Power Point Slides

Applying Ethical Decision-
Making in Speech-Language
Pathology
Helen Sharp, Ph.D., CCC-SLP
LinguiSystems, Inc. funded this presentation,

“Applying Ethical Decision-Making in Speech-Language
Pathology,” in its entirety.
About the Author
Helen Sharp, Ph.D., CCC-SLP, earned a bachelor of science

in human kinetics at the University of Guelph in Ontario. She
completed her masters in speech pathology at the University
of Pittsburgh with a primary interest in cleft lip and palate.
She worked at Loma Linda University Medical Center in
southern California and became interested in biomedical
ethics. She pursued this interest by attending a fellowship
program in clinical medical ethics at the University of Chicago.
Helen then completed her Ph.D. in speech and hearing
science at the University of Iowa. She is currently associate
professor at Western Michigan University in Kalamazoo,
Michigan where she teaches ethics and counseling, cleft
palate, and introduction to communication sciences and
disorders.
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About the Author, continued
Helen’s research interests blend her clinical experience in

cleft palate, head and neck cancer, acute care, and pediatric
rehabilitation with her training in bioethics. She is interested
in how patients (clients) define quality of life and how
patients and clinicians approach the process of shared
decision-making, for example, related to tube feeding
decisions for patients with dysphagia.
Helen has published research, scholarly articles, and book

chapters together with national and international
presentations related to the application of bioethics to the
field of speech-language pathology.
Course Description
 Speech-language pathologists involved

in any aspect of patient care face
increasingly complex demands including the
appropriate application of new technologies
to patient care and clinical research,
increasing awareness of patients’ rights and
freedoms to make decisions about their own
care, and limits on resources available in
healthcare and education settings.
Course Description, continued
 Contemporary practice requires that

professionals balance their clinical
expertise with individual patient and
caregiver preferences in order to deliver
information appropriately for shared
decision-making, to achieve informed
consent, and reach acceptable
outcomes for all parties.
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 Clinicians are expected to function as an

integral part of a team in all practice
settings and must be able to identify
underlying sources of moral discomfort
and work toward achieving optimal
resolutions through problem solving.
 This course will introduce the core

concepts and principles of biomedical
ethics and apply these to the practice of
speech-language pathology. The course
also includes a variety of case examples
for group discussion.
Learning Outcomes
 At the end of this course participants

will be able to:
 Discuss an approach to resolving ethical
questions in practice with a focus on the
concept of shared decision-making.
 Define and describe the core principles
of bioethics that define and guide clinical
practice in any health-related profession
and key concepts of informed consent,
informed refusal, clinical decision-making
capacity, and legal competence.
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Learning Outcomes, continued
 Describe how these principles and issues

apply to the practice of speech-language
pathology and the role of the speech-
language pathologist as a member of the
decision-making team, particularly for
individuals with communication disorders.
 Discuss approaches to decision-making
when the individual lacks decision-making
capacity including the application and
limitations of advance directives and
decision-making for children.
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Learning Outcomes, continued
 Identify values and beliefs, particularly

related to disability, which might influence
families’ decision-making as well as
clinicians’ approaches to those we serve.
 Be aware of resources in the literature to aid
and support decision-making in practice.
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Overview & Goals
 present an approach to resolving ethical

questions in practice
 highlight the role of patient preferences
in a model of shared decision making
 define the legal and ethical concepts of
informed consent, informed refusal,
decision-making capacity, and
competence
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Overview & Goals, continued
 discuss approaches to decision-making

when the individual lacks decision-
making capacity including the application
and limitations of advanced directives
 identify differences in decision-making
approach for children
 apply the model to cases in the
participants’ practice
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Quick Overview of Terminology
 Morals
 Ethics
 Values
 Law
 Professionalism
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What is Ethics
 the science (philosophy) of balancing

values (or principles)
 values are attributes that are considered
to be desirable or worthwhile
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Law and Ethics
 I am an ethical person—all I really need

to know is what the law says, so I don’t
violate the law.
 If you could just tell me what’s legal—I’ll
be able to get on and be an outstanding
clinician.
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What is Law
 Rules of conduct derived from cultural or

community standards of moral or ethical
behavior.
 Law (rules) often set a standard for
minimally acceptable practice, not
necessarily the “best” approach.
 Bioethics also relies on case law by
inferring how the courts are likely to think
about a similar issue.
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Laws Can Be Changed . . .
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Ethics ≠ Law
 ethics and law are linked

 law informs ethics
 ethics informs law
 ethics ≠ law
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Ethics ≠ Law, continued
+ Legal? -
++ -+
Legal and ethical Not legal,
+
but ethical
Ethical?
+- --
Legal, but unethical Illegal and unethical
-
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What is Professionalism
 “ . . . the competence, or the correct

demeanor of those who are highly
trained and disciplined” (Chambers 20th
Century Dictionary, 1987).
 Expected attributes and behaviors
associated with a given profession.
 Expectations stem from within the
profession, from other professions, and
from the public.
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What is Professionalism, continued
Please pause the DVD and

