5806 80593 Ch25

Ethical issues have been known to cause distress among

nurses, resulting in decreased job satisfaction and in-

creased turnover intention (Hart, 2005). This is especially

problematic when the ethical concern has some legal

consequences. In some cases new laws have been created

to provide guidance in response to ethical dilemmas.

The two offer different ways of thinking about common

problems related to rights of individuals with a disability

within our society. For this reason we address both ethi-

cal and legal issues in this chapter. The intent is for the

reader to appreciate the basis for ethical decision making

and utilize resources that can provide guidance in deci-

sion making. For more details on ethics and models of

ethical decision making for nurses, please see texts on

these specific topics.

Ethical and Legal Issues

Ryan Bratcher

James J. Farrell

Kathleen A. Stevens

Kevin W. Vanderground

LEARNING OBJECTIVES

At the end of this chapter, the reader will be able to

Use the American Nurses Association Code of Ethics and Interpretive Statements as a guide for •

practice.

Discuss how nurses apply ethical concepts to decision making in rehabilitation.•

Describe why guardianship is important and when it should be considered in rehabilitation.•

Recognize different types of advance directives and relevance in rehabilitation. Explain key protections •

within the Americans with Disabilities Act.

KEY CONCEPT AND TERMS

Advance directive

American Nurses Association

Code of Ethics

Americans with Disabilities Act

(ADA)

Autonomy

Beneficence

Bioethics

Capacity

Do not resuscitate (DNR)

Guardian ad litem

Guardian

Guardianship

Individuals with Disabilities Act

Informed consent

Justice

Living will

Medical power of attorney

Nonmaleficence

Patient Self-Determination Act

Psychiatric advance directive

Reasonable accommodations

Veracity

CHAPER 25

DEFINING ETHICS

In the course of daily life we make decisions as to the best

or morally right action to take. How we make decisions

is based on our values and beliefs as well as laws or rules

of society. Ethics is the branch of philosophy that deals

with the values relating to human conduct and with

respect to the rightness or wrongness of certain actions

and to the goodness and badness of motives and ends of

such actions. These values of human conduct are based

on shared beliefs within a society or culture. Ethics most

commonly refers to the reasons for decisions about how

one should act based on the shared values and beliefs of

the group. Ethics refers not to a specific set of principles

or rules but rather presents a way of guided thinking.

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Professional Code of Conduct 387

In our society there are values outlined in the U.S.

constitution that provide the foundation for our soci-

ety. The guiding principles of ethical decision making

are autonomy, beneficence, justice, nonmaleficence and

veracity (Masters-Farrell, 2007). Autonomy is the duty

to allow the individual the right to make his or her own

decision. Conflicts arise when individuals or persons

served make a decision that conflicts with that of the

healthcare team, such as refusing treatment or pursu-

ing a discharge plan the team believes is unsafe. The

individual’s decision may not be what the healthcare

team prefers or recommends; however, the principle of

autonomy says that professionals must respect the deci-

sion made by the person served. Decision making can be

problematic when the individual is unable due to illness,

functional level, cognition, language, or age to participate

in the decision-making process, so a surrogate is used to

execute decision making. This has been an important

principle in several prominent court decisions and is

discussed later in this chapter.

The value of human life and our responsibility as nurses to do

good, promote health, and serve as a patient advocate should

be the foundation for our practice.

The second principle is beneficence, which is the

duty to do good. It frequently is paired with nonma-

leficence, which is the duty to do no harm. So when

presented with a choice of treatment options, the nurse

is expected to elect to choose the option will do good and

cause no harm. A conflict arises when a treatment with a

high likelihood for success comes with exceptional risk.

Should a nurse recommend a patient take a medication

that poses significant health hazards to affect a cure and

yet could be potentially lethal for the person? In this case

the conflict for the nurse occurs in deciding between the

potential for doing good and doing no harm.

The principle of veracity refers to the duty to be

truthful and provide the person served with adequate

information necessary to make an informed decision.

This principle is the foundation for informed consent

in patient care and research studies. In the case of the

medication that is beneficial but carries significant risk,

the importance of truth telling is key. The clinician would

be expected to disclose the risks and benefits to the person

in a manner that is understandable and in a language the

person can understand. Upon disclosing full information,

if the person freely elects to take the medication, then no

moral or ethical issue results. In this case the clinician

has provided full disclosure, verified understanding,

and allowed the individual to make a choice, supporting

the competent person’s autonomy. Conflicts arise when

before administering a medication the nurse assesses the

patient does not have full or adequate knowledge to make

a decision or is incompetent to do so.

The last ethical principle is justice. Justice is the

duty to treat all fairly or act in a manner such that risks

and benefits are distributed equally. When healthcare

services depend on payer, decisions about type, frequency,

and duration of treatment occur. Some clinicians ques-

tion whether justice is being served. Some have argued

that having paid more dollars to an insurance carrier that

negotiates a more comprehensive benefits package than

the public payer is fair, whereas others see this as preferred

treatment. When confronted with an ethical dilemma,

rarely does one principle alone provide adequate guidance

for decision making. The best decisions occur when all

the principles are considered and applied to the thought

process.

