This assignment will be submitted to Turnitin®.
Instructions
Assignment #4
IMPORTANT NOTE: There is written instructions and 2 VIDEOS that explain this assignment. See
above links for videos.
Videos for Final Project.

The final project for this course is an analysis of the legal and or ethical issues involved in the below health
care scenario. See questions to be answered at end of this factual scenario below. I have als o provided, after
the formatting requirements for the paper, two articles that will aid you in your analyzing the scenario and
writing your paper.
The two articles to base the analysis of your paper are entitled:
Clinical Ethics Issues and Discussion and
A Framework for Thinking Ethically
This is the final paper for the class and must be double spaced and be approximately 4-5 pages in 12 point
New Times Roman font. Include a cover page [not counted as a page] which should have student name and
title of your paper. See more formatting requirements later in these paper instructions.
NOTE: Use what you have learned from the discussion and course readings.
For this paper it is unnecessary to do any research beyond the two articles furnished with this assignmen t. No
legal case research is needed. The case is provided. Both speak to the specific paper requirements. You may
use all discussion and the articles in the class. To do internet research would only be wasting your valuable
time.
Case Scenario
A 75 year old woman was admitted to the Neurological Intensive Care Unit following a cerebral hemorrhage
which left her with severe brain damage and ventilator dependent. Six months before this event, the patient
and her husband had drawn up “living wills” with an attorney.
After the emergency assessment, she was diagnosed by her treating physician as being in a permanent
unconscious condition. The patient’s living will specified that the patient did not want ventilator support or
other artificial life support in the event of a permanent unconscious condition or terminal condition.
The patient’s husband is her legal next of kin and the person with surrogate decision -making authority. When
the living will was discussed with him, he insisted that the patient had not intended for the document to be
used in a situation like the present one. Further discussion with him revealed that he understood that the
patient would not be able to recover any meaningful brain function but he argued that the living will did not
apply because her condition was not imminently terminal. He further indicated that he did not consider his
wife to be in a permanent unconscious condition. The immediate family members (the couple’s adult
children) disagreed with their father’s refusal to withdraw life support.
The treatment team allowed 10 days to pass to allow the husband more time to be supported in his grief and to
appreciate the gravity of his wife’s situation. Nevertheless, at the end of this time, the husband was unwilling
to authorize withdrawal of life support measures consistent with the patient’s wishes as expressed in her living
will.
-End of scenario.You paper should have 3 major sections. Each is numbered 1, 2 and 3. Questions to be discussed based on the
facts above. You must weave into your discussion the relevant facts from above scenario to support your
discussion in discussion areas 2 and 3 below. And for discussion area 3 you must weave into your discussion
the ethics philosophy you pick for each issue from the article A Framework for Thinking Ethically. A penalty
will be deducted if you fail to use appropriate headings in your paper.
1. Three Legal/Ethical Issues. Just list the three most important legal/ethics issues in this scenario that you
will discuss. They must be three separate, different and distinct issues. Pay particular attention to the article I
furnished with this assignment. No explanation needed, just state them 1, 2, 3.
2. Discussion of Three Legal/Ethical Issues. Discuss the three most important ethical/legal issues you listed
above. Must use the relevant facts in the scenario to support your discussion of the legal/ethical issues.
Must use headings below. Headings will be:
Legal/Ethical Issue 1 [state the issue] then discussion
Legal/Ethical Issue 2 [state the issue] then discussion
Legal/Ethical Issue 3 [state the issue] then discussion
For each legal/ethical issue above discuss
a. Why each is a legal /ethical issue?
b. Discuss each issue in the context of the scenario facts and
c. Define the concepts you use
3. How I would Handle Each Issue. First, in this section and for each issue, as a health care provider, how
would you handle each of the three issues discussed above and why? Must use the relevant facts in the
scenario to support your positions. Secondly for each issue, using the article in these requirements, entitled “A
Framework of Thinking Ethically” fully discuss the specific ethics philosophy that would epitomize your
handling of each issue. Fully define the specific ethics philosophy used and weave the ethics philosophy into
your discussion. See article below entitled A Framework for Thinking Ethically.
Must use headings below. Headings will be:
Handling of Legal/Ethical Issue #1 (followed by the discussion)
Handling of Legal/Ethical Issue #2 (followed by the discussion)
Handling of Legal/Ethical Issue #3 (followed by the discussion)
[A penalty will be deducted if you fail to use appropriate headings in your paper. ]
This is an independent paper and you are on the honor system not to discuss or consult with any students or
other individuals about this paper. You may use the information we have discussed in the class, the articles in
the class, and the two articles I have furnished below. Just so you know, all you need to read to analyze the
questions for your paper are the two articles I have furnished with this assignment and information in the
class.
All you need to read to analyze the questions for this paper are the two articles below entitled:
Clinical Ethics Issues and Discussion & A Framework for Thinking Ethically
The paper must be:
Paper must be in narrative format not outline or bullets.
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Double spaced and be 4-5 pages in 12 point New Times Roman font. [No deduction if paper exceeds a
page or so. Thus 3 and half page paper will be penalized.]
Must cite to source of all your facts in the text of your paper in APA format.
You can cite directly to the original source. Here are the links to the sources wh ere the University
received copyright permissions for the materials:
Clinical Ethics and Law:http://depts.washington.edu/bioethx/topics/law.html
A Framework for Ethical Decision Making:https://www.scu.edu/ethics/ethics-resources/ethicaldecision-making/a-framework-for-ethical-decision-making/
Include a cover page [not counted as a page] which should have student name and title of your paper
[Provide a short name for the legal responsibility the specific health care organization has for one type
of patient right in a specific setting ]
A the end of the paper a list of references [not counted as a page]
Background articles to support the issues you will discuss in the paper.
Article One of Two
Clinical Ethics Issues and Discussion Article
Relationships: I. clinical ethics, law & risk management
1. Definitions and sources of authority
In the course of practicing medicine, a range of issues may arise that lead to consultation with a medical
ethicist, a lawyer, and/or a risk manager. The following discussion will outline key distinctions between these
roles.
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Clinical ethics may be defined as: a discipline or methodology for considering the ethical implications
of medical technologies, policies, and treatments, with special attention to determining what ought to
be done (or not done) in the delivery of health care.
Law may be defined as: established and enforceable social rules for conduct or non -conduct; a
violation of a legal standard may create criminal or civil liability.
Risk Management may be defined as: a method of reducing risk of liability through institutional
policies/practices.
Many health care facilities have in-house or on-call trained ethicists to assist health care practitioners,
caregivers and patients with difficult issues arising in medical care, and some facilities have formally
constituted institutional ethics committees. In the hospital setting, this ethics consultation or review process
dates back to at least 1992 with the formulation of accreditation requirements that mandated that hospitals
establish a “mechanism” to consider clinical ethics issues.
Ethics has been described as beginning where the law ends. The moral conscience is a precursor to the
development of legal rules for social order. Ethics and law thus share the goal of creating and maintaining
social good and have a symbiotic relationship as expressed in this quote:
[C]onscience is the guardian in the individual of the rules which the community has evolved for its own
preservation. William Somerset Maugham
The role of lawyers and risk managers are closely linked in many health care facilities. Indeed, in some
hospitals, the administrator with the title of Risk Manager is an attorney with a clinical background. There are,
however, important distinctions between law and risk management. Risk management is guided by legal
parameters but has a broader institution-specific mission to reduce liability risks. It is not uncommon for a
hospital policy to go beyond the minimum requirements set by a legal standard. When legal and risk
management issues arise in the delivery of health care, ethics issues may also exist. Similarly, an issue
originally identified as falling within the clinical ethics domain may also raise legal and risk management
concerns.
To better understand the significant overlap among these disciplines in the health care setting, consider the
sources of authority and expression for each.
Ethical norms may be derived from:
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Law
Institutional policies/practices
Policies of professional organizations
Professional standards of care, fiduciary obligations
Note: If a health care facility is also a religious facility, it may adhere to religious tenets. In general, however,
clinical ethics is predominantly a secular professional analytic approach to clinical issues and choices.
