid 19. They are now staying at home with help from their sons, friends and a paid caregiver.

And my 97 year old friend Melissa with heart and mobility problems is adamant about staying at home to be cared for, primarily by her wonderful family. Recently, she developed a disturbing symptom but instead of going to her doctor as usual, her doctor was able to come to her via a telehealth visit by computer. Melissa is happy at home and knows that other options like home hospice are available if necessary.

Are these three people overreacting about nursing homes?

In my opinion, the answer is probably no at this time.

Unfortunately, long-term health facilities for the elderly have become hotbeds for Covid 19 despite those residents being the most at risk during the pandemic. A number of  staff at those facilities have also caught Covid 19 and some have also died.

Even worse, as NBC News reported April 25, 2020:

“Three states hit hard by the pandemic — New York, New Jersey and California — have ordered nursing homes and other long-term care facilities to accept coronavirus patients discharged from hospitals.” (Emphasis added)

On May 6, 2020, the Wall Street Journal reported that New York nursing homes may have nearly 5,000 Covid-19 related deaths and the next day, the California Mercury News  reported that  “at least 41 percent of all known coronavirus deaths in California have occurred among residents and staff of nursing homes and assisted living facilities.” (Emphasis added)

And, unfortunately, these same people are usually dying alone due to restrictions for even family members in hospitals and nursing homes. Sadly, even funerals are changing with new restrictions for ceremonies and mourners.

According to an April 21, 2020 article “Nursing Homes Balk at COVID Patient Transfers From Hospitals” by the American Association for Retired Persons (AARP):

“The American Health Care Association says discharged hospital patients should return only to nursing homes with separate COVID-19 units. Ideally, those units are staffed with employees with access to personal protective equipment. The federal Centers for Medicare & Medicaid Services (CMS), which regulates nursing homes, endorsed the idea of separate COVID units this month.” (Emphasis added)

CONCLUSION

I was personally shocked to discover that  only  23 states publicly reported data for cases and deaths due to COVID-19 in long-term care facilities  as of April 23, 2020.

However, the Trump administration has recently announced upcoming new regulatory requirements that:

“will require nursing homes to inform residents, their families and representatives of COVID-19 cases in their facilities. In addition, as part of President Trump’s Opening Up America, CMS will now require nursing homes to report cases of COVID-19 directly to the Centers for Disease Control and Prevention (CDC).” (Emphasis added)

When my mother with Alzheimer’s disease was dying from cancer in 1988, there was no pandemic and we cared for her at home as long as possible before placing her in a nursing home nearby for safety reasons. So I do know that nursing homes and other long-term care facilities can be wonderful and even necessary options.

But until this pandemic dissipates, we need all the essential information  necessary to protect and advocate for the most vulnerable among us.

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!

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.

Can Getting a DNR Tattoo be Hazardous to Your Health?

nancyvalko advance directives, end-of-life, futility, law, medical ethics

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

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

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

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

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

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

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

The poll question and results from the 1580 votes were:

“Do you comply with the DNR tattoo or not?

Yes: 43.04%

No: 56.96%”

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

PROBLEMS WITH DNR ORDERS

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

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

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

CONCLUSION

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

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

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

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

 

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

nancyvalko assisted suicide, Compassion & Choices, end-of-life, euthanasia, medical ethics

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

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

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

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

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

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

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

OPPOSITION TO THE PCHETA BILL CONTINUES

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

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

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

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

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

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

CONCLUSION

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

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

nancyvalko assisted suicide, economics, end-of-life, hospice, law, medical ethics, palliative care, terminal/palliative sedation

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

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

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

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

September 8, 2019

Via Email to sean_riley@ronjohnson.senate.gov

The Honorable Ron Johnson

United States Senate

Washington, DC 20510

September 8, 2019

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

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

Dear Senator Johnson:

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

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

Government Funding is Unneeded

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

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

 Elusive Cost Savings

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

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

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

Enactment Could Erase Medicare Fraud Recoveries

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

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

A Government Stamp of Approval May Hoodwink People

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

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

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

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

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

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

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

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

Sincerely,

Sara Buscher

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

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

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

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

[5] See note 2.

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

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

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

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

[10] See note 9 at the Appendix.

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

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

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

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

[14] See note 12.

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

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

[17] See note 19.

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

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

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

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

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

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

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

[25] See note 24 at 1099.

