The Slippery Slope-Tactics in the Assisted Suicide Movement

I first saw this tactic  in the mid-1980s when Missouri was considering a “living will” law to allow a person to refuse “death prolonging procedures” if a person became terminally ill and unable to speak for himself or herself.  Some of us warned about a broader agenda, citing court cases involving feeding tubes and seriously brain-injured but non-terminally ill patients like Paul Brophy and Claire Conroy in New Jersey and Massachusetts . In  response, “right to die” activists (as they were known then) added the ”safeguard” of not allowing the withholding of food and water to the Missouri law  and the bill was passed.

Not surprisingly, Missouri soon faced the Nancy Cruzan case  involving the withdrawal of a feeding tube from a non-terminally ill young woman in a so-called “persistent vegetative state”.  Soon after that,  a Missouri Designated Health Care Decision Maker Act was passed that would allow a person to designate someone to make health care decisions (or a relative if there is no document) including withholding or withdrawing of feeding tubes when the person was incapacitated whether or not they were terminally ill or even in a so-called “vegetative state”.

Now, over 30 years later, we have legalized physician-assisted suicide in several states and the District of Columbia and the former “right to die” groups are now known as Compassion and Choices.

TODAY’S SLIPPERY SLOPE TACTICS

In a December 2016 commentary article titled “End of Life Liberty in DC” for a publication supported by the University of Pittsburgh School of Law, lawyer and long-time assisted suicide activist Kathryn L. Tucker surprisingly criticizes the new assisted suicide law quietly signed into law by the mayor of Washington, DC. this month.

While most people might believe that passage of yet another assisted suicide law would be cause for celebration for assisted suicide activists, Ms. Tucker is unhappy with the so-called “safeguards” in the DC law-just as “right to die” activists were with Missouri’s “living will” law.

Ms. Tucker now complains about the “many burdens and restrictions imposed” by these “safeguards” which, ironically, are added by assisted suicide activists themselves when they  “routinely face arguments of insufficient ‘safeguards’”.  Ms. Tucker lists some of these so-called “burdens and restrictions”:

  • Patients electing AID (aid in dying, the activists preferred term for physician-assisted suicide) must make at least three requests, two oral and one written.
  • The requests must be witnessed.
  • A second opinion confirming diagnosis and prognosis is required.
  • A mental health specialist must be consulted if the attending or consulting physician has concerns regarding the patient’s ability to make an informed decision.
  • A minimum fifteen-day waiting period must elapse between the two oral requests.
  • Physicians must collect and report a vast amount of demographic data on who chooses AID and why.

Ms. Tucker claims these so-called burdens and restrictions “impose heavy governmental intrusion into the practice of medicine, which is concerning because it creates barriers to patient access and to physician participation.” (Emphasis added)

Instead, Ms. Tucker proposes another, more expansive statute without the usual so-called “safeguards” that would provide:

a clear safe harbor (i.e. immunity) for physicians to practice aid in dying in conformity with standard of care. This reflected a positive step in the direction of normalizing AID within the practice of medicine. Medicine is not routinely governed by statute but, rather, by the type of care that a competent health care professional would render in similar circumstances —referred to as standard of care or best practice. (Emphasis added)

In other words, Ms. Tucker is proposing a policy that makes assisted suicide simply normal medical care with special protections against criminal, civil or disciplinary actions for doctors who participate even though such immunity is not given for other medical practices.

CONCLUSION

Ms. Tucker and other are deadly serious about this. When Vermont passed its assisted suicide law in 2013, the law contained a “sunset” provision that would end “nearly all regulation” after the first three years. Fortunately, this was repealed in 2015.

However, assisted suicide activists will not give up on this as Compassion and Choices makes clear:

We firmly believe — and experience demonstrates — that working within healthcare systems to normalize medical aid in dying will ensure fewer people suffer at the end of their life. (Emphasis added)

As Ms. Tucker demonstrates, assisted suicide advocates will promise anything to get assisted suicide laws passed but it appears that they will never be satisfied until assisted suicide becomes a private and unfettered practice using well-funded groups like Compassion and Choices as the potentially taxpayer-funded “experts” in charge of policies, referrals, training and education.