Law may be derived from:
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Federal and state constitutions (fundamental laws of a nation or state establishing the role of
government in relation to the governed)
Federal and state statutes (laws written or enacted by elected officials in legislative bodies, and in
some states, such as Washington and California, laws created by a majority of voters through an
initiative process)
Federal and state regulations (written by government agencies as permitted by statutory delegation,
having the force and effect of law consistent with the enabling legislation)
Federal and state case law (written published opinions of appellate-level courts regarding decisions in
individual lawsuits)
City or town ordinances, when relevant
Risk Management may be derived from law, professional standards and individual institution’s mission and
public relations strategies and is expressed through institutional policies and practices.
1. Conceptual Models
Another way to consider the relationship among the three disciplines is through conceptual models:
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Linear
Distinctions
Interconnectedness
Orientation to law for non-lawyers
Potential legal actions against health care providers
There are two primary types of potential civil actions against health care providers for injuries resulting from
health care: (1) lack of informed consent, and (2) violation of the standard of care. Medical treatment and
malpractice laws are specific to each state.
1. Informed Consent. Before a health care provider delivers care, ethical and legal standards require that
the patient provide informed consent. If the patient cannot provide informed consent, then, for most
treatments, a legally authorized surrogate decision-maker may do so. In an emergency situation when
the patient is not legally competent to give informed consent and no surrogate decision-maker is
readily available, the law implies consent on behalf of the patient, assuming that the patient would
consent to treatment if he or she were capable of doing so.
Information that must be conveyed to and consented to by the patient includes: the treatment’s nature and
character and anticipated results, alternative treatments (including non-treatment), and the potential risks and
benefits of treatment and alternatives. The information must be presented in a form that the patient can
comprehend (i.e., in a language and at a level which the patient can understand) and that the consent must be
voluntary given. An injured patient may bring an informed consent action against a provider who fails to
obtain the patient’s informed consent in accordance with state law.
From a clinical ethics perspective, informed consent is a communication process, and should not simply be
treated as a required form for the patient’s signature. Similarly, the legal concept of informed consent refers to
a state of mind, i.e., understanding the information provided to make an informed choice. Health care
facilities and providers use consent forms to document the communication process. From a provider’s
perspective, a signed consent form can be valuable evidence the communication occurred and legal protection
in defending against a patient’s claim of a lack of informed consent. Initiatives at the federal level (i.e., the
Affordable Care Act) and state level (e.g., Revised Code of Washington § 7.70.060) reflect approaches that
support shared decision-making and the use of patient decision aids in order to ensure the provision of
complete information for medical decision-making.
2. Failure to follow standard of care. A patient who is injured during medical treatment may also be able
to bring a successful claim against a health care provider if the patient can prove that the injury
resulted from the provider’s failure to follow the accepted standard of care. The duty of care generally
requires that the provider use reasonably expected knowledge and judgment in the treatment of the
patient, and typically would also require the adept use of the facilities at hand and options for
treatment. The standard of care emerges from a variety of sources, including professional
publications, interactions of professional leaders, presentations and exchanges at professional
meetings, and among networks of colleagues. Experts are hired by the litigating parties to assist the
court in determining the applicable standard of care.
Many states measure the provider’s actions against a national standard of care (rather than a local one) but
with accommodation for practice limitations, such as the reasonable availability of medical facilities, services,
equipment and the like. States may also apply different standards to specialists and to general practitioners. As
an example of a statutory description of the standard of care, Washington State currently specifies that a
health care provider must “exercise that degree of care, skill, and learning expected of a reasonably prudent
health care provider at that time in the profession or class to which he belongs, in the State of Washington,
acting in the same or similar circumstances.”
III.
Common clinical ethics issues: medical decision-making and provider-patient
communication
There are a number of common ethical issues that also implicate legal and risk management issues. Briefly
discussed below are common issues that concern medical decision-making and provider-patient
communication.
If a patient is capable of providing informed consent, then the patient’s choices about treatment, including
non-treatment, should be followed. This is an established and enforceable legal standard and also consistent
with the ethical principle of respecting the autonomy of the patient. The next two sections (Surrogate
decision-making; Advance directives) discuss how this principle is respected from a legal perspective if a
patient lacks capacity, temporarily or permanently, to make medical decisions. The third section briefly
introduces the issue of provider-patient communication, and highlights a contemporary dilemma raised in
decisions regarding the disclosure of medical error to patients.
1. Surrogate decision-making
The determination as to whether a patient has the capacity to provide informed consent is generally a
professional judgment made and documented by the treating health care provider. The provider can make a
determination of temporary or permanent incapacity, and that determination should be linked to a specific
decision. The legal term competency (or incompetency) may be used to describe a judicial determination of
decision-making capacity. The designation of a specific surrogate decision-maker may either be authorized by
court order or is specified in state statutes.
If a court has determined that a patient is incompetent, a health care provider must obtain informed consent
from the court-appointed decision-maker. For example, where a guardian has been appointed by the court in a
guardianship action, a health care provider would seek the informed consent of the guardian, provided that the
relevant court order covers personal or health care decision-making.
If, however, a physician determines that a patient lacks the capacity to provide informed consent, for example,
due to dementia or lack of consciousness, or because the patient is a minor and the minor is legally proscribed
from consenting, then a legally authorized surrogate decision-maker may be able to provide consent on the
patient’s behalf. Most states have specific laws that delineate, in order of priority, who can be a legally
authorized surrogate decision-maker for another person. While these laws may vary, they generally assume
that legal relatives are the most appropriate surrogate decision-makers. If, however, a patient has previously,
while capable of consenting, selected a person to act as her decision-maker and executed a legal document
known as a durable power of attorney for health care or health care proxy, then that designated individual
should provide informed consent.
In Washington State, a statute specifies the order of priority of authorized decision-makers as follows:
guardian, holder of durable power of attorney; spouse or state registered partner; adult children; parents; and
adult brothers and sisters. If the patient is a minor, other consent provisions may apply, such as: court
authorization for a person with whom the child is in out-of-home placement; the person(s) that the child’s
parent(s) have given a signed authorization to provide consent; or, a competent adult who represents that s/he
is a relative responsible for the child’s care and signs a sworn declaration stating so. Health care providers are
required to make reasonable efforts to locate a person in the highest possible category to provide informed
consent. If there are two or more persons in the same category, e.g., adult children, then the medical treatment
decision must be unanimous among those persons. A surrogate decision-maker is required to make the choice
she believes the patient would have wanted, which may not be the choice the decision-maker would have
chosen for herself in the same circumstance. This decision-making standard is known as substituted
judgment. If the surrogate is unable to ascertain what the patient would have wanted, then the surrogate may
consent to medical treatment or non-treatment based on what is in the patient’s best interest.
Laws on surrogate decision-making are slowly catching up with social changes. Non-married couples
(whether heterosexual or same sex) have not traditionally been recognized in state law as legally authorized
surrogate decision-makers. This lack of recognition has left providers in a difficult legal position, encouraging
them to defer to the decision-making of a distant relative over a spouse-equivalent unless the relative concurs.
Washington law, for example, now recognizes spouses and domestic partners regi stered with the state as
having the same priority status.
Parental decision-making and minor children. A parent may not be permitted in certain situations to consent
to non-treatment of his or her minor child, particularly where the decision would significantly impact and
perhaps result in death if the minor child did not receive treatment. Examples include parents who refuse
medical treatment on behalf of their minor children because of the parents’ social or religious views, such as
Jehovah’s Witnesses and Christian Scientists. The decision-making standard that generally applies to minor
patients in such cases is known as the best interest standard. The substituted judgment standard may not
apply because the minor patient never had decision-making capacity and therefore substituted judgment based
on the minor’s informed choices is not able to be determined. It is important to note that minors may have
greater authority to direct their own care depending on their age, maturity, nature of medical treatment or non treatment, and may have authority to consent to specific types of treatment. For example, in Washington
State, a minor may provide his or her own informed consent for treatment of mental health conditions,
sexually transmitted diseases, and birth control, among others. Depending on the specific facts, a health care
provider working with the provider’s institutional representatives could potentially legally provide treat ment
of a minor under implied consent for emergency with documentation of that determination, assume temporary
protective custody of the child under child neglect laws, or if the situation is non-urgent, the provider could
seek a court order to authorize treatment.