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

Strange Bedfellows: The Psychedelic Movement and Assisted Suicide

nancyvalko assisted suicide, Drugs, end-of-life, law, medical ethics, palliative care

Kathryn Tucker is an influential lawyer and director of the pro-assisted suicide organization called the End of Life Liberty Project, described as “the leading advocacy organization using litigation as a tool to expand end-of-life liberty”. Back in January, 2017 I wrote about Ms. Tucker’s criticism of the so-called “safeguards” in assisted suicide laws as “burdens and restrictions”.

Now in a April 12, 2019 article for Chacruna Institute for Psychedelic Plant Medicines  titled “Can the Psychedelic Movement Learn from the Movement for End of Life Liberty?”, Ms. Tucker explains how the effort to legalize the psychedelic drug Psilocybin (better known as “magic mushrooms”) can learn from the techniques of the assisted suicide movement.

Currently, there is an effort in Oregon (the first state to legalize assisted suicide) for a “2020 ballot initiative to legalize psilocybin therapy” and a Denver, Colorado (another assisted suicide state) initiative to decriminalize psilocybin use and possession by adults has just now narrowly passed.

WHAT IS PSILOCYBIN (“MAGIC MUSHROOMS”)?

According to the website drugs.com, so-called “magic mushrooms” contain chemical compounds obtained from certain types of dried or fresh mushrooms that are similar to LSD and “abused for their hallucinogenic and euphoric effects”.  Drugs.com also states that:

“The psychological reaction to psilocybin use include visual and auditory hallucinations and an inability to discern fantasy from reality. Panic reactions and psychosis also may occur, particularly if large doses of psilocybin are ingested.” (Emphasis added)

Because of special waivers from the US FDA (Food and Drug Administration), some small studies of cancer patients have shown benefits with small doses for anxiety and depression.

STRATEGIES

Ms. Tucker insists that the 1997 US Supreme Court case Vacco v Quill found a right  “of dying patients having access to as much pain medication as they need to get relief, even if it advances their time of death”.  (Emphasis added) However, Ms. Tucker neglects to mention that the Supreme Court ruled-unanimously-that there was no constitutional right to physician-assisted suicide.

She maintains that:

“Law and medicine already allow dying Oregonians access to controlled substances to eradicate consciousness (palliative sedation) and to advance the time of death (AID) (Aid in Dying, aka physician-assisted suicide). Surely law and medicine ought to allow access to controlled substances to alter and elevate consciousness.” (Emphasis added)

Tellingly Ms. Tucker writes about psychedelics:

“An authorization for medicinal use, allowing sick patients access to this medicine, appears the easiest first step in changing the law. Other medicinal uses are also compelling, including treatment of PTSD and depression. Focusing on medicinal use avoids attacks from those opposed to recreational or social drug use. It opens the door to societal familiarity with, and appreciation of, the benefits of psychedelics; this can lead to future expansion of access outside the medical realm.” (Emphasis added)

Because psychedelic drugs are not legal under current law and would need changes in the federal Controlled Substances Act, Ms. Tucker writes that various state efforts are instead emerging to change their state laws-just as Oregon did with assisted suicide after the 1997 Supreme Court case.

Ms. Tucker writes that one lesson the assisted suicide movement learned was that changing state laws can take multiple efforts. She writes that failed efforts to pass assisted suicide by ballot initiative in California and Washington state led to a tailoring of the text of such initiatives to get it passed by voters.

CHOOSE A STATE THAT ALREADY HAS PHYSICIAN-ASSISTED SUICIDE LAW

Ms Tucker says that using a state that already has an assisted suicide law would be strategic and would emphasize “the need to ensure that eligible patients would be provided with good palliative care to ensure that no patient would choose to precipitate death due to inadequate palliative care.” (Emphasis added)

She suggest that states like Hawaii might be the best test state because it has a unique provision to allow terminally ill patients to access undefined “remedial agents” as well as assisted suicide.

CONCLUSION

We often speak of the “slippery slope” of dangerous proposals that ultimately expand far beyond their initial enactment into law. We must recognize that this “slope” is planned and incremental, as Ms. Tucker makes clear.

