Sweden and Covid 19: Families Complain That “Palliative Care” Instead of Treatment Is Being Given to the Elderly

A June 18, 2020 article in the Wall Street Journal titled “Coronavirus is taking a high toll on Sweden’s elderly. Families blame the government”  starts with a disturbing story:

“When 81-year-old Jan Andersson fell ill with Covid-19 at a nursing home in the Swedish town of Märsta, a doctor consulted by phone ordered palliative care, including morphine, instead of trying to help him fend off the infection.

Mr. Andersson’s son, Thomas Andersson, says he was told his father was too frail for other treatment. The younger man disagreed and, after arguing with the physician, summoned journalists and insisted his father be given lifesaving care. Mr. Andersson has since recovered.

The county that runs Mr. Andersson’s nursing home said all decisions on medical treatment for the residents were made by doctors employed by a company that provides medical services. (All emphasis added)

The Wall Street Journal reports that cases like this have sparked a public outcry from not only relatives but also from some doctors and nurses. There is now an investigation by Swedish national health-care authorities into the treatment of older patients in nursing homes and Stockholm hospitals. There are now 5,041 people in Sweden who have died from Covid 19 with about half being nursing home residents.

“Many people have died unnecessarily,” said Yngve Gustafson, a geriatric-medicine specialist in Sweden, who looked into more than 200 cases in which people were denied care. He said that doctors were too quick to put patients on palliative care. He also said that he believed many would have survived and lived year longer had they been provided basic care.

Furthermore, a June 12, 2020 British Medical Journal article “Has Sweden’s controversial covid-19 strategy been successful?” stated that Dr. Gustafson also spoke to the Svebsja Dagbladet newspaper and “expressed concern about the increasing practice of doctors recommending by telephone a “palliative cocktail” for sick older people in care homes.

He also was quoted as saying:

“Older people are routinely being given morphine and midazolam, which are respiratory-inhibiting,” … “It’s active euthanasia, to say the least.”

Thomas Linden, chief medical officer of Sweden’s National Board of Health and Welfare, said the triage guidelines for Covid 19 were developed to prepare the health-care system for a potential crisis while ensuring best-possible treatment for all patients.

However, the Wall Street Journal article reports that Swedish critics say these guidelines have too often resulted in older patients being denied treatment, even when hospitals were operating below capacity.

“Dr. Cecilia Söderberg-Nauclér, a physician at Karolinska University Hospital in Stockholm, said that “the ICU wards were comparatively empty “because elderly people were not taken to hospitals—they are given sedatives but not oxygen or basic care.”

The Wall Street Journal article also notes that “About 90% of nursing-home residents who succumbed to Covid-19 in Sweden were never admitted to a hospital, according to official estimates. ” (Emphasis added)

Most poignantly, Latifa Löfvenberg, a nurse  for a company providing medical services to several nursing homes, said she sought treatment for residents with Covid-19 and was told by company physicians to administer morphine and a sedative.

She  described what happened:

People suffocated, it was horrible to watch. One patient asked me what I was giving him when I gave him the morphine injection, and I lied to him,” said Ms. Löfvenberg, who is now working at a hospital in the Swedish capital. “Many died before their time. It was very, very difficult.” (Emphasis added)

COULD-OR HAS-THIS HAPPENED IN THE US?

As I wrote in my May 20, 2020 blog “Covid 19 and the Culture of Death” about the dangerous and unethical responses to Covid 19 in the US:

“(T)he National Hospice and Palliative Care Organization (NHPCO) has a new resource for Crisis Standards of Care for the “ethical allocation of scarce medical resources during a disaster” that:

‘provides a framework for healthcare professionals to utilize a predetermined framework to determine which individuals will receive life saving care during an emergency event or disaster and which ones will not.’ With the event of the COVID-19 Public Health Emergency (PHE), it is important for palliative and hospice care providers to be familiar with Crisis Standards of Care.” (Emphasis added)

However, access to the actual crisis standards is restricted to NHPCO members only.