1.
Advance directives
The term advance directive refers to several different types of legal documents that may be used by a patient
while competent to record future wishes in the event the patient lacks decision-making capacity. The choice
and meaning of specific advance directive terminology is dependent on state law. Generally, a living
will expresses a person’s desires concerning medical treatment in the event of incapacity due to terminal
illness or permanent unconsciousness. A durable power of attorney for health care or health care
proxy appoints a legal decision- maker for health care decisions in the event of incapacity. An advance health
care directive or health care directive may combine the functions of a living will and durable power of
attorney for health care into one document in one state, but may be equivalent to a living will in another state.
The Physician Orders for Life Sustaining Treatment (POLST) form is a document that is signed by a physician
and patient which summarizes the patient’s wishes concerning medical treatment at the end of life, such as
resuscitation, antibiotics, other medical interventions and artificial feeding, and translates them i nto medical
orders that follow patients regardless of care setting. It is especially helpful in effectuating a patient’s wishes
outside the hospital setting, for example, in a nursing care facility or emergency medical response
context. This relatively new approach is available in about a dozen states, although the programs may operate
under different names: POST (Physician Orders for Scope of Treatment), MOST (Medical Orders for Scope
of Treatment), MOLST (Medical Orders for Life-Sustaining Treatment), and COLST (Clinician Orders for
Life-Sustaining Treatment). The simple one page treatment orders follow patients regardless of care setting.
Thus it differs from an advance directive because it is written up by the clinician in consultation with the
patient and is a portable, actionable medical order. The POLST form is intended to complement other forms
of advance directives. For example, Washington State recognizes the following types of advance directives:
the health care directive (living will), the durable power of attorney for health care, and the POLST form.
Washington also recognizes another legal document known as a mental health advance directive, which can
be prepared by individuals with mental illness who fluctuate between capacity and incapacity for use during
times when they are incapacitated.
State laws may also differ on the conditions that can be covered by an individual in an advance directive, the
procedural requirements to ensure that the document is effective (such as the number of require d witnesses)
and the conditions under which it can be implemented (such as invalidity during pregnancy).
Advance directives can be very helpful in choosing appropriate treatment based upon the patient’s expressed
wishes. There are situations, however, in which the advance directive’s veracity is questioned or in which a
legally authorized surrogate believes the advance directive does not apply to the particular care decision at
issue. Such conflicts implicate clinical ethics, law and risk management.
1. Provider-patient communications: disclosing medical error
Honest communication to patients by health care providers is an ethical imperative. Excellent communication
eliminates or reduces the likelihood of misunderstandings and conflict in the health care settin g, and also may
affect the likelihood that a patient will sue.
One of the more contentious issues that has arisen in the context of communication is whether providers
should disclose medical errors to patients, and if so, how and when to do so. Disclosure of medical error
creates a potential conflict among clinical ethics, law and risk management. Despite a professional ethical
commitment to honest communication, providers cite a fear of litigation as a reason for non -disclosure.
Specifically, the fear is that those statements will stimulate malpractice lawsuits or otherwise be used in
support of a claim against the provider. An increase in malpractice claims could then negatively affect the
provider’s claims history and malpractice insurance coverage.
There is some evidence in closed systems (one institution, one state with one malpractice insurer) that an
apology coupled with disclosure and prompt payment may decrease either the likelihood or amount of legal
claim. In addition, a number of state legislatures have recently acted to protect provider apologies, or
provider apologies coupled with disclosures, from being used by a patient as evidence of a provider’s liability
in any ensuing malpractice litigation. It is currently too early to know whether these legal protections will
have any impact on the size or frequency of medical malpractice claims. For this reason and others, it is
advisable to involve risk management and legal counsel in decision-making regarding error disclosure.
Article Two of Two
A Framework for Thinking Ethically Article
This document is designed as an introduction to thinking ethically. We all have an image of our better selves of how we are when we act ethically or are “at our best.” We probably also have an image of what an ethical
community, an ethical business, an ethical government, or an ethical society should be. Ethics really has to do
with all these levels-acting ethically as individuals, creating ethical organizations and governments, and
making our society as a whole ethical in the way it treats everyone.
What is Ethics?
Simply stated, ethics refers to standards of behavior that tell us how human beings ought to act in the many
situations in which they find themselves-as friends, parents, children, citizens, businesspeople, teachers,
professionals, and so on.
It is helpful to identify what ethics is NOT:
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• Ethics is not the same as feelings. Feelings provide important information for our ethical choices.
Some people have highly developed habits that make them feel bad when they do something wrong,
but many people feel good even though they are doing something wrong. And often our feelings will
tell us it is uncomfortable to do the right thing if it is hard.
• Ethics is not religion. Many people are not religious, but ethics applies to everyone. Most religions
do advocate high ethical standards but sometimes do not address all the types of problems we face.
• Ethics is not following the law. A good system of law does incorporate many ethical standards, but
law can deviate from what is ethical. Law can become ethically corrupt, as some totalitarian regimes
have made it. Law can be a function of power alone and designed to serve the interests of narrow
groups. Law may have a difficult time designing or enforcing standards in some important areas, and
may be slow to address new problems.
• Ethics is not following culturally accepted norms. Some cultures are quite ethical, but others become
corrupt -or blind to certain ethical concerns (as the United States was to slavery before the Civil War).
“When in Rome, do as the Romans do” is not a satisfactory ethical standard.
• Ethics is not science. Social and natural science can provide important data to help us make better
ethical choices. But science alone does not tell us what we ought to do. Science may provide an
explanation for what humans are like. But ethics provides reasons for how humans ought to act. And
just because something is scientifically or technologically possible, it may not be ethical to do it.
Why Identifying Ethical Standards is Hard
There are two fundamental problems in identifying the ethical standards we are to follow:
1. On what do we base our ethical standards?
2. How do those standards get applied to specific situations we face?
If our ethics are not based on feelings, religion, law, accepted social practice, or science, what are they based
on? Many philosophers and ethicists have helped us answer this critical question. They have suggested at least
five different sources of ethical standards we should use.
Five Sources of Ethical Standards
The Utilitarian Approach
Some ethicists emphasize that the ethical action is the one that provides the most good or does the least harm,
or, to put it another way, produces the greatest balance of good over harm. The ethical corporate action, then,
is the one that produces the greatest good and does the least harm for all who are affected -customers,
employees, shareholders, the community, and the environment. Ethical warfare balances the good achieved in
ending terrorism with the harm done to all parties through death, injuries, and destruction. The utilitarian
approach deals with consequences; it tries both to increase the good done and to reduce the harm done.
The Rights Approach
Other philosophers and ethicists suggest that the ethical action is the one that best protects and respects the
moral rights of those affected. This approach starts from the belief that humans have a dignity based on their
human nature per se or on their ability to choose freely what they do with their lives. On the basis of such
dignity, they have a right to be treated as ends and not merely as means to other ends. The list of moral rights
-including the rights to make one’s own choices about what kind of life to lead, to be told the truth, not to be
injured, to a degree of privacy, and so on-is widely debated; some now argue that non-humans have rights,
too. Also, it is often said that rights imply duties-in particular, the duty to respect others’ rights.
The Fairness or Justice Approach
Aristotle and other Greek philosophers have contributed the idea that all equals should be treated equally.
Today we use this idea to say that ethical actions treat all human beings equally -or if unequally, then fairly
based on some standard that is defensible. We pay people more based on their harde r work or the greater
amount that they contribute to an organization, and say that is fair. But there is a debate over CEO salaries
that are hundreds of times larger than the pay of others; many ask whether the huge disparity is based on a
defensible standard or whether it is the result of an imbalance of power and hence is unfair.
The Common Good Approach
The Greek philosophers have also contributed the notion that life in community is a good in itself and our
actions should contribute to that life. This approach suggests that the interlocking relationships of society are
the basis of ethical reasoning and that respect and compassion for all others -especially the vulnerable-are
requirements of such reasoning. This approach also calls attention to the common conditions that are
important to the welfare of everyone. This may be a system of laws, effective police and fire departments,
health care, a public educational system, or even public recreational areas.
