Michael Schiavo ADMITTED on Larry King Live that he didn't know
what Terri wanted. His lie about Terri's wishes is the
basis of the court's approval of euthanizing Terri.
See Larry King Transcript:
CNN LARRY KING LIVE March 18, 2005
Larry King: Do you understand how they
feel?
M. SCHIAVO: Yes, I do. But this is not
about them, it's about Terri. And I've also said that in court.
WE DIDN'T KNOW WHAT TERRI WANTED, BUT
THIS IS WHAT WE WANT..."
---
Sent: 3/22/2005
Subject: HPA's action suggestions to help Terri
+ Barbara Olevitch, PhD on dying of Starvation and Dehydration + Ira
Byock, MD on Patient Refusal of Nutrition and Hydration (PRNH)]
LifeTree of Raleigh, NC, sent this email with action items from
Hospice Patients Alliance, to help save the life of Terri Schiavo.
If you have a moment, please simply send emails to the good talk show
hosts listed in the body of the letter, along with the suggested email
information. Then send this email along to friends.
Many thanks; keep praying.
--Ione
-------- Original Message --------
| Subject: |
Ron's latest action suggestions to help Terri + Barbara
Olevitch, PhD on dying of Starvation and Dehydration + Ira
Byock, MD on Patient Refusal of Nutrition and Hydration (PRNH) |
| Date: |
Tue, 22 Mar 2005 |
| From: |
LifeTree, Inc. lifetreemail@yahoo.com |
|
|
Dear all,
Time is running out. These are Ron's suggestions late
last night (Monday, March 21, 2005) for ways to help Terri in
addition to your continued prayers. I think it is important to
emphasize to Florida legislators that euthanasia is against the
Florida law and that Michael said on television this week
that he didn't know what Terri would have wanted if she were in
this condition.
The article by Barbara Olevitch below addresses the myth that
starvation and dehydration is a "comfortable death." It
is important to understand that this lie is used by the
right-to-die people to promote patient refusal of nutrition and
hydration (PRNH) as an alternative to assisted suicide by lethal
overdose. On our timeline (long version) at www.lifetree.org/timeline/html
you will see referenced in April 1995, an article by Ira R.
Byock, MD entitled "Patient Refusal of Nutrition and
Hydration: Walking the Ever-Finer Line." The
narration of the death of Duke physician Dr. Eddy's mother in
this article was disseminated widely by the pro-euthanasia people
and represented a large step forward in their goal toward
legalized euthanasia.
From our timeline:
"In
my own practice, while I steadfastly refuse to write a prescription
with lethal intent or otherwise help the patient commit suicide, I can
share with the patient information that he or she already has the
ability to exert control over the timing death. Virtually any patient
with far-advanced illness can be assured of dying -- comfortably,
without any additional physical distress -- within one or two weeks
simply by refusing to eat or drink."
We pray for a miracle, if it be God's Will.
Betty
====================================
This is a Hospice Patients Alliance Newsletter March 21, 2005, 5th
edition, sent out periodically reporting about news affecting hospice
and end-of-life care.
Hospice Patients Alliance has the greatest respect for the dedicated
professionals serving in hospitals, nursing homes, hospices and
doctors' offices who respect patients' rights to self determination,
practice ethically and do NOT impose death on their patients.
###
ARTICLES, DATES AND ANNOUNCEMENTS
FAX THE GOVERNOR & PRES
Contact the Talk Radio Show Hosts about Michael's Lies
(get them to spread the word of Michael's lies!)
Call
FL
Senators
Schiavo's life worth extraordinary effort - The Slow, Horrible Death
of Terri Schiavo
###
sent in from friends of Terri,
to fax to Governor Jeb Bush & Pres Bush
---
YOUR JOB IS TO ENFORCE
FLORIDA
LAW
765.309 Mercy killing or euthanasia not authorized;
(1) Nothing in this chapter shall be construed to condone,
authorize, or approve mercy killing or euthanasia, or to permit any
affirmative or deliberate act or omission to end life other than to
permit the natural process of dying.
A JUDGE CANNOT NULLIFY LAW
Please fax to Jeb Bush.
Governor Jeb Bush
850-488-4441
Fax: 850-487-0801
Federal Law
Title 28 35.130(e)(2) Nothing in the Act or this part authorizes the
representative or guardian of an individual with a disability to
decline food, water, medical treatment, or medical services for that
individual.
