HSC 312 Final Project –Complied Case Analysis Scoring Rubr.docx

HSC 312: Final Project –Complied Case Analysis Scoring
Rubric
The following criteria will be used to grade your Complied Case
Analysis. Keep in mind that the score requirement described
under each score point on the scale defines the minimum
performance that must be demonstrated in order to achieve that
score.
Evaluation
Criteria
A
20 points
B
17 points
C

15 points
D
13 points
F
11 points
1.) Introduces
the case
analysis by
describing
the ethical
dilemma
requiring
resolution
Introduction is:
• Comprehensive
• Includes a
thorough, clear and

concise description
of the case and
ethical dilemma
proposed.
Introduction:
• Includes minor
omissions in
description of
either the case
or ethical
dilemma.
Introduction:
• Lacks detail in
part
• Includes minor
omissions in
both the

description of
the case and the
ethical dilemma.
Introduction:
• Lacks detail
• Includes major
omissions in
either
description of
the case or the
ethical
dilemma.
Description is either
missing or contains
major omissions
throughout.
2.) Identifies
the

primary
stakeholder
(s) and
provides a
description
of the
situation
from the
stakeholder
perspective
Description is:
• Comprehensive
• Includes
identification of
stakeholder
• Provides clear
stakeholder
Description:

• Has minor
omissions or
errors in
identification of
stakeholders or
in describing the
stakeholder
perspective.
Description:
• Lacks detail
• Omits some
significant
content or
contains several
minor errors.
Description:

• Lacks detail.
• Is superficial
and contains
multiple errors.
Description is:
• Missing or
incorrect
• Inconsistent
with selected
stakeholder
identify any
or identifies
irrelevant
stakeholders.
3.) Analyzes the
scenario

from the
perspective
of the
primary
stakeholder
and includes
a description
of at least
two ethical
theories that
relate to the
issue being
identified
Analysis and Description
are:
• Comprehensive
• Include responses
to all

subcomponents of
the question.
• Provides clear
description of two
or more ethical
theories and their
relation to the
issue.
Analysis and
Description:
• Include minor
omissions.
• Includes 1-2
minor errors in
regards to the
scenario of the
stakeholder or
the description

of the ethical
theories.
Analysis and
Description:
• Include a major
omission, OR
• Includes
several errors in
regards to the
scenario of the
stakeholder or
the description
of the ethical
theories.
Analysis and
Description:
• Includes a
major omission,

AND
• Includes
several errors in
regards to the
scenario of the
stakeholder or
the description
of the ethical
theories.
Analysis and
Description are:
• Missing
OR
• Response
contains
significant
errors or
omissions

throughout the
response.
4.) Provides a
reasonable
recommendat
ion based
upon the
analysis
presented
Recommendation is:
• Comprehensive.
• Clear and logical
• Summarizes key
points.
Recommendation
has:
• Minor
omissions or

errors
• Is clear and
logical
• Summarizes
most key points.
Recommendation:
• Omits some
significant
content and
contains several
minor errors
• Is clear or
logical but not
both
• Summarizes
minimal
points.
Recommendation:

• Is superficial
and contains
multiple errors
• Is not clear or
logical
• Summarizes 1-
2 points.
Recommendation is:
• Missing or
incorrect.
5.) Format Format is:
• Clear and
consistent.
• contains accurate
and proper

grammatical
conventions,
spelling,
formatting, and
referencing.
• Follows specific
instructions.
Format is:
• Clear and
mostly
consistent.
• Contains few
errors of
accuracy
• Follows
specific
instructions
with minor

omissions.
Format is:
• Clear but not
concise.
• Contains
multiple errors
of accuracy.
• Follows
specific
instructions
with multiple
omissions.
Format is:
• Not clear or
concise.
• Contains
serious errors.
• Specific

instructions are
barely followed.
Format:
• Is not clear.
• Does not
follow specific
instructions.
Final Project – Compiled Case Studies
Jane Doe
HSC312
May 2013
Professor X

HSC312 - Final Project: Compiled Case Studies May 2013
Jane Doe
Case Analysis: Sally & the DNR
Case Analysis Template for use with each of the four scenarios
in the final project:
1. Copy/paste the title of the question
2. Describe the most relevant ethical dilemma(s) presented (no
more than two).
3. Briefly describe the primary issue or issues that are relevant
in the scenario w/respect to
the dilemma.
4. Identify the most relevant stakeholder(s) (no more than 3)
and briefly describe the
situation from their perspective.
5. Analyze the dilemma, using scholarly discussion, from the
perspective of the primary
stakeholder (typically the patient). Include a discussion of at
least two ethical theories
or bioethics principles studied in the course that relate to the

dilemma and issues you
identified. Include any relevant legal concerns or requirements
outlined in the readings.
6. Present your assessment, resolution or potential solutions for
resolving the issue.
Remember that there are no right answers, per se, so reflective
questions can be as
appropriate as a firm conclusion.
7. Title page + APA formatted reference(s)
The following example provides further insight into what is
required for each element of the
template. Although the response is intentionally somewhat
longer than what is expected, it
should help clarify the specific requirements.
1. Ethical Dilemma
Prompt objective: Identify the ethical dilemma and state the
dilemma as a “should” question.
Note: there may be several relevant dilemmas that could be
addressed; use the prompt question
as a guide to an issue to analyze. The objective is to present a
cogent analysis of a relevant issue.
ISSUE: Should the attending physician sign a DNR without

Sally’s consent?
2. Primary issues related to the identified dilemma
Prompt objective: Identify the relevant issues related to your
dilemma. You should identify at
least two, but limit your selection of issues to a manageable
number within the scope of the
assignment.
Informed consent; Surrogate decision making & substituted
judgment; healthcare decision
making capacity; autonomy and the right to refuse treatment
3. Primary Stakeholders & Stakeholder positions:
Question objective: Identify 2-3 primary stakeholders including
the patient, and briefly describe
their position:
Sally: 62 yr old woman with Stage IV breast cancer that is
unresponsive to standard and
experimental treatment presents with shortness of breath
requiring a Thorentisis, a difficult
procedure given her condition. Sally wants to live and refuses

to discuss the terminal nature of
her condition.
Jane Doe
Sally’s husband: Sally’s husband recognizes that Sally is dying
and wants everything done for
Sally to make her comfortable. He agrees with the attending
physician that CPR would make
Sally less, rather than more comfortable. He is Sally’s surrogate
decision maker.
The attending physician: Believes that further testing and
treatment for Sally is futile. He
questions whether Sally has the capacity to understand her
condition and consent to the DNR.
4. Potential
Solution
Analysis:

Prompt objective: Analyze the ethical dilemma from the
perspective of the primary stakeholder
(typically the patient), using the ethical theories and/or the
bioethics principles that relate to the
dilemma. Keep your analysis focused on at least two or three
moral theories or bioethics
principles, but do not attempt to address them all. There will
generally be more issues and
principles/theories that would apply than you can cover in a
short analysis. Include in your
discussion any known legal issues presented by the readings
that may influence a decision. Apply
the facts to the theories discussed. Keep in mind that there may
be several issues and theories to
discuss, but you are not required to find or address them all.
The essay below is purposefully
more involved than the assignment requires providing a few

examples of an ethical analysis.
Under the ethical and legal doctrine of informed consent
provided by the Patient Self-
Determination Act, an adult patient with healthcare decision-
making capacity has the right to
make an informed, autonomous choice to accept or reject
medical treatment. (Munson, 2012).
The right to self-determination is defined by the bioethics
principle of
Autonomy and refers to the patient’s right to make a voluntary
choice that is meaningful to them
and free from external or personal influences. (Tong, 2007).
Such influences may include fear,
denial, medication side effects, pain and guilt, among others.
Healthcare decision-making
capacity requires that the patient can articulate and understand

the nature of their condition and
the risks, benefits and consequences of accepting or rejecting
treatment. Assessing decision-
making capacity requires an evaluation of the patient’s
decision-making process, rather than an
evaluation of the choice itself. “…[T]he mere fact that a patient
does not accept a health care
professional’s recommendation does not necessarily mean that
the patient is incompetent" (Tong,
2007, p 53).
In order for a patient to evaluate the risks and benefits of an
available option is the understanding
that a physician will provide complete and honest disclosure of
all the associated medical facts
that may be pertinent to the patient (Canterbury vs. Spence,
1979). The need for such veracity in

caring for a patient is also a primary component of a physician’s
ethical responsibility, according
to the American Medical Association (AMA, 2012). Performing
a procedure without consent, or
withholding a viable treatment without disclosure, is a direct
violation of the AMA mandate,
Informed Consent doctrine and a patient’s trust.
A patient’s right to self-determination is foundational in
bioethics. If the patient loses decision-
making capacity, laws and policies are in place to ensure that
the patients’ expressed or implied
wishes are respected. Prior to losing capacity, a patient can
appoint a healthcare proxy agent who
will make decisions for the patient, based upon the patient’s
wishes and instructions. Critical to

the concept of a Health Care agent is the agent’s requirement
that any decisions reflect the
patients’ known and implied wishes, rather than the agent’s own
wishes for the patient. If no
Jane Doe
such agent is named, a surrogate decision maker is appointed by
state statute or facility policy to
make decisions for the patient, using their knowledge of the
patient and the patient’s wishes,
values and spiritual beliefs.
Sally appears to be in denial about her condition and terribly
afraid of death, as evidenced by her
general state of “panic” and her refusal to talk to the Resident

about her condition. Most
importantly, Sally has stated that she wants to live, which may
reflect any number of thoughts
and emotions from a sense of grief at her circumstances to
denial of her terminal condition.
Because the physicians seem more focused on discussing their
inability to help Sally, rather than
being ‘competent’ in her mind to perform the thorientsis, Sally
may not see a value in discussing
her condition with them. Far from an irrational thought process,
Sally’s refusal to talk may
actually be a heartbreaking testament to her ability to assess a
situation and reach a rational
conclusion based on the facts. Further proof may be Sally’s
insistence that she “…wanted the
emergency squad called to attempt resuscitation if she arrested
at home” (Crigger, 1998). Given

her desire to live as long as possible, it would make sense that
she would want every chance
available to live.
Presuming Sally does have capacity, she is entitled to receive
full disclosure regarding anything
to do with her medical care—a right that extends to her
rejection of a proposal that is in conflict
with her own goals. Consequently, if the attending physician
institutes a DNR order without
Sally’s consent would constitute a violation of Sally’s right to
self-determination. Important in
the discussion of full disclosure in Sally’s case is the fact that it
no one has explained the
potential adverse consequences of performing CPR (Cardio-
pulmonary resuscitation) on