But transparency is not the only  problem.

Unfortunately, I have also personally and professionally seen cases of deliberate overdose sedation. I have written about this, most recently in my 2019 blog When Palliative Care goes Horribly Wrong”.

CONCLUSION

While Sweden has not yet legalized physician-assisted suicide, Sweden’s National Board of Health and Welfare did authorize passive euthanasia in 2010, whereby “patients may request the termination of their treatment knowing that this will lead to their death”. This ruling came in response to a request by a 32 year old woman who was totally paralyzed and dependent on a ventilator since the age of six. She requested it be shut off when she was asleep. Whether or not she received a “palliative cocktail” beforehand is unknown.

Now, Swedish officials seem to have forgotten the part about “patient request” when it comes to Covid 19 and the elderly.

In the US, we started down a similar path when “right to die” groups focused on “living wills” and withdrawal of even basic treatment before outrightly promoting physician-assisted suicide.

The bottom line for any country is that we must not lethally discriminate against anyone, regardless of age or condition like Covid 19 and we must hold palliative care to the high standards set by the late Dame Cicely Saunders,  founder of hospice movement (1918 – 2005) who said:

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” (Emphasis added)

 

 

 

Is there a “New” Catholic Medical Ethics?

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

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

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

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

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

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

I still have nightmares about this.

THE “NEW” CATHOLIC MEDICAL ETHICS

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

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

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

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

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

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

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

His Commonweal article concludes that:

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

 

HOW COULD THIS HAPPEN?

After years of research and my own experiences with Catholic hospitals and staff, I have seen the tremendous influence of the Catholic Health Association which boasts that it’s health care ministry comprises more than 600 hospitals and 1,600 long-term care and other health facilities in all 50 states,  When I received my nursing education in a Catholic hospital in the late 1960s, rigorous ethics were an important part of our nursing education with “do no harm” to patients, report our mistakes, never lie, advocate for our patients regardless of age, socioeconomic status or condition, etc. incorporated as standard requirements. We happily took the Nightingale Pledge as our standard of excellence.

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

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

CONCLUSION

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

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

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

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

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

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

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

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

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

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

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

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

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

September 8, 2019

Via Email to sean_riley@ronjohnson.senate.gov

The Honorable Ron Johnson

United States Senate

Washington, DC 20510

September 8, 2019

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

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

Dear Senator Johnson:

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

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

Government Funding is Unneeded

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

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

 Elusive Cost Savings

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

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

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

Enactment Could Erase Medicare Fraud Recoveries

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

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

A Government Stamp of Approval May Hoodwink People

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

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

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

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

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

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

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

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

Sincerely,

Sara Buscher

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

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

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

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

[5] See note 2.

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

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

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

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

[10] See note 9 at the Appendix.

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

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

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

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

[14] See note 12.

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

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

[17] See note 19.

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

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

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

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

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

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

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

[25] See note 24 at 1099.

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

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

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

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

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

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

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

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

“We employ educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals.”

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

Establish federal payment for palliative care consultations provided by trained palliative care professionals who will advocate for and support the values and choices of the patient….” (All emphasis added)

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

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

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

 

How Could This Happen? Ohio Doctor Accused of Murder in 25 Patient Overdose Deaths

The shocking June 5, 2019 Associated Press headline read “Doctor accused of murder in 25 patient overdose deaths” and the details were alarming to read.

Dr. William Husel, a critical care physician, “was charged with murder Wednesday in the deaths of 25 hospital patients who, authorities say, were killed with deliberate overdoses of painkillers, many of them administered by other medical workers on his orders” at the Columbus-based Mount Carmel Health System in Ohio, a member of one of the largest Catholic health care delivery systems in the nation.

The Mount Carmel Health System found that Husel “ordered potentially fatal drug doses for 29 patients over several years, including five who may have been given that pain medication when there still was a chance to improve their conditions with treatment. The hospital system said six more patients got doses that were excessive but likely didn’t cause their deaths.”