Please fax to Pres Bush:
President Bush
The White House
1600 Pennsylvania Avenue NW
Washington,
DC
20500
Comments: 202-456-1111
Switchboard: 202-456-1414
Fax: 202-456-2461
Note from Ron Panzer: We
have to get the truth out about Michael's lies about Terri. Please
email blast the following talk show hosts till they "get
it." They get millions of emails, but if we all email them
MANY times over and over again for today, maybe the truth will come
out about Michael contradicting himself. Email the following
short message to Greta Van Susteren, Michael Savage, Laura Ingraham
and Rush Limbaugh.
Message to be sent with Subject line:
"MICHAEL SCHIAVO ADMITS HE DIDN'T KNOW WHAT TERRI WANTED (false
basis of court ruling to kill her)"
Sean Hannity
Greta Van Susteren
and her blog:
Michael Savage at:
Laura Ingraham at:
(web email available)
Rush Limbaugh at:
and Fax: 212-563-9166
###
PLEASE call Florida Senators, begging them to give Terri a chance.
- Ron P]
HERE ARE THE NINE KEY
FLORIDA
SENATORS WE NEED TO REACH:
Larcenia J. Bullard
850-487-5127 (
Tallahassee
)
305-668-7344
(District Office)
305-668-7346 (Fax)
Walter Campbell Jr.
850-487-5094 (
Tallahassee
)
954-346-2813
(District Office)
Mandy
Dawson
850-487-5112 (Tallhassee)
954-467-4317
(District Office)
954-467-4331 (Fax)
JD Alexander
850-487-5044 (Tallhassee)
863-679-4411
(District Office 1)
863-679-4413 (Fax 1)
863-386-6016
(District Office 2)
863-298-7677
(District Office 3)
863-298-7680 (Fax 3)
Nancy Argenziano
850-487-5017 (
Tallahassee
)
352-860-5175
(District Office 1)
352-402-6664
(District Office 2)
Lisa Carlton
850-487-5081 (
Tallahassee
)
941-486-2032
(District Office)
941-486-2050 (Fax)
Paula Dockery
850-487-5040 (
Tallahassee
)
863-413-2900
(District Office)
863-413-2902 (Fax)
Evelyn J. Lynn
850-487-5033 (
Tallahassee
)
386-676-4000
(District Office)
850-487-5542 (Fax)
Burt L. Saunders
850-487-5124 (
Tallahassee
)
239-417-6220
(District Office 1)
239-417-6223 (Fax 1)
239-338-2777
(District Office 2)
239-338-2779 (Fax 2)
###
###
|
http://www.catholicexchange.com/vm/PFarticle.asp?vm_id=2&art_id=27477&sec_id=52552
|
|
Close
|
|
by Barbara
A. Olevitch, Ph.D
Other
Articles by Barbara A. Olevitch, Ph.D
|
|
"Dying
Comfortably" of Starvation and Dehydration: What Is the
Evidence?
|
|
|
|
02/21/05
|
|
In
1993, Bernat, Gert, and Mogielnicki published an article in
the Archives of Internal Medicine called "Patient
Refusal of Hydration and Nutrition: An Alternative to
Physician-Assisted Suicide or Voluntary Active
Euthanasia."
|
|
In
This Article...
Selling
Starvation
Factors
That Affect Perception of Pain
Twisted
Results from a Skewed Sample
|
|
.gif)
|
|
.gif)
|
|
Selling
Starvation
In this article, they offer
arguments to alleviate the guilt feelings of physicians who
help patients with deliberate starvation and dehydration. They
emphasize the obligation to comply with the patient's refusal
of food and fluids.
However, they do not address the issue of whether the
patient's refusal is properly informed or not. A patient's
choice is greatly influenced by the information he receives
from his physician and other medical personnel. If the
information he receives is flawed or biased in any way, and if
he bases his decision of self-starvation upon this
information, then whoever gave him this information would
indeed be responsible for his death.
Patients are being told that starvation is comfortable. Bernat
and his coauthors wrote, "The most pressing need is to
dispel the myths about suffering caused by dehydration and to
publicize as widely as possible to both physicians and their
terminally ill patients the availability of PRHN [Patient
Refusal of Hydration and Nutrition] as a means of shortening
the dying process."
Bernat and his coauthors call the idea that dehydration causes
suffering a "myth," and indicate that research has
disproven this "myth."