MODELS FOR ETHICAL DECISION MAKING

Several models for ethical and moral decision making

have been developed by nurses. These include the three-

step ACT model by Graham-Eason (1996) and the Savage

Model for Facilitating Ethical Decision Making (Savage, &

Michalak, 1999). These models have several commonali-

ties. First, it is important to gather the facts and engage all

stakeholders, including family, healthcare providers, and

the healthcare organization early on. Second, identify the

ethical principles that are the source of conflict, and,

finally, discuss options with key stakeholders. Often, it

is helpful to engage the assistance of the organization’s

ethics committee to serve as a neutral facilitator in these

discussions. The cases mentioned here have all led to legal

precedents or legislation designed to help guide future

decision making, especially in cases when an individual

is not able to express their own healthcare wishes.

PROFESSIONAL CODE OF CONDUCT

To provide guidance, many societies or professions have

formal written codes of conduct that outline the values

of the group and expectations of those that belong to

the group. The American Nurses Association Code of

Ethics (2001) is the code of conduct that guides nursing

practice within the United States. In essence, the Code

of Ethics (American Nurses Association, 2001) defines

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388 CHAPER 25 / Ethical and Legal Issues

knowledgeable of their code of ethics as well as those of

other disciplines (Table 25.1).

Another potential source of conflict in the reha-

bilitation setting is consumer expectations and beliefs

as set forth in regulatory requirements. In particular,

the Commission on Accreditation of Rehabilitation Fa-

cilities, a regulatory body for rehabilitation, expects the

team to include and respect the decisions of the person

served throughout the rehabilitation process. When pa-

tients and/or family members refuse healthcare provider

recommendations or treatments, this can pose a moral

dilemma for staff. A moral dilemma occurs when two

or more clear moral principles apply but they support

mutually inconsistent sources of action (Redman & Fry,

1998). Case Study 25.1 describes how nurses at one facil-

ity addressed a conflict with a parent over unsafe oral

feeding of a child.

Ethical conflicts can arise when two or more indi-

viduals on the rehabilitation team have different expec-

tations of what is right or morally appropriate action.

Savage et al. (2009) suggests guidelines for resolving team

disagreements regarding patient care during nonemer-

gent situations (Box 25.1).

Although many of these conflicts can be resolved

through respectful communication and guidance pro-

vided by the discipline’s code of conduct, some require

more in-depth discussion to discern appropriate action

to be taken. It may be helpful to seek consultation from

the ethical obligations and duties of individuals who have

entered into and practice within the profession of nurs-

ing. The Code is based on the shared belief that “nursing

encompasses the prevention of illness, the alleviation of

suffering, and the protection, promotion, and restoration

of health in the care of individuals, families, groups and

communities” (American Nurses Association, 2001, p.

5). All nurses are expected to be familiar with the Code

and act in accordance with the beliefs and values set

forth in the Code.

In the rehabilitation setting, nurses work with col-

leagues from a variety of different disciplines as a member

of the rehabilitation team. Each discipline has a unique

set of beliefs and values that underscore the philosophy

of the discipline. Each profession also has a code of ethics

that serves to guide professionals within the discipline.

Although many disciplines share some common values

and beliefs related to the value of human life, respect for

the humanness, and desires of the person seeking services

of the professional, there are also differences in relation to

delivery of services that can be a source of conflict (Sav-

age, Parson, Zollman, & Kirschner 2009). For example, a

nurse may believe it is important for a physical therapist

to treat a patient. If the therapist determines there are no

active goals that can be achieved with therapy services,

then according to the profession’s code of ethics it would

be unethical for the therapist to treat the patient and

charge for services delivered. Team members should be

TABLE 25.1 Rehabilitation Disciplines’ Web Links to Code of Ethics

Profession Web Link

Physiatrist http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/

principles-medical-ethics.shtml

Rehabilitation nurse http://nursingworld.org/ethics/code/protected_nwcoe629.htm

Physical therapy http://www.apta.org/AM/Template.cfm?Section=Policies_and_Bylaws1&TEMPLATE=/CM/

ContentDisplay.cfm&CONTENTID=73012

Occupational therapy http://www.aota.org/Consumers/Ethics/39880.aspx

Speech-language

pathology

http://www.asha.org/docs/html/ET2010-00309.html

Psychology http://www.apa.org/ethics/code/index.aspx

Respiratory therapy http://www.aarc.org/resources/position_statements/ethics.html

Pharmacy http://www.uspharmd.com/pharmacist/pharmacist_oath_and_code_of_ethics

Therapeutic recreation http://www.atra-online.com/displaycommon.cfm?an=1&subarticlenbr=41

Social work http://www.naswdc.org/pubs/code/code.asp

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Dilemmas in Rehabilitation: Where Ethics and Legal Issues Come Together 389

DILEMMAS IN REHABILITATION: WHERE

ETHICS AND LEGAL ISSUES COME TOGETHER

Advances in technology and knowledge since the turn of

the 20th century allow modern medicine to accomplish

feats of supporting birth, sustaining life, and promoting

longevity for individuals with chronic illness or dis-

ability. Concurrently, the Internet has increased public

awareness of healthcare options while creating a forum

for dialogue on ideological issues. Bioethics is the branch

of ethics concerned with issues surrounding health care

and the biological sciences. Bioethical issues may occur

from before birth, in the case of in vitro fertilization and

abortion, to end-of-life decision making and euthanasia.