According to the article “Many of the patients who died were on ventilators and receiving palliative care. The deaths occurred between 2015 and 2018.” Authorities decided not to prosecute the 48 nurses and pharmacists involved, although they were reported to their professional boards.

Dr. Husel pleaded not guilty and his lawyer said that Dr. Husel “was trying to provide ‘comfort care’ for dying patients. At no time did Dr. Husel ever intend to euthanize anyone — euthanize meaning speed up death.”

According to the article, none of the families of the victims who talked with investigators believed that what happened was “mercy treatment”.

In a related February Columbus Dispatch article Attorneys say former Mount Carmel doctor might have inappropriately deemed patients brain-dead”, it was also alleged by attorneys for the families that there were several instances where Dr. Husel would prescribe excessive dose of fentanyl shortly after telling family member their loved one was brain dead.

More than 2 dozen wrongful death lawsuits have now been filed against the doctor and  Mount Carmel.

Mount Carmel publicly apologized and said “it should have investigated and taken action sooner. It has acknowledged that the doctor was not removed from patient care for four weeks after the concerns were raised, and three patients died during that time.” (Emphasis added)

HOW COULD THIS HAPPEN?

When I started my career as a nurse in 1969, a situation like this was unthinkable, especially in a Catholic institution like Mount Carmel. But over the years, I saw ethics begin to change for the worse with the so-called “right to die” involving seriously brain-injured but non-dying people who needed feeding tubes. Eventually, the “right to die” became the “right to choose” legalized physician-assisted suicide by lethal overdose for people expected to die within 6 months with immunity granted to the prescribing doctor. Tragically, public and professional attitudes started to change.

Several years ago on a night shift in my intensive care unit, I was involved in a case similar to these 25 alleged murders when I was almost fired for refusing to increase a morphine drip “until he stops breathing” on a patient who continued to breathe after his ventilator was removed. The doctors presumed (mistakenly, as it turned out) that the patient had had a massive stroke and thus was irreparably brain-damaged.

I immediately reported this to the supervisor and a doctor but I was told that giving and increasing the morphine-even though the patient showed no discomfort-was merely “comfort care” that would “prevent pain”. But I knew it was euthanasia. No one supported me but I persisted trying to get a response from the patient after I stopped the morphine to hopefully give him a chance.

I was not surprised when I was later told that the doctor who gave the order wanted me fired. I defended myself and refused to be reprimanded or otherwise punished. I even threatened legal action.

I was relieved when I was not fired but other nurses heard about the incident and recognized the problem. Nurses on one unit began refusing to give what they now saw as lethal overdoses to terminally ill patients and eventually that practice stopped on that unit.

CAN SUCH CASES BE PREVENTED?

In another related March AP article ” 25 nurses over high doses for patients who died”, Attorney General Dave Yost, whose office represents the Ohio Board of Nursing in this matter, said that “Nurses who helped administer excessive and possibly fatal painkillers to dozens of Ohio hospital patients should have questioned an intensive-care doctor’s order for those high doses” and was quoted as saying:

“Nurses are professionals who have a duty to exercise their best judgment, and tens of thousands of them do, every single day. These nurses didn’t.”

But is this fair?

In Dr. Husel’s case, remember that Mount Carmel admitted it did not remove him for four weeks after concerns were raised and three more patients died.

I know how hard it is to report a problem with a doctor, especially when you realize that your own career may be at risk as a nurse. I’ve personally seen nurses fired or harassed until they quit when they reported a doctor or a serious problem. Tragically,  I have not yet seen our national or state nurses associations backing up such brave nurses. This is why I support not only strong conscience rights for all health care professionals but also whistle blower protection for the person reporting a problem so they will not lose their job.

It is said that sunlight is the best disinfectant and that is why I tell my story as well as similar stories other nurses have told me. The public has a right to know and be aware of potential problems that can occur when they or their loved ones face a life-threatening illness. They need to know the questions to ask and the actions to take if the answers are not acceptable.