answer the following questions:
 What are the attributes (qualities, traits)
associated with speech-language
pathologists?
 What defines someone as a good
speech-language pathologist?
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What is Professionalism, continued
 The qualities you identify are those that

the public expects of a speech-language
pathologist.
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Ethics
 Professional ethics
 Standards or rules of professional behavior
that are set out by that profession
 Often detailed in a Code of Ethics or Code of
Conduct (e.g., American Speech-Language-
Hearing Association (ASHA) Code of Ethics)
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Ethics, continued
 Clinical ethics
 the identification, analysis, and resolution of
moral problems related to a particular
patient’s care (Jonsen, Siegler, & Winslade,
2010)
25
Can Ethics Be Taught
 Focus of bioethics education is not on

teaching new values, morals, or ethics,
but rather on introducing systematic
methods for reasoning through ethical
dilemmas.
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Clinical Ethical Decision-Making
 Clinical decisions Can we?

 Ethical decisions Should we?
(Siegler, 1982)
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Core Principles of Bioethics
 Autonomy
 the patient’s right to self-determination
 Beneficence
 clinician’s duty to benefit the patient
 Non-maleficence
 clinician’s duty to “do no harm”
 Justice
 the fair and equal treatment of patients
(Beauchamp & Childress, 2008)
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Ethical Issues
 are informed by the principles of

bioethics
 often two or more principles in conflict
 for example, a decision to breach
confidentiality in order to protect the
patient
 thus, in that instance, beneficence is
found to outweigh patient autonomy
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Ethical Issues, continued
 the principles help to define the issues

 in clinical cases details of the story
influence the decision
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Ethical Issues, continued
 Models of ethical decision-making in

clinical situations account for multiple
factors including:
 evidence-base
 prognosis
 patient perspective
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Clinical Ethics
 At the core of clinical practice is the

clinician-patient relationship
 based on trust
 clinicians have a fiduciary duty to uphold that
trust
 Jonsen, Siegler, & Winslade (2010)
model is based on the clinician-patient
relationship
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(Adapted from Jonsen, Siegler, & Winslade, 2010)
Clinical Indications Patient Preferences

- history - personal history and values
- diagnosis - self-assessed quality of life
- prognosis - expressed preferences
- treatment options - ability to make decisions
External Assessment Contextual Features

of Quality of Life - economic (e.g., insurance, cost)
- external assessment - family preferences
of benefits v. burdens - policy/law/standard of care
- who should decide - team dynamics
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Clinical Decision-Making
 Optimally occurs between clinician

(clinical indications) and patient
preference
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Clinical Indications
 Clinician’s responsibilities:
 knowledge and skills in diagnostics
and treatment planning
 knowledge of evidence-base
• continuing education
• engaged, critical review of the literature
35
Clinical Indications, continued
 Clinician’s responsibilities, continued

 truth-telling and breaking bad news
• excellent communication and counseling skills
• establish what the patient/family already suspect
• convey sincere concern
• be truthful
• sit down
• turn off all phones and pagers
• avoid decision-making at the time bad news is
delivered
(Girgis & Sanson-Fisher, 1995)
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Clinical Indications, continued
 Clinician’s responsibilities, continued

 confidentiality
• clinician’s duty to protect information obtained
through clinical relationship
• ethical ideal that pre-dates the Hippocratic Oath
• may be breached in order to protect the patient’s
welfare
37
Patient Preference—Shared
Decision-Making
 Clinician proposes treatment plan to
the patient
 Patient asks questions, deliberates
 Clinician and patient decide together
 shift away from paternalism
 Patient gives consent to treatment
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Consent
 In 1914, Supreme Court Justice

Benjamin Cardozo wrote:
 “Every human being of adult years and
sound mind has a right to determine what
shall be done with his own body; and a
surgeon who performs an operation without
his patient’s consent commits an assault for
which he is liable in damages. This is true
except in cases of emergency . . . .”
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Patient Preference—Consent
 Consent = agreement
 Informed consent
 a patient’s voluntary authorization of a
procedure based on his/her understanding of
the relevant information
 Based on the principle of autonomy
 Promotes the clinician-patient relationship
 Legal implications/climate
(Berg, Appelbaum, Lidz, Parker, 2001; Muto, 1994)
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Patient Preference—Degrees of
Informed Consent
 FULL = verbal explanation + written
agreement
 VERBAL = verbal explanation +
agreement
 MINIMAL = some explanation + absence
of refusal (also called
assent)
(Bernat, 2001)
41
Patient Preference—Degrees of
Informed Consent, continued
 Consent is a process met through
discussion, not a signature on a piece of
paper.
 Have you ever signed an agreement
form that you did not read?
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Exceptions
 Exceptions to shared decision-making