The 20th century began with bioethicists ask ing how far

modern medicine could go in prolonging life, and now

the debate has shifted to how far should modern medi-

cine go and how should end-of-life decisions be made.

CASE STUDY 25.1

The following case study is excerpted from Savage

(2005).

An 11-year old girl who is several years post–trau-

matic brain injured is admitted to the rehabilitation

unit after hip surgery. She is nonambulatory, nonverbal,

and cortically blind. She has a gastrostomy tube in

place; however, at home her mother feeds her pureed

foods with a spoon or eye-dropper. It usually takes the

mother an hour to feed her daughter about 8 ounces of

food. The mother believes her daughter has few plea-

sures in life and that oral feeding, while risky, provides

some degree of pleasure for her daughter. The mother

has asked that her daughter be fed by mouth during

her hospitalization. Staff members on the unit were

uncomfortable with oral feeding and feared potential

harm would occur with feeding.

The ethics consultant recommended several actions

to the staff. First, approach the mother acknowledging

the love and concern she has for her daughter and her

willingness to go to great lengths to provide oral feeding

in the home. Second, express the shared concern of staff

about the safety of oral feedings and concern that they

may not be adequately prepared to feed the child safely

and in a manner consistent with what the mother has

done at home. Third, seek a compromise or common

ground. Perhaps offer that for the child’s safety staff

provide nourishment via gastrostomy feedings during

hospitalization; however, if the mother is present staff

would be able to secure a pureed meal so the mother

can feed the child. Seek consultation from experts in

pediatric feeding who can provide strategies to provide

adequate nourishment as the child’s needs change as

the child matures. Finally, suggest other interventions

such as gentle rocking, skin massages, warm showers,

or play that offer pleasure to the child but are safer

than oral feeding. The ultimate goal according to the

consultant is to provide nourishment while maintain-

ing the mother–child bond, respecting the integrity of

the nursing staff, and forging an alliance between the

mother and the rehabilitation team.

Questions

1. What would the next step be in this process if the

mother refuses to heed the advice of the consul-

tant?

2. If this case came before the ethics board of the

facility, how would you respond to this dilemma as

a rehabilitation nurse? As an ethics board member?

As the nurse manager on the unit?

3. What risks are inherent in this situation to the hos-

pital? To the unit? To the patient? To the mother?

BOX 25.1 Suggested Guidelines for Resolving Team

Disagreements

1. Clarify the plan of care with other members of the

healthcare team.

2. Identify the specific issue that is the source of conflict.

3. State the source of the disagreement and rationale.

4. Propose an alternative action or plan.

5. Determine whether there is agreement, consensus, or

acceptance of the new plan that is acceptable for all.

6. Implement the plan of care.

Adapted from Savage et al. (2009).

a hospital ethics committee or ethics consultant in these

cases. The latter can serve as objective reviewers and offer

alternatives to help the team reach a mutually acceptable

decision.

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390 CHAPER 25 / Ethical and Legal Issues

The case went to the Supreme Court of New Jersey

where it was acknowledged that Karen was in a “persis-

tent vegetative state.” Her condition was clearly deter-

mined to be incurable, and the court was confronted

with determining if a person in her position possessed

the right of choice regarding the disruption or continu-

ance of life-prolonging medical procedures. The court

concluded that the family could, after consultation with

the hospital ethics committee, withdraw life-sustaining

equipment. The court only required that a responsible

physician first determine that there was no possibility

of Karen ever coming out of her present condition to a

cognitive, functional state (Karen Ann Quinlan Memo-

rial Foundation, 2010).

In the aftermath of this case, several interesting

things occurred. Most importantly, living wills evolved

from this case as a means of communicating to family

members and medical staff the wishes of the competent

patients in the event they are unable to make their wishes

known.

Cruzan and Schiavo and the Patient

Self-Determination Act of 1990

The cases of Nancy Cruzan and Theresa Schiavo are

unmistakably linked with the Quinlan case in the public

debate over honoring an individual’s wishes. Although

removing someone from a ventilator in current society

appears to a socially acceptable and even a benevolent act,

the removal of a feeding tube, as in these cases, raised

concern for many individuals, including some healthcare

workers. Some even argued that it was cruel and inhuman

punishment, because no one would voluntarily choose

to “die of starvation.”