Also, we need to fight against physician-assisted suicide laws and the seductive lie promoted by Compassion and Choices that killing can be “humane” in some circumstances. Terminal illness, disability, fear of being a burden, etc. are never reasons to end someone’s life, even when the person himself or herself asks for the lethal overdose.

Personally, I now always make sure the health care providers for myself or my loved ones share my values.

It’s a matter of safety and trust as well as ethics.

Strange Bedfellows: The Psychedelic Movement and Assisted Suicide

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.

When Palliative Care goes Horribly Wrong

As I have written before,   I was almost fired for refusing to increase a morphine drip “until he stops breathing” on a patient who continued to breathe after his ventilator was removed. The doctors mistakenly presumed he had a massive stroke and thus was irreparably brain-damaged. I was told at that time that giving and increasing the morphine even though the patient showed no discomfort was merely “comfort care” that would “prevent pain”. I knew it was euthanasia.

I remembered this terrible incident when I read the April 1, 2019 Federalist magazine article “This Belgian Nurse Watched Euthanasia Turn Pain Management Into A Death Prescription”

Belgium has had legalized euthanasia for many years, including organ donation euthanasia and now even minors and psychiatric patients. But Sophie Druenne, a palliative care nurse, reached her breaking point when she had to call a doctor had to come back to give another lethal injection when the patient didn’t die from the first injection. Sophie caught herself laughing at the absurdity of the situation at first but then realized the horror of the situation and began to question Belgium’s so-called social experiment with euthanasia.

What changed Sophie’s opinion was working in Belgium’s integrated palliative care (IPC) system. Palliative care is “medical aid that treats symptoms of a typically serious disease rather than the disease itself, which sometimes cannot be treated or not easily.” However Belgium’s euthanasia framework now includes integrated palliative care in the framework.

As the article states, palliative care used to be defined by the anti-euthanasia beliefs of its founder, Dame Cicely Saunders, a British nurse who developed holistic care for the dying in the 1940s. Dame Saunders believed that “that a patient’s request for euthanasia represented a failure to adequately care for the patient’s spiritual, emotional, and social needs.”

Although Belgium tried to reconcile Dame Cicely Saunders’ standard with its euthanasia laws, Sophie observed that the guiding intention to relieve suffering changed from “first, do no harm” to “first, relieve suffering”. This allowed euthanasia to become an “easy” solution that could effectively nullify even patient consent.

Sophie finally left Belgium to take a position in Paris at a hospital where terminally ill patients are treated with traditional palliative care

THE SITUATION IN THE US

Recently I was giving a talk on assisted suicide/euthanasia when I noticed that a woman in the audience was visibly upset. After I finished, I went over to her to ask if I said something that upset her. She responded that she was a nurse for 30 years and, when I related the story about the morphine overdose I refused to give, she said that she suddenly realized the truth of what was happening in her hospital. She started to cry while I held her hand. She was devastated just like the Belgian nurse.

Palliative care is a wonderful holistic approach to evaluating the patient’s needs beyond just the physical but it must not include causing death.

Unfortunately, a recent Delaware assisted suicide bill  actually tried to define assisted suicide as a palliative care option.

Currently, hospice/palliative care is held up as a good way to combat assisted suicide. However,  Compassion and Choices touts  that “(a) growing number of national and state medical organizations have endorsed or adopted a neutral position regarding medical aid in dying (physician-assisted suicide) as an end-of-life option for mentally capable, terminally ill adults.”

Barbara Coombs Lee, CEO of Compassion and Choices even issued a 2017 “Call to the Palliative Care Community for a Patient-Centered Response to Medical Aid in Dying (aka physician-assisted suicide)” stating that assisted suicide actually “could improve the image and acceptance of palliative care” by taking a position of  “engaged neutrality” that “indicates that it is a professional organization’s obligation to provide its members with the clinical guidelines, information, and tools they need if they choose to support their patients’ requests” for assisted suicide.” (Emphasis added)

Not surprisingly, Compassion and Choices had supported the 2016  “The Palliative Care and Hospice Education and Training Act” (reintroduced this year as HR 647) that would provide millions of dollars in grants or contracts to “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.” (Emphasis added)

Fortunately, a provision was added to forbid federal assistance to any health care item or service causing or assisting death such as assisted suicide. Since then, the Compassion and Choices website has been silent on the Act.

