2008 Voices: Is Palliative Sedation Becoming Another Form of Euthanasia?

Voices Online Edition
Vol. XXIII, No. 3
Michaelmas 2008

Is Palliative Sedation Becoming Another Form of Euthanasia?
by Nancy Valko, RN

Annie (not her real name) was, as my children would put it, really “freaking out”. She was only in her 30s when it was discovered that she had rapidly advancing terminal cancer. Unfortunately, she had stopped taking her medication for her schizophrenia and her behavior deteriorated rapidly.

The decision was made to give her sedatives by intravenous drip for a short time and then stabilize her on her usual medication. Within a couple of days, the continuous sedative drip was slowly stopped and we were all relieved that Annie was now able to understand and deal with her terminal diagnosis.

This incident happened almost 20 years ago. Today, we have a much different scenario involving sedation and the end of life.

This year, Assemblywoman Patty Berg, a California lawmaker who has repeatedly tried to legalize assisted suicide, sponsored the “Right to Know End-of-Life Options Act” (AB 2747), a bill that would require doctors to discuss such options as “palliative sedation” and “voluntary stopping of eating and drinking” with terminally ill patients. Not surprisingly, Compassion and Choices (the former Hemlock Society) is an enthusiastic supporter of this measure.

PALLIATIVE/TERMINAL SEDATION

As I wrote in 2002,1 supporters define terminal sedation as the deliberate “termination of awareness” for “relief of intractable pain when specific pain relieving protocols or interventions are ineffective” and/or “relief of intractable emotional or spiritual anguish (existential suffering, psychological distress, emotional exhaustion).”2 Since such sedation continues until death, there is usually the withdrawal of all treatment, including even food and water, so that death occurs as quickly as possible. No matter how long it takes until death occurs, supporters of terminal sedation insist that the cause of death is the underlying illness rather than suppression of breathing, dehydration or the removal of essential drugs such as insulin or heart medications. It is unfortunate that supporters of terminal sedation now frequently change the term to the more benign-sounding “palliative sedation”. True palliative sedation such as Annie’s is not the same as this terminal sedation.

Paradoxically, despite the mainstream media’s fascination with “right-to-die” issues, I have only recently seen any mainstream media source even start to look at the issue of sedating people to death.

In March 2008, Time magazine published an article, “When is Sedation Really Euthanasia?”3, in which Kathleen Kingsbury, the author, readily admits “terminal sedation … often goes hand-in-hand with cutting off other medications or removing a patient’s feeding tubes” and that terminal sedation is beginning to supplant lethal overdoses in the Netherlands as the preferred death procedure. In the end, however, the author appears to agree with Dr. Ira Byock, a palliative care specialist and active promoter of terminal sedation, who maintains that such sedation is a legal, “end-of-life” option that is sometimes abused by being done “too early”, without the person’s consent or “to sidestep legal requirements to perform euthanasia”.

Miss Kingsbury also quotes Dr. Porter Storey, executive vice-president of the American Academy of Hospice and Palliative Medicine, as saying, “the option to sedate can be a tremendous liberation”, relieving patients of their “fear of dying or not getting adequate help at the end of life”. Dr. Storey maintains “Good doctors don’t intentionally shorten life.”4 Of course, a good doctor would not intentionally shorten life but sedating someone into unconsciousness and deliberately depriving him or her of food and water will in fact end life if it goes on long enough, regardless of the stated intention of the alleged good doctor.

CALIFORNIA’S BILL

While controversial public cases like Terri Schiavo’s involved removing food and water from so-called “vegetative” people without “living wills” or other documents, California’s “Right to Know End-of-Life Options Act”5 would allow a fully conscious, terminally ill person to intentionally stop eating and drinking while being sedated until death. However, causing or hastening death to relieve suffering is euthanasia no matter what procedure is being used and regardless of whether a person consents. And, of course, it is a very small step from allowing terminal sedation to actually allowing a faster lethal overdose.

The centerpiece of the California bill was a menu of “end-of-life” options including palliative (terminal) sedation and “voluntary stopping of eating and drinking” for people expected to die within a year. California health care providers who had ethical or medical objections to such palliative sedation were legally required to transfer the patient to a provider with no such scruples. Given the current “right-to-die” mindset in much of medical education, this does not bode well for developing future ethical health care providers when the bill stated “Every medical school in California is required to include end-of-life care issues in its curriculum and every physician in California is required to complete continuing education courses in end-of-life care.”