Nancy Cruzan was born in Missouri and on the

night of January 11, 1983 she lost control of her car and

crashed into a ditch with the injury resulting in anoxia

to the brain (FindLaw, 2010). After determining that her

condition was irreversible, the family asked the hospital

to cease nutrition and hydration. The hospital refused to

grant the family’s wishes without a court order requiring

them do so. The family then appealed to a trial court who

agreed that Nancy’s wishes, as declared in a conversation

with a housemate, should be upheld. The decision was

appealed to the Supreme Court of Missouri, who reversed

the decision, stating they found insufficient grounds for

removing the feeding tube.

The case made its way to the Supreme Court, who

supported the right of Nancy to have a feeding tube

removed once sufficient evidence was found stating this

was Nancy’s wish. In the aftermath of the Supreme Court

Some of the most notable cases in bioethics are related

to end-of-life decision making and the subsequent legal

decisions that have significant relevance for rehabilita-

tion nursing.

DECISION MAKING FOR THE

INCOMPETENT AND DYING

Perhaps the most commonly debated ethical and legal

dilemma has been when an individual is incapacitated

and unable to make healthcare decisions on his or her

behalf. How far can a surrogate decision maker go in

terms of removing life support devices? In the current era,

when modern medicine appears to be at the point of being

capable of supporting vital organs almost indefinitely,

serious ethical issues have arisen. Should individuals be

able to terminate their own existence where no hope of

quality or cure exists? Or should the family, acting on

behalf of the individual, be permitted to withdraw life-

prolonging medical procedures, even when withdrawing

life-prolonging procedures will almost certainly cause

death? How far can the individual and/or family go in

deciding to terminate life? At what point does terminating

life become homicide and prohibited by the law? Further-

more, what can be done to prevent some mistakes of the

past from being repeated? Three cases, Quinlan, Cruzan,

and Schiavo, stand at the crossroads of ethical and legal

issues in medical practice. These cases, which started

as ethical issues, evolved into legal cases that ultimately

set the precedent for the national use of living wills and

future advance directive laws. These cases are examined

as examples in the following sections.

Quinlan and Advance Directives

The Quinlan case is the landmark case in the patient’s

right of self-determination. On the night of April 15,

1975, Quinlan ceased breathing for two 15-minute in-

tervals and was transported to the hospital, where it was

determined her pupils were unreactive and she failed to

respond to deep pain (Karen Ann Quinlan Memorial

Foundation, 2010). She was placed on a ventilator at the

hospital and received a tracheotomy. In the ensuing days

after her respiratory arrest, her parents watched the con-

dition of their daughter further deteriorate. After much

discussion and counseling, the family determined that it

was in her best interest to remove the ventilator. Whereas

the hospital initially consented to authorize removing the

ventilator and life support, the hospital would later dis-

agree with the decision and took the case to court (Karen

Ann Quinlan Memorial Foundation, 2010).

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Advance Directives 391

Guardianship of Estelle M. Browning in which it was

determined that every person has the “fundamental right

to the sole control of his or her person” (In Re: The Guard-

ianship of Theresa Marie Schiavo from the Circuit Court

for Pinellas County, Florida Probate Division File No.

90-2988GD-003). Furthermore, he stated the Browning

case established this right to reject medical treatment

was not “diminished by virtue of physical or mental

incapacity or incompetence” (In Re: The Guardianship of

Theresa Marie Schiavo from the Circuit Court for Pinellas

County, Florida Probate Division File No. 90-2988GD-

003). To invoke the patient’s rights of self-determination,

the surrogate or guardian must meet three criteria: (1)

the surrogate must be satisfied that evidence in regards

to the patient’s wishes is uncoerced and reliable, (2) the

surrogate must have reasonable assurance that the patient

does not have probability of recovering competence, and

(3) the surrogate must ensure that any written or oral

statements are considered and honored.

The laws regarding end-of-life decisions are not un-

clear. It is without question that decisions like this one

and others related to intensity and use of healthcare in-

terventions are made in hospitals across the nation. When

family members disagree, authority for decision making

is by state law assigned to the closest next of kin unless

the individual has created an advance directive assigning

a surrogate to act on his or her behalf. The importance of

communication between healthcare providers and family

members is often key to resolving ethical dilemmas.

ADVANCE DIRECTIVES

It is important for individuals to make their wishes known

before an event occurs. The Quinlan case encouraged

individuals and families to have discussions about end-

of-life care and encouraged the use of advance directives,

such as a living will. After the Cruzan case, the Patient

Self-Determination Act of 1990 institutionalized this de-

cision making by mandating that all patients upon entry

into a healthcare facility be queried about the existence of

an advance directive and if none exists it was the duty

of the healthcare facility to offer education and assistance

should an individual wish to create an advance directive.

There are several types of advance directives, and nurses

should be aware of the different types and limitations

associated with each type of advance directive.

Advance directives are legal documents that convey

an individual’s decisions regarding end-of-life care and

treatment. These documents are used to direct family

members, friends, and healthcare providers’ decisions

decision, the family found additional witnesses who testi-

fied on Nancy’s behalf regarding her desires about life-

sustaining medical treatment and ultimately the feeding

tube was removed. As a follow-up to this case, the Patient

Self-Determination Act was enacted in 1990 requiring

all medical facilities that accept Medicare or Medicaid

funding to provide counseling for patients on advance

directives.