With euthanasia, it started in 1938 with multiple failed legalization attempts by the Euthanasia Society of America. The concept finally gained traction after lawyer Luis Kutner’s 1969 law journal article “Due Process of Euthanasia: The Living Will, a Proposal”. After the well-publicized 1976 Karen Quinlan case, “living wills” and the “right to die” then were successfully sold to the public as the right of people to refuse extraordinary medical treatment when they are imminently dying or in a so-called “vegetative state”. Soon afterwards came the idea of legally removing feeding tubes from people who were also seriously brain-injured but not dying. This eventually led to several states legalizing physician-assisted suicide for the terminally ill expected to die within 6 months.

Now we are seeing, as in a (thankfully failed) recent bill in New Mexico,  further attempts to change the definition of terminal illness to expected death in the “forseeable future”,  non-physicians able to prescribe assisted suicide, inclusion of people with mental health disorders, approval by “telemedicine” and no state residency requirement.

As Ms Tucker makes clear in this article, the most important lesson for legalization of any formerly outrageous concept is to never give up.

But never giving up is also a strategy that we in the pro-life movement have already learned.

While Opposition to Nursing Involvement in Assisted Suicide Grows, a Dire Warning from Canada

nancyvalko assisted suicide, culture, end-of-life, law, medical ethics, nursing

In March, I wrote a blog “Is the American Nurses Association Ready to Drop Opposition to Assisted Suicide?” about  the ANA draft position paper changing its stance from opposition to assisted suicide to “The Nurse’s Role When a Patient Requests Aid in Dying”. “Aid in Dying” is the ANA’s new term for assisted suicide. I included a link for public comments on this change that gave a deadline of April 8, 2019.

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

I belonged to the ANA decades ago but left when I saw the organization take radical positions without even informing us. Now, no nurse I know belongs-unless he or she is in politics, academia or administration.

Even though I regularly get medical and nursing news updates along with constant ads from the ANA, I never see ANA’s proposed new position changes on hot button issues like VSED (voluntary stopping of eating and drinking to hasten death) and assisted suicide until alerted by people in my network. Unfortunately, although some of us wrote public comments opposing nursing involvement in VSED, the ANA approved the change in 2017

This time, the ANA’s draft position on assisted suicide led to an outpouring of criticisms and pleas not to approve the change.

SOME RESPONSES TO THE ANA DRAFT RECOMMENDATIONS

The Catholic Medical Association issued a statement opposing the ANA’s draft position stating:

“These guidelines compromise not only the patient’s life, but also the conscience rights of nurses everywhere,” said Dr. John Schirger, President of the CMA.”

“A nurse or any health care provider should never abandon a patient or refuse comfort and care to a patient. But AID is not care and is the ultimate abandonment of a patient. Forcing the nurse to facilitate AID makes the nurse complicit in such abandonment,” said Dr. Marie Hilliard, Co-Chair of the CMA’s Ethics Committee.”

The National Association of Catholic Nurses issued their comments on the ANA’s draft such as:

“All the legal system can do is decriminalize AID so that nurses and physicians are not prosecuted for killing patients or helping them to kill themselves.  AID is the antithesis of social justice.”

“Nursing is a moral endeavor and much is at stake when nurses breach the moral obligation to first do no harm.  Harm is precisely what support of AID does.  It harms  the patient who is killed, the nurse who must make themselves indifferent to the patient’s suffering and convince themselves that killing is okay, the professional relationship that is built on trust that the nurse will not harm the patient, and society that will come to view nurses as potential accomplices in killing rather than as true healers and providers of authentic compassionate care.  As Florence Nightingale is quoted to have said, “The very first requirement in a hospital, is that it should do the sick no harm.”

The National Association of Pro-life Nurses (NAPN) responded in their comments that:

“Social and legislative shifts” do not make a previously immoral act moral. ”

“Aid in dying IS euthanasia. It is the deliberate taking of a life whether it is requested by the patient or not.”

Wesley Smith of the Discovery Institute’s Center on Human Exceptionalism asked “Now Will Nurses Only Prevent Some Suicides?” wrote:

“I hope the membership of the ANA will oppose their leaders’ attempt to accommodate the culture of death. If nurses become “non-judgmental” — e.g., indifferent — to some suicides, the consequent failure to request specialized preventative interventions could become the precipitating omission that sends some suicidal patients into the abyss.”

And over 1000 people signed an online petition opposing the ANA draft position by the April 8, 2019 deadline.

A DIRE WARNING FROM CANADA

The Canadian Catholic Nurses joined the National Association of Catholic Nurse in opposing the ANA’s draft position and gave a chilling look at what may be our future if  legalized assisted suicide is not stopped:

“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.”