and informed consent requirement
 emergency situation where patient lacks
decision-making capacity (DMC) and is in
imminent danger
 patient voluntarily foregoes decision-making
authority
 informed consent may be waived if the risks
are commonly known
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Patient Preference—Informed
Refusal
 If we accept a patient’s right to give
consent, we must also accept a patient’s
right to refuse
 A refusal often raises questions for
clinicians about whether the patient
really understood the proposed
treatment
44
Patient Preference—Competence
 Legal term
 refers to global capacity to manage one’s
affairs
 adults are presumed to be competent unless
a court has declared otherwise
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Patient Preference—Decision-
Making Capacity (DMC)
 Clinical term
 requires:
• ability to understand information presented
• understand the consequences of the options
available
• ability to express a preference
• evidence of reasoning
(Appelbaum & Grisso, 1988)
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Patient Preference—DMC, continued
 Task specific
 patient may have DMC for one decision, but
lack it for another
 Sliding Scale
 criteria vary with weight of the decision
(Appelbaum & Grisso, 1988)
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Competence versus Decision-

Making Capacity
Competent
+ (legal) -
++ -+
+ most adults e.g., adolescent
≥ 14 years of age
DMC
(clinical) +- --
adult lacks DMC e.g., adult with guardian
(e.g., sedated) and significant cognitive
- impairment
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Putting the Concepts into
Practice: A Case Example
 Mr. D
 58-year-old male transferred to rehabilitation
five days post a cerebellar stroke
 swallowing evaluated in acute care setting
and patient placed on modified diet: soft
foods, thick liquids, no straws
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Practice: A Case Example, continued
 Speech-language pathologist (SLP)
consulted to evaluate Mr. D’s speech
for dysarthria
 SLP notes choking and coughing as
Mr. D finished his lunch
 requests a consult for swallowing
assessment
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 Bedside clinical assessment consistent
with aspiration
 Videofluoroscopic evaluation shows
evidence of aspiration on all food
consistencies with and without
modifications
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 SLP recommends “NPO”—nothing by
mouth, except during therapy sessions
 Team recommendation for nasogastric
tube (NG) follows and Mr. D refuses the
NG tube
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 What is the main problem the health
care team needs to resolve in this case?
53
Definitions
 Withholding
 never starting a treatment
 Withdrawing
 stopping a treatment
 Time Limited Trial
 setting a time-frame for a trial of treatment
with a plan to stop if the patient shows no
improvement or the condition worsens
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Applying the Model—Clinical
Indications
 What are the clinical facts of the case
 patient’s diagnosis
 patient’s prognosis
 treatment options available
 evidence-based outcomes associated with
each option
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Clinical Indications—Evidence
Base
 Evidence base on outcomes of tube
feeding
 effective in prolonging life post-stroke, head
and neck cancer, spinal cord injury, ALS
 does not appear to extend survival, improve
nutritional markers, or enhance quality of life
for patients with advanced dementia when
compared to careful hand-feeding (Finucane,
Christmas, & Travis, 1999; Mitchell, Teno,
Roy, Kabumoto, & Mor, 2003)
56
Clinical Indications—Evidence
Base, continued
 Other effects of tube feeding:
 aspiration pneumonia in 10-50% of patients
 discomfort
 use of restraints
 loss of social role
 loss of pleasure associated with eating
 30 day mortality 9-24% (varies with
diagnosis)
(Hoffer, 2006; Meier, Ahronheim, Morris, Baskin-
Lyons, & Morrison 2001; Post, 2001; Saunders, 2000)
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Applying the Model—Patient’s

Preference
 What do we know about Mr. D?
 Why might he express this preference?
 How do we find out?
 Under what circumstances can he
refuse?
 Are there circumstances under which
we could override his refusal?
59
Patient Preference—Actions
when a Patient Refuses
 Evaluate patient’s DMC
 Determine the patient’s goals and
reasons for refusal
 Re-evaluate your goals and reasons
for your plan
 Evaluate the need for patient cooperation
 If patient lacks DMC, identify surrogate
or proxy decision-maker
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Patient Preference—Options
when a Patient with DMC Refuses
 patient can withdraw
 modify plan according to patient’s wishes
 leave the door open for future treatment
61
Follow Up on Mr. D
 Mr. D was able to explain the findings on

the Modified Barium Swallow (MBS) study.
 He stated an understanding that this could
increase his risk of infection, choking, or death.
 His stated reason for refusal was, “I have
eaten for eight days since my stroke and
haven’t had a problem.”
 He stated a willingness to accept NG tube
feeding should complications arise.
62
Follow Up on Mr. D, continued
 Mr. D’s statements were evaluated and

it was concluded that he demonstrated
DMC for this decision.
 Mr. D essentially proposed a time-limited
trial for oral intake.
 Recommendation for modified oral diet
with supervision and monitoring for early
signs of airway or pulmonary
complications was made.
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Role for the SLP
 Participate in recommendations for

safest possible oral intake
 Continue to work with Mr. D on safe
swallowing strategies as well as
communication goals
 Continue patient education
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What are the Alternatives
 Mr. D was forced to accept a tube with a