Ethics and Alzheimer’s-Part Two: Feeding Tubes

In 1988 during the Nancy Cruzan case involving a young, non-terminally ill woman in a so-called “persistent vegetative state” whose parents wanted her feeding tube withdrawn so she would die, I was asked if I was going to feed my mother who had Alzheimer’s disease. At the time, my mother had no problems with eating but I knew the real question was about a possible feeding tube later on.

Ironically, I had just written an  op-ed on the Cruzan case titled “Feeding is not Extraordinary Care  and I pointed out that if the withdrawal of food and water from people with severe brain injuries was accepted, the pool of potential victims would expand.

I was thinking about people like my mother and, sadly, I was right.

In 1993, just 3 years after Nancy Cruzan died a long 12 days after her feeding tube was removed, a letter in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, one of the future architects of Obamacare, acknowledged that the actual proof purported to show that the Cruzan case met Missouri law requiring “clear and convincing evidence” that Ms. Cruzan would not want to live in a so-called “vegetative” state rested only on “fairly vague and insubstantial comments to other people”.

However, he noted that

“…increasingly it will be our collective determination as to what lives are worth living that will decide how incompetent patients are treated. We need to begin to articulate and justify these collective determinations.” (Emphasis added.) Source: The American Journal of Medicine January 1993 Volume 94 p. 115

ALZHEIMER’S AND FEEDING TUBES

When I was asked about whether I would feed my mother with Alzheimer’s, I gave the same answer I gave when my baby daughter Karen with Down Syndrome and a heart defect was critically ill in 1983: Their anticipated deaths must be from their conditions, not from deliberate starvation and dehydration.

In the end, neither one needed a feeding tube. My daughter’s kidneys and other organs shut down and, since food or water would cause worse fluid overload, Karen was not given extra fluid and her heart gave out a short time later. In my mother’s case, she eventually needed to be spoon-fed until she quietly died in her sleep.

As a former hospice and ICU nurse, these scenarios are very familiar to me. Multiple organ failure sometimes occurs with critical illness and dying patients often gradually lose their appetites as they approach death. In those cases, we would give what little these people want or need until death. But for people not dying or near death, we made sure that they had at least basic  medical care and the life essentials of food, clothing and shelter. This is-or used to be-simple common sense.

ALZHEIMER’S AS A FATE WORSE THAN DEATH

The easiest way to get people to accept death by starvation/dehydration is to get them to choose it for themselves even before they have a problem.

Thus, media stories of people and their families suffering tremendously because of Alzheimer’s are very persuasive. People fear becoming an economic and emotional burden on their families. Not surprisingly, many people then willingly check off feeding tubes and other medical treatments in their advance directives.

Position papers like that from the American Geriatrics Society and the Alzheimer’s Association can also paint a dark picture:

The Association asserts that research evidence support no medical benefit from feeding tubes in advance dementia and that feeding tubes may actually cause harm in the advanced state of Alzheimer’s. Additionally, it is ethically permissible to withhold nutrition and hydration artificially administer by  vein or gastric tube when the individual with Alzheimer’s or dementia is in the end stages of the disease and is no longer able to receive food and water by mouth

The presumption is that such a death is peaceful and painless when a person is assumed to be unaware in a “vegetative” or late Alzheimer’s state. However, Bobby Schindler has written an account of the reality  of a prolonged starvation/dehydration death on his sister Terri Schiavo that was hidden from the public.

“JOE’S” CASE

Several years ago, I cared for a man with early stage Alzheimer’s who had a serious pneumonia needing a ventilator for a couple of days. Afterwards, Joe (not his real name) was alert and cooperative but the ventilator tube unexpectedly affected his ability to swallow and speak easily. His family asked about a feeding tube and special swallow therapists to try to retrain his throat muscles so that he could eat and drink safely. That is how an even older friend of mine in the same situation but without Alzheimer’s was successfully treated recently.

However in Joe’s case, a neurologist was first called to evaluate Joe’s mental status. I was there as the doctor asked him questions like “How many fingers am I holding up?” The man answered the questions correctly but the neurologist immediately wrote for nothing by mouth including crucial blood pressure medications. He also then recommended no feeding tube to the family. No swallow therapy was ordered. Joe was never asked about this.

When I questioned the neurologist and pointed out that the man had given correct answers by nods and holding up the correct number of fingers when asked, the neurologist responded by saying that the man did not hold up his fingers “fast enough”!