The Virtue Approach
A very ancient approach to ethics is that ethical actions ought to be consistent with certain ideal virtues that
provide for the full development of our humanity. These virtues are dispositions and habits that enable us to
act according to the highest potential of our character and on behalf of values like truth and beauty. Honesty,
courage, compassion, generosity, tolerance, love, fidelity, integrity, fairness, self -control, and prudence are all
examples of virtues. Virtue ethics asks of any action, “What kind of person will I become if I do this?” or “Is
this action consistent with my acting at my best?”
Putting the Approaches Together
Each of the approaches helps us determine what standards of behavior can be considered ethical. There are
still problems to be solved, however.
The first problem is that we may not agree on the content of some of these specific approaches. We may not
all agree to the same set of human and civil rights.
We may not agree on what constitutes the common good. We may not even agree on what is a good and what
is a harm.
The second problem is that the different approaches may not all answer the question “What is ethical?” in the
same way. Nonetheless, each approach gives us important information with which to determine what is ethical
in a particular circumstance. And much more often than not, the different approaches do lead to similar
answers.
Making Decisions
Making good ethical decisions requires a trained sensitivity to ethical issues and a practiced method for
exploring the ethical aspects of a decision and weighing the considerations that should impact our choice of a
course of action. Having a method for ethical decision making is absolutely essential. When practiced
regularly, the method becomes so familiar that we work through it automatically without consulting the
specific steps.
The more novel and difficult the ethical choice we face, the more we need to rely on discussion and dialogue
with others about the dilemma. Only by careful exploration of the problem, aided by the insights and different
perspectives of others, can we make good ethical choices in such situations.
We have found the following framework for ethical decision making a useful method for exploring ethical
dilemmas and identifying ethical courses of action.
A Framework for Ethical Decision Making
Recognize an Ethical Issue
1. Could this decision or situation be damaging to someone or to some group? Does this decision involve
a choice between a good and bad alternative, or perhaps between two “goods” or between two “bads”?
2. Is this issue about more than what is legal or what is most efficient? If so, how?
Get the Facts
1. What are the relevant facts of the case? What facts are not known? Can I learn more about the
situation? Do I know enough to make a decision?
2. What individuals and groups have an important stake in the outcome? Are some concerns more
important? Why?
3. What are the options for acting? Have all the relevant persons and groups been consulted? Have I
identified creative options?
Evaluate Alternative Actions
1. Evaluate the options by asking the following questions:
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Which option will produce the most good and do the least harm? (The Utilitarian Approach)
Which option best respects the rights of all who have a stake? (The Rights Approach)
Which option treats people equally or proportionately? (The Justice Approach)
Which option best serves the community
as a whole, not just some members?
(The Common Good Approach)
Which option leads me to act as the sort of person I want to be? (The Virtue Approach)
Make a Decision and Test It
1. Considering all these approaches, which option best addresses the situation?
2. If I told someone I respect-or told a television audience-which option I have chosen, what would they
say?
Act and Reflect on the Outcome
1. How can my decision be implemented with the greatest care and attention to the concerns of all
stakeholders?
2. How did my decision turn out and what have I learned from this specific situation?
This framework for thinking ethically is the product of dialogue and debate at the Markkul a Center for
Applied Ethics at Santa Clara University. Primary contributors include Manuel Velasquez, Dennis Moberg,
Michael J. Meyer, Thomas Shanks, Margaret R. McLean, David DeCosse, Claire André, and Kirk O. Hanson.
It was last revised in May 2009. End of article.
Read:
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Current and Future Legal and Ethical Challenges.
Ethical challenges in the era of health care reform.
Lachman, V.D (2012, Jul/Aug). Ethical challenges in the era of health care
reform. MEDSURG Nursing, 21(4): 245, 248-50.
Ethical Challenges in the Era of Health Care Reform.
Shared Health Care Governance.
Clinical Ethics and Law Article at https://depts.washington.edu/bhdept/ethicsmedicine/bioethics-topics/detail/56
Patients As Consumer-Legal Rights & Provider Obligations
The theme of this week is patients as consumers. We examine legal rights and provider
obligations, including:
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Patient Self-Determination Act (1990)
Health Insurance Portability and Accountability Act of 1996 (HIPAA)
confidentiality and access to medical records
advance directives for health care
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end-of-life; do not resuscitate (DNR)
Emergency Medical Treatment and Active Labor Act (EMTALA) (1986)
patient’s consent to care
culturally and linguistically appropriate services (CLAS) standards in health and health
care
Under a patchwork of laws, regulations, and ethical obligations, health service organizations
have a responsibility to provide health services to patients. For example, the Joint Commission’s
standards on patient rights and responsibilities address a provider’s obligation to keep patients
informed and to effectively communicate with them. Patients have the right to participate in care
decisions; the right to know care providers; and the right to informed consent. One federal law
embraces these values: the Patient Self-Determination Act of 1990 (PSDA). The PSDA requires
that health care organizations that receive Medicare and Medicaid funding provide information
to patients about their right to accept or refuse life-sustaining treatments and their option to
complete advance directives. Autonomy, or self-determination, is an underlying principle and
obligation requiring that (1) patients participate in communications that allow for informational
exchanges, with medical advice, and (2) patients are able to elect interventions. Patient-informed
consent to care is a doctrine whereby the risks of the treatment, benefits of the treatment, and
treatment alternatives must be disclosed to and acknowledged by the patient. This doctrine is
based in case law, which is the legislative branch’s interpretation of codified laws. The body of
rulings from key court cases produces useful information on legal expectation and the
enforcement mechanisms in the law.
Patients also determine their own end-of-life decisions based on their values and belief systems
and not necessarily the provider’s code of ethics. As set forth in the PSDA, a patient’s wishes
can be communicated through advanced directives, a durable power of attorney for health care,
or a living will, as well as a do not resuscitate (DNR) order. These directives can be reduced to
writing or can be an oral statement; both are legally binding in most jurisdictions. Providers are
generally obligated to respect the patient’s wishes even when those wishes are counter to the
provider’s personal values, the standard of care, and, at times, hospital procedure. It is critical
that managers be aware of and provide operating guidance for health care organizations and
providers about patient’s rights and preferences, especially at life’s end.
Managers may be called in to mediate cultural, ethnic, and religious influences on patient and
provider decision making. Health organizations and providers who recognize individuals’
cultural beliefs, values, attitudes, traditions, and language preferences create a more inclusive
environment, a factor which may influence a patient’s perceptions and access to care. Further, a
patient’s degree of literacy can be a barrier when stating his or her preferences for care.
Managers must be knowledgeable of rules, regulations, and services to meet cultural and
linguistic needs. The federal culturally and linguistically appropriate services (CLAS) standards
in health and health care are intended to address barriers to optimal care for patients with
language needs. CLAS is intended to help eliminate health care disparities by establishing clear
expectations for health care organizations. Patient diversity in language, ethnicity, and literacy
levels all point to the importance of responsive health systems where people understand their
care.
The Health Insurance Portability and Accountability Act of 1989 (HIPAA) establishes a standard
for a patient’s confidential medical information and access to medical records, as well as
employee rights for health insurance. Waivers to HIPAA are common and a patient’s right to
privacy remains an ethical issue in many facilities (large and small). Those who care for patients
are legally obligated to protect health information. Here are two examples where HIPAA
protections would come into play:
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Employers cannot receive notes regarding an employee’s visits with a psychiatrist
without the patient’s/employee’s consent.
A pharmacy cannot “sell” the names of patients who purchase a certain drug for epilepsy
to the manufacturer of that drug or a competing pharmaceutical manufacturer.
Patient data at the psychiatrist’s office and in the pharmacy is confidential and HIPAA protected.
Perhaps one of the most wide-reaching health care laws is the 1986 Emergency Medical
Treatment and Labor Act (EMTALA), which requires hospitals to provide medical treatment for
any and all patients presenting with emergent health issues or in active child birth. Case law
supports EMTALA and demonstrates that failure to comply can result in civil judgments as well
as penalties for violation. Patients cannot be transferred or refused treatment if they present in an
emergent medical condition or are in active labor and the facility has an emergency room.
