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.

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.

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

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

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”?

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!

 

Is Abortion Really the Best We Can do for Women?

As a nurse and a mother myself, it was awful to read about the newest and most radical abortion law voted in and just signed by New York governor Andrew Cuomo. The vote on this law was even met with a standing ovation in the New York legislature.

This bill would not only legalize abortions UP TO BIRTH but also revokes the requirement for medical care that must be provided afterwards if the baby survives an abortion attempt. Now, Rhode Island is poised to do the same thing.

The “right to abortion” is a central tenet of the “Women’s Rights” movement and most mainstream media complies by constantly insisting that women want and need abortion. Planned Parenthood and even Oprah Winfrey promote women to “Shout Your Abortion” to show that abortion is empowering and even necessary to women’s success.

But is this true?

“EMPOWERING WOMEN AND DEFENDING LIFE: AN INSEPARABLE CALL TO ACTION”

This is the title of a powerful article by a woman who started working at a crisis pregnancy center after she had received help there in the past when she was pregnant and money was tight.

As the anonymous author writes in FemCatholic:

“What I hadn’t realized was that, in situations of unplanned, crisis, or unwanted pregnancies, the staff set out not only to save the life of an unborn child or give women access to free pregnancy tests and resources (as important as those things are); the counselors want to give women hope, confidence, and the ability to look within and see their own strength. In short, they want to empower every woman they encounter.

My interviewer described to me the approach that counselors took in that initial appointment. She stressed that the goal of the appointment is never to convince the woman one way or another. Instead, counselors provide each woman with information regarding all options, and work to help her realize that she has the strength to do hard things, to be courageous in the face of this difficult situation, and to assure her that there are people ready to love and support her. If the woman chooses to she can continue meeting with a counselor regularly throughout her pregnancy for support, resources, and caring community.” (Extra emphasis added)

The author also writes about her other experiences:

“I have worked at two different maternity homes, and have seen firsthand the freedom that women experience when they discover and engage their strength, gifts, passions, and sheer willpower. It is incredible to watch these empowered women getting and staying sober or clean, finishing or going back to school, applying for jobs, dreaming about their futures with hope rather than despair. Women are capable of amazing things! I honestly believe one of our greatest feminine gifts is the ability to carry on in the face of even seemingly impossible situations.” (Emphasis added)

Her message is both simple and profound:

How can we, women who are passionate about empowering other women, begin to change the conversation, to advance true liberation for women in unplanned pregnancies?”

 

WHAT ABOUT THE “WORST CASE” SCENARIO WHEN THE UNBORN BABY IS DOOMED TO DIE?

In the latest Gallup poll on abortion, 67% of the people polled approve abortion “When the child would be born with a life-threatening illness”. (Of course, sometimes that diagnosis proves to be wrong.)

But is abortion really the best answer for these distressed parents?

The answer is no, according to a recent article in The Public Discourse titled “Do Women Regret Giving Birth When the Baby is Doomed to Die? by Professor Christopher Kaczor of Loyola Marymount University.

Professor Kaczor cites a 2018 article from the Journal of Clinical Ethics titled “‘I Would Do It All Over Again’: Cherishing Time and the Absence of Regret in Continuing a Pregnancy after a Life-Limiting Diagnosis that found:

“Absence of regret was articulated in 97.5 percent of participants. Parents valued the baby as a part of their family and had opportunities to love, hold, meet, and cherish their child. Participants treasured the time together before and after the birth. Although emotionally difficult, parents articulated an empowering, transformative experience that lingers over time.” (Emphasis added)

He also cites another study titled “We want what’s best for our baby: Prenatal Parenting of Babies with Lethal Conditions” from the Journal of Prenatal and Perinatal Psychology and Health that found:

“After the birth, and at the time of the baby’s death, parents expressed thankfulness that they were able to spend as much time with their baby as possible.”