This is the tragic reality when we judge some lives as not worth living.

UP CLOSE AND PERSONAL

One of my oldest friends, “Dr. Mary” (not her real name), is a pro-life doctor who asked me years ago to be her power of attorney for health care if she became incapacitated. She had never married and had no close relatives. She told me what she wanted, especially in light of the Nancy Cruzan case, and signed an advance directive available through our archdiocese.

My friend now has presumed Alzheimer’s dementia and she is now in the later stages. She can still feed herself, albeit somewhat messily. She no longer remembers my name or her friends’ names but she is delighted when we come.

At almost 90 and with inevitable death approaching, she now has a Do Not Resuscitate (DNR) order but her nursing home is well aware that this does not mean any reduction in care or attention.

Along with her other friends who visit and help, our goal now is to make Dr. Mary as happy and safe as possible. If she needs spoon-feeding, she will get it. All of us hope that Dr. Mary will never need a feeding tube but she will not be denied one if necessary.

But best of all, Dr. Mary will continue to receive our love until her Lord calls her home.

LIVING WITH “LIVING WILLS”

In the early 1970s when I was a young ICU nurse, none of us medical professionals had even heard of a “living will”. There was a universal presumption for life and “quality of life” was something to be improved, not judged.

Nevertheless, sick people could and did refuse treatment and even check themselves out of the hospital against medical advice. When patients appeared to be dying, they or their families could agree to a “do not resuscitate” (DNR) order. Overly aggressive or useless treatments could be discouraged when such measures were considered medically futile or excessively burdensome for the patient. But one thing we didn’t do was offer to withhold or withdraw medical care like tube feedings to cause or hasten a patient’s death.

Unknown to us, all this began to change after Louis Kutner, a Chicago lawyer, wrote an article in the Indiana Law Journal titled Due Process of Euthanasia: The Living Will, A Proposal” in 1969. (emphasis added). By 1970, The Euthanasia Society of America (later renamed the Society for the Right to Die) distributed 60,000 living wills. In 1976, California passed the nation’s first “living will” law. Now, there are proposals to eventually include even physician-assisted suicide in “living wills”.

I use the common term “living will” to represent the wide variety of end of life documents that have evolved since the original “living will”, including the newest but problematic one called POLST (physician orders for life-sustaining treatment).

I wrote a 2001 article “Of Living Wills and Butterfly Ballots”   because I was concerned that many people were signing such documents with little knowledge of the history and problems with such documents that I witnessed as a nurse and ethics committee member. However, with the crucial help of a sympathetic media, court cases involving seriously brain-injured people like Terri Schiavo and government mandates such as the 1990 Patient Self-Determination Act have resulted in the heavy promotion of “living wills” as simple, worry-free documents. Now the federal government is set to begin paying healthcare providers for talking to all Medicare beneficiaries about such documents.

CAN “LIVING WILLS” BE HAZARDOUS TO YOUR HEALTH?

Recently, I talked to lawyers who expressed confusion and concern over the “living wills” they were asked to draw up. In addition, Medscape, a subscription website for medical professionals, and the American Medical News have published recent articles such as “Advance Directives May Be Hazardous to Your Health”  and “Clearing Up Confusion on Advance Directives”. The last article even warns

“misinterpretations of end-of-life documents too often result in lost lives or unwanted care” such as when “physicians incorrectly assume that DNR means not to treat a patient who is critically ill”.

When even doctors and lawyers are confused, there is a big problem. In the real world of medicine, I even heard some doctors say that if in doubt, it might be legally safer not to treat than to treat someone with a “living will” in an emergency because of lawsuits where a patient with a “living will” survived or had serious impairments.

SHOULD I EVEN HAVE A “LIVING WILL”?

When “living wills” first came out, I felt I was safer not to have one to make sure I received treatment. Later, I changed my mind. I felt it was safer to designate someone I trusted with the legal authority to make decisions if I was unable to speak for myself rather than just leave it to my family members, some of whom vigorously disagreed with my stance for feeding brain-injured people like Terri Schiavo.