threat of discharge without rehabilitation
 NG tube was placed over his objection
 He removed the tube himself
 An NG tube was placed repeatedly
 Return to the core principles of bioethics
 What are the problems of this approach?
65
Mr. D—Summary
 Patients may decide differently from their

clinicians.
 Patients with DMC are granted the right to
make clinical decisions for themselves.
 Patients cannot be coerced into
agreement.
 Treating a patient without permission
(informed consent) is considered battery.
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What if Patient Lacks DMC
 Autonomy requires that the patient

have the capacity for informed consent
or refusal, so if the patient lacks DMC
a refusal is not necessarily honored
because it is not informed.
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What if Patient Lacks DMC continued
 Identify appropriate surrogate (or proxy)

decision-maker
 patient may formally identify this person as
their Durable Power of Attorney for Health
Care (DPAHC)
 often defaults to immediate family
68
Advance Care Planning—Overall

Plan for End-of-Life Care
 Intended to capture patient preference
after the patient loses DMC
 May include:
 do not resuscitate (DNR)/Do not intubate
(DNI) physician orders
 funeral arrangements
 last Will
 advance directives
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Living Will
 Preference for medical treatment in the

event that the individual cannot
participate in decision-making
 Most limited to permanent
unconsciousness or terminal or
irreversible illness
 More limited to treatments not wanted
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Limitations of the Living Will
 Difficult to anticipate the circumstances

 Difficult to interpret what the person
meant
 Can be out of date
(Fagerlin, 2004)
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Limitations of the Living Will, continued
 Know that people change their minds

 80% of people change at least one preference
over six months with no change in health
status (Kohut, Sam, O’Rourke, MacFadden,
Salit, & Singer, 1997)
 new onset disabilities change people’s
perspectives (Schwartz, Andresen, Nosek,
Krahn, & Oregon Health & Science University
Rehabilitation Research & Training Center
Expert Panel on Health Status, 2007)
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Role of Durable Power of Attorney
for Health Care (DPAHC)
 Ideal—surrogate uses “substituted
judgment”
 what the patient would want
 Less optimal, but sometimes
necessary—Best Interest Standard
(Elliott & Elliott, 1991)
73
Advantages of DPAHC
 Person who can make “on-line”

decisions
 Person who can represent the patient’s
preferences, values, and beliefs
 Does not limit decisions to terminal,
irreversible illness, or permanent
unconsciousness
 Can be temporary
74
Limitations of DPAHC
 Studies of “patient-proxy” pairs show

about chance levels of agreement (e.g.,
Sachs, Stocking, Stern, Cox, & Sparage-
Sachs, 2007)
 Clinicians and caregivers routinely
underestimate patients’ quality of life
(e.g., Uhlmann, Pearlman, & Cain, 1988;
Gerhart, Kozoil-McLain, Lowenstein, &
Whiteneck, 1994)
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Limitations of DPAHC, continued
 Questions about whether a proxy can

separate their own values (Elliott &
Elliott, 1991)
 Patient perspective should be
determined as often as possible
76
Surrogate Selection in the

Absence of a DPAHC
1. Legal guardian
2. Spouse
3. Adult child
4. Parent
5. Adult sibling
6. Adult grandchild
7. Close friend
8. Guardian of the estate
(Illinois Public Act §92-0364, 1991)
77
Public Health and Autonomy
 Autonomy guides much of Western

medical practice as long as the patient
has the capacity (DMC) to make a fully
informed decision.
 Threats to the public’s health are an
exception.
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External Assessments of Quality

of Life
 Clinicians and caregivers routinely
underestimate patients’ quality of life
(e.g., Gerhart et al.1994)
 Patient perspective should be
determined as often as possible
 Others should use a standard of
“substituted judgment” when possible
80
External Assessments of Quality

of Life, continued
 Quality of life (QL) estimates after
spinal cord injury (SCI)
QL average or Glad to be alive
better
ER Staff 17% 18%
Individuals with 86% 92%

SCI
(Gerhart et al. 1994)
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Decision-Making for Individuals
Who Lack DMC
 Where possible estimate what the
person would want (substituted
judgment)
 If patient preference is unknowable,
then the Best Interest Standard is used
82
Decision-Making for/with Children
 Parents are de facto decision-makers

 Decisions shared between practitioner
and parents, usually “best interest”
 Increase interest in including the child in
decision-making
 Assent (informal agreement) should be
obtained from the child when possible
(American Academy of Pediatrics (AAP)
Committee on Bioethics, 1995)
83
Assent from Children
 AAP recommendations
 age appropriate awareness of his/her
condition
 information about what to expect with
treatment
 assess patient understanding of the
situation, avoid coercion
 patient should agree to treatment
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When Children Refuse Treatment
 Consider an adolescent who does not

want therapy for dysfluency.
 What are your options?
 How does this differ from a younger child
who is unhappy coming to therapy?
85
Emancipated Minors
 State-specific legal term, treated as

adults for decision-making purposes
 Typical conditions that qualify teen for
full emancipation in some states
 self supporting and/or not living at home
 married
 pregnant or a parent
 in the military
 declared emancipated by a court
86
Mature Minor
 Partial-Temporary emancipation granted