CONCLUSION

Over the years, the public has been told that assisted suicide is a humane answer to emotional and physical suffering at the end of life. But if doctors, nurses and their professional organizations come to agree with this, we all will lose the protection of truly ethical healthcare that rejects causing death as a solution. We must be able to trust that our healthcare system will  give us the care we need and deserve, especially at the end of our lives.

We cannot become like Belgium.

Beware the New “Palliative Care and Hospice Education and Training Act”

Right now, there is a Senate Bill 693 titled “The Palliative Care and Hospice Education and Training Act” to authorize more and better training in palliative and hospice care. Although a provision (SEC. 6. Clarification) was recently added to explicitly forbid federal funding for any health care furnished for the purpose of causing or assisting the death of any individual by assisted suicide, euthanasia or mercy killing, many of us have serious concerns. (The similar House Bill 1676 has already passed and sent to the Senate.)

As an RN with decades of nursing experience in hospice, oncology (cancer) and critical care, I have been involved with many end-of-life situations. I am an enthusiastic supporter of ethical palliative and hospice care which is indeed wonderful for patients of any age and their families.

Unfortunately, there is a growing trend towards calling unethical practices “palliative” or “hospice” care.

For example and just a few years ago in a Catholic hospital, I saw a nurse/friend’s life deliberately ended due to so-called palliative and hospice care labeled “comfort care.” She had recently suffered a serious brain injury and was declared hopeless after a couple of weeks. The family was strongly pushed to switch to “comfort care”.  She was taken off a ventilator, had her feeding tube removed (against her adult son’s wishes), and continued to receive the sedation medications used when she was on the ventilator, even receiving an increase in those medications when she continued to breathe on her own. Despite my friend’s son insisting that he wanted the feeding tube replaced and that he wanted to eventually care for his mother at home whatever her level of functioning was, he was told to wait until a doctor could order the feeding tube replaced. The hospital waited until he went home to sleep, transferred her to the hospice unit without his permission and she was dead by morning.

Unfortunately, similar stories have become increasingly more common since the 1970s when the Euthanasia Society of America changed its name to the Society for the Right to Die and promoted the new “living wills”. Now we have well-funded groups like Compassion and Choices (the former Hemlock Society) not only promoting physician-assisted suicide but also trying to change medical ethics from never deliberately causing or hastening death to merely a “choice” about when and how to die.

Two years ago in my blog “Is Compassion and Choices aiming to become the “Planned Parenthood” of Euthanasia?, I warned about the current and future involvement of Compassion and Choices in “end of life” education.

Here are some excerpts:

With over $22 million in 2015 net assets,  a 4 star rating from Charity Navigator, enthusiastic media coverage and a new  Federal Policy Agenda for 2016 and Beyond” , Compassion and Choices increasingly appears to be following in the 4 star, politically and media supported, $1.3 billion dollar revenue ($528 million in government taxpayer funding) steps of the Planned Parenthood Federation of America.

While Compassion and Choices claims that it just “works to improve care and expand choice at the end of life”, it also admits that “We employ  educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals.” (Emphasis added)

……….

THE PALLIATIVE AND HOSPICE CONNECTION

Compassion and Choices has worked for decades not only to legalize physician-assisted suicide in every state but also to normalize and integrate physician-assisted suicide into medical practice and reaches out to established medical groups like the American Academy of Palliative and Hospice Medicine (AAPHM.

………..

Now, Compassion & Choices’ website has a video presentation based on this article  titled  “Understand the Clinical Practice of Aid in Dying” for doctors and other clinicians. The presentation even offers continuing medical education credits.