Organizations must ensure that employees are informed of this responsibility and that policies
and procedures are in place to reinforce the responsibility.
Patients have a bill of rights as stated in Federal and often, state law. Patient’s rights include
among other things, consent to care. Another important right is the self-determination of their
care through advanced directives and other choices such as designated advocate (AD). As
most of you know, everyone and every healthcare organization (HCO) who either cares or
provides services to patients are to keep information protected under penalty of law (HIPAA).
Patients also have rights to copies of their medical records. Translation for those who speak
other languages is also a right (CLAS). This week’s reading provides specific information
about the Patient’s Rights you are likely to encounter.
Select one Patient’s Rights (either ethical or legal issues of your choice) from readings this
week. Research and post to the discussion board the legal source of this right (Federal and
State Codes citations are warranted). The Military Health System also has a Bill of
Rights. Discuss how a Patient’s legal “Right” translates into the Health care organization’s
(HCO’s) responsibility for systems such as electronic health records, research participant
compensation, consultations, financial systems, and communication with collaborators? Are
there specific situations where HIPAA is not protected? Do you have an example from your
health care organization (HCO) setting? If so, please discuss. Please remember to analyze the
cases by so-and-so standards(e.g., see below Provide relevant details of the case as it relates to
the law, the HCO, and their responsibilities), not just restate them.
Journal of Nursing Law, Volume 13, Number 4, 2009
The Patient Self-Determination
Act: 20 Years Revisited
Gloria Duke, PhD, RN
Susan Yarbrough, PhD, RN
Katherine Pang, PhD, JD, LLM
Evidence exists that the goals of the Patient Self-Determination Act (PSDA), which went into effect
December 1991, have fallen significantly short of their achievement. The purpose of this paper
is to explore the outstanding and controversial issues that continue to impact both health care
providers and health care consumers today. A brief history of the PSDA and events that led to
its passage are discussed. Further, the complex legal, ethical, and societal issues that have arisen
in the almost two decades since its passage are explored for their impact on health care providers, health care consumers, families, surrogate decision makers, the economy, and society as a
whole. Recommendations for addressing the barriers that impede PSDA goal achievement are
also presented, such as education, policy reform, and effective communications among health
care providers, health care consumers and others. Recommendations for future research are also
offered.
Keywords: Patient Self-Determination Act; advance directives; health care decision making;
autonomy; end-of-life
A
s its 20th anniversary approaches, the federal
Patient Self-Determination Act of 1990 (PSDA)
has provoked multiple social, political, legal,
and ethical issues since its passage (Patient SelfDetermination Act [PSDA], 1990). Passed as part of The
Omnibus Reconciliation Act of 1990, the PSDA became
effective December 1, 1991, amid intense public scrutiny and with great expectations that the law would
“correct the balance of the relationship between health
care consumers and providers,” (Rouse, ¶ 3, 1991).
Twenty years later it is important to evaluate whether
those expectations have been realized and if a sense of
balance has been achieved.
The goals for the PSDA legislation were to: (a) provide education regarding an individual’s rights under
state laws to make decisions regarding health care,
including the right to refuse treatment; ( b) promote
greater formulation of advance directives (ADs) to
be used if individuals become incapacitated; and
(c) reduce end-of-life treatment costs by preventing
unwanted and unnecessary care, in addition to what
health care practitioners perceived as the need for
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Copyright © 2009 Springer Publishing Company
DOI: 10.1891/1073-7472.13.4.114
defensive medicine (Heitman, 1992). The purpose of
this paper is to explore the persistent and controversial
issues that continue to impact both health care providers and health care consumers today. A brief history
of the PSDA, its current status, and progress towards
accomplishing its intended goals, as well as recommendations for the future, will be presented.
HISTORY OF THE PSDA
A significant impetus for the development and ultimate
passage of the PSDA was a 1990 Supreme Court decision
(Cruzan v. Director, 1990), in which hospital employees
refused to honor a parental request to terminate nutrition and hydration from their comatose daughter,
Nancy Cruzan. The issues in this case were compounded by the patient’s incompetence. The Supreme
Court recognized that there are constitutionally protected rights to refuse nutrition and hydration that
would preserve life but these rights typically extended
to the competent patient. The complexities arose in the
context of whether a surrogate (e.g., parents) can make
Duke et al.
that decision under these particular circumstances. The
question essentially becomes one of balancing interests
amid clear and convincing proof of the patient’s intent
and desires. The impact of this case was a major contributor for laying the groundwork for the PSDA legislation.
Although the Cruzan case was a catalyst for the passage
of the PSDA bill, the legislative intent was to standardize
patient information regarding health care decisions.
Under the PSDA, health care providers were required
to provide written information to patients regarding
their rights to participate in decisions about their own
health care, their rights to complete ADs, and the health
care provider’s policies regarding how they honor these
rights. States, however, were free to develop legislation
on the directive types, forms, and limits on the power of
particular agents (such as surrogates).
While Cruzan was the most recent and influential
case for the PSDA passage, the foundation was laid with
earlier cases. Karen Quinlan was 21 years old when she
was placed on life support due to respiratory arrest after
having ingested alcohol and medications in 1975. Quinlan, as Cruzan, was incapable of making a decision as to
health care treatments, and Quinlan’s family petitioned
the New Jersey Supreme Court to remove a ventilator
so she could die with dignity. However, the physicians
and hospital refused to honor the father’s request to
terminate the life-assisting apparatus (Dyer, 2006;
Jackson, 1999). Ultimately, the New Jersey Supreme
Court held that removal was permissible. Quinlan was
removed from the ventilator but breathed on her own,
living for yet another 10 years before dying from an
infection (Dyer, 2006).
In 1985, the New Jersey Supreme Court once again
considered an incompetent patient’s rights of selfdetermination with regard to feeding tubes. The court
decision distinguished elderly nursing home patients
from those who were younger and in a vegetative state,
such as Cruzan and Quinlan. The case involved Claire
Conroy, an 84-year-old woman with severe dementia
( Lo & Dornbrand, 1986). The court (In the Matter of
Claire Conroy, 486 A.2d 1209 [ New Jersey, 1985] ) rejected
the argument that artificial nutrition via tube feedings
was considered to be ordinary life sustaining measures,
and supported the tube feeding withdrawal on the basis
that the benefits of the tube feeding did not outweigh
the burdens, and continuing the tube feeding would
have been inappropriate treatment (Lo & Dornbrand,
1986).
The Brophy v. New England Sinai Hospital case in
1986 heard the argument of Paul Brophy who suffered a ruptured cerebral aneurysm and became
comatose, remaining in a persistent vegetative state
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115
(Davis, 2003; Jackson, 1999). His circumstances were
different in that his life support was defined as artificial nutrition and hydration, while Quinlan’s was
respiratory support. Brophy had never expressed his
intent regarding life-sustaining treatment but more
than 12 family members argued that he would not
want to continue his treatment. The Massachusetts
Supreme Court reasoned that artificial nutrition and
hydration was a medical procedure and as such it
could be rejected as could any treatment. They found
that removing the feeding tube was not the equivalent
of suicide, reasoning that individuals have a right to
death with dignity and a constitutional right to protection from nonconsensual invasion of one’s body.
These cases highlight the complexity of legal and ethical issues inherent in situations in which there is no AD.
They also highlight some of the problematic issues that
arise in very difficult life-sustaining or life-terminating
decisions without the benefit of an AD. The questions
that continue to generate debate are whether these
types of cases have changed since the implementation
of the PSDA and whether the goals of the PSDA have
been successfully accomplished in the last 20 years.
MISSING THE MARK: PROBLEMATIC
ISSUES AND PROBABLE CAUSES
It is our premise that the PSDA has failed to meet its
intended goals. Serious issues still prevail concerning AD completion rates, compliance with completed
ADs, advance planning education, and the cost and
utilization of end-of-life care. These issues, including
discord between law and ethics, have seriously affected
health care practitioners, health care consumers, surrogate decision makers, and others (Ulrich, 2001). Value
system conflicts among the affected parties, varying
approaches to interpretation and enforcement, and lack
of adequate communication are all contributing factors
to the disputes and continued struggles between the various stakeholders and constituents. A discussion of some
of the problematic issues raised since the PSDA went
into effect will be presented as they align with the goals
of the PSDA: ADs, education, and cost-effectiveness of
end-of-life care treatment.