The typical study cited by proponents of Patient Refusal of
Hydration and Nutrition is either a case report about how a
patient starved and didn’t complain or a survey of hospice
nurses' opinions about whether starving patients were
comfortable. In this article I would like to introduce the
reader to some quite ordinary standards of medical research
and to evaluate this kind of research according to these
standards.
Factors
That Affect Perception of Pain
First, we must discuss the
formidable philosophic difficulties of doing any kind of
conclusive medical research on something so subjective as the
sensations of a dying patient.
The psychological experiences of a human being are determined
not just by his physical condition and his circumstances, but
also by the ideological slant that he brings to these
circumstances. The pain that a person reports, and indeed,
even the pain that a person experiences, has a lot to do with
his thinking process.
A person who is doing something that he deeply believes in and
greatly desires to do does not complain about the incidental
discomforts that occur in the process. In fact, he may not
even perceive these potential discomforts. The classic example
of this are reports that injured soldiers often do not feel
pain at the moment of their injury, but only later.
Activists for a cause who undergo a hunger strike speak out
about the rightness of their cause. They don't complain about
their hunger pangs and their feelings of weakness. Onlookers
take their ability to continue fasting as a measure of their
devotion to the cause.
The smiles of Ramon Sampedro, a euthanasia supporter who
filmed his own suicide in 1998, are an example of how the
ideological slant of a patient determines whether he complains
or not. According to a recent account by Gregory Jordan in the
New York Times, he "slurped poison through a
straw, licked his lips and smiled. Heaving and lunging for the
next 40 minutes, he still summoned mischievous smiles
throughout his death throes."
Jordan
wrote that the actor who played Sampedro in a recent movie
thought that Sampedro "kept smiling for the camera as he
died because he was amused at the idea of recording himself
for the needy arbitrators on both sides of a national debate
about death."
This well-known fact of human psychology — that the reports
of human beings about their own sensations are very much
affected by their thinking process — is a good example of
the kind of factor that has to be taken into account when
interpreting the applicability of a medical study. To be
widely applicable, medical research has to be conducted
according to certain rules. If we do a study on a certain
unique group of people, those who chose hospice or those who
refuse nutrition and hydration, the conclusions may not
pertain to any other group. If we want our conclusions to be
relevant to other groups, then subjects cannot be picked
according to some special behavior or belief. They have to be
randomly selected.
Twisted
Results from a Skewed Sample
Random selection is only the
beginning. In a typical medical experiment, the subjects are
blind to whether they are in the treatment group or the
control group. If we want to determine if subjects who are
deprived of nutrition and hydration die any more comfortably
than those who are nourished and hydrated, the subjects would
have to be unaware of whether they are receiving food and
fluids or not.
Finally, those standing by and judging the quality of their
deaths would have to be impartial judges, not proponents of
Patient Refusal of Hydration and Nutrition. Moreover, they
also would have to be unaware of whether the person whose
comfort they were judging was receiving food and fluids or
not.
The research studies that Bernat and his coauthors were
seeking to publicize did not meet the criterion of random
selection. On the contrary, neither the patients described in
these case reports nor the doctors and nurses whose opinions
about the comfort of the patient were solicited were randomly
selected. The typical subject had refused nutrition and
hydration. The typical doctor or nurse rating the patients'
comfort worked in a setting where patients were being deprived
of nutrition and hydration. There would be a tendency for
medical personnel who felt that starvation caused patient
discomfort not to practice in these settings.
Typically, the patients and the medical staff were aware that
the patients were not being nourished and hydrated. Thus, if
the medical personnel rating the patients' comfort had any
bias towards believing that starvation is comfortable, this
bias could have indeed influenced their ratings.
Later studies of this nature, such as the one done by Linda
Ganzini and her coinvestigators, also share this flaw.
In the absence of these ordinary safeguards — random
selection and keeping subjects and raters blind to the
treatment received by the patient — safeguards which are
standard in medical research, case reports and opinion surveys
indicating that some patients appeared to starve comfortably
do not imply that others would as well.
|
|
Also
there is the question of interpreting the lack of patient
complaints other than thirst. If a patient agreed to be starved
to death, he knows that the nurse can give him ice chips to
alleviate thirst, so he asks for them when he feels
uncomfortably parched. But when he feels a feeling of complete
exhaustion and weakness, why would he complain? What could the
nurse offer him for this? Given that he has asked to die, he may
welcome the weakness as a sign that his request to die is being
fulfilled.