Most recently, the case of Theresa Marie Schiavo

(Cerminara & Goodman, 2010) may have started as an

ethical concern about the right to remove a feeding tube,

but it would become a lega l quagmire and a highly politi-

cal battle. In this case disagreement among family mem-

bers would lead to a protracted court battle. Terri Schiavo

suffered a cardiac arrest in February 1990. Although her

husband sought medical intervention and rehabilitation

therapy with the hope of Terri regaining some level of

consciousness, he would eventually lose hope and request

to have the feeding tube removed.

The legal battles over Terri began in 1998 when her

husband asked the court for permission to have her feed-

ing tube removed. Her parents opposed the motion. In

February 2000 Judge Greer ruled for the first time that

sufficient evidence existed to demonstrate that Terri

would want the feeding tube removed.

Ultimately, due to the parents’ public statements and

widespread discussion in the public media and on the

Internet, politicians stepped into the fray over Terri’s right

to die. Now for the first time the legal debate extended

beyond the courts into the political and legislative arena.

In October 2003 the Florida House and Senate passed the

bill into law, informally known as “Terri’s Law,” which

prohibited the removal of Schiavo’s feeding tube. Judge

Baird and the Florida Supreme Court declared this law

unconstitutional in September 2004. In December 2004

the Governor of Florida asked the U.S. Supreme Court to

overturn the Florida Supreme Court’s decision, repeal-

ing Terri’s Law. The Supreme Court rejected this motion

(Cerminara & Goodman, 2010).

In 2005 the federal government got involved when

a congressional committee subpoenaed Terri’s family.

The congressional committee asked for a stay on the

removal of the feeding tube. The stay was denied, and

Terri’s feeding tube was removed for the last time on

March 18, 2005 (Cerminara & Goodman, 2010). She

passed away 2 weeks later on March 31.

The pivotal person in this case was the Circuit Judge,

George W. Greer. He presided over this case and made

his decision to allow the feeding tube to be removed

on 11 February 2000. In his ruling he cited the case of

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392 CHAPER 25 / Ethical and Legal Issues

Medical or Durable Power of

Attorney for Healthcare

A second type of advance directive is a medical power of

attorney, also known as a durable power of attorney with

healthcare powers. The medical power of attorney has

broader powers than a living will. A medical power of

attorney allows the patient to choose an individual to

make medical decisions on his or her behalf when the

patient is unable to do it him or herself. This allows the

patient to give decision-making powers to a trusted in-

dividual in the event the patient’s living will does not

address a particular situation. This appointed individual

acts as the patient’s healthcare agent (or proxy) and may

make a broad range of healthcare decisions on the pa-

tient’s behalf. This person is entrusted to make decisions

on behalf of the patient that are consistent with the pa-

tient’s living will or discussed wishes related to healthcare

decisions.

For obvious reasons an individual should select a

healthcare agent they trust and who is not opposed to the

individual’s healthcare or end-of-life wishes and desires.

In fact, choosing a healthcare agent is perhaps one of the

most important decisions in advance directive planning.

This person should have the individual’s best interests

at heart, and most importantly should understand the

regarding health care and treatment in the event the

patient is unable to make or convey these decisions on

his or her own due to some incapacity, such as a coma.

In theory, by preparing an advance directive the patient

can maintain some control over his or her medical treat-

ment while at the same time relieving family, friends,

and doctors of making difficult decisions on behalf of

the patient when the patient is unable to express his or

her intentions. Often, an advance directive will set forth

the patient’s wishes depending on the extent of his or her

ailment or incapacity. For example, an advance directive

could describe what treatment, if any, the patient desires

in the event he or she is unlikely to recover or is perma-

nently unconscious. The advance directive can also direct

healthcare providers to provide treatment regardless of

the severity of the patient’s ailment or condition.

Living Will

Generally speaking, there are three types of advance

directives: a living will, a power of attorney for health-

care decision making, and a do not resuscitate (DNR)

order. A living will, otherwise known as a healthcare

declaration or healthcare directive, is a written docu-

ment that sets forth the types of medical treatments or

life-sustaining measures the patient wants or does not

want in the event the person has a terminal illness and

is unable to communicate. This document goes into ef-

fect once the patient has been deemed terminal by a duly

authorized physician and is unable to articulate his or

her own desires regarding treatment. When preparing a

living will, a patient can choose the treatments he or she

would like to receive if unable to articulate these on his

or her own due to an incapacity. Typically, a living will

sets forth whether or not the patient would like to receive

treatments as described in Box 25.2.

A living will can convey the patient’s decision regard-

ing organ donation as well.

It should be noted that a living will does not neces-

sarily convey the patient’s decision to obtain or refrain

from certain treatments. In some cases the patient, by

his or her living will, may expressly state that he or she

is intentionally making no decision regarding what treat-

ment to receive. In doing so, the patient is purposely

leaving such decisions to family members and doctors.