Advance Directives
Advance directives became an important tool for determining patient intent regarding end-of-life care. The
PSDA defined ADs as a written instruction, such as a
living will or durable power of attorney for health care,
that would be recognized under state law as proof of
the patient’s intent and desires should the individual
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become incapacitated ( PSDA, 1990). The premise was
that individuals should be empowered to make their
own health care decisions and to exercise responsibility and authority in so doing through a clear expression
of their intent ( Ulrich, 2001). Before the passage of
the PSDA, few people executed their autonomy in
expressing their intent in health care decision making
through the use of ADs ( Winslade, 1991). While the
PSDA provided legitimized opportunities for individuals to exercise their right to autonomy in health care
decisions, practical concerns were expressed early as to
how the PSDA would be operationalized and enforced
( Weber & Kjervik, 1992). These concerns remain today
and have been fully realized on several different levels.
For instance, problems with PSDA interpretation have
resulted in confusion surrounding implementation procedures in health care facilities. Inconsistencies in the
recognition and honoring of ADs have created multiple
and complex legal-ethical issues that have resulted
in futile care. These controversies are largely due to
differing attitudes, beliefs, and knowledge about the
federal and state statutes used to interpret PSDA implementation. Also to blame are clashing value systems
of patients, families, health care providers, and health
care organizations within an environment characterized by a fear of potential accusations, litigation, and
even threats to professional licensure.
Many states modeled their AD forms on the Uniform
Health Care Directive Act ( UHCDA) and combined
ADs with living wills. Some states, however, refused
to allow for ADs under state legislation requiring the
judiciary to adjudicate by balancing the interests in
each particular case, in many ways creating more
Cruzan-type cases. Standler (2005) observed that decisions in some cases were based on the justification that
death would be a result of natural causes and not on
a decision to discontinue life or withhold artificial life
support; however, “natural causes” can be open to interpretation and result in a different course of events as in
the well-publicized case of Karen Quinlan.
Dilemmas and resulting actions regarding end-of-life
care decision making frequently are more legally based
than ethically based (Annas, 1995). State law covers
implementation and enforcement issues. As such,
the AD must be determined to substantially comply
with the state law provisions for the validity of these
documents. Accordingly, a physician or other health
care provider that fails to comply with an AD, medical
power of attorney, and living will may be subject to
professional disciplinary action as well as possible civil
litigation resulting in monetary damages. However,
issues such as reasonable determinations, good faith,
and similar justifications are all a part of the judicial
interpretative process in adjudicating these issues.
In addition, some states have “matter of conscience or
another basis” exceptions for not complying with ADs
and similar legal documents. The court cases where
physicians have been sued ( Pennsylvania and Ohio,
most notably) involve complex factual determinations
pertaining to informed consent, the nature of the treatment, the patient’s condition, and so forth ( Lynch,
Mathes, & Sawicki, 2008). If claims are factually supported in the opinion of the court then it is possible
for patients to receive compensation for health care
expenses and emotional distress; although as a general
rule, these types of cases are hard to sustain in court.
Under the Death Act in Texas, a directive has no operative effect until a physician has certified in writing that
a patient is “terminal or has an irreversible condition”
( Texas Administrative Code, Section 405.61, 1996). A
physician complying with a directive under Texas law
is protected from civil and criminal liability unless
there is a failure to exercise reasonable care (which
is a complex factual determination). A physician who
refuses to carry out a directive may not only be subject
to criminal and civil liability but may also be subject to
disciplinary action by the Texas State Board of Medical
Examiners.
Though the PSDA was intended to decrease defensive
health care practices (Heitman, 1992), fears of litigation
brought by surviving families/surrogate decision makers continue to exist. Duke and Northam (2009) found
that about 40% of physicians in a Texas community
feared litigation, although Texas law states that “a
person does not commit an offense…by withholding or
withdrawing life-sustaining treatment from a qualified
patient” ( Texas Advance Directives Act [ TADA], 1999,
Sec. 166.047 ). Studies also indicate that physicians fear
litigation by surviving surrogate decision makers or even
by the legal system if they act according to an AD that
may be in conflict with the law or is in conflict with the
wishes of surrogate decision makers ( Duke & Northam,
2009; Ferrell, 2006). Even when physicians are willing
to follow a patient’s AD, they often allow the surrogate
decision maker to convince them otherwise ( Badger,
2005), again usually due to either overt or covert threats
of litigation. Families often have not had the luxury of
time and thoughtful consideration to prepare for the
impending death of a loved one; and when decisions
must be made about life-sustaining or life-ending measures, conflicts may occur ( Ferrell, 2006). However, the
presence or absence of an AD or the passage of time
sometimes has no effect on lessening the contention or
preventing long and drawn out court battles. A widely
Duke et al.
publicized case of this nature was Terry Schiavo, whose
husband and parents were involved in an acrimonious dispute about discontinuing artificial nutrition and
hydration. Ms. Schiavo was in a persistent vegetative
state for many years before her death. Based on the
belief that she could eventually recover, her parents
publically protested the plan to remove her feeding
tube. After her death, autopsy results reflected brain
damage well beyond any hope of recovery from her
current state (Quill, 2005).
A provision in the PSDA calls for ensuring compliance with state laws governing ADs since state laws
were intended to be the mechanism for enforcement
and implementation of the PSDA (Clarke, 2009).
However, information in the literature about operationalizing this compliance process is limited, and anecdotal
information reveals that state law procedures are not
being followed. Further, enforcement issues are problematic at the state level because limited consequences
are in place when a patient’s AD is not followed. The only
known efforts addressing this are some state futile care
laws, such as in Texas ( Health and Safety Code, 1999)
and in Ohio (Ohio Revised Code, 1998), that include the
mandate that physicians either facilitate or not interfere
with the transfer of care to a provider willing to comply with the wishes of patient and/or family/surrogate
decision makers. Even this law is being contested by
“right-to-life” activists (Shannon, 2009). Texas law also
states: “A physician, or a health professional acting
under the direction of a physician, is subject to review
and disciplinary action by the appropriate licensing
board for failing to effectuate a qualified patient’s directive in violation of this subchapter or other laws of this
state” ( TADA, 1999, Sec. 166.045). Problems continue to
arise with these laws, partially due to the multifaceted
ethical issues involved, as well as the age-old problems
of nonadherence and noncompliance.
Despite the advantages of autonomous health care
decision making that have been shown with having an
AD (Pautex, Herrmann, & Zulian, 2008), little improvement has been noted for AD completion rates (Bradley,
Blechner, Walker, & Wetle, 1997; Braun, Onaka, &
Horiuchi, 2002; Shapiro & Bowles, 2002; Wellbery,
2005). This is especially true for those individuals who
are not critically ill (Jezewski, Meeker, Sessanna, &
Finnell, 2007; Wellbery, 2005;). Further, a dichotomy
exists between having positive beliefs and favorability
of advance care planning and low completion rates
in the lay public ( Braun et al., 2002; McAdam, Stotts,
Padilla, & Puntillo, 2005; Nolan & Bruder, 1997) and in
health care providers ( Duke & Northam, 2009; Duke &
Thompson, 2007). Completion rates vary from 20% to
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less than 30% (Dobbins, 2007; Hampson & Emanuel,
2005; Wellberry, 2005), and have remained static for
the past 15 years (Hampson & Emanuel, 2005).
Education
Several reasons for continuing low AD completion rates
have been identified. One such reason relates to how
consumer education is conducted. The PSDA states
that persons should be educated about ADs on admission to health care institutions accepting Medicare
and Medicaid reimbursement. However, interpretation
of the education requirement is inconsistent. Education implies some type of interactive process between
learner and teacher, which does not occur in the
vast majority of cases. When education does happen,
patients are often not in a receptive condition. Many of
the institutions with adherence problems are inpatient
facilities in which persons are admitted under conditions
of urgency and stress, and at a time when cognitive abilities are not focused on something called a “living will.”