someone in her current medical condition. From the facts
presented, it is unclear how Sally
would respond if she knew there was a significant chance that if
she survived CPR, she could
end up in a Permanent Vegetative State, permanently
unconscious and kept alive by artificial life
support as a result.
The physician’s position that CPR is futile given the potential
for harm and what he perceives as
negligible benefit, does not override Sally’s right to define what
is and is not beneficial for her.
Acting on his own subjective values and interpretations, and
ignoring Sally’s values and desires
would constitute an act of Paternalism, a direct violation of
autonomy (Tong, 2007). While it is
true that a patient cannot demand an inappropriate treatment—

one that would produce more
harm than benefit— it could be argued that CPR as a standard
emergency procedure to ward off
imminent death does not pass the “inappropriateness” test. If a
patient with capacity is provided
with full disclosure of the potential harms, it is the patient’s
right to weigh the risks and benefits,
and make an informed choice. (Munson, 2012).
Similarly, if it is determined, that Sally lacks capacity; the
doctor would still be potentially
outside his authority to institute the DNR without informing
Sally’s surrogate decision maker.
While it is unclear whether Sally’s husband is her Healthcare
proxy agent, as a person who
knows her best and her spouse, he would still have the
presumptive right to use substituted

judgment and make the decision he believes Sally would make,
if she could. Knowing Sally’s
express position on the issue of aggressive treatment, he has an
obligation as the healthcare agent
to reject the DNR, regardless of his personal opinion and desire
that Sally just receive comfort
care.
Jane Doe
In addition to the ethical principle of Autonomy and the
doctrine of informed consent, Care-
based Ethics also supports Sally’s right to reject the DNR. Care-
based Ethics emphasizes values
and virtues such as compassion, empathy, kindness and most

important, sensitivity to each
patient’s unique perspective and circumstances (Tong, 2007).
Because Sally is adamant she
wants everything done right now to help keep her alive as long
as possible, a physician
empathetic to Sally’s concerns and circumstances would not
sign the DNR without at least
informing her and addressing her fears about death and her
desire to preserve her life.
5. Recommedation:
Prompt objective: Present your assessment, resolution or
potential solutions for resolving the
issue. Remember that there are no right answers, per se, so
reflective questions can be as

Based on my analysis, the attending physician should not
institute the DNR against Sally’s
express wishes and without her knowledge. Doing so would
violate the ethical and legal
principles of autonomy and informed consent. I also recommend
that Sally be seen by a
Palliative Care specialist or a medical professional trained in
end-of-life care to help determine
whether Sally’s statements and behaviors demonstrate a lack of
capacity, or are understandably
motivated by denial and fear. Minimally, the consult should
help promote Sally’s overall well-
being by addressing her concerns in a compassionate and caring
way. Lastly, only if Sally lacks
capacity should Sally’s husband, as her healthcare agent, be
allowed to speak for Sally and

refuse the DNR. Because we do not know how Sally feels about
remaining on life support should
CPR fail, Sally’s husband must adhere to the doctrine of
substituted judgement and base a
decision upon his knowledge of Sally’s values and wishes,
including her known spiritual beliefs.
Bibliography
4 H A S T I N G S C E N T E R R E P O R T January-
February 2012
To the Editor:The traditional “in-
formed consent” process for medical
treatment is badly broken. As patients
face fateful medical decisions, they of-
tendonotknowthebasic“gist”oftheir
optionsorthelikelihoodofthepossible

outcomes, good and bad. The shared
decision-makingmovementaimstoim-
provethatsorrysituationbyhavingpa-
tients and clinicians work more closely
together when there is more than one
reasonablemedicaloption,asisthecase
formanyifnotmostsituations.Byen-
suring both that patients are informed
about their choices and that clinicians
areinformedaboutpatientpreferences,
thequalityofmedicaldecisionsshould
be improved. Patient decision aids are
notthemselvesshareddecision-making;
instead, they are tools to help make
shareddecision-makingpracticalinthe
busyworldofclinicalmedicine.
Inhisprovocativearticle(“Question-
ing the Quantitative Imperative: Deci-
sionAids,Prevention,andtheEthicsof
Disclosure,” March-April 2011), Peter
Schwartz seems to acknowledge the
need to improve the current informed
consent process but worries that pro-
viding quantitative information about

possible outcomes as part of a shared
decision-makingprocessmightbemis-
leadingtoorunwantedbypatients.He
proposesthe“default”optionshouldbe
to withhold this quantitative informa-
tion unless and until a patient asks for
it.Hisprimaryargumentsarethatmany
patientshavepoornumeracyskillsand
might not understand—or might even
be misled by—the quantitative facts,
andthatoutcomeshavenotbeenshown
tobebetterasaresultofprovidingpa-
tientswithquantitativeinformation.
Problemswithstatisticalnumeracy—
which have been shown to be an issue
for clinicians, too—do make it more
challenging to communicate risks and
benefits. However, just because a task
is difficult doesn’t mean it shouldn’t be
done.MostpeopleintheUnitedStates
don’twanttoplayapassiveroleintheir
health care, and the proportion isn’t
conditioned by assessed numeracy (M.

Galesic and R. Garcia-Retamero, “Do
Low-Numeracy People Avoid Shared
DecisionMaking?”Health Psychology30
[2011]:336-41).Moreover,asnotedin
PeterUbel’scompanioneditorial(“The
Experimental Imperative”), research
on the communication of quantitative
healthinformationisrevealingthatnew
strategies and technologies can help
overcome these barriers. For example,
visualaids,commonlyusedindecision
aids,canhelpevenpeoplewithfewnu-
meracy skills better understand health
statistics (R. Garcia-Retamero and M.
Galesic,“WhoProfitsfromVisualAids?
Overcoming Challenges in People’s
UnderstandingofRisks,”Social Science
Medicine 70 [2010]: 1019-25). Many
oftheinterventionsforwhichinformed
consentisnecessaryinhealthcare,such
as open-heart surgery and organ trans-
plantation, had to overcome numerous
barrierstoenterthemedicalarmamen-
tarium. It’s time to bring a similar in-

tensityofefforttoovercomethebarriers
of literacy and numeracy in communi-
catingimportanthealthinformationto
thepeoplewhomustlivewiththecon-
sequencesoftheirhealthdecisions.
Holding informed consent to an
outcome standard is an interesting ar-
gument. Schwartz acknowledges that
decision aids that present quantitative
outcomeprobabilitieshavebeenshown
to give patients more accurate percep-
tionsoftheirhealthrisks.Isputtingthe
“informed” in informed consent not
an important goal in itself? Would the
ethicalandlegalimperativeofinformed
consent hold up under scrutiny in a
trialwherepatientsfacingsurgerywere
randomized to an informed consent
process versus none? Would the whole
notionofinformedconsentbescrapped
iffunctionalstatusscoreswerenodiffer-
entinasecondtrial?Ithinknot.
Thekeyissuehereiswhetherthede-

faultoptionininformedconsentshould
be withholding quantitative informa-
tionunlesspatientsaskforitorprovid-
ingitunlesstheysaytheydon’twantit.
For too long, the medical system has
kept patients largely in the dark about
whatclinicianshaveplannedforthem.
Given this history, perhaps it’s time to
make giving more information—in-
cluding quantitative information—the
default position, and to work much
harderatdoingitwell.
Michael J. Barry
TheFoundationforInformed
MedicalDecisionMaking
To the Editor: Every day people
tell me about the challenges they face
in finding safe, decent health care and
making the most of it. Facing tough
letters

TooMuchInformation?
It’s time to overcome the barriers of literacy and
numeracy in communicating important health
information to the people who must live with
the consequences of their health decisions.
DOI:10.1002/HAST.4
January-February 2012 H A S T I N G S C E N T E R R E P O
R T 5
oN tHe WeB
nBioethicsforum
http://www.bioethicsforum.org
AdministrationRevealsLackofCLASS
By Peter S. Arno, Michael K.
Gusmano, and Deborah Viola

Just as the baby boomers are entering
retirement, the first real step toward a
national long-term care policy in forty-five
years has been cast asunder.
WhatisHumane?APleaforPlain
LanguageintheDebatesonAnimal
Experimentation
By Joel Marks
“Humane” is implicitly defined as
meeting accepted standards of care and
use according to legal and institutional
guidelines. What this means in practice is
that anything can be done to a laboratory
animal, provided it is necessary to carry
out an experiment or other procedure that a
committee has deemed worthy on scientific
and perhaps humanitarian grounds. I
submit that this is an illegitimate use of the
term “humane.”
Also:michaelK.Gusmanopointsout
misinformationaboutU.S.poverty;
CarolLevinesuggeststhatwe’dallbetter
startsavingnowforourbabies’future

long-termcare;franklinG.millerand
robertd.truogexploreuncertain-
tiespromptedbythelatestresearch
onpatientsinthevegetativestate;and
CameronWaldmanvisitsZuccottiPark
totalkwithcliniciansoccupyingWall
Street.
nthehealthCareCostmonitor
http://healthcarecostmonitor.
thehastingscenter.org
GlobalCompetitiveness:HowOther
CountriesWin
By Daniel Callahan and Elizabeth
H. Bradley
Nearly every country that leads the world
in international economic competitive-
ness also has a strong government-run or
regulated universal health care system and
a comprehensive welfare policy. The one
exception is the United States.
decisions about treatments and tests
withlittleornoobjectiveinformation

toguidethemoftentopstheirlistofdif-
ficulties.Ihavefrequentlyexperienced
thismyselfasIrecoverfromtreatment
ofmyfourthcancerdiagnosis.
I appreciate Peter Schwartz’s recog-
nitionoftheburdenplacedonpatients
andlovedonestoincorporatecomplex
risk information into decisions about
our care. And I welcome any con-
cern—however tangential—about the
shiftofresponsibilitiesfromclinicians
to patients, who are often ill-prepared
tofulfillthem.However,Ifindhisar-
gumentoverlyprotectiveinlightofthe
rushed, confusing demands of health
care today, increased public access to
health information, and the shared
decision-making policies imbedded in
theAffordableCareAct.
Schwartzdescribesthegeneralinnu-
meracyoftheAmericanpublicwitha
particularemphasisonourinabilityto
understandthedifferencebetweenrel-