Regardless of the patient’s decisions set forth in a living

will, it is advisable for healthcare providers to discuss the

treatments available. In doing so, the patient can make

informed decisions regarding prospective treatments and

possible outcomes of those treatments.

BOX 25.2 Sample of Items Addressed by a Living Will

Resuscitation.• Resuscitation is the attempt to restart

the heart when it has stopped beating. Common forms

of resuscitation are by cardiopulmonary resuscitation

(CPR) or a defibrillator device that administers an

electric shock in an effort to stimulate the heart.

Artificial nutrition and hydration.• The patient can

express whether or not he or she desires nutritional and

hydration assistance via a tube or intravenously. In his or

her living will, the patient can express the duration of

time he or she would desire life to be sustained by these

methods.

Mechanical ventilation.• Mechanical ventilation refers

to devices that substitute or assist spontaneous

breathing. Again, the patient can express the duration

of time he or she would desire life to be sustained by

mechanical ventilation.

Dialysis.• Dialysis refers to artificial replacement for

diminished or lost kidney function. In receiving this

treatment, machinery will assist the body by removing

waste from the patient’s blood. In a living will, the

patient can determine the duration of time he or she is

desirous of this treatment.

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Psychiatric Advance Directive 393

and is carried by them from one healthcare setting to

the next (Illinois Department of Public Health, 2005).

This order spells out what the individual wants in terms

of resuscitation while they are being transported from

one facility to another or in the case of some patients

in rehabilitation when they are being seen as an outpa-

tient at another hospital or physician office. The nurse

should be aware of their hospital policy and state rules

and regulations on DNR orders. In addition, residents

in long-term care facilities are now urged to place their

living wills and DNR orders on their refrigerators so that

in the event of an emergency, rescue personnel have ready

access to these legal documents that can aid in upholding

the person’s wishes.

PSYCHIATRIC ADVANCE DIRECTIVE

A relatively new way to deal with mental health decisions

in advance is through a psychiatric advance directive,

sometimes called a declaration for mental health treat-

ment. As the name implies, this legal document can be

used to declare in advance one’s desires regarding the psy-

chiatric or mental health treatment they wish to receive.

A psychiatric advance directive may be used to document

a competent person’s specific instructions or preferences

regarding future mental health treatment. This is done in

preparation for the possibility that the person may lose

capacity to give or withhold informed consent to treat-

ment during acute episodes of psychiatric illness.

Advance directives can be prepared in a variety of

ways. Many times, healthcare professionals have a form

a patient can fill out to make known his or her desires.

A patient can also write his or her own desires. Another

potential resource is also a local health department or

other local or state agency that can provide a form. Fi-

nally, and perhaps the best resource for preparation of an

advance directive, is an experienced, licensed attorney.

Although this may be slightly more expensive for the

patient, the cost for this type of legal work is relatively

small, and counseling offered by the attorney can go a

long way in avoiding future complications. The legal

requirements for advance directives vary from state to

state, and the individual creating the documents should

keep this in mind.

Regardless of the source for the advance directive, the

preparer should keep in mind that the document need not

be long and complicated. A short, simple statement of the

patient’s desires regarding treatment should suffice. Once

an advance directive is prepared, it is advisable to have the

individual’s wishes. The individual should discuss the

issue with the potential healthcare agent to ensure they

are willing to serve in this capacity. When choosing a

healthcare proxy or surrogate, the individual should

choose a person who is mature and capable of making

difficult decisions. The person selected need not be a

family member, and at times the patient’s best interests

may best be served by choosing an agent who is not fam-

ily. In any event the patient should not choose an agent

out of a sense of obligation or feelings of guilt. It is also a

good idea, for practical reasons, that the agent live near

the patient. This allows the agent to more readily con-

sult with the patient’s healthcare providers and to make

better-informed decisions regarding care. Selecting an

alternate power of attorney is also recommended in the

event the primary power of attorney is unable or unwill-

ing to serve if the time to do so arises.

It is important to understand the distinction between

a power of attorney and a medical power of attorney. With

the former, the authority conveyed typically allows the

agent to conduct business or financial transactions on

behalf of the person who has granted the authority to act

in this way. A medical power of attorney conveys specific

authority to an agent for the express purpose of making

medical decisions on behalf of the grantor. Given this

distinction, it is important that the healthcare provider

be aware of the extent to which the agent has authority

to make decisions on behalf of a patient. A doctor should

not look to a patient’s agent for medical treatment deci-

sions if the only authority conveyed to the agent by the

patient is to sign checks on his or her behalf.

DNR Order

A third common advance directive is a DNR order. This

is a request by the patient to not receive cardiopulmo-

nary resuscitation in the event his or her heart stops or

he or she stops breathing while at the hospital. A DNR

order can typically be placed in the patient’s chart by

the request of the patient. Hospital policy defines the

organization’s responsibilities for who can request a DNR

order and the organization’s responsibility for honoring

the DNR order.