Bernat and his coauthors do not claim that starvation and
dehydration are painless or euphoric, but, rather, see
themselves as dispelling the "myth" that the suffering
caused by thirst and hunger is "intractable" or
"unbearable."
To say that starvation, with the option of attentive nurses
giving ice chips and sedatives, isn't unbearable isn't saying
much. Most painful medical conditions can also be made more
bearable by sedatives and good palliative nursing care.
Ira Byock, another proponent of helping patients to die by
withholding food and fluids, admits that the clinical reports of
patients dying peacefully or in a euphoric state are just
anecdotal and have not been matched by research studies. He
writes, "While currently available studies do not refute
this clinical impression, neither are they sufficient to
substantiate it. Thus, while the heightened probability of a
gentle passing by PRNH [Patient Refusal of Nutrition and
Hydration] is intriguing, at present, it remains
speculative."
Given the glaring flaws in the research about the sensations of
starving patients and the ethical impossibility of designing
research studies on this question that are any better, it is
clearly an expression of bias to publicize to patients the
"comfort" of self-starvation.
© Copyright 2005 Catholic Exchange
Dr.
Olevitch is a clinical
psychologist and author of Protecting
Psychiatric Patients and Others from the Assisted-Suicide
Movement: Insights and Strategies
(Praeger, 2002).
_________________________________________________________________________
|
|
|
|
|
|
Patient Refusal of Nutrition and Hydration:
Walking the Ever-Finer Line
American Journal Hospice & Palliative Care, pp. 8-13,
March/April 1995.
Ira R. Byock, M.D.
In the midst of an increasingly heated debate over
physician-assisted suicide (PAS) another option available to
patients who are determined to end their lives is receiving serious
attention -- the conscious refusal of nutrition and hydration.
Patient refusal of nutrition and hydration (PRNH) is hardly new,
indeed, virtually all hospice clinicians remember people who came to
a point in their illness when they could be described as having
"lost their will to live" and who recognized that
continued eating and drinking was having an undesired,
life-prolonging effect. In the hospice context, death that follows
the decision to refrain from food or drink is not usually considered
a suicide, however, by choosing to do so these patients were
conscious that their death would likely be hastened.
The general impression among hospice clinicians that starvation and
dehydration do not contribute to suffering among the dying and might
actually contribute to a comfortable passage from life. In contrast
the general impression among the public and non-hospice medical
professionals is that starvation and dehydration are terrible ways
to die. Scientific support for either viewpoint has been scanty, yet
modern medical practice has reflected an aversion to allowing a
person to "starve to death."
Indeed, during the era in which most hospice providers have trained
and practiced, a patient unable to eat has been routinely treated
with a feeding tube; the option of declining such intervention never
having been offered or fully considered. The symbolic importance of
offering food and fluids is well-recognized. While it has been
utilized by people throughout human history, in public discussion
and debates regarding physician-assisted suicide, hospice providers
have wisely avoided suggesting PRNH as an alternative. There has
been concern that in the political arena such a suggestion might
appear as a self-serving way to deny hospice providers'
"ultimate responsibility" to the suffering patient.
But the situation may now be changing. Several recent articles are
serving to dispel fears of suffering and are making it more
acceptable to speak more openly about this inherent ability of
patients to influence the timing of their demise. Late in 1993 an
article entitled, Patient Refusal of Hydration an Nutrition: An
Alternative to Physician-Assisted Suicide or Voluntary Active
Euthanasia, by Bernat, et. al. in the Archives of Internal Medicine
reviewed the salient clinical literature and discussed the ethical
implications of this option.[Bernat] The authors include PRNH within
the ethical category of "voluntary passive euthanasia"
since it involves not only the refusal of oral food and fluid but
the associated refusal of non-oral (enteral or parenteral)
alimentation and hydration. They assert that the critical moral and
legal distinction to be made regarding a life-ending decision is not
whether it involves an act of commission or omission on the part of
the physician, but whether or not it constitutes the refusal of a
medical therapy by a competent patient. Patient refusal of nutrition
and hydration meets this criteria and, thus, can be considered among
the commonly accepted practices of patient-initiated refusal (or
withdrawal) of mechanical ventilation, renal dialysis, or antibiotic
use.