ativeandabsoluterisk.Yetheneglects
to mention that we share this deficit
with many of our clinicians. He also
summarizestheliteratureoncognitive
heuristicsbutagainexemptsclinicians
from discussion. Does he believe that
cliniciansareimmunefromthesesame
biases? My doctor might withhold a
decision aid because she doesn’t have
timeforthiscumbersomeshareddeci-
sion-making nonsense or she believes
sheknowswhatIshoulddotorealize
thebestoutcome.Shewouldvieweach
oftheseasrationalchoices.
More puzzling is the importance
Schwartz assigns to risk information
indecisionswemakeaboutourhealth
care, preference-sensitive or not. Em-
piricalinformationisalways only oneof
manyfactorsthatinfluenceourchoic-
es. Scant relevant risk information is
available for most of the health care
decisionswemakenow.Wejustwing
it, based on anxiety, our neighbor’s

experience, and our sense of what the
rightchoiceistoday,whichcanbein-
fluencedbyourdoctor’smoodaseasily
asitcanbyfamilyandworkevents.
It is thus oddly shortsighted for
Schwartz to recommend withholding
decision aids for some patients (based
on the clinician’s assessment of our
competence) in the relatively few in-
stances where these aids are available
forpreference-sensitivecare,astheyare
for decisions about early-stage breast
cancertreatmentorgettingaprostate-
specific antigen test. Even if we don’t
fully understand what’s at stake, well-
presented risk information powerfully
communicates that we have choices:
that multiple treatment options are
possible,thattherearetrade-offstobe
considered,andthatnoguaranteesex-
ist,regardlessofourchoice.Theseare
sobering but important messages for
ustograspaswe,regardlessofournu-

meracy skills and cognitive biases, are
routinely forced to make critical deci-
sionsaboutourhealthcare.
It’s too late to argue that our clini-
cians should selectively provide de-
cision aids: the ACA provisions for
shared decision-making will likely
eventuallytieclinicianreimbursement
toprovidingthem.Andtheimpetusfor
thatargument—thatprovidingthisin-
formationimposesmandatoryautono-
my—isakintodiscussingthebenefits
ofclosingthebarndoorafterthecows
havewanderedaway:Ourautonomyis
alreadymandatedbydefault.
Jessie Gruman
CenterforAdvancingHealth
To the Editor: In his article, Peter
Schwartzeloquentlydiscussestheben-
efits and potential harms of providing
patients with numeric risk informa-
tion. He describes how—despite our

best efforts to inform patients about
therisksandbenefitsofscreeningtests
and preventive treatments and to im-
prove understanding of probability—
people “have persistently irrational
responses to quantitative information
aboutrisksandbenefits,”regardlessof
their level of numeracy. For decades,
February 2012
decision scientists, economists, and
psychologists have struggled to under-
standwhyeventhemostknowledgeable
andnumeratepeoplemakesuboptimal
healthdecisions.
It seems that in our attempts to
educate patients about probability, we
sometimes fail to appreciate that un-
derstanding numeric facts and figures
is not an exclusively cognitive effort;

rather, it is often heavily influenced by
affect, which in turn influences one’s
abilitytoreason.Awell-knownexperi-
ment conducted in 1994 by Veronika
Denes-Raj and Seymour Epstein illus-
trates how affect can trump rational-
ity, even for well-educated people. In
it,subjectswoniftheydrewaredjelly
beanfromoneoftwobowls.Thesmall
bowlcontainedoneredandninewhite
beans,andthelargebowlcontainedfive
totenredbeansandatotalofonehun-
dred beans in all. Despite the fact that
eachbowlwaslabeledwiththepercent
of red beans it contained, the majority
of subjects drew a bean from the large
bowl, which was clearly the inferior
choice.Subjectsreportedthatthey“felt”
theyhadabetterchanceofwinningby
selectingthebowlwiththegreaterabso-
lutenumberof“winning”beans.
Theinteractionofaffectandnumer-
acy in health decisions has been dem-
onstrated in several studies examining

choices of medical treatments that in-
cludepotentialsideeffects.Inone2006
studyconductedbyJenniferAmsterlaw
and colleagues, people were presented
with two surgical scenarios: one had a
20percentmortalityrate,andtheother
had a 16 percent mortality rate along
witha1percentchanceoffourunpleas-
ant side effects (colostomy, chronic di-
arrhea, intermittent bowel obstruction,
orwoundinfection).Mostpeoplechose
thesurgicaloptionwiththehighermor-
tality,presumablybecauseoftheiraffec-
tiveresponsetothesideeffectsandtheir
tendencytooverweightlowprobability
events. Indeed, the mere presence of a
small side effect may decrease willing-
ness to undergo treatment, even if the
treatment offers substantial benefit.
Erika Waters and colleagues found in
2007 that side-effect aversion occurred
regardless of how probability was pre-
sentedorwhethergraphicformatswere
used to convey risk information, sug-

gestingthatdecisionswereguidedbyan
affective response to the possibility of
sideeffects,ratherthanbynumericrisk.
There are, of course, potential dan-
gers associated with providing patients
with too much quantitative informa-
tion.Inthiseraofshareddecision-mak-
ingandunprecedentedaccesstohealth
information, it is easy to experience
dataoverload.Providingpeoplewithall
available information can actually hin-
derdecision-making,andoften,lessnu-
mericinformationismorewhenhelping
people make quality health decisions.
Amongthepotentialdangersofprovid-
ing too much information is that pa-
tientsmaynotbeabletodiscernuseful
informationfromthemerelyrelevantor
altogetherirrelevant.However,thereare
also potential dangers associated with
providingtoolittleinformation.AsAn-
thonyBastardiandEldarShafirdemon-
stratedin1998,whenpeoplearefaced

with a preference-sensitive decision,
they often seek additional information
regardless of whether that information
iscriticaltotheirdecision.Inaseriesof
experiments,theyobservedthatpeople
whopursuedmissinginformationtend-
ed to endow it with greater value than
theywouldhaveifithadbeenavailable
initially. Somehow the act of pursuing
a missing but nonessential piece of in-
formation lent greater psychological
weight and salience to it. In a health
context, such misguided information-
seekingmightleadpatientstobaseim-
portanthealthdecisionsonfactorsthat
may be relevant but nonessential to an
effective decision. Clearly, more work
is needed to understand the possible
unintended consequences of providing
toomuchortoolittleriskinformation.
Attheveryleast,providersshouldkeep
in mind how affect can be attached to
numbersandrisksareperceived.

Wendy Nelson
NationalCancerInstitute
To the Editor:Thereisagreatdeal
of merit in Peter Schwartz’s important
andusefularticle,anditwilldoubtless
prompt considerable debate. I would
liketoaddtwobriefcomments.
First, Schwartz’s target—the quan-
titative imperative—can be viewed as
a specific instance of a broader target.
In Rethinking Informed Consent (Cam-
bridge University Press, 2007), Onora
O’Neill and I, like Schwartz, were
struckbytheconsiderableevidencethat
patients and research subjects often do
not comprehend what is disclosed. As
a result, “informed consent” is often
considered obtained even when, rela-
tive to contemporary standards, it is
substandardorinvalid.Toimprovethis
situation, we argued—amongst other
things—thatweneedtobeclearabout

the distinction between consent and
informed consent. The former is a fa-
miliar form of action that involves the
settingasideofrightsortheremovalof
certain kinds of prohibitions. Consent
isofconsiderable,butnotfoundational,
ethical importance for clinical actions.
Whilethosewhoconsentneedtoknow
something of the action to which they
consent,itdoesnotrequire“disclosure”
of large amounts of information about
proposed actions or risks. Informed
consent, in contrast, has its roots in
negligence law in the clinical context
andsharesbiomedicalethics’particular
The quantitative imperative is simply part of an
unjustified informative imperative that places
unfeasible demands upon those consenting.
January-February 2012 H A S T I N G S C E N T E R R E P O

R T 7
focus on the importance of individual
decision-making. We argued that bio-
medical ethics has, without sufficient
justification,takeninformedconsentto
be of key ethical importance. Matters
are made worse by the prevalence of a
widerangeofmetaphorsthatshapeour
thinkingaboutknowledgeandcommu-
nication,suchthatinformationisread-
ilycastasatypeof“stuff ”tobepassed
on,stored,disclosed,orpickedup.
Putting these elements together and
aligning with Schwartz’s terminology,
there is a ubiquitous informative im-
perative that pervades biomedical eth-
ics. This informative imperative rests
uponarangeofdistortionsandconfu-
sions. Once the ethical arguments are
clarified, the informative imperative
canbeseenasmuchlessdemandingin
its scope than is typically assumed.We
would thus agree with Schwartz’s con-

clusion—that quantitative information
ofcertainkindsneednotbedisclosed—
but for a different set of reasons. The
quantitativeimperative,onourview,is
simplyapartofawidespreadbutunjus-
tifiedinformativeimperativethatistoo
broadinitsscopeandplacesunfeasible
demandsuponthoseconsenting.
Second, it is important to note that
there may be reasons other than en-
suring validity of consent for disclos-
ing quantitative information. Given
the legal context of informed consent,
Schwartz’s proposals might raise wor-
riesforclinicians.Supposeinformation
aboutcertainrisksismerelymadeavail-
able, rather than being communicated
(andacknowledgedassuchby,say,sign-
ingaconsentform).Supposethatoneof
therisksnotcommunicated,butmade
available,happens.Thepatientsueson
thebasisthathadshebeeninformedof
therisk,shewouldnothaveconsented.
Thequantitativeimperativecanthusbe

seenasaprecautionarystrategyforcli-
niciansandtheirinstitutions.
Schwartzfocusesontherolethatin-
formationplays,orispurportedtoplay,
inenablingpatientdecision-making.In
arecentpaperintheJournal of Medical
Ethics (“Why Do Patients Want Infor-
mation If Not to Take Part in Deci-
sion Making?”), I focus on the (good)
reasons that patients have for wanting
information other than for decision-
making purposes. Patients want infor-
mation because they expect it, because
it allows them to establish trustworthi-
ness and credibility with their doctor,
and because the very process of com-
municatinginformationcanbeasignal
of respect and faith in a patient’s com-
petence. So even if we agree that the
quantitative imperative lacks firm ethi-
cal support, we might still believe that
suchinformationshouldbedisclosed.