(on state-by-state basis) under the
“Mature Minor Doctrine” for teens at
least 14-years-old
 Usually invoked for teens who seek
treatment for health risks, where parental
consent might preclude seeking care
(e.g., pregnancy, STD, alcohol/drug
abuse)
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Adapted from Jonsen, Siegler, & Winslade, 2010


88
Contextual Factors
 Ethical decision-making in an individual

case is not driven by insurance, policy,
law, team dynamics, caregiver
burden . . .
 Critical to recognize the importance of:
 solid clinical facts
 clarity about patient preference
89
Obligations to Patients
 Disclosure of treatment options

 Disclosure of financial incentives
 Avoid individual rationing
 Allow for preferences and values of
patients
 Allow room for variations within clinical
guidelines, policies, and procedures
90
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Does Team Care Differ
 Individual responsibility
 a clinician’s duty to provide care for a
patient and be a patient advocate
 Collective responsibility
 a team of professionals act as a moral agent
and take overall responsibility for the well-
being of the patient; each professional
retains individual responsibility
91
Team Care—Disagreements
 Disagreements are inevitable

 Key is to recognize the source of the
conflict
 Personality clash
 Inter-professional differences in view
 Differences in clinical management
philosophy
 True ethical or moral conflict
92
When You Encounter a True

Ethical Dilemma
 Identify the central issue
 Focus on the interests of the patient
 Consider the options and consequences
of each option for each stakeholder
 Communicate clearly with the patient and
involved parties
 Be systematic
 Consult with colleagues and/or third party
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The Difficult Clinician-Patient
Relationship
 Shouldn’t be confused with an ‘ethical
dilemma’
 Consider the relationship between you
and the patient, rather than blaming the
patient
 Talk directly to the patient about your
concerns
94
The Difficult Clinician-Patient

Relationship, continued
 Consider transferring the patient to a
colleague, especially if you no longer
hold the patient’s interests paramount
(Nisselle, 2000).
95
When You Encounter a True

Ethical Dilemma
 Be familiar with institutional resources
 ethics consultation service
• call the consultant to talk over your case
• ask for references and resources to help you and
your team
 ethics committee
• what are the institutional policy implications
• how have cases like this been handled
 risk management consultant
• keep in mind the role of risk management to protect
the institution
96
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Solutions
 Manage the case

 review the literature in speech-language
pathology and other health care disciplines
to justify a management approach
 hold a team-family conference to reach
agreement
97
Solutions, continued
 Learn from difficult cases

 self-reflection and understanding of one’s
own moral character and values (McCarthy
et al. 2008)
 Prevention
 use cases to develop preventive policies and
strategies
98
Putting the Model to Practice
 Think of a case that you have

encountered in your clinical practice.
99
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Putting the Model to Practice,
continued
 Share a brief version of the case with

your group
 Select one case to discuss
 starting with an adult case is helpful
100
Putting the Model to Practice–

Identify the Issue
 What are the ethical questions to be
addressed in this case?
 Hint—examples of ethical issues include
confidentiality, decision-making capacity,
identifying an appropriate surrogate—rather
than the four core principles.
 Hint—ethical issues can be framed as a
question, such as:
• Is it justifiable to breach confidentiality in this case?
• Is it justifiable to withhold treatment in this case?
101

Brainstorm Solutions
 Focus on the question you are going to
address.
 Do you have all of the information you
need?
102
34
Brainstorm Solutions, continued
 Generate a list of at least four options for
addressing the question/issue that you
identified.
 Be sure the options relate to the issue (and not
some other aspect of the case).
 You may have to step back to do this. For
example, very often the first question for an
adult needs to be, “Does the patient have
decision-making capacity?”
 Revise the main question as needed.
103

Justify a Solution
 Select one of your four options.
 Use the principles of bioethics, literature,
Codes of Ethics, and institutional policies
to support your solution.
 Address each of the solutions you
generated and discuss why you rejected
the alternatives, also using the
principles, literature, policy, and Code
of Ethics.
104

Prevention
 Focus on the ethical question that you
identified and discuss how the ethical
problem could have been prevented.
 What could your program or facility do
to prevent this issue from arising again?
 Is there a policy that you could put in
place?
105
35
Prevention, continued
 For example, in Mr. D’s case, we should
have discussed the possible outcomes of a
swallow study with him before the
instrumental assessment (informed
consent). This would have given us
information about his goals and preferences
before the study and a good idea about his
capacity.
106