Even in outpatient facilities, clients may not have the
mental fortitude to consider ADs. People are typically
being asked to consider ADs under anxiety-provoking circumstances that are beyond their control. Very few health
care institutions do more than provide written materials
about ADs that are bundled together with a variety of
other papers and forms through an admissions office.
Education-related barriers for AD completion by
patients include procrastination ( Butterworth, 2003;
Matzo, Hijjaz, & Outwater, 2008), lack of readiness,
denial, and unrealistic expectations about life-sustaining
and life-prolonging futile care ( Butterworth, 2003).
Also, patients (Golin et al., 2000; Salmond & David,
2005) and health care providers ( Butterworth, 2003;
Smith et al., 2008) have expressed discomfort with
discussing advance care planning. Additional barriers
include institutional environmental factors, lack of
effective communication between staff and patients,
lack of understanding of benefits of ADs, and lack of
trust in a designated surrogate decision maker and/
or health care provider ( Van Dorn, Swanson, Swartz,
Elbogen, & Ferron, 2008). Furthermore, there is a widespread belief that ADs are only for the elderly and/or
terminally ill ( Larew, 1998).
Communication about ADs is recognized as a vital
component of the education process for the lay public,
yet ignorance seems to prevail. Patients who had formulated ADs stated that they learned about them from
persons other than their health care providers (Duke,
Thompson, & Hastie, 2007; Fairchild, 1998; Salmond &
David, 2005). Often, individuals were assisted in the
completion of ADs by attorneys or social workers
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Vol. 13, No. 4
(Duke et al., 2007; Perry, Swartz, Smith-Wheelock, Westbrook, & Buck, 1996).
Studies show ethnic minorities have lower completion rates than do Anglo persons (Dobalian, 2006). A lack
of basic education has been identified as contributing
to the inability to understand future health care dilemmas, and may therefore interfere with the willingness to
make informed decisions about end-of-life care preferences ( Volandes, Ariza, Abbo, & Paasche-Orlow, 2008).
Further, language translation issues are a problem and
may interfere with AD completion. An accepting and
informative attitude by health providers may be an
important key to helping hard-to-reach vulnerable populations come to understand the importance of making
their end-of-life wishes known.
Physician and nurse barriers include inadequate
knowledge and attitudes ( Duke & Thompson, 2007;
Jezewski et al., 2005; Morrison, Morrison, & Glickman, 1994; Putman-Casdorph, Drenning, Richards, &
Messenger, 2009; Shapiro & Bowles, 2002) and comfort
levels ( Morrison et al., 1994; Putman-Casdorph et al.,
2009). Instances of not honoring ADs by the physician
and other health care providers, the surrogate decision
makers, or both, continue to be prevalent (Annas, 1995;
Duke et al., 2007; Duke & Northam, 2009).
End-of-Life Treatment Costs
A goal of the PSDA was to reduce the end-of-life care
treatment costs by reducing unwanted and unnecessary interventions and the perceived need for defensive
medicine ( Heitman, 1992). However, this goal has not
been met since the costs of care have remained high as
individuals near death. Hogan, Lunney, Gabel, and Lynn
(2001) found that Medicare beneficiaries die at the rate
of 5% per year, costing Medicare approximately $26,300
per person. A longitudinal survey compared the change
in health care expenditures with age as people approach
death as compared to expenditures when they were not
close to death ( Yang, Norton, & Stearns, 2003). Findings
revealed that expenditures did indeed increase with age
and the monthly health care expenditures were much
higher when people were close to death. The cost of
care for the last year of life represented 27.4% of all
Medicare payments for the elderly. This percentage has
remained constant for two decades ( Hogan et al., 2001;
Buntin & Huskamp, 2002).
The utilization of intensive care unit ( ICU ) services
has remained high as well. In a retrospective analysis
of administrative data of discharge databases, Angus
et al. (2004) found that one in five Americans die using
ICU services. Stated differently, 18% to 26% of the
U.S. population use the ICU at the end of life with an
average cost of $24,541 per person for terminal ICU
hospitalizations. Dobbins (2007) also found that 42% of
the patients in her study of older adults in a community
hospital died in ICU. Interestingly, Hanchate, Kronman,
Young-Xu, Ash, and Emanuel (2009) found that costs
in the final six months of life for African Americans
($26,704) and Hispanics ($31,702) were considerably
higher than for Anglo Americans ($20,166). Much of the
cost differences were found to be due to greater endof-life use of the ICU and other intensive procedures.
In addition, aggressive and possibly futile care is more
likely in ethnic minorities due to their lower AD completion rates ( Dobalian, 2006) and decreased likelihood
for having a “do not resuscitate” order ( Levy, Fish, &
Kramer, 2005). Little research was found that addressed
the issue of lowering costly end-of-life care. However,
promising research has been reported by Zhang et al.
(2009) regarding the effectiveness of patient-physician
discussions about end-of-life wishes of patients with
advanced cancer. Factors such as use of the ICU, lifesustaining technology, length of stays, hospice services,
and quality of life in days before death were also examined. Their findings indicated that patients who reported end-of-life discussions were less likely to die in the
ICU, had greater utilization of hospice services earlier,
and had 35.7% lower costs of care.
CONSEQUENCES OF THE
PROBLEMATIC ISSUES
Advance directives were intended to decrease uncertainty for families and health care providers in situations
where patients were unable to voice their wishes (Heitman, 1992).When ADs indicating no desire for aggressive
treatment are not honored, harmful and sometimes tragic
outcomes occur for the patient, loved ones, and health
care providers. Patients may experience prolonged pain
and suffering attributable to the disease process and/or
continuing burdensome tests and treatment. Loved ones
also suffer while watching the patient endure the trials
and tribulations of aggressive care (Sibbald, Downar, &
Hawryluck, 2007). Even when the patient is in a vegetative or comatose state, or not receiving aggressive care
yet being kept alive with artificial nutrition and/or ventilation, the possibility of pain and discomfort remains
an issue for that patient. Though we now have more
knowledge about the perception of pain, there is much
yet to be learned. The premise that a person who “looks
peaceful” is not suffering cannot be assumed.
Moral distress on the part of health care providers
is an additional adverse concern created by ethical
dilemmas that may result from failure to honor an AD
Duke et al.
(Austin, Kelecevic, Goble, & Mekechuk, 2009). Jameton
(1984) defined moral distress as “when one knows the
right thing to do, but institutional constraints make it
nearly impossible to pursue the right course of action”
(p. 6). Individuals come to the patient care setting with
their own, and sometimes disparate morals, values,
beliefs, and experiences. These diversities may become
evident when life is prolonged and when little or no
hope for any meaningful life exists, frequently resulting in conflict, anger, frustration, and ultimately, moral
distress (Ferrell, 2006). Though moral distress has been
noted in physicians, it is more often reflected in nurses
due to power differentials (Hamric, Davis, & Childress,
2006). Nurses have less influence on decision making
despite the fact they are more actively involved in direct
patient care and spend more time at the bedside than
any other health care provider. Moral distress leads to
anger and frustration (Ferrell, 2006) and altered health
care team functioning (Austin et al., 2009; Ferrell, 2006)
at a time when collegial interactions and health care
team support is needed for optimal patient care and
for support of each other. Nurse retention problems
are also a byproduct of moral distress (Corley, Elswick,
Gorman, & Clor, 2001).
RECOMMENDATIONS
FOR THE FUTURE
Addressing the identified issues requires targeting several areas: awareness, education, attitudes, AD completion, and compliance with the federal and related state
statutes. Numerous interventions have been tested
over the years to increase AD completion (Heiman,
Bates, Fairchild, Shaykevich, & Lehmann, 2004; Ho,
Thiel, Rubin, & Singer, 2000; Jezewski et al., 2007;
Landry, Kroenke, Lucas, & Reeder, 1997; Myers, Moore,
McGrory, Sparr, & Ahern, 2004; SUPPORT, 1995). However, a key factor that transcends these strategies is
adequate communication among health care consumers, individual health care providers, family members,
surrogate decision makers, and individual legal representatives. Further, these discussions should occur in
appropriate settings and at more optimal times. The
acute care setting is one of the most inappropriate places
to offer information about ADs; yet, this is the most
common setting. Decisions about end-of-life care takes
considerable thought, including discussions with family
and health care providers, and possibly legal and spiritual/religious advisors. A more appropriate strategy
would be to have standardized education and discussions as a routine component of every primary health
care visit to offices and clinics. The AD can be thought
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119
of as the “6th” vital sign in primary care, irrespective
of age, with the topic addressed at each visit to ensure
the “currentness” of one’s AD wishes. Documentation
in the medical record is critical along with appropriate
discussions with surrogate decision makers and family.