I never tell people that they must or must not have a “living will” but everyone should be fully informed. I do encourage people to check out information sites like the Pro-Life Healthcare Alliance’s “Informed-A Guide to Critical Medical Decisions”  which has sections explaining ventilators, CPR (cardiopulmonary resuscitation), feeding tubes, misuse of opioids and sedatives as well as end of life considerations.

There are also several informative and protective “living will” documents from organizations like the Patients Rights Council and the American Life League. The National Right to Life Committee even has such documents online and specific to state laws.

SOME POINTS TO CONSIDER BEFORE SIGNING A “LIVING WILL” STYLE DOCUMENT

Here are some of my personal recommendations as a nurse before signing a standard “living will” or even a protective one.

1. Make sure the document is as short as possible, simple to understand and that the presumption for life is expressly stated so that if doctors are in doubt about your wishes, they should treat you.

What most people do not know is that “living will” style documents often go unread by doctors and nurses until a critical situation develops and time is of the essence. Even worse, some doctors and nurses still assume or misinterpret “living wills” as meaning the patient does not want treatment, especially if the patient is older or disabled.

2. Avoid vague terms like “significant recovery” and “terminal event” that have no objective medical standard and can easily be misinterpreted.

I’ve seen patients who have just had a stroke or head injury incorrectly judged “terminal” or “incurable by doctors. Such patients often get better with time and treatment. And, of course, any treatment that is medically futile or excessively burdensome to the patient can be ethically withdrawn later. I add the emphasis because now futility and burden are too often assumed to mean an inadequate “quality of life” or economic burden to the family or society.

3. Designate one person you trust to make your medical decisions with a backup person or persons.

Sometimes when only one person is the designated decision maker, he or she may be unavailable or incapacitated so a backup is important especially in a critical situation.

4. Consider not checking off particular treatments or conditions to be automatically refused.

Personally, I wanted a positive “living will” that only designates my decision maker and his/her right to make decisions about my care rather than signing a “living will” to refuse future treatment or set possible future conditions where I would want treatment stopped or withheld. Instead, I want all current options, risks and benefits of treatment fully explained to my decision maker based on my current condition.

5. Many “living wills” contain a section on pain with such sentences such as “I want my doctor to give me enough pain medicine to relieve my pain”. You might consider adding a phrase like “without hastening my death.”

I have seen unnecessarily high doses of pain medicine deliberately given to make a patient unconscious while food and water were stopped. Often, this was called “comfort care” instead of terminal/palliative sedation  but the result was hastening or causing death by dehydration and/or suppression of breathing.

Everyone wants and deserves adequate pain control at the end of life. Carefully increasing doses of pain medication and other measures work in virtually any situation and family members should advocate this for their loved ones.

CONCLUSION

There may be no perfect “living will” but as a former hospice nurse and family caregiver myself, I believe that dying people have a right to a good death with as few medical interventions as possible for comfort without deliberately hastening or causing death. The time before death may be short or long but I believe that people have the right to die at their own natural pace.

Death is not something to get over with as soon as possible. As some people with terminal illness have told me, they hated being treated as if they were already dead when they were still alive. They wanted to hear jokes, be with family and friends, go to church, etc. And since hearing is thought to be the last sense to go, I interacted with my dying patients in comas just as I did with my conscious patients.

The process of coming to terms with  death can be difficult at times but it also can be a meaningful time to review a life with all its joys and sorrows as well as a time for family and friends to show love, support and even healing.

The “Miracle” of Dying (in hospice without food and water)

Recently, a fellow nurse sent me an article she found disturbing titled “The miracle of dying” from the Los Angeles archdiocesan newspaper.

The article is ostensibly about the laudable goal of promoting emotional and spiritual healing for a dying person with comprehensive hospice and palliative care when cure is not possible.

Unfortunately, the article begins with the story told by Diane, dean of nursing at a Catholic university in California, about her father’s death. Diane’s frail, 99 year old father living in a Florida assisted living facility with no apparent life-threatening illness called her to say “I’ve outlived my usefulness. I’m ready to go”. When he decided to quit eating and drinking, Diane arranged for hospice care.

According to the article, it wasn’t long before the hospice nurse called back, saying it would take about 48 hours for her father to die and Diane took a flight to Florida to be there when he died.  The obvious impression left is that her father’s wish to stop eating and drinking was granted by the hospice.