Prevention, continued
 Other preventive strategies
 Pre-emptive consent to talk with a family
member on the phone at the time of initial
consult (confidentiality)
 Determining what the patient/family suspect
before breaking bad news
 Informed consent prior to assessment,
establish goals and concerns beforehand
107
Case Study
 Tackle another case from your group

 identify the issue/question to address
 identify other information needed, revise the
question
 brainstorm options to address the question
 select a solution and justify your position with
bioethical principles, literature, Code of
Ethics, etc.
 discuss how this issue/question might have
been prevented
108
36
Ethical Decision-Making in Speech
Language Pathology
Recommended Resources and References
109
General Reference Textbooks
Beauchamp, T. L., & Childress, J. F. (2008). Principles of biomedical ethics

(6th ed.). New York, NY: Oxford University Press.
Berg, J. W., Appelbaum, P. S., Lidz, C. W., & Parker, L. S. (2001). Informed
consent: Legal theory and clinical practice (2nd ed.). New York, NY:
Oxford University Press.
Fletcher, J. C., Lombardo P. A., & Spencer, E. M. (2005). Introduction to
clinical ethics (3rd ed.). Hagerstown, MD: University Publishing
Group.
Jonsen, A. R., Siegler, M., & Winslade, W. J. (2010). Clinical ethics (7th
ed.). New York, NY: McGraw-Hill.
Lo, B. (2009). Resolving ethical dilemmas: A guide for clinicians (4th ed.).
Baltimore, MD: Lippincott, Williams & Wilkins.
Purtilo, R., & Doherty, R. (2010). Ethical dimensions in the health
professions (5th ed.). Maryland Heights, MO: B. W. Saunders Co.
110
ASHA Resources
Code of Ethics. Available: http://www.asha.org/docs/html/ET2010-

00309.html
Ethics Roundtable. Case-based discussions. Available:
http://www.asha.org/practice/ethics/roundtable/
Issues in Ethics Statements. Available:
http://www.asha.org/practice/ethics/ethics_issues_index.htm
Sharp H. M., & Sullivan, P. (2008). FAQ 2. Use of alternative nutrition and
hydration (ANH) support for patients with dysphagia who are nearing
the end of life. ASHA Swallowing and Swallowing Disorders Special
Interest Division 13 Web-Based Educational Materials. Peer
reviewed. Retrieved from
http://www.asha.org/Forums/shwmessage.aspx?ForumID=9239&Mes
sageID=262965
Web-links from ASHA. http://www.asha.org/practice/ethics/web-ethics.htm
111
37
Journal Articles and Chapters
By Topic*
* This is by no means a comprehensive list, but includes key

articles and references used in constructing these course materials
and will provide key words and a starting place for more
comprehensive search of the literature in areas of interest for you.
112
Journal Articles & Chapters by

Topic
Confidentiality
Siegler, M. (1982). Confidentiality in medicine: A decrepit concept. New
England Journal of Medicine, 307, 1518-1521.
Ubel, P. A., Zell, M. M., Miller, D. J., Fischer, G. S., Peters-Stefani, D., &
Arnold, R. M. (1995). Elevator talk: Observational study of inappropriate
comments in a public space. American Journal of Medicine, 99, 190-
194.
Competence, Capacity, and Consent
Appelbaum, P. S., & Grisso, T. (1988). Assessing patients’ capacities to
consent to treatment. New England Journal of Medicine, 319, 1635-
1638.
Bernat, J. L. (2001). Informed consent. Muscle & Nerve, 24, 614-621.
Dysphagia and Tube Feeding
Finucane, T. E., Christmas, C., & Travis, K. (1999). Tube feeding in patients
with advanced dementia: A review of the evidence. Journal of the
American Medical Association, 282(14), 1365-1370.
113

Topic, continued
Dysphagia and Tube Feeding
Hoffer, L. J. (2006). Tube feeding in advanced dementia: The metabolic
perspective. British Medical Journal, 333, 1214-1215.
Meier, D. E., Ahronheim, J. C., Morris, J., Baskin-Lyons, S., & Morrison, S.
(2001). High short-term mortality in hospitalized patients with
advanced dementia. Archives Internal Medicine, 161, 594-599.
Mitchell, S. L., Teno, J. M., Roy, J., Kabumoto, G., & Mor, V. (2003). Clinical
and organization factors associated with feeding tube use among
nursing home residents with advanced cognitive impairments. Journal
of the American Medical Association, 290(1), 73-80.
Post, S. (2001, January-February). Tube feeding and advanced progressive
dementia. Hastings Center Report, 31(1), 36-42.
Sanders, D. S., Carter, M. J., D’Silva, J., James, G., Bolton, R. P., &
Bardhan, K. D. (2000). Survival analysis in percutaneous endoscopic
gastrostomy feeding: A worse outcome in patients with dementia.
American Journal of Gastroenterology, 95(6), 1472-1475.
114
38
Topic, continued
Dysphagia and Tube Feeding, continued
Sharp, H. M. (2006). Ethical issues in managing patients with dysphagia after
stroke. Topics in Stroke Rehabilitation Special Issue, 13(4), 18-25.
Sharp, H. M., & Brady Wagner L., (2007). Ethics, informed consent, and
decisions about non-oral feeding in patients with dysphagia. Topics in
Geriatric Rehabilitation, 23(3), 240-248.
Sharp, H. M., & Bryant, K. N. (2003). Ethical issues in dysphagia: When
patients refuse assessment or treatment. Seminars in Speech-Language
Pathology, 24(4), 285-299.
Sharp, H. M., & Genesen, L. B. (1996). Ethical decision-making in dysphagia
management. American Journal of Speech-Language Pathology, 5(1),
15-22.
Sharp, H. M., & Shega, J. W. (2009). Feeding tube placement in patients with
advanced dementia: The beliefs and practice patterns of speech-
language pathologists. American Journal of Speech-Language
Pathology, 18(3), 222-230.
115