Neil C. Manson
LancasterUniversity
Peter Schwartz replies:
I must correct Jessie Gruman’s sug-
gestion that my article supports with-
holdingdecisionaidsorquestionstheir
importance. Like Michael Barry and
Gruman, I agree that patients often
want or need more information than
theyreceive,andIbelievethatdecision
aidscanhelpaddressthisproblemand
will most likely play a growing role in
medicine. But the question is whether
decision aids can best help patients by
always providing quantitative infor-
mation—in particular, complex data
framedinmultipleways,astheInterna-
tional Patient Decision Aids Standards
andmanyexpertsrecommend.
Research has not established that
such disclosure improves patients’ un-
derstanding or decision-making in the

range of situations where decision aids
mightbeused.Therearemanypossible
negative impacts, mostly stemming
frominnumeracyandheuristicsandbi-
asesinhumanthought,asdescribedin
myarticleandintheexcellentaddition-
alexamplesprovidedbyWendyNelson
inherletter.Givenallthis,Iarguethat
the quantitative imperative must be
subjectedtomorecarefultesting,inthe
spiritofevidence-basedmedicine.
Barry’sletterandPeterUbel’seditori-
althataccompaniedthearticlesupport
research to investigate innovative ways
to provide quantitative information to
inform patients, including innumer-
ateones,withoutcreatingconfusionor
engendering irrational responses. Such
researchiscertainlyimportant,butmy
article emphasizes that the question is
not just how to present certain types
of data, but whether to present data at
all, and in what situations. Researchers

shouldnotassumethatallrelevantdata
shouldbegivenallthetime:itmayturn
out that in at least some cases, less is
more (for example, see B.J. Zikmund-
Fisher, A. Fagerlin, and P.A. Ubel, “A
Demonstration of ‘Less Can Be More’
in Risk Graphics,” Medical Decision
Making30[2010]:661-71).
My article is thus a call to keep an
open mind as research goes forward. It
aimstoplayarolethattheoreticalethi-
cal and philosophical analysis should
play:identifyingandcritiquingassump-
tions that guide behavior or research
in unrecognized or unexamined ways.
The assumption that all quantitative
information should be provided all the
timeisexactlythatsortofphilosophical
commitment.
I agree with Gruman that patients
too often cannot get information they
want, but I believe that decisions aids
maybestaddressthatproblembymak-

ing the information available to those
who want it, rather than presenting
it to everybody. She raises the excel-
lent question of how to choose who
will receive additional data, and she is
right, of course, to reject the idea that
thedecisionshouldbebasedsimplyon
a clinician’s impression of the patient’s
competence.
But what about a system where pa-
tientsareofferedadditionalinformation
Letterstotheeditormaybesentbye-mail
to [email protected], or to
Managing Editor, Hastings Center Report,
21MalcolmGordonRoad,Garrison,NY
10524; (845) 424-4931 fax. Letters ap-
pearing in the Report may be edited for
lengthandstylisticconsistency.
February 2012

of various sorts? This idea is far from
radical: recommendations for discus-
sionsbetweenhealthcareprovidersand
patients suggest that some information
shouldbegiveninitially,andadditional
informationshouldbeofferedasanop-
tiontothosewhowantit(see,forexam-
ple,R.M.Epstein,B.S.Alper,andT.E.
Quill, “Communicating Evidence for
Participatory Decision Making,” Jour-
nal of the American Medical Association
291 [2004]: 2359-66). The amazing
capabilitiesofcomputer-baseddecision
aidsmaytemptdesignerstoprovidetoo
muchinformationupfront,andtofor-
getthewisdomoftailoringdisclosureto
thepatient’sinterestandunderstanding.
I agree with Neil Manson that
the quantitative imperative is part of
a larger “informative imperative” in
medicine that should be questioned
and challenged as Manson, O’Neill,
Carl Schneider, and others have done.

Considering how to provide the right
information,totherightpatients,atthe
right time, by way of a decision aid or
personal interaction, raises important
ethical and empirical questions, as the
articleemphasizes.
Doctors and Torture
To the Editor:In“TheTorturedPa-
tient: A Medical Dilemma” (May-June
2011), Chiara Lepora and Joseph Mil-
lum raise the issue of whether a physi-
cian may be justifiably complicit in
torture and answer in the affirmative.
Their argument is predicated on there
being a litany of moral considerations,
of which the wrongness of complicity
in torture is merely one; this wrong-
ness competes against other values
and sometimes is outweighed. While I
disagree with some of the authors’ as-
sumptions—for instance, that torture
is always unethical in the cases that
physicians are forced to countenance,

orthatcomplicityinanimmoralactis
primafacieimmoral—Iagreewiththeir
conclusion. Surely those who trumpet
deontological constraints would think
otherwise,butthisconclusionnaturally
follows from a pluralistic set of moral
values.
Whiletheyciteawiderangeofdec-
lamations against physicians’ involve-
mentintorture,onethattheyleaveout
comesfromsection2.067oftheAmeri-
canMedicalAssociation’sCode of Medi-
cal Ethics. What makes section 2.067
interesting is not just what it says, but
alsothefactthatitcomeshierarchically
nestedundersection2.06,whichspeaks
tophysicianinvolvementincapitalpun-
ishment. From the Code’s perspective,
the issues pertaining to capital punish-
mentandtortureareisomorphic:what
mattersismerelythatphysicianinvolve-
mentcouldmakethepatientworseoff.
In the case of capital punishment, the

upshotisobviousand,inthecaseoftor-
ture, resuscitation in order to facilitate
moretortureissimilarlydepraved.
This argument fails in both cases,
andthereasonhelpselucidatewhyLe-
poraandMillumareontherighttrack.
Thequestiontoaskislesswhatwould
happen if physicians were present,
but rather what would happen if they
were not. For example, imagine that
physicians were disallowed from these
settingsandaprospectivepatientexpe-
rienced complications: the abolitionist
would just settle for this person being
worseoff.Aphysician’spresenceensures
thateasilyremediablesituationsberem-
edied, which is precisely what I would
advocate.Thisisnottosaythatthereare
nocapacitiesinwhichphysicianscould
make people worse off, just that there
are some in which those people could
be made better off; therefore, a whole-
saleabolitiononphysicianparticipation
misses the mark. (There’s also an open

question about whether such agents
should be conceived of as “physicians”
atall—asopposedtomedicallytrained
militarypersonnel—butIshallnotpur-
suethatdiscussionhere.)
Tobesure,thoseopposingphysician
involvement in either capital punish-
mentortortureare,almostalways,not
just opposing physician involvement,
but rather those practices themselves.
When the Code says that physicians
must “oppose . . . torture for any rea-
son,” it is clearly making a political
claim and not one narrowly tied to
medicalethics;itisforpreciselythisrea-
son that I find such statements by the
Codetobeinappropriate.AsLeporaand
Millum acknowledge, some debate the
appropriateness of torture in “narrowly
specified, extreme cases.” It is a credit
to their essay that such a debate is left
open,ratherthanforeclosedbyfiat.

Fromtheperspectiveofmedicaleth-
ics,thecentralquestioniswhetherphy-
sicianinvolvementintorturemakesthe
patientbetterorworseoff.Fromamore
thoroughgoingconsequentialismofthe
sort that I would advocate, this ques-
tion bears no privileged status. While
Lepora and Millum would surely not
agreewithallofmyarguments,theyare
tobecommendedforeschewingdogma
andreachingacontroversialconclusion.
More generally, one would also hope
that their paper portends increased at-
tention to military medical ethics; this
is an important area within medical
ethics,andonethathasreceivedinsuf-
ficientattention.
Fritz Allhoff
WesternMichiganUniversity
The question to ask is less what would happen if
physicians were present, but rather what would

happen if they were not.
Copyright of Hastings Center Report is the property of Wiley-
Blackwell and its content may not be copied or
emailed to multiple sites or posted to a listserv without the
copyright holder's express written permission.
However, users may print, download, or email articles for
individual use.
10/27/2016
Final Case Analysis: The Emilly Dilemma - Abortion
https://mycourses.excelsior.edu/bbcswebdav/pid-3200850-dt-co
ntent-rid-31405097_1/courses/BHS.HSC312.Online.201610.201
612.s30047605/course%20wide… 1/3

Final Case Analysis: The Emily Dilemma - Abortion
Introduction to the Activity
Recall, that an ethical dilemma can be defined as two morally a
cceptable choices, both of
which will result in morally disturbing and unwelcome conseque
nces. Often when we
considering our position regarding an ethical dilemma, it is help
ful to consider not only the
issue presented, but whether we can justify our position based o
n an extreme, yet realistic
set of conditions. Abortion is perhaps one of the most disturbing
and confounding of issues
for engaging in such an exercise, as it is sometimes difficult to j
ustify the inconsistencies in
our moral intuitions when confronted with situations that define
an ethical dilemma.
Related Reading from Module 7:
Module notes and assigned textbook pages
Videos:
Ankele, J. (Producer), & Macsoud, A. (Producer) (2010). Beyon

d the politics of
life and choice: A new conversation about abortion (link availab
le in Mod 7)
Tsiaras, A. (Director) (2011, November 14). Alexander Tsiaras:
Conception to
birth -- visualized TedTalks. [Video file][9 min 37 sec]. Retriev
ed from
http://www.youtube.com/watch?v=fKyljukBE70 (apprx. 10min)
Iadarola , J. (Performer) (2012, November 25). Study: What hap
pens to women
denied abortions? [Video file][5 min 17 sec] The Young Turks.
Retrieved from
http://www.youtube.com/watch?v=dWBjQ7P9SSs (apprx. 5 min
)
Instructions to Learners
Please read the case scenario:
Twenty year old Emily who suffers from Bi-polar disorder and
Schizophrenia lives at home
with her parents, but is fairly independent. Last year, Emily had
a breakdown while living
away at school and required hospitalization. Due to a complex
mix of anti-psychotics,

antidepressants and other medications to control her condition,
Emily is now working part-
time at a local bookstore and taking two classes at the communit
y college. Emily loves
children and hopes eventually to become a kindergarten teacher.
Although Emily is on
birth control pills, she had missed some days over the past few
months during a brief
‘lapse’ in her mood, but insisted throughout that time that her b
oyfriend wear a condom.
The condom failed at some point and Emily is now eight weeks'
pregnant.
http://www.youtube.com/watch?v=fKyljukBE70
http://www.youtube.com/watch?v=dWBjQ7P9SSs
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Emily’s doctors insist that the baby is at an exceptionally high r