This would not be possible if the AAPHM had not changed its position on assisted suicide from opposition to “studied neutrality”, a position that the American Medical Association itself is now considering.

………….

Compassion and Choices also supports two other “legal” options for assisted suicide in states that haven’t passed physician-assisted suicide laws. One is “voluntary stopping of eating and drinking (VSED)” and the other is “palliative sedation-Sometimes called terminal sedation”. Significantly, the recommendations include the admission that “VSED includes pain and symptom management” and “Palliative sedation must be medically managed by a healthcare provider”. Thus the need to influence and train hospice and palliative care providers.

………..

WHERE THE MONEY AND POWER IS

Compassion and Choices now has its “Federal Policy Agenda / 2016 & Beyond”.

The priorities on its agenda include:

Establish federal payment for palliative care consultations provided by trained palliative care professionals who will advocate for and support the values and choices of the patient….”  (Emphasis added)

Also included are

Professional Education and Development” training programs for doctors and other providers “in discussing terminal prognoses and death” and  “Policies and Payment Systems” to change medical policies and payments to a “a value-based healthcare payment system” that will “(e)ncourage Congress to direct CMS (the Centers for Medicare and Medicaid Services) and other federal agencies” to withhold   “appropriations or other funds”  for treatment that was “provided but (deemed) unwanted”.

This last provision reinforces the fear many healthcare providers already have that, if in doubt, it is safer not to treat a person rather than treat him or her in hope of a good result because of potential lawsuits or reimbursement problems.

………

In the meantime, if the Compassion and Choices federal policy agenda is successful, they stand to benefit from a potential windfall of government taxpayer funding to provide their currently  “free consultation, planning resources, referrals and guidance”.

CONCLUSION

I have already contacted my state senator to express my concerns and urged him to vote “no” on SB 693.

As Nancy Elliot, chair of the Euthanasia Prevention Council USA, ended in a great letter to Senators opposing the Palliative Care and Hospice Education and Training  Act :

“instead of creating a rival form of palliative care…Wouldn’t it be better to educate/update all physicians and nurses about pain and symptom management?”

Alfie Evans and the Shocking UK Gosport Independent Panel Report

The Baby Alfie Evans’s case this year shocked the world but now we learn his forced death against his parents’ wishes follows a legal and healthcare nightmare in the UK.

Some of us expressed concerns years ago about the UK’s “Liverpool Care Pathway” developed in the 1990s to improve care of the dying by applying “the high standard of palliative care prevalent in hospices to other clinical settings”.  But the “Liverpool Care Pathway” went horribly wrong and in 2009, the UK Daily Mail published an article “Euthanasia by the back door: Hospitals ‘death pathway’ is open to error” with cases of non-dying patients considered “not worth saving” who died from the “combination of dehydration and powerful painkillers”, explaining that:

“Under the Liverpool Care Pathway, doctors can withdraw fluids and drugs from patients if they are deemed close to death. Many are then put on continuous sedation so they die free of pain.

But sedation can often mask signs of improvement, meaning doctors may be closing the door on people who would otherwise live for months.”

In 2013, the British Journal of General Practice published “The Liverpool Care Pathway for the dying: what went wrong?” . The authors acknowledged the problems that led an independent review to call for an end to the Liverpool Care Pathway but concluded that:

“(a)vacuum left by the abolition of the LCP makes a return to the ‘bad old days’ of poor or non-existent communication about dying a real possibility: we would argue that the response to poor use should be right use, not non-use” and  called for “increased funding and training in palliative care and suggest that skills in end-of-life care should become a required competency for all health care professionals.” (Emphasis added)

THE GOSPORT INDEPENDENT PANEL REPORT

More details of this scandal have just now surfaced in a report on the Gosport War Memorial Hospital  where patients were often admitted for rehabilitation or respite care. The report concludes that at least 450 patients had their lives “shortened” by denial of food and water along with powerful painkillers between 1989 and 2000. It details cases and concerns and ultimately acknowledges the families’ years-long pleas for the truth. Here is one excerpt:

“Those (nurses) who raise concerns about the conduct and practice of colleagues are now widely known as ‘whistle-blowers’. To put it into context, it is generally agreed that the NHS (National Health Service) has not been good at protecting people who take such a difficult step; as the documents make clear, the events of 1991 were no exception. Nor should the consequences for whistle-blowers be underestimated: these commonly included disciplinary action and undermining of professional credibility.

