"comfort care" becomes dangerous
by Nancy Guilfoy 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
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
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
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
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.
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. Online version available at: http://www.worldrtd.org/quill&Byock.html
3. Charter for Health Care Workers. Pontifical Council for
Pastoral Assistance. Vatican translation. 1994. p. 108, Number
124. Available online at:
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: http://www.worldnetdaily.com/news/article.asp?ARTICLE_ID=27217
6. Kingsbury, Robert J., MD, "Palliative Sedation: May We
Sleep Before We Die?", Dignity newsletter, Summer,
2001, available online: http://www.cbhd.org/newsletter/012/012kingsbury.htm
"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
(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)
Voices copyright © 2002 Women for Faith & Family. All rights reserved.
May not be copied or reproduced without permission, except that permission is granted
to download articles for personal use only. This article is reposted here with permission from Nancy Valko, RN and is from the following website:
http://archive.wf-f.org/02-2-terminalsedation.html at the website of
the Women for Faith and Family organization.
Pentecost 2002 --- Volume XVII No. 2