A more extensive review of the scientific literature relevant to
starvation and dehydration appears in an article by Sullivan
entitled, Accepting Death without Artificial Nutrition or
Hydration.[Sullivan] Published studies of healthy volunteers report
that total fasting causes hunger for less than 24 hours. Ketonemia
occurs and is associated with relief of hunger and an accompanying
mild euphoria. When ketonemia is prevented by small feedings hunger
persists, explaining the obsession with food commonly observed
during semi-starvation occurring in times of famine or war. Animal
studies also suggest that ketonemia may have a mild systemic
analgesic effect. Experimentally induced dehydration in normal
volunteers may report thirst, yet this sensation is consistently
relieved by ad lib sips of fluid in cumulative volumes insufficient
to restore physiologic fluid balance. One study of healthy subjects
suggests there is a decrease in the severity of experienced thirst
associated with older age.
Recently, two important clinical studies have been published which
investigate the effects of fasting and dehydration in the patient
population relevant to hospice. Burge surveyed patients at two
inpatient palliative care units in Canada. Visual analog scales
(100-mm) were used to assess seven symptoms: thirst, dry mouth, bad
taste, nausea, pleasure in drinking, fatigue and pain. [Burge]
Reported symptoms were studied in relation to potential confounding
variables. Thirst was considered to be the principal outcome of
interest. The mean symptom rating for thirst was 53.8 mm. In
multiple linear regressions no statistically significant association
between thirst and fluid intake, serum sodium, urea or osmolality
was found. The presence of oral disease yielded the most significant
association between thirst and examined variables.
In the October 26 issue of JAMA, McCann, et. al. report a
prospective study of patients in a ten-bed "comfort care
unit" located within a long-term care facility. [McCann] The
physical care described closely resembles benchmark hospice care.
"Food was offered and if necessary fed to patients but was
never forced. All patients received meticulous mouth care that
included combinations of cleaning, various swabs, ice chips, hard
candy, and lubricants. Narcotics were used for most of the patients
to treat symptoms of pain and shortness of breath when present. The
dose of narcotics was titrated to provide pain relief while avoiding
sedation. When the window of providing pain relief and causing
sedation was small, the patients' wishes were weighed regarding the
discomfort of pain vs. the discomfort of sedation in determining
subsequent doses and intervals of narcotic administration."
Of 32 patients assessed by this group during a 12 month period, 63%
denied hunger entirely, while 34% reported hunger during only the
initial part (first quarter) of their course in the unit. Thirst or
dry mouth was reported by 66% of patients; 28% transiently and 38%
throughout the terminal phase of their illness. Thirty-four percent
denied either symptom. The authors found that in all patients
reporting either hunger or thirst, these symptoms were consistently
and completely relieved by oral care or the ingestion of small
amounts of food and fluid. While patients could eat or drink ad lib,
the amount of food or fluid ingested -- and documented to relieve
associated symptoms -- was consistently less than that required to
correct dehydration or to meet obligate fluid and energy
requirements.
Perhaps the most persuasive of recent articles is that entitled, A
Conversation with My Mother.[Eddy] It is a narrative written by Dr.
David Eddy regarding the progressive illness and dying of his
mother. Initially published in the Journal of the American Medical
Association, it was subsequently reprinted in the New York Times,
eliciting substantial discussion and notably favorable public
response. Mrs. Eddy was suffering from progressive debilitation,
chronic depression, anemia, recent surgery and recurrent rectal
prolapse. She expressed a desire to die and, in the course of
relentless decline, asked her son for help. Dr. Eddy sought to
provide his mother with the means to end her life peacefully.
However, prior to obtaining a lethal prescription, she developed
pneumonia and was hospitalized. Antibiotics were begun (we are not
told why), but quickly withdrawn at the patient's request. When she
began to improve despite the lack of life-prolonging intervention,
Mrs. Eddy asked her son about the option of refusing food and
fluids. (It was her idea.) He assured her that without nutrition
and, especially without adequate fluid, the end would come quickly.
She was elated and, following the celebration of her 85th birthday
and with the support of her primary physician, she stopped eating
and drinking. (Her last morsel was chocolate.) She died, peacefully,
six days later. The description of her last few days is compelling.