The movement toward establishing electronic medical records may facilitate universal communication of
one’s wishes.
Issues regarding enforcement of the PSDA and
related state laws have been problematic and need to be
addressed. For example, the existence of a written AD
has not ensured that a patient’s desires and intent were
honored by family members, health care personnel,
a hospital, or even the courts. By revisiting the language
and wording of these statutes, perhaps any existing
ambiguity can be minimized, resulting in less room for
inconsistent interpretation. Understandable guidelines
can be offered regarding the education component in
terms of what comprises the education content, how
the education is delivered, a means to evaluate patient /
surrogate understanding, qualifications of individuals
providing the education, and the setting in which the
education occurs. Of these, the most critical may be the
qualifications of the educator ( business office staff typically have this role in acute care settings) and evaluating
understanding (this is typically not done). Minimizing
the threat of liability when a patient’s AD is followed
in cases where the patient’s wishes are in conflict with
surviving family and /or surrogate decision makers
must also be addressed. When physicians and nurses
are proactively key participants in AD discussions and
these discussions are appropriately documented, more
persuasive and convincing evidence exists regarding
adherence to the patient’s wishes, which may reduce
the threat of liability. States that do not have specific
policy protecting health care providers who act in
“good faith” and as advocates for a patient with an AD
should address this legislative gap. For those states that
do have this in place, efforts should be made to ensure
awareness and knowledge of this policy, and to explore
factors that cause a continued fear of litigation.
Legislative policy has been partially addressed in
most states concerning futile care. For example, the
Texas Futile Care Law, as part of the Texas Advance
Directive Act ( TADA, 1999), states that a health care
facility may discontinue life-sustaining treatment
against the wishes of the patient or those acting on
behalf of the patient if the treatment is thought to be
hopeless or futile. Further, in Texas and other states,
a physician must arrange transfer of a patient to a
facility willing to render the type of care desired by the
patient and /or surrogate decision makers when there
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is a conflict between surrogate decision makers and
health care providers ( TADA, 1999). As with the PSDA,
problems with the way this law is worded and enforced
interfere with optimizing patient autonomy and wellbeing. For instance, the law mandates actions to be
taken by ethics committees when these conflicts occur.
However, anecdotal evidence indicates that members
of these committees are unprepared for such discussions and that some acute care facilities do not have
a formal ethics committee in place. In these cases, an
“ad hoc” group is called that is comprised of administrative officials and possibly an outside, usually legal,
representative. Making decisions of this nature requires
at least some knowledge of related laws and health
care ethical decision-making processes. It is unlikely
that all decision makers, especially “ad hoc” persons,
have the skills and training needed to make these decisions. Policy formulation should be directed toward
ensuring institutions have the appropriate resources for
complying with these type of statutes. When considering the enormous impact of the decisions to be made,
ethics committee member qualifications and education
should be minimally standardized to facilitate chances
for the best possible outcome in very difficult and complex situations. Ideally, an ethics committee should
be interdisciplinary, representing physicians, nurses,
social workers, spiritual/religious leaders, as well as
lay persons and leaders in the legal, ethical, and
philosophical areas of practice and expertise ( Matzo &
Ramsey, 2006). If an institution does not have qualified
individuals to serve on an ethics committee, a plan
should be established for access to a qualified external
committee or advisory board with similar qualifications
if and when necessary. Further, each institution should
have access to a qualified individual who can act as an
advocate for the patient’s best interests in the event of
conflicts between and among health care providers.
Research should be targeted toward intervention
testing to improve AD completion rates among the
health care providers and the public, especially among
minority groups and with an emphasis on essential communications with individual health care providers and
family. Without these discussions, honoring an AD may
be less likely to happen. Because means are not in place
for monitoring compliance with the related statutes,
research should be targeted in this area so that data can
be provided to legislators and health care administrators in order to better formulate solutions. For example,
to what degree does any institution address in their
policies, procedures, and in actual practice the requirements of a futile care law? A testable intervention may
be appointing an advocate for patients without written
ADs who may be receiving aggressive, futile care. A
wide range of possibilities exist that need to be identified and tested in order to protect the autonomy, dignity,
and respect of every single person who has and has not
formulated a written AD.
CONCLUSIONS
While seeking plausible solutions and commonsense
guidelines, this discussion has left many unanswered
legal-ethical and emotionally laden questions. What
are the consequences when an AD is not followed?
How can threats of liability to health care providers be
minimized? Further, how can the patient be protected
in the case where hope for a meaningful life exists and
efforts are being pursued to discontinue life-sustaining
measures? Do futile care laws written as part of AD
acts help to achieve the goals of the PSDA? Is the public
aware of respective state laws regarding futile care?
How can a person’s autonomy and wishes be respected
when there is no written AD?
Ethical dilemmas and conflicts arise in situations of
existence and nonexistence of an AD, creating seemingly insurmountable problems among the health care
team, family, and others. The importance of communications has been addressed, but also essential is
having an interdisciplinary health care team who can
communicate to facilitate successful outcomes. Working toward ensuring patient autonomy and advocacy
calls for attitude changes for health care administrators, the nursing and medical professions, and other
critical members of the health care team. All need to
work together to eliminate the power struggles and
hierarchical structures that often impede professional
communications and collaborative decision making
that could facilitate more positive patient and family
outcomes. Further, in the face of related patient dilemmas, promoting patient advocacy means having the
patient’s best interests as the central focus of care.
Therefore, it is critical that a sense of mutual trust and
respect exists among health care providers. Strategies
toward accomplishing this goal must be addressed in
future studies using appropriate and credible resources.
Until health care providers can agree that end-of-life
efforts must be centralized around positive patient outcomes, other interventions will continue to fall short of
addressing the problem of adherence to patient wishes
for their final days.
Health care providers and society own the responsibility for ensuring each person is treated with a
sense of respect and dignity in accordance with the
desires and intentions of the patient. This can only be
Duke et al.
accomplished by working together in a unified direction
toward effective policy, education, and practices that
reflect patient advocacy and optimal outcomes while
preserving the patient’s right to self-determination.
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Gloria Duke, PhD, RN, is associate professor of nursing and
associate dean for research and outreach for the College
of Nursing & Health Sciences at the University of Texas at
Tyler; she also works part time at a local inpatient hospice.
Her research interests are in palliative/end-of-life care,
especially pain management and related ethical issues,
and in evidence-based practice implementation projects.
She serves on the Texas Pain Advocacy and Information Network (TxPAIN) and is active with other local,
regional, state, and international professional organizations.
Susan Yarbrough, PhD, RN, is an associate professor of nursing and the associate dean for graduate nursing programs at
the University of Texas at Tyler. Dr. Yarbrough’s research
interests include professional values and ethics. She is very
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123
involved in faculty and student recruitment, advising and
counseling, and new program development including curriculum design and the development of on-line courses.
She also is active in numerous professional organizations.
Katherine Pang, PhD, JD, LLM, is an assistant professor in
the social sciences department where she teaches law and
ethics-related courses at the University of Texas at Tyler. In
addition to her PhD in psychology, Dr. Pang has a JD and
an LLM from Georgetown University Law School and has
published in numerous law journals. Dr. Pang is also a consultant with many organizations on organizational change,
institutional effectiveness, and learning pedagogy. Dr. Pang
has developed several activity-based learning models and
her research interests are in areas that facilitate learning,
decision making, and change. Dr. Pang is active in numerous
international professional associations as a speaker, reviewer,
and committee member.
Correspondence regarding this article should be directed
to Gloria Duke, PhD, RN, The University of Texas at Tyler,
College of Nursing & Health Sciences, 3900 University Blvd.,
Tyler, TX 75799. E-mail: [email protected]
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