isk for severe physical and
mental impairments, including incomplete limb and/or brain dev
elopment. At best, there is
no solid data detailing teratogenicity risk for all of her medicati
ons, but the combinations
and inability to incorporate less harmful substitutes raise signifi
cant concern. Because she
is within the first trimester, there are no legal concerns based on
the Roe v. Wade decision
so the doctors, her parents and her boyfriend are insisting that E
mily have an abortion to
spare the burden on the child. Emily, a devote Catholic, insists
on carrying the baby and
raising it once it is born. She has also personalized the argumen
ts, finding that by
devaluing the life of her baby, her family and others devalue her
as well.
Emily’s parents have threatened to file for guardianship over he
r so that they can force the
abortion, under their belief that she lacks decision-making capa
city and the abortion is in
her best interests. Although the doctors have no standing to join
the suit, they have agreed
to serve as expert witnesses for the parents. Emily’s boyfriend i
s considering petitioning

the court--after the baby is born--for the right to be released fro
m any parental
responsibilities, given his lack of a position in the decision to a
bort.
Emily’s Psychiatrist, Dr. Heady is very troubled by the case bot
h for Emily and for the
developing fetus. Knowing that you are a famous ethicist, he co
ntacts you informally and
presents the case as a hypothetical, maintaining Emily’s confide
ntiality. Dr. Heady is
unsure whether the parents can legally force the abortion, but he
is troubled on a much
more fundamental level, which is why he is seeking your counse
l.
Please respond to the following questions (approx. 500-700 wor
ds) using the
template format provided for the assignment:
Presuming that Emily has decision-making capacity, Dr. Heady
would like to hear your
thoughts on the following:
Ethically, should Emily be able to reject the abortion in the first

trimester, knowing
that it is highly probable that continuing to take her necessary
medications will
severely and permanently impair the baby?
In reflecting upon the question, recall the court’s arguments in
Roe v. Wade, and any
counter arguments provided in your materials. Also, consider th
e question of the
fetus (encompassing all stages from conception through prebirth
development) and
the concept of moral standing.
Use the following template for your assignment:
1. Use Microsoft Word to create a document.
2. Copy/paste the title of the question.
more than two).
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612.s30047605/course%20wide… 3/3
4. Briefly describe the primary issue or issues that are relevant i
n the scenario with
respect to the dilemma.
5. Identify the most relevant stakeholder(s) (no more than 3) an
d briefly describe the
6. Analyze the dilemma, using scholarly discussion, from the pe
rspective of the primary
stakeholder (typically the patient). Include a discussion of at lea
st two ethical theories
or bioethics principles studied in the course that relate to the dil
emma and issues you
outlined in the
readings.
Remember that there are no right answers, per se, so reflective q
uestions can be as

8. Title page + APA formatted reference(s).
10/27/2016 Final Case Analysis: Paternalism vs Autonomy
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Final Case Analysis: Paternalism v.s. Autonomy – Dax Cowart
I would like to introduce you to the story of Dax Cowart. Attach
ed is an excerpt from a
speech that Dax Cowart made several years ago, a speech that re
mains poignant for
contemporary reflection. The story is heart breaking and challen
ges all the bounds of
ethics and health care. As you listen to Dax, or read the transcri
pt of his talk, think about

the issues Dax discusses, especially in connection with capacity
and the right to decline
medical treatment (which we will discuss in greater detail later
on in the course). These are
the stories and circumstances where ethics and health care colli
de and individuals are
forced to make tough decisions. In thinking over your responses
to the Discussion Board
questions, consider the concepts we have talked about in this M
odule and in Module I,
such as personal moral values; bioethical principles; the need to
weigh and prioritize
competing moral interests; a physician’s charge to provide ethic
al care and a patient’s right
to self-determination.
Munson text: pp. 36; 38-40 (end at State Paternalism); 41-42 (e
nd at Informed
Consent); 891904;
UVA News Makers - Dax Cowart
(Note: you may either watch the video part 1 [Video file] [09 mi
n 30 sec], and

video part 2 [Video file] [07 min 53 sec] or read the transcript a
nd Hastings
Center Report: Confronting Death: who chooses, who controls?)
ds) using the
You are Dax’s physician. How would you respond to Dax’s requ
ests that you “let him die”?
Would you continue to treat him against his wishes? Why or Wh
y Not?
more than two).
n the scenario with

http://www.virginia.edu/uvanewsmakers/newsmakers/cowart.ht
ml
https://www.youtube.com/watch?v=lSsu6HkguV8&list=PLD93B
CDA6AFE8C393
https://www.youtube.com/watch?v=oGISGeKqCEM
http://www.virginia.edu/uvanewsmakers/newsmakers/cowart.ht
ml
http://vlib.excelsior.edu/login?url=http://search.ebscohost.com/l
ogin.aspx?direct=true&db=rzh&AN=1998034028&site=ehost-
live&scope=site
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emma and issues you
outlined in the
readings.
uestions can be as
10/27/2016
Final Case Analysis: Morally Wrong or Ethically Challenging?
612.s30047605/course%20wide… 1/2

Many states have considered enacting PAS legislation since Ore
gon first legalized the practice in 1994, but as of yet, only
Oregon and Washington have laws allowing for Physician Assist
ed Suicide (PAS) 127.800; RCW 70.245). In Montana,
although there is no current legislation regarding PAS, the Mont
ana Supreme Court provided protection for doctor’s
providing lethal medication to terminally ill patient’s upon requ
est (Baxter v. Montana, 2009 MT 449). Currently, forty-three
states have specific laws (either statutory or common law (case
law) prohibiting assisted suicides, but four states (Hawaii,
Nevada, Utah, Wyoming) and the District of Columbia have no l
aw regarding the subject. Just recently, Massachusetts
voters defeated a ballet initiative based upon the Oregon statute
by a marginal 51% majority.
Module notes and assigned textbook pages
Arras, J. (1997). Physician-assisted suicide: a tragic view. The J
ournal Of Contemporary Health Law And Policy,
13(2), 361-389. (28)

*The New York State Task Force on Life and the Law, (1997).
When death is sought assisted suicide and
euthanasia in the medical context supplement to report. Retrieve
d from website:
http://wings.buffalo.edu/bioethics/suppl.html.
*Scroll down and read until the end of the passage “IV The Dist
inction Between Administering High Doses of
Opioids to Relieve Pain and “Physicianassisted Death.”
Public Health, (1997). Oregon revised statute: Death with dignit
y act (Chapter 127). Retrieved from Oregon Health
Authority website:
http://public.health.oregon.gov/ProviderPartnerResources/Evalu
ationResearch/DeathwithDignityAct/Pages/ors.
rules: 127.800 s.1.01. Definitions - 127.875 s.3.13. Insurance or
annuity policies.
Dep’t of Public Health, Annual Report on Oregon’s Death with
Dignity Act (2012) [PDF file size 197 KB]
ationResearch/DeathwithDignityAct/Documents/year15.pdf
*Scan through the report to get an idea on how the statistics are
compiled and trends recorded

You are a physician-ethicist at Hope hospital in Nirvana, USA.
Your state is voting this month whether to allow PAS, under
the exact guidelines and safeguards instituted in Oregon. The lo
cal news station has asked you to join a televised multi-
disciplinary panel and discuss the following questions:
Reviewing the safeguards included in the Oregon Statute, which
one(s ) potentially raise the most concerns in terms of
their ability to protect patients in Nirvana, USA? In developing
your response, consider whether the concerns are morally
founded or policy oriented. Also keep in mind the rules of profe
ssional responsibility, patient rights and the principles of
bioethics we have studied throughout the course.
NOTE: Please use the modified template below when considerin
g your response with respect to completing the template,
remember that a stakeholder can be described as many entities,
such as but not limited to an individual, a professional
society, the public at large or a subset of the population.
Modified Template:
1. Use Microsoft Word to create a document

2. Copy/paste the title of the question
3. State the safeguards that you find most concerning.
4. Identify the most relevant stakeholder(s) (no more than 3) pot
entially affected by the safeguards you listed.
http://www.lexisnexis.com.vlib.excelsior.edu/lnacui2api/api/ver
sion1/getDocCui?lni=3S3T-V110-00CV-
P0S8&csi=138724&hl=t&hv=t&hnsd=f&hns=t&hgn=t&oc=0024
0&perma=true
http://wings.buffalo.edu/bioethics/suppl.html
ationResearch/DeathwithDignityAct/Pages/ors.aspx
ationResearch/DeathwithDignityAct/Documents/year15.pdf
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5. Analyze the concerns, using scholarly discussion from the per
spective of the primary stakeholder. Include a

discussion of at least two ethical theories or bioethics principles
studied in the course that relate to the dilemma and
issues you identified. Include any relevant legal concerns or req
uirements outlined in the readings.
resolving the concern. Remember that there are no
right answers, per se, so reflective questions can be as appropria
te as a firm conclusion.
7. Title page + APA formatted reference(s)
10/27/2016
Final Case Analysis: Confidentiality, Disclosure and Livid Love
birds
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birds

Informed consent requires not only that a patient receive all of t
he information necessary to
make a reasoned decision, but also that they are able to process
and understand the
information provided. Language or cultural differences may imp
ede understanding, and a
blanket reliance on a doctor’s judgment may subvert the intent o
f the disclosure. Other
barriers to informed consent, such as denial, fear and even famil
y dynamics are often
more difficult to spot, but equally if not more detrimental. Relat
ionships between patients,
family members and healthcare providers often morph over time
into roles and role
reversals that present special challenges in healthcare ethics and
the doctor-patient
relationship. In this activity, you will consider the standards of
professional responsibility,
medical ethics and the doctor-patient relationship as they apply
when the boundaries
between the roles become blurred.