"Over the next four days, my mother greeted her visitors with
the first smiles she had shown for months. She energetically
reminisced about the great times she had had and about things she
was proud of... She also found a calming self-acceptance in
describing things of which she was not proud. She slept between
visits but woke up brightly whenever we touched her to share more
memories and say a few more things she wanted us to know. On the
fifth day it was more difficult to wake her. When we would take her
hand she would open her eyes and smile, but she was too drowsy and
weak to talk very much. On the sixth day, we could not wake her. Her
face was relaxed in her natural smile, she was breathing unevenly,
but peacefully. We held her hands for another two hours, until she
died."
Sullivan's aforementioned review of the literature also begins with
a clinical narrative case presentation. The case is that of a 78
year old woman with recurrent, complete small bowel obstruction,
following treatment of endometrial carcinoma. Although no evidence
of recurrent or metastatic disease could be found, the patient
steadfastly refused further surgery. While accepting a nasogastric
tube for decompression, she declined any nutritional support and,
after an additional 14 days, also refused intravenous fluids. The
patient judged her symptoms, which included nausea and ascites, to
be intolerable. Sullivan states, "She repeatedly requested that
her life be ended by injection of a lethal dose of morphine. This
request was respectfully declined by her physician, who did offer to
relieve any pain or discomfort." Eventually, morphine was
administered at the request of the patient "to relieve boredom
and help with sleep." The patient lived a surprisingly long
time; a total of 42 days of complete fasting and 29 days with
minimal fluids. At no time did she report pain. Her sensorium
remained clear and affect normal until the last day of life.
"Her friends visiting during this period uniformly confirmed
that she was a woman who knew her own mind and had the courage of
her convictions."
Comment
Critical examination of this latter case gives rise to a number
of questions. Seasoned hospice clinicians will wonder whether
sophisticated palliative care would have uncovered other options
available to this patient. However, two points of relevance to the
current discussion stand out: a) neither starvation nor dehydration
seemed to contribute to this patient's physical distress, and b) the
patient lived for an unexpectedly long time. In addressing the
prolonged course of his patient, Sullivan emphasizes that she was
not known to have an underlying terminal illness or any ongoing
catabolic process. Additionally, she began her fast with apparently
normal nutritional stores (she is described as having been
"always mildly obese") and her refusal of fluid followed
two weeks of intravenous hydration.
This patient's condition contrasts with the large majority of
hospice patients who are likely to undergo a shift from adipose to
protein metabolism much earlier in the course of fasting. This shift
coincides with a decrease in metabolic free water and renal function
and a rapid progression to uremia, electrolyte imbalance, somnolence
and demise. A more prolonged course might be expected for a person
in the circumstance of a massive stroke or post-hypoxic syndrome
whose advanced directive prohibits non-oral nutritional support or
hydration.
In reviewing the literature on thirst associated with negative fluid
balance derived from studies of healthy volunteers as well as
studies involving those with far advanced illness, I have gained an
impression that the word "thirst" may well refer to two
distinct sensations. In the patients whom hospices serve,
"thirst" most often refers to a sensation of dryness in
the mouth and throat rather than an experienced need to ingest a
volume of fluid which it normally conveys. This explains why the
"thirst" of persons with far-advanced illness is
consistently relieved by amounts of fluid insufficient to expand
volume or osmotic receptors.
Risks and Potential Benefits of Starvation and Dehydration in
Far-advanced Illness
While the currently available research is not exhaustive, hospice
clinicians now possess respectable scientific data to supplement
anecdotal experience in forming their own opinions, and informing
patients about nutrition and hydration. This information has
relevance beyond responding to a hospice patient who is expressing
suicidal intent. When diminished gag reflex, altered sensorium or
obstruction makes oral feeding impractical or risky, thoughtful
clinicians and their patients often struggle with decisions about
whether to place nasogastric or PEG feeding tubes.
Medical decision-making rest upon the pillars of informed consent
and the concept of proportionality. The publications cited
collectively expand the information base on which clinicians can
make recommendations and patients (and families) can make informed
choices. Proportionality is commonly explained as a weighing of the
risks versus the potential benefits of a proposed intervention. In
the context of the present discussion, the principle of
proportionality can be understood more fully as requiring the
weighing of the risks and potential benefits of each available
intervention against the risks and potential benefits of
non-intervention. In the process of informing and obtaining consent
from patients -- and, perhaps especially, in discussions with the
legal surrogate(s) of an incapacitated patient -- it must be
remembered that the decision to prevent malnutrition or dehydration
is a de facto decision to have the person die of something else.