When pro-life, disability, and other groups of concerned citizens mounted a campaign against AB 2747, the sponsors of the bill started removing some parts of the bill to get it passed, but, as of August 2008, the bill has not passed and the opposition to it continues.

EUTHANASIA STRATEGY

As assisted suicide bills have regularly failed in state legislatures in the years since Oregon passed its assisted suicide law, euthanasia supporters have had to change tactics, although not their ultimate goal of choosing death as a constitutional right. The outreach to medical groups like hospice and palliative care organizations is particularly disturbing.

Euthanasia supporters have been successful in getting some medical and nursing groups to change their official positions from opposition to assisted suicide/euthanasia to neutrality on the issue. And now, almost all of the mainstream media accepts death by withdrawal of treatment as humane and legal for the severely brain-injured. It was just a matter of time before that vulnerable group of people expanded to include people with lesser disabilities and now even the fully conscious but terminally or “hopelessly” ill person.

But as everyone really knows, it is virtually impossible to starve and dehydrate to death painlessly. The idea of terminal sedation to make such a death possible thus becomes essential to the process.

Bills like California’s are not only incremental steps to the goal of legalizing euthanasia. They are also a crucial part of the effort of “right-to-die” groups to reeducate the public, especially doctors and nurses. This is why bills like California’s are so insidious. When an induced coma with self-starvation and dehydration is seen as proper medical treatment for anyone, the whole rationale of ethical health care is turned on its head.

When medically vulnerable people are given the option of a legal, doctor-assisted premature death, can we be surprised when we discover that none of us is permanently safe from the same fate?

Notes:

1 “Sedated to Death” by Nancy Valko, RN. Voices, Pentecost 2002. Available online at http://www.wf-f.org/02-2-terminalsedation. html.

2 “Total Sedation in End-of-Life Care: Clinical Considerations” by Perry Fine, MD. Journal of Hospice and Palliative Nursing, Vol. 3, Number 3, July-September, 2001.

3 “When Is Sedation Really Euthanasia?” by Kathleen Kingsbury. Time, March 21, 2008. Available online at: http://www.time.com/time/health/article/0,8599,1724911,00.html.

4 Ibid.

5 The amended text of AB 2747 is available online at: http://www.leginfo.ca.gov/pub/07-08/bill/asm/ab_2701-2750/ab_2747_bill_ 20080702_amended_ sen_v94.html.
Nancy Valko, a registered nurse from St. Louis, is president of Missouri Nurses for Life, a spokesperson for the National Association of Pro-Life Nurses and a Voices contributing editor.
**Women for Faith & Family operates solely on your generous donations!

WFF is a registered 501(c)(3) non-profit organization. Donations are tax deductible.

Voices copyright © 1999-Present Women for Faith & Family. All rights reserved.

2002 Voices: Sedated to Death?- When “comfort care” becomes dangerous

Voices Online Edition
Medicine and Morality
Pentecost 2002
Volume XVII, No. 2

Sedated to Death?
When “comfort care” becomes dangerous

by Nancy Valko, RN

As I write this in May 2002, the Hawaiian legislature just defeated a bill to legalize assisted suicide by only 3 votes. Few people were aware of how close Hawaii came to joining Oregon as the second US state to allow doctors to help kill their patients. But before anyone breathes a sigh of relief, it is important to understand that a quieter – but just as lethal – advance in the euthanasia agenda is gaining ground throughout the US.

In the past few years, some ethicists and doctors have proposed “terminal sedation” (TS) as a legal alternative to assisted suicide. TS is defined as the deliberate “termination of awareness” for “relief of intractable pain when specific pain relieving protocols or interventions are ineffective” and/or “relief of intractable emotional or spiritual anguish (existential suffering, psychological distress, emotional exhaustion)”. (Emphasis added) An essential component of TS is also the withdrawal of all treatment, including even food and water, so that death occurs as soon as possible.