Topic, continued
End-of-Life Care/Forgoing Life Sustaining Treatment/Advance Directives
Fagerlin, A. (2004, March-April). Enough: The failure of the living will. Hastings
Center Report, 34(2), 30-42.
McCann, R. M., Hall W. J., & Groth-Junker, A. (1994). Comfort care for
terminally ill patients: The appropriate use of nutrition and hydration.
Journal of American Medical Association (JAMA), 272(16), 1263-1266.
Pollens, R. (2004). Role of the speech-language pathologist in palliative hospice
care. Journal of Palliative Medicine, 7(5), 694-702.
Pollens, R., Hillenbrand, K., & Sharp, H. M. (2009). Dysphagia. In T. Declan
Walsh, A. T. Caraceni, R. Fainsinger, K. M. Foley, P. Glare, C. Goh, . . .
L. Radbruch (Eds.), Palliative Medicine (pp. 871-877). Philadelphia, PA:
Saunders.
Post, S. G. (2001, January-February). Tube feeding and advanced progressive
dementia. Hastings Center Report, 31(1), 36-42.
Sharp, H. M., & Payne, S. K. (1999). Caring for patients at the end of life. In P.
A. Sullivan, & A. M. Guilford (Eds.), Swallowing intervention in oncology
(pp. 329-342). San Diego, CA: Singular. 116

Topic, continued
End-of-Life Care, continued
Singer, P.A. (1993, October). The University of Toronto Centre for Bioethics
living will. Humane Medicine, 9(4), 263.
Quality of Life Assessment
Elliot, C., & Elliot, B. (1991). From the patient’s point of view: Medical ethics
and the moral imagination. Journal of Medical Ethics, 17, 173-178.
Gerhart, K. A., Kozoil-McLain, J., Lowenstein, S. R., & Whiteneck, G. G.
(1994). Quality of life following spinal cord injury: Knowledge and attitudes
of emergency care providers. Annals Emergency Medicine, 23(4), 807-812.
Kohut, N., Sam, M., O’Rourke, K., MacFadden, D. K., Salit, I., & Singer, P.A.
(1997). Stability of treatment preferences: Although most preferences do
not change, most people change at least some of their preferences.
Journal of Clinical Ethics, 8(2), 124-135.
117
39
Topic, continued
Quality of Life Assessment, continued
Sachs, G. A., Stocking, C. B., Stern, R., Cox, D. M., Hougham, G., &
Sparage-Sachs (1994). Ethical aspects of dementia research: Informed
consent and proxy consent. Clinical Research, 42(3) 403-412.
Schwartz, C. E., Andresen, E. M., Nosek, M. A., Krahn, G. L., & Oregon
Health & Science University Rehabilitation Research & Training Center
(2007). Response shift theory: Important implications for measuring
quality of life in people with disability. Archives of Physical Medicine and
Rehabilitation, 88(4) 529-536.
Uhlmann, R. F., Pearlman, R. A., & Cain, K. C. (1988). Physicians’ and
spouses’ predictions of elderly patients’ resuscitation preferences.
Journal of Gerontology, 43(5), M115-121.
Pediatrics
American Academy of Pediatrics (1995). Informed consent, parental
permission, and assent in pediatric practice. Pediatrics, 95(2), 314-317.
118

Topic, continued
Pediatrics, continued
Holder, A. R. (1983). Parents, courts, and refusal of treatment. Pediatrics,
103(4), 515-521.
Lantos, J. D. (1996). Should we always tell children the truth? Perspectives in
Biology and Medicine, 41(1), 78-92.
Lantos, J. D. (2001). Hooked on neonatology: A pediatrician wonders about
NICUs hidden cost of success. Health Affairs, 20(5), 233-240.
Larcher, V. (2005). ABC of adolescence: Consent, competence, and
confidentiality. British Medical Journal, 330, 353-356.
Team Care and Conflict in Clinical Care
Nisselle, P. (2000). Difficult doctor patient relationship. Australian Family
Physician, 29(1), 47-49
Sharp, H. M. (1995). Ethical decision-making in interdisciplinary team care.
Cleft Palate-Craniofacial Journal, 32(6), 495-499.
119