In contrast, Professor Kaczor cites a meta-analysis (a statistical analysis that combines the results of multiple scientific studies) in a Journal of Obstetric, Gynecologic and Neonatal Nursing titled “The Travesty of Choosing after Positive Prenatal Diagnosis” as well as another study to state that:

“Couples experienced selective termination as traumatic, regardless of the prenatal test revealing the fetal impairment or stage in pregnancy in which the termination occurred.”

Professor Kaczor concludes from this:

“Women who receive a lethal fetal diagnosis deserve our compassion and support. Fortunately, organizations such as Caring to Term and Perinatal Hospice & Palliative Care provide information and support for these tremendously difficult situations. Unfortunately, doctors sometimes pressure women into getting abortions and do not share with them the information that is necessary to make an informed choice. Those who receive a lethal diagnosis deserve to know the truth that 97.5 percent of women who continue pregnancies when the baby is doomed to die have no regrets about doing so—and that abortion does not have similar outcomes. Numerous studies have come to the same conclusion: giving life rather than aborting is likely to lead to greater psychological benefit for women whose baby is doomed to die.

CONCLUSION

Many  years ago with my last child, I had abortion recommended to me by two different doctors but not because the baby had an adverse prenatal diagnosis. In my case, abortion was suggested  because, due to my first husband’s severe psychosis, I would most likely wind up supporting my children alone.

The doctors’ prediction about my husband’s prognosis proved to be correct. But I was outraged that these doctors could even think about encouraging an abortion and adding more trauma to a difficult situation. And I was also outraged that they thought I was too powerless to raise 3 children on my own. I wasn’t.

Because of that experience, I now know the power of the simple phrase “I am here for you” and I have said it myself to other mothers, especially ones who were given an adverse prenatal diagnosis.

I know that choosing life is the ultimate victory!

The Power of Memories

Back in the 1990s when I was a home health/hospice nurse, one of my most memorable patients was a woman I will call “Georgia”.

When I was assigned to Georgia, I was told that she had terminal lung cancer but did not feel well enough to get to her doctor visits and the doctor wanted us to find out what she needed since she did not want to be hospitalized.

I was surprised to find Georgia, her husband and 2 dogs were living in a small camper attached to a pickup truck on the gravel banks of a small river about 50 miles from St. Louis.

Georgia was a dignified and very thin older woman with a look of profound sadness in her eyes. She was getting oxygen for her shortness of breath and effective pain medication but her main complaint was unremitting nausea. Her husband was friendly and anxious to know what he could do to help his wife. Both knew her diagnosis was terminal.

Because of years working with cancer patients, I suggested a new anti-nausea regimen that Georgia’s doctor had never heard about. He checked with a pharmacist and we started the regimen. It worked well.

With her symptoms now under control, Georgia finally spoke about her fears for herself and her husband. I was able to reassure her about measures to make her comfortable and other end of life concerns but she still seemed sad.

I also found out that they moved to the little camper on the river after their home was burned to the ground. That loss was devastating for both of them but they were grateful to be able to rescue many family photos.

Then I asked if she would like to show me some of the rescued pictures and she was delighted.

Each picture had a story and Georgia was happily animated as we went through several of them at each visit. Slowly, a picture emerged of a life well-lived with family and a generous spirit at the heart of everything.

As the weeks went by, I didn’t know if we would get to the end of the pictures as she became weaker and weaker but I saw her spirits steadily improve while the sadness receded.

Georgia died late one night and her husband called to tell me that her death was peaceful for both of them. He thanked me for my help but I felt I should be thanking him and Georgia for the lesson they taught me about the beauty and importance of memories accumulated over a lifetime and remembered with love.

Today,  life review and reminiscence therapy  can be found in many hospices and nursing homes.

“REMINISCENCE THERAPY” FOR PEOPLE WITH DEMENTIA

Last week the Wall Street Journal had an article titled “To Help Alzheimer’s Patients, a Care Center Re-creates the 1950s” about a California adult day care center for people with dementia.