Typically, the DNR applies only when the individual

is undergoing care and treatment at the hospital, but

nursing home residents may have a standing DNR on the

medical record after going through the proper channels

to have this implemented. Within the past few years a

select number of states have created a universal or uni-

form DNR order request that is initiated by the individual

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394 CHAPER 25 / Ethical and Legal Issues

are working in. Generally, once an individual has been

determined to be incapacitated, the court can appoint

a guardian to make some or all decisions for that indi-

vidual.

Identifying a Guardian

A “guardian” is a person who has the legal authority and

duty to care for another’s person or property (Garner,

1999). A guardian or conservator may be appointed for

all purposes, for a specific purpose, or a specific period of

time. The term includes a temporary guardian, a limited

guardian, and a successor guardian but excludes one who

is only a guardian ad litem (a guardian ad litem usually

only appears in court for the incapacitated individual).

The guiding principle in all guardianship is that of least

intrusive measures to ensure as much autonomy as pos-

sible. The guardian’s authority is defined by the court,

and the guardian may not operate outside that author-

ity. However, guardianship duties are often not clearly

defined. A good guardian takes into account the wishes

and desires of the incapacitated person, often called a

“ward,” when making decisions about residence, medical

treatments, and end-of life issues. The courts will remove

only those rights that the proposed ward is incapable of

handling.

When the courts appoint a guardian, certain rights

of the ward are removed. Table 25.2 lists the rights of the

patient review the document with his or her doctor. This

will assist the healthcare provider to understand exactly

what the patient’s intentions are regarding treatment.

Any advance directive should be notarized and a copy

given to the patient’s doctor and any agent appointed in

the medical power of attorney document.

The patient should also be aware that an advance

directive can be changed at any time as long as the patient

is of sound mind. To be of sound mind means that the

patient can think rationally and can communicate his or

her wishes clearly (i.e., is deemed competent). It is also

recommended that the patient periodically review his or

her advance directives to ensure the documents still ac-

curately reflect his or her intentions. Any changes should

be made known to the patient’s doctor and any individu-

als appointed as a healthcare agent. In the absence of an

advanced directive, family members and physicians are

left with the unfortunate task of making difficult deci-

sions without the benefit of knowing the patient’s wishes

and desires. State law dictates the legal order of decision

making within the state. The typical order is spouse, par-

ent, child, and sibling. Only a few states have a provision

allowing domestic partners to serve as decision makers.

At times the order of decision making can be a source of

conflict, as in the case of a woman with a traumatic brain

injury sustained as a result of domestic abuse. If criminal

charges are not filed against the spouse, the spouse will

in most states be primary decision maker (see Case Study

25.2). Dealing with such situations is stressful enough,

but often the absence of an advance directive can lead to

conflict among family members, friends, and healthcare

providers. Nurses as patient advocates should encourage

individuals to consider preparing an advance directive

long before it is actually needed.

GUARDIANSHIP

Safe decision making is part of every day life, yet some

patients in rehabilitation are unable to make decisions

without jeopardizing their welfare. One of the most com-

mon ethical and legal dilemmas in rehabilitation is how to

care for those who may not be able to make decisions in

a cogent manner. As a result the law has developed a tool

called “guardianship.” The number of guardianships is

increasing, and as the so-called baby boomer generation

ages, the number of guardianships in the United States

is projected to continue to grow.

Rehabilitation nurses should have an understand-

ing of the general principles surrounding guardianship

and the specific rules applicable in the jurisdiction you

CASE STUDY 25.2

You are working with a female patient who has sus-

tained a C-5 complete ASIA A spinal cord injury. The

patient is dependent for all activities of daily living

and has a tracheostomy in place. The patient tells you

she wants to die rather than live with this disability.

She has been eating poorly and refusing turns and

therapy. At team conference several team members are

recommending discharge to a skilled nursing facility

because the patient has no rehabilitation goals. You

and other team members are concerned about her well-

being and not comfortable with the discharge plan.

Questions

1. How can this dilemma be resolved?

2. What factors should be considered?

3. What role might the ethics board play in a situa-

tion such as this?

4. What legal and ethical factors/principles should

be considered?

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Guardianship 395

have the relative declared to be an incapacitated person

when family members perceive the individual is exercis-

ing poor judgment. When an elderly person has assets

that are desired by his or her heirs, many times the family

members attempt to have the individual declared to be

an incapacitated person so they can establish a guardian-

ship and control the assets of the individual. As a result,

family members will try to attribute what they perceive

to be a bad decision to incapacity.

Another common cause for guardianship requests is

dementia. Many times the one suffering from dementia

is unaware of the seeming absurdity of his or her decisions

and will thus fight the guardianship proceedings. In this

situation it is often difficult for the court and medical per-

sonnel to tell the difference between family and friends

of the patient who are acting with the well-being of the

patient in mind and those acting in their own self-interest.

Some research has indicated that persons with dementia

may fluctuate in their decision-making abilities (Menne

& Whitlatch, 2007), further complicating the issue. How

then should courts and practitioners examine whether

an individual is incapacitated? Many courts use some

or all of the following criteria in assessing the capacity

of an individual:

What is the current cognitive ability of the patient?•

What is the medical condition that caused the cur-•

rent condition?