The issue is not really “intractable pain”, which those of us who have worked in hospice or with other dying patients know can virtually always be controlled. In Oregon, voters were sold their assisted suicide law by claims that terminally ill people needed lethal overdoses to relieve unbearable pain – yet even the limited data on assisted suicide victims there shows that the main reasons given by the victims were fear of future suffering, losing independence and/or being a “burden” on family members rather than current or unbearable pain.

While some euthanasia supporters have called TS “inhumane” compared with a faster death by a lethal overdose, other supporters view TS as a way of getting around the “problem” of the euthanasia movement’s inability ­ so far ­ to convince voters or state legislatures to enact Oregon-style assisted suicide laws.
Increasingly, TS is being incorporated into some hospice and other “end of life” programs, even though, as writer Brian Johnston points out, euthanasia supporters like Doctor David Orentlicher are admitting in prestigious medical journals that “terminal sedation is tantamount to euthanasia, or a kind of slow euthanasia”.

Unfortunately, even some doctors who condemn assisted suicide have embraced TS as an ethical “choice”. Doctor Ira Byock, a public opponent of assisted suicide, recently joined with Doctor Timothy Quill, an even more public supporter of assisted suicide, in writing an article supporting TS. As an example of the ethical use of TS, they used the case of a radiology doctor with a lethal brain tumor who wanted to die as soon as possible, not because he was in pain but because he was losing his ability to function independently. The radiologist decided to stop all his medications (as well as eating and drinking) but insisted that his doctor make the process bearable. This demand resulted in the use of TS to alleviate his confusion and agitation, which resulted after nine days without food and water.

Similarly, Dr. Robert Kingsbury, the director of SSM (Sisters of Saint Mary) Catholic hospice in Saint Louis, wrote an article supporting the option of TS as comforting and “critical for patients who are profoundly fearful” of terrible suffering at the end of life. Although the traditional and trusted hospice philosophy has been to care for the dying without either prolonging or hastening death, Doctor Kingsbury rejects the notion that TS and withdrawal of food and water causes or hastens death.

Tellingly, The Pontifical Council’s 1994 Charter for Health Care Workers makes an important point when it warns that:
Sometimes the systematic use of narcotics which reduce the consciousness of the patient is a cloak for the frequently unconscious wish of the health care worker to discontinue relating to the dying person. In this case it is not so much the alleviation of the patient’s suffering that is sought as the convenience of those in attendance. The dying person is deprived of the possibility of ‘living his own life’, by reducing him to a state of unconsciousness unworthy of a human being. This is why the administration of narcotics for the sole purpose of depriving the dying person of a conscious end is ‘a truly deplorable practice’.

Non-voluntary Terminal Sedation
Although TS is usually presented as an ethical “choice” rationally made by people who are dying, TS is not uncommon even for people who are incompetent to make their own decisions or who are not close to death.

Dr. Perry Fine provided the rationale for this use of TS by citing “living wills” and other advance directives, as well as decisions made by families or others. Virtually every “living will” or other advance directive specifically requests medication if needed for pain even if there is a risk of hastening death. While no one would disagree with this in principle, the reality is that such language can provide a loophole for doctors or families who see death as something to get over with as soon as possible. Families often agree to “comfort care only” for relatives with brain injuries or dementia without realizing that this can also involve TS.

For example, a few years ago I received a phone call from a niece who was worried about her elderly aunt who had suffered a severe stroke several days before. The aunt had signed a protective document designed by a pro-life group as an alternative to the dangerous “living will”. The document specifically said that, unless death was inevitable and imminent, ordinary treatments such as food, water and basic medical care were to be provided. The document also named the aunt’s sister as the person to make medical decisions if the aunt became incapacitated.

The problem was that although the doctor had declared the aunt’s stroke a “terminal event” (a questionable prognosis at best), she was still alive and breathing, although unconscious. Understandably, the niece began to now question whether her aunt was indeed terminal and whether she should be receiving food, water and basic medical care as her protective document directed.

One of the first questions I asked was whether the aunt was on morphine. (Although strokes rarely cause pain beyond a sometimes initial headache, many doctors and nurses consider unconsciousness a sign that the patient will be severely disabled even if he or she lives, and thus deem such a patient “hopeless”.) The niece said that the doctor had ordered the morphine as part of the “comfort care” to prevent any discomfort as the aunt died. I suggested that the niece talk to the doctor and her aunt’s sister about stopping or reducing the morphine to see if this was responsible for the aunt’s apparent coma. Sure enough, when the morphine was stopped, the aunt began to respond and, according to the niece, even seemed to recognize relatives.