This first of its kind center recreates a town square representing the time period from 1953 to 1961 when most of the patients were in the prime of their life.

The rationale is that dementia makes it hard for people to remember the recent past whereas older memories are preserved better for a longer time, “especially memories from childhood and early adulthood”, according to Professor Dorthe Bertsen who heads the Center on Autobiographical Memory Research in Denmark.

According to one small study done in Europe, most participants showed no improvement on cognitive tests but there seemed to be improvement in their mood and quality of life.

In one section of the article about trying reminiscence therapy at home, Mindy Baker, director of education at George G. Glenner Alzheimer’s Family Centers, suggests going through old photos, doing a favorite activity, and telling stories to trigger memories with the family member.

The goal is to facilitate memories rather than challenging inaccuracies  because a person with dementia might get upset if their memories don’t align with the facts.

CONCLUSION

But we don’t necessarily need a fancy facility like the 1950s-inspired day care center to help people with dementia.

Over the years, I have helped care for many patients, friends and family with dementia in their homes, in hospitals or nursing homes. I saw people who hadn’t spoken for a long time light up and join me in singing songs like “You are My Sunshine”.

For my friend Dr. Anne who had dementia, I would tell stories about her achievements and show her articles that she had written and she would grin the rest of our visit.

I learned these techniques when I cared for my mother when she developed terminal cancer and Alzheimer’s in the 1980s and I saw her memory slowly fading away.

Mom finally could not remember my name or my 2 year old daughter’s but she knew we were people she liked. We would all sit together and watch Sesame Street episodes or old movies holding hands and I saw how happy that made my mother even though she could no longer speak.

Most moving to me was that almost to the very end of her life, she was still trying to load the dishwasher and making the sign of the cross. Faith and family were the two things most important to her and this was her way of showing and remembering  this.

Memories are so important to all of us and especially at the end of our lives when they may be all we have left.

Personally, I’m saving up some good ones myself.

 

“Rational” Suicide and the “Elderly”

An article in the May, 2018 issue of the Journal of the American Geriatrics Society titled “Rational Suicide in Elderly Adults: A Clinician’s Perspective”  by Meera Balasubramaniam, MD, MPH  recently appeared in both medical and nursing news sources.

Dr. Balasubramaniam begins with a case study of  “Mr. A” who at age 72 is considered a “baby boomer”, along with a whole section on the “baby boomer” generation-those born between 1946 and 1964 (ages 54-72).

Mr. A was a retired widower who had recently undergone successful cancer surgery and used a walker. He had no terminal illness but  he told a nurse that he always entertained the idea of ending his life “while I’m still doing well” and that if his health showed signs of failing or became too arduous, he would consider suicide. He stated “I’ve lived a good life. I’ll see how it goes, but it’s better to die well in my early 70s than have a life in which I have to be anxious before every doctor’s visit or have repeated surgery or end up in a nursing home.” (Emphasis added) A psychiatric consult showed no mental health problem.

Dr. Balasubramaniam says she wrote this article to “explore whether ethical arguments in favor of physician–assisted suicide apply to elderly adults who are tired of living but are not terminally ill”. (Emphasis added)

While claiming to not take a view on “whether suicide in non–terminally ill elderly adults can be rational”,  Dr. Balasubramaniam states that “It is important to consider the possibility that the combination of negative perceptions toward aging and dependency, greater social isolation, increasing access to drugs, greater need for autonomy, and an overall generational familiarity with suicide may be accounting for a higher proportion of older adults like Mr. A expressing the wish to end their lives on their own terms”. (Emphasis added)

DEATH AND THE BABY BOOMERS

It may seem incredible to even consider “tired of life” and older age as a “rational” reason for medically assisted suicide. However, Holland and Switzerland already allow it and the article itself cites the UK group “My Death My Decision” (formerly SOARS, The Society for Old Age Rational Suicide) that supports the idea that mentally competent older adults should have the right to assisted suicide rather than face an uncertain life that may be “fraught with frailty and dependence”.