“The documents show that, following a complaint to the Trust in 1998 and the police investigation, it should have become clear to local NHS organisations that there was a serious problem with services at the hospital. Although the successive police investigations undoubtedly complicated the NHS response, it is nevertheless remarkable that at no stage was there a public admission of failure or any public apology. Nor was there a proportionate clinical investigation into what had happened. On the contrary, the documents show numerous instances of defensiveness and denial – to families, to the public and the media, and to health service and other organisations.” (Emphasis added)

CONCLUSION

Will charges now be brought against those involved in the Gosport War Memorial Hospital euthanasia deaths? Who knows? The Independent Panel only concluded that:

“With this Report and an online archive of documentation, the Panel has completed its Terms of Reference. The Panel now calls upon the Secretary of State for Health and Social Care and the relevant investigative authorities to recognise the significance of what is revealed by the documentation in this Report and to act accordingly.

But just as important is the question “Has health care now improved?”

Unfortunately, the answer may be no.

As the UK Telegraph reported in 2015 in the article “New NHS (National Health Service) death guidelines ‘worse than Liverpool Care Pathway’”, the Liverpool Care Pathway was supposedly phased out in 2014 in favor of the National Institute of Health and Care Excellence (NICE) guidelines. but families were still reporting poor end of life care, including denial of food and water.

And now, unlike that Liverpool Care Pathway horrors that were hidden for so long, we had the very public case of Baby Alfie Evans this year where courts enforced the doctors’ decision to shorten his life by removing his ventilator, refused his family’s requests to transfer him or take him home and even take away his feedings when he continued to breathe for days after the ventilator was removed.

Apparently, the death culture is apparently very hard to kill in the UK and, as we are finding, also in the US.

Good News/Bad News about Alzheimer’s

First the good news:

Alzheimer’s disease is a currently irreversible, progressive brain disorder that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks.

However, a new study “Estimation of lifetime risks of Alzheimer’s disease dementia using biomarkers for preclinical disease” shows that “most people with preclinical Alzheimer’s disease will not develop Alzheimer’s dementia during their lifetimes”, according to a mathematical analysis based on several large, long-term studies.

According to the Alzheimer’s Association , the term “preclinical” refers to “a newly defined stage of the disease reflecting current evidence that changes in the brain may occur years before symptoms affecting memory, thinking or behavior can be detected by affected individuals or their physicians”.

Although biomarkers are still being investigated and validated, this new study can be reassuring to many people worrying that, for example, forgetting where they left their car keys means the beginning of Alzheimer’s.

While the cause of Alzheimer’s is still a mystery, research on the disease is massive and ongoing. Currently, there are drug and non-drug treatments that may help with both thinking and behavior symptoms. There is hope.

THE BAD NEWS

With the many negative stories in major media about Alzheimer’s, it is no wonder that people are so afraid of it.

As Deakin University Professor Megan-Jane Johnstone says in her book “Alzheimer’s disease, media representations and the Politics of Euthanasia-Constructing Risk and Selling Death in An Ageing Society”  :

“Alzheimer’s has been portrayed as the ‘disease of the century’ that is poised to have a near catastrophic impact on the world’s healthcare system as the population ages…

This representation of the disease—along with other often used terms such as ‘living dead’, a ‘funeral that never ends’ and a ‘fate worse than death’—places Alzheimer’s as a soft target in the euthanasia debate because it plays to people’s fears of developing the disease and what it symbolizes. It positions Alzheimer’s as something that requires a remedy; that remedy increasingly being pre-emptive and beneficent euthanasia.” (Emphasis added)

While countries like Belgium and Holland have long allowed lethal injections for people with Alzheimer’s , this is forbidden in the US-for now. However, assisted suicide groups are now trying new “living wills” stating that if or when the person is diagnosed “with Alzheimer’s or another incurable dementing disease”, he or she refuses not only a feeding tube but also even assistance with oral eating and drinking to end their lives.