Module Notes
Munson text: (end at Parents & Children).
AMA Opinion 10.01 - Fundamental Elements of the Patient-Phy
sician Relationship
Mitnick, S., Leffler, C., & Hood, V. (2010). Family caregivers,
patients and physicians:
ethical guidance to optimize relationships. Journal Of General I
nternal Medicine,
25(3), 255-260.
Principles of Medical Ethics. (2001).
Schwartz, P. H. (2011). Questioning the Quantitative Imperative
: Decision Aids,
Prevention, and the Ethics of Disclosure. The Hastings Center R
eport, (2), 30.
doi:10.2307/41059016
Mr. and Mrs. Lovebird were approaching their 65th wedding an
niversary when it was
discovered that Mr. Lovebird was battling Stage IV lung cancer,
with metastasis to his
colon. Vowing to “Fight this thing!” the Lovebirds sought out th

e best specialists and Mr.
Lovebird underwent two surgeries, chemotherapy and several ro
unds of radiation. Mr.
Lovebird did quite well for a while, but lately he has experience
d severe fatigue and
discomfort. He has also lost his appetite, resulting in a 15lb wei
ght loss in just two months.
Concerned, the Lovebirds went to see Dr. Friendly, their primar
y care physician for over 30
years, whom they trust implicitly. Knowing that the Lovebirds a
re in denial to some extent,
but also believing that medicine is an inexact science, Dr. Frien
dly told them both about an
http://www.ama-assn.org/ama/pub/physician-resources/medical-
ethics/code-medical-ethics/opinion1001.page
http://www.ama-assn.org/ama/pub/physician-resources/medical-
ethics/code-medical-ethics/principles-medical-ethics.page
http://eds.a.ebscohost.com.vlib.excelsior.edu/eds/detail?vid=2&
sid=3a5595c1-f673-4a7c-9b34-
ff2409ff1a33%40sessionmgr4001&hid=4105&bdata=JnNpdGU9
ZWRzLWxpdmUmc2NvcGU9c2l0ZQ%3d%3d#db=rzh&AN=201
1703087

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birds
612.s30047605/course%20wide… 2/3
experimental treatment option that might be worth “checking int
o,” even though the
chances were slim that it would provide much benefit.
At a dinner party for a mutual acquaintance, Dr. Friendly is app
roached by Lancelot, the
Lovebird’s only child. Dr. Friendly is aware of the close relatio
nship between Lancelot and
the Lovebirds, so he is concerned for their welfare when Lancel
ot approaches him. Once
alone, Lancelot appears upset and tells Dr. Friendly that he is co
ncerned about the
experimental treatment option Dr. Friendly mentioned to the Lo
vebirds, given Mr.
Lovebird’s fatigue and weight loss. From Lancelot’s perspective
, it is obvious that even if
successful, it would only buy Mr. Lovebird a few months and th

ose months may not be
very good ones. He is also concerned that Mr. Lovebird is tired
of treatments, but goes
along to please Mrs. Lovebird. Dr. Friendly smiles and shakes h
is head “Your mother has
always been a force to be reckoned with,” he says “But, in realit
y, a few months is better
than no months!” He also assures Lancelot that if the Oncologis
t does not think Mr.
Lovebird is a good candidate for the procedure, the Oncologist
will tell them so.
When Lancelot suggests that Dr. Friendly’s professional judgme
nt may be colored by the
Lovebird’s denial, Dr. Friendly becomes defensive, stating that
as their doctor all he can do
is provide them with information and statistics on the disease pr
ognosis and the benefits
and risks of any potential options. He admonishes Lancelot, stat
ing “if your parents want to
believe in miracles, I am not going to take that away from them,
and you shouldn’t either!”
Visibly upset, Lancelot insists that Dr. Friendly discuss the Hos
pice option with the
Lovebirds, preferably with Mr. Lovebird, first. Although Dr. Fri

endly is concerned that the
idea of Hospice could be more lethal to the Lovebirds than any
experimental treatment, he
agrees, on the condition that Lancelot raise it with the Lovebird
s first. “If your parents seem
open to the conversation, give me a call or have them call me, a
nd I will sit down with them
to discuss the options.”
The next day, Lancelot goes to see Mr. and Mrs. Lovebird, and s
hares his conversation
with Dr. Friendly, telling them that both he and Dr. Friendly agr
ee that it may be time for
Hospice services. Both the Lovebirds become very angry that he
was discussing them with
Dr. Friendly without them knowing it. They are also devastated
that Dr. Friendly would
conspire with Lancelot to force a decision on them that is clearl
y premature. When he
leaves, Mrs. Lovebird calls Dr. Friendly and tells him that she i
s furious with his breach of
confidentiality and that he should stick to family practice, as he
is not an oncology expert.

ds) using the
Given Dr. Friendly’s longstanding relationship with the Lovebir
ds, his insight into their
processing and coping mechanisms, and the close family relatio
nship he has witnessed
between the Lovebirds and their son, did Dr. Friendly’s breach
his professional
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responsibility to Mr. and Mrs. Lovebird by suggesting that Lanc
elot discuss the Hospice
option with the Lovebirds first?

more than two).
n the scenario with
emma and issues you
outlined in the
readings.

uestions can be as
A MEDICAL ETHICS ASSESSMENT OF THE CASE
OF TERRI SCHIAVO
TOM PRESTON
University of Washington, Seattle, Washington, USA
MICHAEL KELLY
Swedish Medical Center and University of Washington,
Seattle, Washington, USA
The social, legal, and political discussion about the decision to
stop feeding and
hydration for Terri Schiavo lacked a medical ethics assessment.
The authors used

the principles of medical indications, quality of life, patient
preference, and
contextual features as a guide to medical decision-making in
this case. Their
conclusions include the following: (a) the use of a feeding tube
inserted directly
in to the stomach constituted artificial treatment; (b) the
treatment prolonged
biological life but did not lead to a cure and did not restore
health; (c) quality
of life was absent for the patient, with no sensation and no
motor or cognitive
functioning; and (d) by preponderance of medical opinion, she
would have chosen
not to live in a persistent vegetative state. The authors find the
withdrawal of
treatment was permissible and correct. It was not a choice
between living and
dying, but a decision of when to allow dying consistent with the
patient’s choice.
The case of Terri Schiavo, vexing as it was, holds lessons for us
all.
The forceful public reactions to the medical and legal
proceedings

leading to her demise showed a deep schism over the moral=
religious issues inherent in how we die in the modern age of
medi-
cine. In our opinion, the political and legal wrangling detracted
from the public understanding of the medical and bioethical
issues
involved in the case.
Some might further argue that the case exposed a severe fault
line in the bioethics approach to issues of this sort, or at least a
limi-
tation of the usefulness of bioethics. After all, the case never
went
under the scrutiny of a bioethics committee and there was no
This article was written prior to release of the autopsy report on
Terri Schiavo.
Address correspondence to Tom Preston, 1128 22nd Ave. E.,
Seattle, WA 98112.
E-mail: [email protected]
121
Death Studies, 30: 121–133, 2006
Copyright # Taylor & Francis Group, LLC

ISSN: 0748-1187 print/1091-7683 online
DOI: 10.1080/07481180500455608
formal statement of medical ethics conveyed to the public in
support of letting Terri die. The public media presentation of
the
case was in social, political, and legal terms, with sparse, if
any,
discussion of how bioethical principles might apply to the
difficult
issues involved. The absence of a classic medical ethics
assessment
was a lost opportunity to educate the public.
In this article we apply the basic tenets of medical ethics to the
medical decision-making process in the Schiavo case. Medical
ethics, or bioethics, began as a means of giving physicians and
other health care providers guidelines for handling ethical pro-
blems that occur in the practice of medicine. It then developed
as a method for dealing with new ethical issues, particularly
those
arising from procedures such as artificial kidney treatment
(dialy-

sis), resuscitation, and withdrawal of life-sustaining treatment
( Jonsen, Siegler, & Winslade, 1992). We use the technique of
Jonsen, Siegler, and Winslade (2002), which focuses on four
topics
clinicians should take into account in assessing the ethical
aspects
of a medical decision: medical indications, patient preference,
quality of life, and contextual features.
Medical Indications
Medical ethics begins by asking whether the proposed treatment
or procedure is medically indicated—does it fulfill the goals of
medicine? Using the principle of beneficence, we ask does this
treatment maintain life, restore health, and prevent symptoms?
Do the benefits outweigh the potential harm of the treatment?
What were the medical ‘‘facts’’ of the Terri Schiavo case, and
what can bioethics teach us about how to proceed when a next
similar case occurs? Removing Terri Schiavo’s feeding tube was
not a treatment per se, but rather the discontinuation of
treatment
with hydration and nutrition. Terri did not sense food in her
mouth
and did not have a swallowing reflex. Because she was unable

to
swallow, she could not be fed through her mouth without a
strong
likelihood of choking to death, so the feeding tube was the only
means of keeping her alive. The treatment under analysis is
there-
fore the continuation of fluids and nutrients through Terri’s
feeding
tube. The central question was whether continued treatment
with
the feeding tube was medically indicated. Was this treatment of
122 T. Preston and M. Kelly
benefit to Terri, or was the treatment disproportionately burden-
some and harmful to her?
One of the goals of medicine is to maintain life or to prevent
death. The goal, however, is not to prevent all death but to
prevent
untimely or inappropriate death. In this case, continued feeding
certainly would have kept Terri alive, as it had done for 15
years.

Although in many cases the goal of maintaining life is pre-
eminent,
when the ethical issue is whether life should continue or be
allowed
to end, this goal is subsumed under other considerations.
Whether
death from stopping the treatment would have been considered
timely or untimely depends on factors such as perceived patient
preference, judgment of what would be best for her, and
opinions
about the quality of her life.
Would continued treatment have relieved symptoms of pain
and suffering? No. Terri had only involuntary reflexes, with no
function above the brain stem. She had no cognitive function or
awareness of her surroundings, and no physical or mental
sensation
of pain or suffering. Therefore treatment was not relieving
suffering.
Would continued treatment have restored health? Would it
have cured the disease or improved functional status? Two
neurol-
ogists selected by Terri’s parents (who opposed ending
treatment)

suggested that Terri’s smiles and movements represented
cognition
and sensation, whereas two neurologists selected by Terri’s
husband and one selected independently by the court testified
that
Terri’s reflexes were involuntary and she was in a persistent
veg-
etative state from which she would never recover (see
Cerminara’s
introductory article for a detailed review of the related history).
All five neurologists agreed that Terri had suffered enormous
damage to her brain, such that most of her cerebral cortex,
which
controls conscious thought, was gone, replaced by spinal fluid.
The
biological probability for a cure of her condition was so
minimal as
to be effectively zero.
In the second trial, the court heard conflicting evidence as to
whether new therapy might succeed in restoring Terri’s brain
func-
tion and found no credible evidence that Terri would ever
recover
significant function. This finding was unanimously upheld on