Stated another way, the euvolemic, nutritionally supported patient
may live longer, but is probably more likely to die from acute
systemic infection, from acute respiratory failure, from acute
cerebral or myocardial ischemia or from abrupt blood loss.
These clinical reviews, case reports and new research data lend
credence to the clinical impression that, among the terminally ill,
the risks of uncorrected malnutrition and dehydration are few. (In
this circumstance, death is not properly regarded as a risk, since
it is a principal expected outcome.) Considered together, they allow
us to state that, at least within the context of adequate palliative
care, the refusal of food and fluids does not contribute to
suffering among the terminally ill. The literature is consistent on
two points: a) rarely does fasting cause any discomfort beyond
occasional and transient hunger, and b) symptoms referable to
dehydration are few -- mostly dry oral and pharyngeal mucous
membranes -- and are readily relieved by simple measures.
Yet, while it may now be appropriate to present the risks of
starvation and dehydration within a hospice setting as being
minimal, this is logically distinct from being able to assert that
there is tangible benefit from either condition. From a patient's
perspective, I suspect that the critical, intangible benefit of PRNH
will be an improved sense of confidence that death will occur
peacefully. As noted, this notion is supported (and probably
fostered) by the commonly expressed observations of hospice
clinicians that such deaths are generally preceded by a gentle,
deepening somnolence with the person often described as having
"slipped away". What is known of the physiology of
far-advanced, progressive disease and of combined nutritional and
fluid deprivation suggests a synergism that, indeed, might explain a
peaceful pattern of demise. This may occur through gradual organ
dysfunction (especially renal and hepatic) with progressive
metabolic derangements or via primary circulatory failure. In either
case, a clouding of sensorium can be expected with an arrhythmia
likely being the terminal event. While currently available studies
do not refute this clinical impression, neither are they sufficient
to substantiate it. Thus, while the heightened probability of a
gentle passing by PRNH is intriguing, at present, it remains
speculative.
Another potential benefit merits discussion. At least for some
persons, starvation does correlate with reported euphoria. While
there is a tendency for medical professionals to dismiss euphoria as
an aberration of consciousness -- a non-distressing
"symptom" -- it clearly has positive impact on a person's
subjective quality of life. Quality of life, it should be
remembered, is a wholly subjective construct. It has emerged as one
of the "gold standards" of outcome measures for hospice
care. The question of whether euphoria is somehow "valid"
or "reality-based" may prove irrelevant to its
implications for hospice practice. Further prospective physiologic
studies with clinical correlates of affect and meaningful quality of
life assessments should be actively encouraged.
Ethical and clinically effective response to requests for
assistance in suicide
The practice of a physician or nurse responding to a patient's
request for assistance in suicide by discussing the option of
refusing to eat or drink appears to stretch the "fine
line" of ethical practice to the point of disappearing. It will
seem chilling to some, and self-absorbed hair-splitting to others.
Perhaps all patients with essentially normal mental status who are
aware that they are dying engage in some degree of suicidal
ideation. The request from a patient to their doctor or nurse for
assistance with suicide has many meanings, at a minimum it must be
heard as a call for help. It may represent an urgent plea for
symptoms to be better controlled or for the patient to be listened
to as a person -- for their suffering to be heard. In practice
serious requests for assistance with suicide commonly prove to be an
opening to deeply important clinical work. Thus, while suicidal
ideation is common, suicide among hospice patients is rare.
In a perfect world resources and expertise would be unlimited and
this type of therapeutic response -- combining effective symptom
control with expert counseling and an authentic healing presence --
would suffice. However, in the imperfect world in which we practice,
not every patient achieves an acceptable quality of life, nor is
every patient willing "to work through" his or her
suffering. Some people insist that they have "had enough"
and continue to plead for assistance with suicide. The information
reviewed has pragmatic application to a response that remains
ethically consistent, effective and genuinely caring.
Ethically, while a clinician may decline to actively assist a
person's suicide, we must never abandon our patient. Even a patient
who is intent on suicide continues to deserve our care. At a minimum
the patient requires continued attention to control of symptoms.
Further, the patient remains entitled to accurate medical
information about the options available to them. Undeniably, one
such option is the refusal of further food and drink. But it is,
indeed, a fine line. Unlike physician-assisted suicide, refusing to
eat or drink is a purely personal act. While it may require
information, the decision obviates the need for physicians, nurses
or other agents of society to participate. After adequate
discussion, and in the context of continued caring, at some point
the patient's choice becomes "none of our business".