As a Baby Boomer myself, we baby boomers were among the first teenagers exposed to a growing societal acceptance of new concepts like divorce , “free love” with the help of the birth control pill and legalized abortion, the “population bomb” predicting global cataclysm if people didn’t stop reproducing, the use of illegal drugs like marijuana and LSD for recreation, the rejection of religious principles and the slogan “don’t trust anyone over 30”.

So perhaps it should not be puzzling that people over 55 comprised the majority of people dying by physician-assisted suicide in the latest Oregon report since we saw so many of the traditional civil and moral moorings in society pulling loose when we were at an especially vulnerable age.

CONCLUSION

As one sage said, “Old age ain’t for sissies!” But, of course, this is not a “rational” excuse for legalizing assisted suicide for anyone-of any age.

Still, our older citizens are an especially high risk group for elder abuse, household accidents, money scams, social isolation, age-related medical bias and poor or even dangerous nursing home care.

Having friends, family and a meaningful purpose in life becomes harder when older people see their loved ones die or move far away and physical or mental limitations develop in themselves. Many older people fear losing their independence as well as being a “burden” on others.

Medically assisted suicide is not the answer but what else can we do to help?

We can start with our own family members, friends and neighbors. Like all of us, older people need to feel loved and appreciated. Look for ways to assist an older person that he or she might not have considered or be too embarrassed to ask about.

When I was a young wife and mother, our church parish started a Good Samaritan program to identify and help people with special needs of any age. It was a great success and our parish became more inclusive and accessible to everyone, especially the elderly. That was a benefit to all of us.

Other programs such as visiting one person for one hour each week in a local nursing home have helped some parishes to combat the sad reality I have seen that few people in nursing get  visitors, especially people with dementia.

Many of us naturally feel uncomfortable about going to nursing homes, but such places are usually thrilled to have volunteers and most have training programs.

Personally, my first volunteer activity was as a young teenager in a nursing home and it changed my perception of “old people” and life itself. I was amazed by the wisdom and stories the residents told as well as how much they appreciated anything I did. It was a great experience for a shy, gawky teen like myself.

Many years later, I took my young children to visit their grandmother in a nursing home after telling them what to expect in terms of sights, smells and sounds. Afterwards, my youngest daughter asked why everyone wanted to touch her leg while I held her. When I explained that the residents rarely saw a 2 year old and were so glad to see her, she grinned and said “OK!”.  She understood even at that young age.

In a society that seems to constantly celebrate youth and health, we need to make sure that our elderly also feel valued and supported.

And we might just save a life!

 

 

 

 

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.

Whatever Happened to Common Sense at the End of Life?

In 2007, I wrote an article titled “Whatever Happened to Common Sense at the End of Life?” for Voices magazine. I wrote about real life situations that people and their families faced along with the principles involved. I am reprising that article here in response to the many questions I receive about dealing with such difficult situations.

Unfortunately since I wrote this article, the situations people and their families face have become worse: More states have legalized assisted suicide and have expanded the definition of “terminal”,  more parents of babies with disabilities are fighting for their  right to treatment , voluntary stopping of eating and drinking (VSED) is promoted as a legal way to kill oneself, etc.

I have and will continue to write on these newer issues but the basic principles are still valid.

Whatever Happened to Common Sense at the End of Life?

Withdrawal of treatment, “living wills”, terminal sedation, assisted suicide, organ donation, etc. Currently, it’s virtually impossible to escape all the death talk in the media and elsewhere. For example, if you are admitted to a hospital for almost any reason, you or your relatives will be asked if you have or would like information about documents formalizing your “end-of-life” choices.