Compassion and Choices, the well-funded former Hemlock society, has long promoted VSED (voluntary stopping of eating and drinking) as a legal alternative to assisted suicide in states without assisted suicide laws. But at the present time, people who cannot make medical decisions because of  conditions like Alzheimer’s cannot sign an advance directive.

So influential major media outlets like the New York Times often publish articles such as the May 30, 2018 article titled “Alzheimer’s? Your Paperwork May Not Be in Order” that quote Dr. Judith Schwarz:

“People should at least understand what the normal process of advanced dementia is about,” Dr. Schwarz said. “Feeding tubes are not the issue…. Opening your mouth when a spoon approaches is a primitive reflex that persists long after you’ve lost the ability to swallow and know what to do with what’s put in your mouth.” (Emphasis added)

Dr. Schwarz’s advice?

“Complete her organization’s Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia.”

But what Dr. Schwarz and others do not want to talk about is the often tragic reality of deliberate death by starvation and dehydration.

Although media articles portray VSED as a gentle, peaceful death, a 2018 Palliative Practice Pointers article in the Journal of the American Geriatric Society  titled Voluntary Stopping Eating and Drinking” states:

“VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers…The most common symptoms encountered after starting VSED are extreme thirst, hunger, dysuria (painful urination due to concentrated urine NV),  progressive disability, delirium, and somnolence.” (Emphasis added)

Most chillingly, the authors state:

 “Because an individual with delirium may forget his or her intention and ask for drinks of water, caregivers will struggle with the need to remind the incapacitated individual of his or her own wishes. This possibility should be anticipated and discussed with the individual in advance. While reminding the individual of his or her prior intentions may feel like coercion, acquiescing to requests for water will prolong the dying process for someone who has clearly articulated the desire to hasten death.” (Emphasis added)

The authors also state that if the patient’s suffering becomes severe, “proportionate palliative sedation and admission to inpatient hospice should be considered”. This is not the so-called peaceful death at home within two weeks that people envision with VSED.

Lastly, on the legal requirement of  a cause on the death certificate, the authors state:

“the clinician may consider including dehydration secondary to the principle illness that caused the individual’s intractable suffering. Although VSED is a self–willed death (as stopping life support might also be), use of the word “suicide” on death certificates in this context is discouraged because in incorrectly suggests that the decision for VSED stemmed from mental illness rather than intolerable suffering.” (Emphasis added)

So, like assisted suicide, the real cause of death is basically falsified with the rationale that the deliberate stopping of eating and drinking to hasten death is just another legal withdrawal of treatment decision like a feeding tube.

CONCLUSION

Years ago, my mother told me that she never wanted to be a burden on her family.

I never told my children that-especially when they were teenagers and already thought I was a burden to their lifestyles! Instead, I told them that the “circle of life” includes caring for each other at all ages and stages. Such caring also eliminates future guilt and leaves a sense of pride that we did the best we could for each other during our lives.

When my mother developed Alzheimer’s in the late 1980s (and later terminal thyroid cancer), a friend asked if I was going to feed her. At the time, my mother was fully mobile and able to get ice cream out of the freezer and eat it. I was shocked and offended.

“Do you want me to tackle her?!” I asked my friend.

“Oh, no!”, he answered, “I was talking about a feeding tube later on.”

I told him that my mother would die of her disease, not from deliberate starvation and dehydration.

Near the end of her life, we did spoon feed my mother and she enjoyed it very much before dying peacefully in her sleep.

For decades now, I have enjoyed caring for many people with Alzheimer’s or other dementias both personally and professionally.  I can attest that such people can be sweet and funny and as well as difficult at times.

Just like the rest of us!