Topic, continued
Team Care, continued
Sharp, H. M. (2009). Ethical issues in cleft and craniofacial care. In K. T.
Moller, & L. E. Glaze (Eds.), Cleft lip and palate: Interdisciplinary issues
and treatment (2nd ed.) (pp. 55-73). Austin, TX: Pro-Ed.
Spielman, B. J. (1993). Conflict in medical ethics cases: Seeking patterns of
resolution. Journal of Clinical Ethics, 4(3), 212-218.
Truth-Telling and Breaking Bad News
Girgis, A., & Sanson-Fisher, W. (1995). Breaking bad news: Consensus
guidelines for medical practitioners. Journal of Clinical Oncology, 13, 2449-
2456.
Hobgood, C., Peck, C. R., Gilbert, B., Chappell, K., & Zou, B. (2002). Medical
errors–what and when: What do patients want to know? Academic
Emergency Medicine, 9, 1156-1161.
Johnson, R. L., Sadosty, A. T., Weaver, A. L., & Goyle, D. G. (2008). To sit or
not to sit? Annals of Emergency Medicine, 51(2), 188-193.
120
40
Topic, continued
Truth-Telling, continued
Stuart, M., & McGrew, J. H. (2009). Caregiver burden after receiving a
diagnosis of autism spectrum disorder. Research in Autism Spectrum
Disorders, 3(1), 86-97.
121
Personal Accounts of Disease and

Disability: Essays, Personal
Narratives, and Fiction Articles
122
Personal Accounts
George, L. (June 4, 2009). Channeling autism. Macleans. Retrieved from

http://www2.macleans.ca/2009/06/04/channelling-autism/
Muto, R. M. (1994). Acoustic neuroma case review: An audiologist’s self-
portrait. American Journal of Audiology, 3(1), 32-36.
Neher, J. O. (2004, March-April). Like a river (in practice). Hastings Center
Report, 34(2), 9-10
Peeno, L. (1998, March 9). What is the value of a voice? U.S. News and
World Report, 40-46.
Rosner, J. (2004, November-December). Lullabies for Sophia: Caring for a
deaf newborn (an essay). Hastings Center Report, 34(6), 20-21.
Weissman, M. M. (2000). Stigma. Journal of American Medical Association
(JAMA), 285(3), 261-262.
123
41
Podcasts and Other Resources
124
Podcasts & Other Resources
Podcasts–iTunes U
Bioethics 2.0 from the University of Pennsylvania School of Nursing.
Available from iTunes U. To find the podcasts go to “Power Search”
enter Title “Bioethics 2.0” and you will find a whole list of podcasts
(video and audio) that cover the core topics of bioethics. Although
designed for nursing students, these podcasts have broad application
and serve as an excellent overview of clinical ethics including
capacity, law and ethics, confidentiality, forgoing life sustaining
treatment, pediatrics, and informed consent.
Other Sources
Illinois Public Act §92-0364, 1991. Available
http://www.ilga.gov/legislation/publicacts/pubact92/acts/92-0364.html.
Accessed on 3/11/11/
Kirkpatrick, E. M. (Ed.). (1987). Chambers 20th century dictionary. Suffolk:
Chambers
125
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Applying Ethical Decision-

Helen Sharp, Ph.D., CCC-SLP

LinguiSystems, Inc. funded this presentation,

About the Author

Helen Sharp, Ph.D., CCC-SLP, earned a bachelor of science

Helen’s research interests blend her clinical experience in

Helen has published research, scholarly articles, and book

 Speech-language pathologists involved

Course Description, continued

 Contemporary practice requires that

 Clinicians are expected to function as an

Course Description, continued

 This course will introduce the core

 At the end of this course participants

 Describe how these principles and issues

Learning Outcomes, continued

 Identify values and beliefs, particularly

Overview & Goals

 present an approach to resolving ethical

 discuss approaches to decision-making

Quick Overview of Terminology

 the science (philosophy) of balancing

 I am an ethical person—all I really need

 Rules of conduct derived from cultural or

Laws Can Be Changed . . .

 ethics and law are linked

Ethics ≠ Law, continued

 “ . . . the competence, or the correct

Please pause the DVD and

What is Professionalism, continued

 The qualities you identify are those that

Can Ethics Be Taught

 Focus of bioethics education is not on

Clinical Ethical Decision-Making

 Clinical decisions Can we?

 are informed by the principles of

Ethical Issues, continued

 the principles help to define the issues

 Models of ethical decision-making in

 At the core of clinical practice is the

Clinical Ethical Decision-Making

Clinical Indications Patient Preferences

External Assessment Contextual Features

 Optimally occurs between clinician

Clinical Indications, continued

 Clinician’s responsibilities, continued

 Clinician’s responsibilities, continued

 In 1914, Supreme Court Justice

 Exceptions to shared decision-making

(Appelbaum & Grisso, 1988)

Patient Preference—DMC, continued

(Appelbaum & Grisso, 1988)

Competence versus Decision-

Putting the Concepts into

Putting the Concepts into

Putting the Concepts into

Clinical Indications Patient Preferences