appeal. Undeniably, the prognosis in this case was crucial to a
sound ethical judgment, and any disagreement makes the
decision
difficult. We agree with the trial courts that claims of potential
improvement with new therapies were without merit. The
treatment
Medical Ethics Assessment 123
offered no chance for restoring health. Because treatment was
not
relieving symptoms, and it held no reasonable chance for a cure
or
clinical improvement, there was no medical indication for
contin-
ued treatment with the feeding tube.
Germane to the discussion is a related question: Was Terri
Schiavo on life support, or was she merely being fed through a
tube? Some argued that treatment with food and fluids should
never be withdrawn from dying or permanently unconscious
patients (e.g., Pope John Paul II, 2004). Feeding is natural, they
said, and ‘‘merely being fed through a tube’’ is not life

support—it
is different from stopping treatments such as artificial breathing
with a mechanical ventilator.
We all understand the emotion behind this argument when
it is made to keep a loved one alive, but from a medical ethics
perspective it is not correct. Medically, stopping feeding is no
different from stopping a breathing machine that is keeping
some-
one alive. Air is also natural, and breathing is a natural
function.
Food and air are equally natural and essential to life. If a person
is permanently unable to breathe, we can delay death with
artificial
breathing. If a person is permanently unable to swallow we can
delay death by placing a feeding tube into the stomach and
bypass-
ing the need to swallow.
It is as unnatural to pierce through the abdomen and place a
tube into a patient’s stomach, and then pour food through the
tube
or pump it into the stomach with a machine, as it is to use a
machine to blow air into a patient’s lungs. With artificial
breathing,

the air at least goes in and out through the natural wind-pipe,
while
artificial feeding bypasses the natural process of swallowing
food
through the esophagus to the stomach. The mechanisms of arti-
ficial feeding and breathing are different, but one is not more or
less natural than the other.
But, some argued, food and fluids are ordinary and natural
and stopping them is ‘‘killing,’’ it is ‘‘starving’’ a person to
death
(e.g., Pope John Paul II, 2004). On the other hand, they said, it
is
allowable to disconnect a patient from a breathing machine
because
it is an extraordinary medical measure (see also, President’s
Commission for the Study of Ethical Problems in Medicine and
Biomedical and Behavioral Research, 1983). But one is not
extra-
ordinary, whereas the other is ordinary. In its landmark report,
the President’s Commission for the Study of Ethical Problems
in

Medicine concluded: ‘‘There is no basis for holding that
whether
a treatment is common or unusual, or whether it is simple or
com-
plex, is in itself significant to a moral analysis of whether a
treatment
is warranted or obligatory’’ (p. 87). Also, according to Florida
stat-
ute, a ‘‘Life-prolonging procedure means any medical
procedure,
treatment, or intervention, including artificially provided
sustenance
and hydration, which sustains, restores, or supplants a
spontaneous
vital function’’ (Health Care Advance Directives, Definitions,
x765.101, 2004, emphasis added; see also xx765.301-309). This
is
consistent with medical understanding and the tenets of medical
ethics. Terri Schiavo was on life-support because she could not
survive without the fluid and nutrition treatment she was
receiving.
Nonmaleficence

Application of the principle of nonmaleficence (do no harm)
leads
us to ask, would continued feeding have been good treatment
for
Terri, or would it have harmed her? Would either maintaining
or discontinuing the treatment cause harm out of proportion to
benefit for her?
Would removing Terri’s feeding tube be inhumane by causing
‘‘starvation’’ and pain? In comparison to withdrawing artificial
breathing with a ventilator, stopping tube-feeding appears to be
a
long, drawn-out procedure during which the patient may suffer.
But Terri had no sensation of thirst or hunger. She did not
suffer
when the feeding tube was withdrawn, and the absence of food
and fluids did not cause suffering (Multi-Society Task Force on
PVS, 1994).
There is an important emotional difference between slow
dying after withdrawal of food and water and the rapid death
following disconnecting a patient from a respirator. One
watches
the patient dying slowly from absence of food and water and

might
conclude, ‘‘They are starving her to death.’’ But families do not
usually watch their loved one being disconnected from a
breathing
machine. If they did, they would say, ‘‘They are suffocating
him to
death.’’ Discomfort or pain is possible in the latter procedure
only
if the patient is not given sufficient sedative or pain medicine to
obliterate symptoms. On the other hand, there is no discomfort
associated with dehydration after withdrawal of a feeding tube
in
a patient with persistent vegetative state.
Would continued treatment have harmed Terri? Unfortunately,
many relatives or loved ones of patients on life-supporting
therapy
do not understand the consequences of continued treatment.
Although Terri would not have perceived suffering had she
remained alive, over the years or decades to come she inevitably
would have acquired illnesses associated with aging and being

bed-ridden, which would have increased the psychological
burden
on her family.
The larger question was whether Terri benefited or was
harmed by dying. The answer to this rests in part on her quality
of life if feeding had been continued. Certainty on this point is
impossible and must take into account the complexity of the
judg-
ment of the value of living indefinitely in a persistent
vegetative
state. Whether Terri benefited or was harmed by dying also
depends on determination of her personal preference, or her
valuation of continued living in that condition.
Autonomy, or Patient Preferences
In our opinion, this is probably the most important ethical
determi-
nant of the case. There is little question that had Terri had an
advance directive with a clear statement on whether she would
want to continue living in a persistent vegetative state, the
medical
decision would have been according to her stated desire and
there

would have been little or no controversy. Perhaps the most
daunt-
ing problem in medical ethics is a life or death decision when
the
patient cannot state her choice, and the patient’s loved ones
have
conflicting wishes of what to do. This brings us to the concept
of
substituted judgment wherein the individual(s) who speaks for
the patient must make decisions according to the beliefs and life
style of the patient. The judgment should reflect not what the
loved
ones would want for the patient, but what the patient would
want.
Should we consider a patient’s known religious or social
beliefs? Indeed, we give much weight to any known such beliefs
or affirmations as indicative of a person’s fundamental values
and wishes. To this end, an explicit understanding of Terri’s
religious or social beliefs, such as from recorded statements,
would
have helped in determining whether she would have wanted
treatment to be continued or stopped. There was nothing
conclusive
on this point.

We believe no one can be absolutely certain what Terri would
have wanted, or how much thought she gave before her injury to
what would have been for her a remote and hypothetical matter.
Lacking explicit evidence, we cannot gainsay the findings of the
courts. By the best evidence we have, Terri Schiavo would not
have wished to continue living in the condition of persistent
vegetative state (see Cerminara’s introduction).
Autonomy is exceedingly important in medical ethics, and
ordinarily trumps the wishes of others. The person involved in
the proposed procedure or treatment should in most cases be
able
to make medical decisions for herself, or, as in this case,
through a
surrogate or guardian.
But autonomy cannot be absolute if a medical decision hurts
others disproportionately to the gain of the person making the
autonomous decision. In this case, the decision should take into
account the preferences of others, notably Terri’s closest

relatives
or loved ones. However, the disagreement between Terri’s
parents
and her husband meant that the wishes of the two sides of the
dispute were diametrically opposed. If we give equal weight to
the opposing parties, this consideration is a net sum zero,
leaving
the patient’s desire as the sole determinant. Although some
disagree with the determination of what Terri would have
wanted,
it is based on the best evidence possible, and to go against the
best
evidence would be unwise.
Quality of Life
Future quality of life assessment is contingent on accurate
prognosis.
The finding that with continued treatment Terri would have
remained indefinitely in a persistent vegetative state means
there
was no reasonable hope for a cure, awareness of sensation, the
ability to move voluntarily, or to have cognitive function. With
no
awareness, she had no quality of life. Therefore, continued

treatment
would not have changed her quality of life status—it would not
have
made it better or worse.
Whether continuing with no quality of life would be seen as
favorable or unfavorable devolves upon assessment of whether
Terri would have wanted to continue existing in a persistent
vegetative state. This in turn hinges on medical prognosis.
Although
we acknowledge some difference of opinion regarding Terri’s
prognosis, by the preponderance of expert opinion, further
treatment would have been futile, and she would have had no
qual-
ity of life. By the quality of life criterion, therefore, it was
ethically
permissible to allow her to die.
Contextual Features—Socio-Economic, Personal,
and Institutional

Vital medical decisions are never made in a social vacuum, but
within the context of an individual’s upbringing, her family and
friends, social and cultural institutions, the law, and economic
influ-
ences. It is important to consider all contextual elements in
reaching
an important medical decision, as the decision can have a
lasting
effect on other persons and institutions, as well as on the
patient.
Should a medical decision take into account the considera-
tions of others? Yes, it should, and in particular it should
account
for close family members. However, here we come to the most
wrenching aspect of the case: the conflict and antagonism
between
Terri’s parents and her husband. Terri’s parents said they
desper-
ately wanted to keep her alive, so stopping treatment and
allowing
her to die would have hurt them deeply. On the other hand, if
Terri’s husband believed strongly that she should not be kept
alive,

a decision contrary to that wish would have hurt him. Can we
say
the parents’ emotional pain at seeing her die was greater than
the
husband’s pain would have been had she been kept alive? From
reports in the public media, and from the lengths to which her
par-
ents went to keep Terri alive, we can say ‘‘perhaps so.’’ Did
years
of continued treatment after Terri’s husband first asked to have
the
tube removed cause him pain? Perhaps so. What matters is
whether a decision one way or the other would cause undue
emotional harm to either of the parties.
The perception, by outsiders like us looking at the case, of
harm to either Terri’s parents or to her husband, is undoubtedly
influenced by characteristics, beliefs and values, and economic
or social gain or loss of the opposing personalities in the case.
For example, the personal religious convictions of Terri’s
parents
may have played a large role in wanting to keep her alive. Also,
the relationships of the loved ones to Terri, and observers’
ability
to identify with either the parents or the husband, may influence

outside observers’ views of right and wrong.
Our perception of emotional harm is also influenced by our
own personal values and beliefs. Assessing harm to others
intimately
involved in the case also would involve value judgments based
on
information gleaned from the public media. It would be wrong,
we
believe, to judge the degree of harm to the parents or husband
based on our opinion of the reasons or underpinnings of their
wishes, or perceived personal characteristics of the disputants.
Further, this concern for others is disproportionately small com-
pared with what was best for Terri.
We must also consider the impact of our ethics decision on
institutions and religious or cultural groups that may believe
they
will be impacted by the decision. In July 2004, based on a
speech
in which Pope John Paul II said it is obligatory for physicians to