But despite all the hype, not every situation involving end-of- life issues has to involve wrestling with big ethical dilemmas. Many times, there are relatively simple considerations or strategies that actually used to be commonly employed until the introduction of the so-called “right to die”. Accurate information, common sense and a good understanding of ethical principles can cut through the “right-to-die” fog and make a person’s last stage of life as good as possible both for the person and his or her family.

Here are just four examples:

Prolonging Death or Providing Comfort?

I once cared for Mary (all names have been changed), an older woman who was near death with cancer. Her loving family took her to the doctor when she became confused and severely short of breath. An x-ray showed a fluid buildup near her lungs. The doctor inserted a long needle, aspirated the fluid and Mary immediately improved. However, the family was still worried. They asked me what they should do if the fluid built up again because they were afraid that this would prolong her death. I told them that the primary question now was comfort. If, for example, fluid did slowly build up again but Mary was comfortable, it could be burdensome to aspirate the fluid. However, if Mary did develop severe breathing problems that could not be controlled by medication, they might want to consider another aspiration since the goal was to make Mary as comfortable as possible during the short time she had left.

“Why, that’s just common sense!” the daughter exclaimed. Exactly!

Mary soon peacefully died at home with her family, never needing another medical intervention.

Families often suffer undue fear about prolonging death when a family member is dying and this can spoil what can be one of the most meaningful times in life.

After almost 40 years as a nurse, I have found that barring murder or other such situations, people generally die when they are ready to die even regardless of medical interventions. When death is imminent, the big priority should be comfort rather than whether a person might live a few hours or days longer.

What if an Elderly Person Doesn’t Want Treatment?

One of my friends was very worried about his elderly grandmother whose health seemed to be declining. She ate very little and said she was ready to die. Efforts to improve grandma’s nutrition didn’t work and she refused a feeding tube. My friend was finally able to persuade her to at least try a small feeding tube inserted through her nose.

Within a short time, there was a dramatic improvement in grandma’s mood and physical functioning. According to my friend, she was back to where she was 10 years before and the feeding tube was removed. (She lived comfortably several more years.)

Too often, doctors and even families assume that an elderly person who doesn’t feel well is just dying of old age without exploring possibilities such as depression, poor nutrition, loneliness, treatable physical problems, etc. Sometimes the answer may be as simple as antidepressants or better nutrition. At the very least, it is worthwhile to explore the options. If an elderly person is truly dying, he or she will die but the family will have the comfort of knowing that they did what they could do.

For example, in a similar situation, another friend was caring for her frail, elderly mother with chronic lung and heart problems. Ann’s mom agreed to try a feeding tube but after a short initial improvement, her mom started going downhill again. Fluid began to build up and the feedings were stopped. Ann’s mom was given what little food and fluid she wanted and she eventually died of natural causes.

Particularly in the frail elderly, it can be difficult to determine whether or not a person is truly dying. 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. Far too many times, feeding tubes and other interventions are automatically assumed to be futile and/or burdensome or reasonable options are presented as just a yes or no choice. But there is another alternative that is often ignored: trying an intervention with the option of stopping it if it truly is futile or burdensome.

There are no guarantees in life or death but even finding out that something doesn’t work can be a step forward.

Shouldn’t We Be Allowed to Die?

Years ago, I received a phone call from a distraught fellow nurse living in California. Her sister, Rose, was comatose from complications of diabetes and had been in an intensive care unit for three days. Now the doctors were telling the family that Rose’s organs were failing and that she had no chance to survive. The doctors recommended that the ventilator and other treatments be stopped so that she could be “allowed to die”. My nurse friend was uncomfortable with this even though the rest of the family was ready to go along with the doctors.

As I told her, back when I was a new nurse in the late 1960s, we would sometimes see patients in the intensive care unit who seemed hopeless and we would speak to families about Do Not Resuscitate (DNR) orders. However, the one thing we didn’t do was to quickly recommend withdrawal of treatment. We gave people the gift of time and only recommended withdrawing treatment that clearly was not helping the person. Some patients did indeed eventually die but we were surprised and humbled when an unexpected number of these “hopeless” patients went on to recover, sometimes completely.