 Social justice demands that nurses advocate for the protection of life until natural death, not for increased access to induced death. 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. We urge the ANA to maintain its courageous opposition to assisted suicide and euthanasia.” (All emphasis added)”

Legalized assisted suicide is more than a legal, medical or nursing problem. It is a corrupting influence on our society that will destroy the essential protections of truly ethical healthcare for us all.

A Surprise in Maryland, Compassion and Choices is Not Happy

nancyvalko assisted suicide, Compassion & Choices, education, end-of-life, law

Last month, I joined many other people fighting the fourth attempt in Maryland  to legalize physician-assisted suicide. At that time, the Maryland “End of Life Options” bill  was in a Maryland house committee. We all were disappointed when the bill was later passed and went to the senate committee.

But then things got interesting.

According to a 3/22/19 Baltimore Sun article “Medically assisted suicide bill advances in Maryland, but with changes that frustrate advocates” , committee chairman Senator Bobby Zirkin  said the bill as introduced to the committee was “flawed to its core”, even though he admitted he didn’t want to stand in the way of terminally ill people who wanted assisted suicide.

According to the article, the senate committee members “spent more than 7 hours hashing out dozens of proposed amendments to the bill” before agreeing to vote it out to the full senate with these changes requiring patients:

“Be at least 21 years old, a change from 18 in the original bill.

Have their diagnosis confirmed by their attending physician and a consulting physician. Those two physicians cannot be in the same practice or have a financial relationship

Ask for the prescription three times, including once in private with a doctor and with witnesses.

Undergo a mental health evaluation.”

The senators also set a stricter definition of who could qualify for assisted suicide and removed the prescribing doctors’ immunity “from civil lawsuits related to prescribing the fatal drugs.”

The revised version now heads to the full Maryland Senate for a final vote, probably this week.

Compassion and Choices CEO Kim Callinan says  “The bill in its current form would create many needless hoops and roadblocks for dying patients and put doctors at risk for baseless lawsuits” and make assisted suicide “nearly impossible for patients to access.”

Compassion and Choices is urging the Maryland senate to pass a “more patient-friendly bill” that won’t erect “barrier after barrier for dying patients” including “a mandatory psychological evaluation, numerous additional witness requirements” and “preventing them (family members) from enjoying the precious time they have left with their loved one.”

However, the Maryland Against Physician Assisted Suicide coalition correctly notes that even with the revisions, the bill  “does not offer sufficient protection of those in our system of health care who are most vulnerable to abuse” and should not be passed.

CONCLUSION

Ironically and just last year, I wrote about the impatient calls to expand medically assisted suicide from advocates like influential lawyer Thaddeus Pope argued that the some so-called “legal safeguards” like age limits, the definition of terminal illness and the ability to ingest the lethal overdose were actually “burdensome obstacles”.

Trying to educate the public and especially legislators about the dangers of legalized assisted suicide is a daunting task, especially against extremely well-funded groups like Compassion and Choices and a mostly supportive mainstream media.

But the unexpected surprise in the progression of the Maryland assisted suicide bill and the new opposition by the Connecticut Division of Criminal Justice to the death certificate falsification in that state’s proposed assisted suicide bill shows how cracks are beginning to grow in the false narrative that legalizing assisted suicide is perfectly safe and harmless to society.

 

 

 

 

What about Ventilators and “Pulling the Plug”?

nancyvalko Alzheimer's, education, end-of-life, futility, medical ethics, ventilators/life support

When I first became a registered nurse in 1969, ICUs (intensive care units) were still new. The first one I worked was set up in the former visitors’ lounge and we learned how to read EKGs (heart tracings) by using a book.

By the early 1970s, I worked in a surgical/trauma ICU where we used sophisticated ventilators like the MA-1. We were able to get almost all our patients off ventilators by weaning, the process of gradually lowering ventilator support until the patient can breathe on his or her own.

But in 1976, I was shocked by the Karen Quinlan case that changed everything.

Karen was a 21 year old woman who suffered brain damage after apparently taking drugs at a party. She was hospitalized and placed on a ventilator. When she was thought to be in a “persistent vegetative state”, her adoptive parents asked that her ventilator be removed. The doctors disagreed and they case eventually went to the New Jersey Supreme court that allowed the removal of the ventilator on the grounds of an individual’s right to privacy.  Shortly afterward, California passed the first “living will” to refuse “life support” if or when the signer is incapacitated.