Seeking a clear philosophical distinction, between the scenario of
one patient swallowing a prescribed lethal potion and the scenario
another refusing to swallow anything at all, may be an exercise in
splitting ever-finer ethical hairs. Yet, the interpersonal meaning
of these two acts could not be more different. In every circumstance
-- legal or not -- acceding to a patient's request for a lethal
prescription entails a complicity on the part of the clinician. In
its meaning the act is a collusion in the patient's belief that
their situation is hopeless and that their existence is beyond
conceivable value.
In my own practice, while I steadfastly refuse to write a
prescription with lethal intent or otherwise help the patient commit
suicide, I can share with the patient information that he or she
already has the ability to exert control over the timing death.
Virtually any patient with far-advanced illness can be assured of
dying -- comfortably, without any additional physical distress --
within one or two weeks simply by refusing to eat or drink. This is
less time than would be legally imposed by waiting periods of
assisted suicide initiatives. The discussion and subsequent decision
are wholly ethical and legal, requiring no mandated psychiatric
evaluations, attorneys, court decisions or legislation. On the level
of meaning there is wisdom in not discussing the option of PRNH too
soon. The impetus for the discussion should arise (as it did for
Mrs. Eddy) from the person dying.
Clinically, for a number of people at the very end of life, the
decision to refuse food and fluid may not arise from depression or
emotional denial as much as from a felt sense of "being
done". Most such persons I have encountered one way or another
expressed a sense that eating or drinking were no longer relevant to
their situation. They were far along in a process of withdrawal,
having turned their attention inward or "beyond". Even
here the option of PRNH has important advantages over complying with
a patient's request to be killed, for it allows the clinician's
attention to remain focused on relief of suffering -- physical,
psychosocial and spiritual. It requires -- of frees -- the clinician
to remain vigilant for treatable depression and to remain, in
humility, open to the possibility of unexpected opportunities for
the person to again discover value in the life that is waning.
The powerful symbolism of nurturing associated with feeding and the
notion of suffering associated with starvation and dehydration are
deeply rooted. This is perhaps especially true for those of our
patients who lived through world wars and the Great Depression of
this century. While the topic of PRNH may no longer be taboo, it
must be approached with extraordinary sensitivity. However,
discussion of what we know can help reduce anxieties of what we
fear. The more we know and the more confidently we know it, the
better able we are to make sound decisions. My experience is that
the information presented has been well received and resulted in a
noticeable allaying of fears. This has been the case in private
discussions, as well as in public and professional forums. The
recognition that patients with far-advanced illness have always had
control over the timing of their demise can enable the focus of
discussion and intervention to remain fixed on the goals of comfort
and quality of life.
The debate over physician-assisted suicide will continue. The option
of PRNH deserves fuller attention and discussion. Years ago Cicely
Saunders defined a core principle for hospice, "You matter
because you are you. You matter to the last moment of your life, and
we will do all we can not only to help you die peacefully, but also
to live until you die." In our statements and our actions
hospice clinicians would do well to reflect on those words.
References:
- Bernat, JL, Gert, B, Mogielnicki, RP, Patient Refusal of
Hydration an Nutrition: An Alternative to Physician-Assisted
Suicide or Voluntary Active Euthanasia, Arch Intern Med Vol 153,
Dec 27, 1993 pp2723-2728
- Sullivan, RJ. Accepting Death without Artificial Nutrition or
Hydration J Gen Intern Med, Vol. 8, April, 1993, pp 220-224.
- Burge, F, Dehydration Symptoms of Palliative Care Cancer
Patients. Journal of Pain and Symptom Management, 1993;8(7)
pp454-464.
- McCann, RM, Hall, WJ, Groth-Juncker, A, Comfort Care for
Terminally Ill Patients: The Appropriate Une of Nutrition and
Hydration, JAMA October 26, 1994 272(16) pp1263-1266
- Eddy, D. A Conversation with My Mother, JAMA July 20, 1994
Vol. 272, No. 3 pp179-181
Patient Refusal of Nutrition and Hydration:
Walking the Ever-Finer Line
American Journal Hospice & Pal Care, pp. 8-13, March/April
1995.
Ira R. Byock, M.D.
|