However, the aunt’s sister insisted that a priest told her such apparent reactions were “just reflexes” and told the doctor to resume the morphine. The other relatives briefly considered talking to a lawyer about enforcing the aunt’s protective document but were reluctant to cause further division in the family. Not surprisingly, the aunt died after two weeks without food and water.

Such scenarios are unfortunately becoming more and more frequent. Terminal sedation is not a rarely used last resort, as its supporters maintain. Even the few studies on TS report the prevalence of terminal sedation to range from 3% to 52% in the terminally ill. When the unknown actual incidence of terminating awareness-or insuring unawareness-in patients with stroke, dementia or other serious illnesses is factored in, the use of TS as a form of “comfort care” may well be approaching epidemic proportions, even outside the hospice area.

As a former hospice nurse and now as an ICU nurse caring for some patients who turn out to be dying, I support the appropriate use of pain and sedating medications as ethical comfort care. However, even in circumstances where such medications are necessary, I have never seen a case where a patient “needed” to be made permanently unconscious.

In addition, the newer health care system problems of cost-containment and stressed, overburdened caregivers can make TS even more attractive – and dangerous – to patients, families and medical professionals alike.

The euthanasia movement is nothing if not creative and persistent. Many people now mistakenly believe that tolerating just a little bit of deliberate death – with safeguards, of course – will give them control at the end of their own lives. But as the “culture of death” keeps seducing even well-meaning patients, families and medical professionals into making death decisions based on fear of suffering or diminished quality of life rather than following the traditional principles of not causing or hastening death, ultimately we are all at risk of being “compassionately” rationalized to death.

Sources:
1. Perry Fine, MD, “Total Sedation in End-of-Life Care: Clinical Considerations”, Journal of Hospice and Palliative Nursing, Vol. 3, No. 3, July-September 2001
2. Timothy E. Quill, MD and Ira R. Byock, MD for the ACP-ASIM End-of-Life Care Consensus Panel, “Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids”, Ann Intern Med. 2000; 132:408-414.
3. Charter for Health Care Workers. Pontifical Council for Pastoral Assistance. Vatican translation. 1994. p. 108, Number 124.
4. Tina Maluso-Bolton, MN, RN, “Terminal Agitation”, Journal of Hospice and Palliative Nursing, vol.2. Number 1, January/March, 2000.
5. Johnston, Brian, “Deathly Quiet”, World Net Daily, 4/13/02, available online at:
6. Kingsbury, Robert J., MD, “Palliative Sedation: May We Sleep Before We Die?”, Dignity newsletter, Summer, 2001, available online:
“Terminal Sedation” — Nancy Valko submitted the below quote after the Pentecost Issue had been published.

In a chilling commentary, physician Erich Loewy describes the exact definition of “terminal sedation.”
“Terminal sedation essentially places a patient under anesthesia during the dying process. Supportive care is stopped and patients are given a sufficient amount of drugs to render them unconscious. The expression ‘terminal sedation’ is, I find, peculiar. Terminal sedation is done with the full knowledge that no further active treatment will be done and that patients, as rapidly as possible, will now die as a result of their underlying disease process. The claim is made that such a way of proceeding is aimed at providing maximal relief of pain and suffering — the death of the patient is ‘not intended.’ But that is, to say the least, disingenuous. Patients are intentionally kept asleep, their vital functions are deliberately not artificially supported, and they are allowed to die in comfort. That they should die in comfort is clearly the goal — and I would argue the legitimate goal — of terminal sedation.”

(Reading: Terminal Sedation, Self-starvation, and Orchestrating the End of Life,” Archives of Internal Medicine, 2/12/01, pp. 329-332; available online only with paid subscription) Item courtesy of the American Life League (www.all.org)
Nancy Valko is president of Missouri Nurses for Life and a contributing editor for Voices.
**Women for Faith & Family operates solely on your generous donations!

WFF is a registered 501(c)(3) non-profit organization. Donations are tax deductible.
Voices copyright © 1999-Present Women for Faith & Family. All rights reserved.