Ironically, Karen lived 10 more years because, as some ethicists criticized, she was weaned off the ventilator instead of just abruptly stopping the ventilator.

My experience with ventilators became personal in 1983 when my baby daughter Karen died on a ventilator before she could get open-heart surgery. Unfortunately, one young doctor earlier offered to take her off the ventilator to “get this over with”. I reported him to the chief of cardiology who was furious with the young doctor.

In the 1990s, I returned to working in an ICU and was shocked by the development of the “terminal wean” for some patients on ventilators. Often the families were told that there was no hope of a “meaningful” life. The terminal wean involved abruptly disconnecting the ventilator and “allowing” the patient to die. I brought up at least trying regular, gradual weaning and oxygen as we did for the other patients on ventilators but I was ignored.

After I retired from bedside nursing, I was asked to be with an elderly man on a ventilator who had had a massive stroke and the family was told that he would never have any quality of life and would die soon anyway. I tried to bring up weaning but some members of the family were adamant.

When the ventilator was stopped. I held the man’s hand and prayed while he gasped for air and turned blue. I asked the nurse to at least giving him oxygen for comfort but she ignored me. Instead, she gave frequent doses of morphine intravenously until the man’s heart finally stopped after 20 minutes.

I am still haunted by this man’s death.

INFORMED CONSENT?

The medical definition of informed consent requires understanding “the purpose, benefits, and potential risks of a medical or surgical intervention…”.

But most people seem to have a vague understanding of ventilators when they sign a “living will” or other advance directives and thus have very little information about this often life-saving medical intervention.

As a nurse, I found that most people-especially the elderly-tend to automatically check off ventilators without understanding that a sudden problem with breathing can come from a number of treatable conditions that don’t require long-term use of a ventilator such as  asthma, drug overdoses, pneumonia and some brain injuries.

In some circumstances such as certain spinal cord injuries and late-stage neurodegenerative diseases like amyotrophic lateral sclerosis, the ventilator is  necessary long-term to live. But even then, people like Christopher Reeve and Stephen Hawking have used portable ventilators to continue with their lives. Some people with disabilities use small ventilators only at night.

It is important to know that ventilators move air in and out of the lungs but do not cause respiration-the exchange of oxygen and carbon dioxide that occurs in lungs and body tissues. Respiration can occur only when the body’s respiratory and circulatory systems are otherwise intact. A ventilator cannot keep a corpse alive.

It’s also important to know that not all machines that assist breathing require the insertion of a tube into the windpipe. Non-invasive positive-pressure ventilation like the BiPap successfully used for my elderly friend Melissa allowed her to use a face mask to assist her breathing until antibiotics cured her pneumonia.

WEANING FROM A VENTILATOR

Many patients are easy to wean from a ventilator but some patients are more difficult.

Years ago, I cared for an elderly woman with Alzheimer’s who needed a ventilator when she developed pneumonia. She had made her son and daughter her medical decision makers in her advance directive.

However, the doctors found it very difficult to try to wean the ventilator after the woman improved. They spoke to the family about removing the ventilator and letting her die. The daughter agreed but the son was adamantly against this.

The woman was totally awake after the sedation to keep her comfortable on the ventilator was stopped. She was cooperative and made no effort to pull out the tube in her windpipe. She just smiled when asked if she wanted the ventilator stopped.

Having known of some great respiratory therapists in the past who were able to successfully wean difficult patients from ventilators, I suggested that she be transferred. She was transferred and a week later we were told that she was successfully weaned from her ventilator.

About a year later, I encountered the woman again when she was recuperating after a routine surgery. Although her Alzheimer’s disease was unchanged, she was doing well in an assisted living residence.

CONCLUSION

As a student nurse, I was as initially intimidated by ventilators as anyone else. But as I learned how to use them and saw the constant improvements not only in the technology but also in our care of patients on ventilators, I came to see ventilators as a great blessing when needed.

And while we are never required to accept treatment that is medically futile or excessively burdensome to us, sometimes this can be hard to determine-especially in a crisis situation. Most of my patients on ventilators recovered but some could not be saved. We were surprised and humbled when some patients with a poor prognosis recovered while others who seemed to have a better chance died unexpectedly. There are no guarantees in life or death.

That is why my husband and I wrote our advance directives that designate each other as our decision maker with the right to have all current options, risk and benefits of treatment fully explained.

We don’t want an advance directive that could be hazardous to our health!