tube-feed patients in persistent vegetative states, Terri’s parents
filed a motion aimed at stopping withdrawal of the feeding tube
(see Cerminara’s article). This statement was contrary to what
was then a near consensus in the medical ethics community in
the United States—namely, it is ethically permissible to
withdraw
food and hydration in a patient in a persistent vegetative state if
the patient or the patient’s surrogate so desires. This finding
was
also affirmed by the U.S. Supreme Court (Cruzan v. Director,
Missouri Department of Health, 1990). Would a decision to stop
treat-
ment through a feeding tube cause harm to the Church? Many
‘‘right to life’’ advocates objected strenuously to removal of the
feeding tube, often on ideological grounds. Would removing the
feeding tube harm these groups and individuals?
These are contextual ‘‘macro-issues’’ of how individual medical
decisions can influence or alter institutions and policies that
affect
large groups of people or entire populations. Although macro-
issues
introduce important considerations, we cannot give them great
weight in this case. Unless there is a clear and overwhelming
public

consensus, there are usually multiple opposing forces
concerning a
contentious social issue. For example, although ‘‘right to life’’
indivi-
duals may feel harmed by a policy permitting cessation of
feeding
for a patient in a persistent vegetative state, ‘‘right to die’’
individuals
may perceive harm from a converse policy. One of the primary
goals of medical ethics is to protect the individual patient from
pub-
lic policies and institutions potentially harmful to the
individual’s
values or goals. The prime consideration must be the welfare
and
desires of the patient, not of social policy or institutions.
Another macro-issue is the allocation of scarce resources.
Using a ‘‘utilitarian’’ approach, we would make medical
decisions
to create the most good for the most people. Thus, one might

argue
that the resources necessary to keep someone alive for 15 years
in a
persistent vegetative state would be better allocated to provide
basic health care for others who have no health insurance or
can-
not get adequate health care. The expenditure of resources of
this
order and magnitude is not trivial. However, although
individual
cases may bring national attention to social inadequacies,
broader
societal issues such as allocation of scarce resources are better
handled on a macro scale of policy-making. The preponderance
of weight in individual medical ethical decisions must be
directed
to considerations of what is best for the individual patient.
If contextual factors (perceived harm to the relatives of one
side or the other; religious beliefs; political, economic, and
legal
desires) were overwhelming, they might tilt our judgment. Such
not being the case, however, the ethical decision must rest
firmly
on assessment of what was best for the patient. In the end, in

Terri’s case all these contextual factors are minimal or are sub-
sumed under the ethical considerations of beneficence and the
patient’s preference.
Comment and Conclusions
By applying the classic elements of medical ethics, we find that
it
was ethically permissible and appropriate to stop Terri
Schiavo’s
treatment by use of a feeding tube. After 15 years with no sign
of
improvement, it is unreasonable to conclude that continued tube
feeding would have led to clinical improvement. When the out-
come is uncertain we should err on the side of maintaining life.
But a helpful ethical maxim is that it is better to stop a
treatment that
was tried and did not work than to not start a treatment that has
an
uncertain outcome. This maxim was definitely followed in this
case!
The ramifications of the case are numerous if not legion by
now and deserve the attention of all Americans. We believe the
case’s most important lesson is the need for advance directives.

The immense hostility and divisiveness engendered,
individually
and nationally, may be even more likely to recur in a future case
of a patient in similar circumstances. The case has caused an
unnecessary social divide.
In future cases involving care of patients in persistent
vegetative
states, violent disagreements as in the Schiavo case may be
avoided
by a full and early application of the principles of medical
ethics.
Just as importantly, the public needs to be informed of this
approach to ethically difficult medical decisions, and the media
should make use of it in their reporting. In our opinion, the
inor-
dinate and sensationalist media attention to the Schiavo case,
with
the marked emotional reactions of so many individuals and
groups, detracted greatly from an understanding of the ethical
principles that should have been applied to a determination of

what was best for Terri.
The medical ethics approach is not intended as an all-encom-
passing set of rules for clinical decision-making. In a rare
public
reference to bioethics, a syndicated columnist said the
discipline
had become a secular tool and blamed ‘‘left-leaning bioethics’’
for justifying the ‘‘killing’’ of people such as Terri Schiavo
(Leo,
2005). We acknowledge the secular basis of medical ethics as
necessary to establish guidelines for all physicians without
imposing specific religious or spiritual beliefs on those who do
not share them. How physicians and others superimpose their
religious or spiritual beliefs on medical ethics is a matter of
indi-
vidual values and goals. One may supplement medical ethics
with personal principled beliefs, but we urge all to understand
that in medical ethics ‘‘one size does not fit all.’’ There must be
room to apply the principles of medical ethics within diverse
sub-cultures.
Part of the problem, we believe, has been a misplaced focus
on ‘‘pulling the feeding tube,’’ rather than on the basic ethical
question of the treatment Terri was receiving. By focusing only

on the final act of withdrawing food and fluids, with its
attendant
symbolism to some of ‘‘killing,’’ one cannot understand the
patient’s medical condition, the role of prior medical decisions,
and the need for medical ethics in reaching a decision.
Fundamental to an understanding of dying patients is the
nature of earlier decisions, particularly treatments. Any life-
extend-
ing treatment decision is a choice to defer dying to a later date
and,
most likely, under different conditions. Continued provision of
artificial nutrition and hydration to Terri would not have
fulfilled
the ethical goals of medical treatment—it could have only
postponed,
not prevented death.
Dyinghasbeenpostponedbyhumanchoicewhenweartificially
feed or breathe for a patient. The treatment is the key ethical
issue,

as without it the patient dies; however, with continuous
treatment
there is a continuous deferral of dying to a later date. The
problem
with continuing treatment after the prognosis is clear is exactly
what happened to Terri. Once natural death is overcome medi-
cally, and there is no medical reason to expect recovery,
someone
must make the decision about how and when to allow death to
pro-
ceed.
The issue is not ‘‘killing,’’ or depriving a disabled person of
life,
but when to stop an unsuccessful treatment in order to allow
death
that has been unnaturally postponed. Medically, it seems
reasonable
to continue treatment for up to a year after a patient is
diagnosed as
being in a persistent vegetative state, although many
neurologists
might argue it is futile to treat after six months, or even less.
But after
the long-term outlook is clear, the choice is whether to allow a

patient to die, as would have been Terri’s choice based on the
best
evidence, or to wait and let her die years later, as her parents
wished.
Either way it is a human decision someone had to make.
Most Americans still die in institutions such as hospitals and
nursing homes where decisions are made whether to resuscitate,
to treat life-threatening complications, to try more curative
ther-
apy, or to withdraw life-sustaining treatments (Faber-
Langendoen
& Lanken, 2000; Field & Cassel, 1997). When patients are at
the
end of life and not capable of making medical decisions, loved
ones often make decisions to stop treatments and let them die
instead of extending ‘‘life’’ to the limits of modern technology.
This
is not killing, it is allowing death to proceed rather than
extending
the dying process. After life is first prolonged by medical
manage-
ment, it is allowed to end sometime later. It was the same for
Terri
Schiavo, and it is ethically correct.

References
Cruzan v. Director. Missouri Department of Health, 476 U.S.
261 (1990).
Faber-Langendoen, K. & Lanken, P. N. (2000). Dying patients
in the intensive
care unit: Forgoing treatment, maintaining care. Annals of
Internal Medicine,
133, 886–893.
Field, M. J. & Cassel, C. K. (Eds.). (1997). Approaching death:
Improving care at the
end of life. Washington, DC: National Academy Press.
Health Care Advance Directives, Definitions. (2004). Fla. Stat.
Title XLIV, Chap-
ter 765.101.
Jonsen, A. R., Siegler, M., & Winslade, W. J. (1992). Clinical

ethics (3rd ed.).
New York: McGraw Hill.
Jonsen, A. R., Siegler, M., & Winslade, W. J. (2002). Clinical
ethics (5th ed.).
New York: McGraw Hill.
Leo, J. (March 29, 2005). Left-leaning bioethics at core of the
Schiavo debate.
Seattle Times, p. B7.
Multi-Society Task Force on PVS. (1994). Medical aspects of
the persistent
vegetative state—second of two parts. New England Journal of
Medicine, 330,
1572–1579.
Pope John Paul II. (2004, March 20). Address of John Paul II to
the participants in
the International Congress on ‘‘Life-Sustaining Treatments and
Vegetation State:
Scientific Advances and Ethical Dilemmas.’’ Retrieved
September 9, 2005 from
http://www.vatican.va/holy_father/john/paul_ii/speeches/2004/
march/

documents/hf_jp-ii_spe_20040320_congress-fiamc_en.html.
President’s Commission for the Study of Ethical Problems in
Medicine and
Biomedical and Behavioral Research. (1983). Deciding to forgo
life-sustaining
treatment: A report on the ethical, medical, and legal issues in
treatment decisions.
Washington, DC: GPO (Government Printing Office).
WHAT WOULD TERRI WANT?
ON THE PSYCHOLOGICAL CHALLENGES
OF SURROGATE DECISION MAKING
PETER H. DITTO
University of California, Irvine, California, USA

The Terri Schiavo case was unique in the media attention it
garnered, but the
decision making challenges faced by Terri’s family are common
ones encountered
by all families who must make choices about the use of life-
sustaining medical
treatment for an incapacitated loved one. This article highlights
three key issues
that were particularly problematic in the Schiavo case, but that
represent general
psychological challenges inherent to the task of surrogate
decision making. The 3
central points of uncertainty, and therefore conflict, in the
Schiavo case concerned:
(a) the appropriate standard by which medical decisions for
Terri should be
made, (b) the specific nature of Terri’s wishes about the use of
life-sustaining
medical technology, and (c) the true extent of disability and
prognosis for recovery
represented by Terri’s medical condition. No simple remedy is
possible that will
resolve all of the uncertainties inherent to surrogate decision
making, but some

general strategies for improving the quality of end-of-life
medical decisions are
discussed.
The tragic final chapter of Terri Schiavo’s life story was unique
in
many ways. Even in an era saturated with celebrity trials and
confessional television talk shows, seldom has such an
exquisitely
personal decision been elevated to the level of full-blown, 21st-
century style public spectacle. Discussions normally held in
rever-
ent tones within the dimly lit corridors of hospitals and hospices
were magnified by a 24-hour news cycle and an ongoing culture
war into a national conversation. The situation seemed uniquely
cursed with every difficulty that might befall a family striving
to
make the right decisions for an incapacitated loved one.
Irreconcil-
able differences between family members about the appropriate
course of action, the lack of any written documentation of
Terri’s
Address correspondence to Peter H. Ditto, Department of
Psychology and Social

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