About six weeks after the initial phone call, my friend called back to tell me that the family decided not to withdraw treatment as the doctors recommended and that her sister not only defied the doctors’ prediction of certain death but was now back at work. I asked her what the doctors had to say about all this and she said the doctors termed Rose’s case “a miracle”.

“In other words” she noted wryly, “these docs unfortunately didn’t learn a thing.”

Cases like this are usually not miracles. Virtually every doctor and nurse has seen at least one surprising recovery and almost every day brings a new media report about yet another unexpected recovery. However when such considerations as cost, a poor prognosis or low quality of life intersect with the “right to die”, people can literally be forced to die prematurely. When doctors and ethicists decide to play God — even with good intentions — that arrogance can be fatal.

Isn’t It Compassionate to Support a Person’s Right to Die?

When I first met Frank, I was puzzled. Frank was a terminally ill man who I was supposed to see for pain control but he didn’t seem to be in any physical pain at all. I talked to Frank’s wife Joan who tearfully confided to me that Frank was cleaning his gun collection when he asked her if she would still be able to live in their home if, in his words, “anything happened”.

Joan knew he was talking about shooting himself and even though she was horrified, she said she knew the right thing to say: “I will support any decision you make”. However, she later panicked and called the doctor to ask about pain control and that’s when I came in.

When I suggested to Joan that Frank’s real question might not be about their home but rather about whether his slow death might be too hard on both of them, she was stunned and said that this never occurred to her. She loved Frank and she wanted to care for him until the end.

Frank and Joan then finally had an open and long overdue discussion about their sorrow and fears. When I last saw them, they were holding hands and smiling. Frank died peacefully — and naturally — a few weeks later with his wife at his side.

As a situation like this shows, political correctness can actually be lethal itself. Unfortunately, the public is given the message that “tolerance” is a paramount value. From abortion to euthanasia, we are constantly told that opposition to these practices is callous and inhumane. We are told that we cannot impose our own narrow morality on people who do not agree.

Sadly, in the case of assisted suicide/euthanasia, it’s this tolerance that really can make the life or death difference. I’ve worked with some suicidal people over the years and I have found that ambivalence over whether or not to kill oneself is virtually routine. For example, one terminally ill woman I cared for said that she would take an overdose when she left the hospital. She didn’t seem sad or depressed and was actually quite animated and smiling. As she put it, she was just tired of being tired and feared that the future “was just all downhill”.

However, when we talked about her feelings, the ramifications of her decision and what help was available, she slowly changed her mind. But when she excitedly told her friends about her new decision to live, these friends tracked me down to give me a real tongue-lashing about not supporting this woman’s original choice.

The ultimate irony of the push to spread legalized assisted suicide beyond Oregon’s terrible law is that at the same time we naturally see suicide as a tragedy to be prevented, we are pressed to accept that suicide is a compassionate choice for the terminally ill and even others.

A Time to Live, a Time to Die

When I worked as a hospice nurse years ago, our guiding principle was that we neither prolonged nor hastened dying. I totally supported this and I felt great satisfaction helping my patients and their relatives live as fully as possible until natural death. We nurses not only made sure that people were as physically comfortable as possible, we also helped with spiritual, emotional and practical concerns.

Unfortunately, the “right-to-die” enthusiasts have had way too much success in trying to convince both medical personnel and the public that choice in dying is really the ultimate principle. However, trying to micromanage death by such measures as withdrawal of basic treatment, terminal sedation, lethal overdoses, etc. profoundly changes the medical system, even for people who may recover or who may live with disabilities.

The “right to die” movement is really about despair rather than hope or true justice. People deserve the best in health care and that includes the right to both excellent care and a natural lifespan.

It’s just common sense.