Was Diane’s father evaluated physically and psychologically?  I have seen many elderly people who also felt their lives were useless successfully treated for depression as well as elderly people who had physical problems with eating regain their health with professional help. Why would we just send them to a hospice without exploring other options?

When I worked in hospice years ago, we would never have approved deliberate starvation and dehydration even at the patient’s request. We followed the trusted hospice philosophy that we neither hasten nor prolong the dying process. Unfortunately, we are seeing that ethical standard eroding to just honoring a patient’s “choice” to die. Ominously, state reports in Oregon, the first state to legalize physician-assisted suicide show that over 90% of reported physician-assisted suicide victims were enrolled in hospice.

Terminal Sedation

The rest of the article discusses death and California’s new physician-assisted suicide law with an ethicist and a doctor connected with Catholic health care institutions. While neither man supports the new California assisted suicide law, the comments by Roberto Dell’Oro, director of Loyola Marymount University’s Bioethics Institute are particularly alarming. Note this section from the article:

“For years, doctors have performed what’s known as “terminal sedation,” not to end somebody’s life but to make their patients more comfortable. Estimates of very seriously ill patients being terminally sedated have ranged from 2 to more than 50 percent. But the subject is rarely brought up in public.

One of the pillars it rests on goes back to the “double-effect” rule attributed to St. Thomas Aquinas in the 13th century, which justifies killing in times of war and for self-defense.

Regarding end-of-life matters, the principle posits that even when there’s a foreseeable bad outcome (death), it is morally acceptable if the intentional good outcome (relief of pain) outweighs it.

‘It’s a matter of stopping feeding and increasing pain medication that leaves you to die,’ explained Dell’Oro. ‘It’s not the practice of assisted suicide. Because the motivation, the intentionality of the physician remains the alleviation of pain, not the killing of the patient. That’s the fundamental difference.’ (emphasis added)

Unfortunately, this ethicist’s quote echoes Jack Kevorkian’s defense that he was just “relieving suffering” not mercy-killing his victims when he hooked them up to his death machine. There is a big difference between adequately treating pain even if that would diminish a person’s consciousness and deliberately rendering a person unconscious until death while withholding food and water. And now we have ethicists supporting terminal sedation for even “intractable emotional or spiritual anguish”.

COMPASSION AND CHOICES

Compassion and Choices is the pro-assisted suicide organization formerly known as The Hemlock Society and made famous by the Brittany Maynard physician-assisted suicide case. On its’ website, Compassion and Choices describes voluntary stopping of eating and drinking (VSED) and terminal sedation as good end of life options:

Voluntarily Stopping Eating and Drinking – When patients die naturally of chronic diseases, such as cancer, bodily changes take away their appetite, and they stop eating before they die. Some people decide to speed up the dying process by voluntarily stopping eating and drinking (VSED), which also relieves some of the symptoms common to dying. If a patient is already close to death, VSED usually leads to death in one to three weeks. Many people have used this method successfully….C&C believes hospice care is essential during VSED.” (Emphasis added)

In the case of terminal sedation which they call “palliative sedation”, it is described as:

Some dying patients experience so much pain or such unmanageable symptoms they cannot get relief from medications unless the dose is high enough to make them unconscious. Palliative sedation provides enough medication to keep the person unconscious and continuously pain and symptom-free. All nutrients and fluids are stopped, and the person usually dies within a few days. Patients using palliative sedation should be monitored around the clock to be sure the sedation is adequate. Intensive monitoring can be done at home under hospice care. (Emphasis added)

Of course, Compassion and Choices is working to legalize physician-assisted suicide throughout the US but, in the meantime, note that it endorses VSED (voluntary stopping of eating and drinking) and terminal sedation in hospice as a legal alternative.

When I was a hospice nurse in the mid-1990s, terminal sedation and withholding food and water were unthinkable.  We worked hard to make sure our terminally ill patients and their families had physical, emotional and spiritual support. It was gratifying to hear our patients and families tell us how meaningful and even healing the experience was. I even saw some dying people unexpectedly linger until an issue was resolved, a loved one came to the bedside or even until the family was ready.

When we try to just get death over with as soon as possible, we are really abandoning our dying patients and their families at  one of the most important and momentous events in their lives. We need to respect death not accelerate it.