Is it temporary or reversible?•

Can the person perform the activities of everyday •

living (e.g., grooming, toileting, eating, dressing)?

What is the risk of harm associated with the least •

restrictive means available?

Some courts attempt to understand the values or pref-

erences of the incapacitated person. Of course, if the

incapacity is mental or psychological, such as demen-

tia, understanding the person’s preferences can become

rather complicated.

Establishing guardianship is a legal process that in-

volves the removal of an individual’s rights. There are

several due process hurdles one seeking a guardianship

of another must overcome:

The individual must be notified of all court •

proceedings.

The individual is entitled to representation by an •

attorney.

The individual can and may be compelled to attend •

hearings regarding his or her capacity/guardianship

unless excused due to physical impossibility.

ward that are removed during guardianship. These rights

are rights typically guaranteed by federal or state law to

citizens so any removal of these rights can significantly

limit an individual’s role within society and thus the

process of guardianship is highly regulated.

Capacity Determination

The first step in the guardianship process is to deter-

mine “incapacitation.” An incapacitated person is a per-

son who is impaired, for any of a variety of reasons, to

the extent that personal decision making is impossible

(Garner, 1999). Each state has an official legal definition

of an incapacitated person. The legal definition is not

the same as a medical definition of incapacitation. The

legal definition often is based on a determination of an

individual’s inability to manage his or her own property

and/or provide self-care (Indiana Code § 29-3-1-7.5).

Several states have very detailed explanations of what a

determination of incapacity involves. For example, Vir-

ginia defines an incapacitated person as follows (Virginia

Code § 37.2-1000):

An adult who has been found by a court to be incapable

of receiving and evaluating information effectively or

responding to people, events, or environments to such

an extent that the individual lacks the capacity to (i)

meet the essential requirements for his health, care,

safety, or therapeutic needs without the assistance or

protection of a guardian or (ii) manage property or

financial affairs or provide for his support or for the

support of his legal dependents without the assistance

or protection of a conservator.

It is important for rehabilitation nurses to know the of-

ficial definition for their state to articulate the standard

by which the capacity of patients will be judged.

Poor judgment does not constitute incapacity. For

relatives of elderly individuals, there is a temptation to

TABLE 25.2 Rights of the Ward Removed During

Guardianship

Consent to medical

treatment

Make end-of-life decisions, such

as the withdrawal of life support

or withholding of medical care

Determine place of

residence

Possess a driver’s license

Manage, buy, or sell

property

Own or possess a firearm or

weapon

Enter into a contract Marry

Vote

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396 CHAPER 25 / Ethical and Legal Issues

At the very least one could argue for an ethical obligation

to entrust as much of his or her own affairs as possible

to the individual.

One tool that has been increasing in popularity is the

limited guardianship. A limited guardian has only those

powers specifically stated in the court order making him

or her a guardian. In other words, the court can decide

the guardian can only do certain things on behalf of

the incapacitated person. For example, an incapacitated

individual may be perfectly capable of determining liv-

ing arrangements or his or her degree of participation in

family or religious events, but a court may decide he or

she are not currently capable of understanding a new lease

agreement on an apartment or making a major purchase.

The decision to pursue guardianship is not to be taken

lightly. Yet when used properly guardianship can be a

valuable resource, allowing the individual to live with

a high quality of life.

INDIVIDUALS WITH DISABILITY

AND RIGHT TO LIFE ISSUES

A second area where ethical and legal issues merge is

related to rights of individuals with disability within

society. For many years individuals with disability where

denied either by law or societal handicap basic rights as

citizens, such as right to a public education or the right

to vote. As recently as 1979 it was legal for some state

governments to sterilize disabled individuals against

their will or prohibit people with certain disabilities from

marrying (Regents of the University of California, 2004).

In the early 1970s the disability rights movement started

at the University of California at Berkley. The disability

rights movement asserts that people with disabilities are

human beings with rights equal to any American citizen.

The movement sought to secure these rights through

political action. As a result of their efforts a number of

legislative victories have occurred within our society.

Table 25.3 outlines 20 years of legislation to secure rights

for individuals with disabilities.

One of the first successes was the passage of the

Rehabilitation Act of 1973. This federal law for the first

time protects individuals with disabilities from discrimi-

nation based on their disability. The Act defined qualified

individuals with disabilities as persons with a physical

or mental impairment that substantially limits one or

more major life activities as well as persons who have a

history of or are regarded as having a physical or men-

tal disability. According to the Act, major life activities

The individual is entitled to compel, confront, and •

cross-examine all witnesses and present his or her

own evidence.

The individual may appeal the determination of the •

lower court.

The individual has the right to a jury trial.•

The due process required for the removal of an individ-

ual’s rights may vary from state to state, and as such the

state’s statutes and case law will be the final authority.

Anyone can act as a guardian. The court will decide

who should be the guardian of an incapacitated indi-

vidual. There may be different types of guardians speci-

fied, depending on the patient’s condition and needs. For

example, a patient with complex needs and a large estate

may have a guardian of person (who handles daily affairs

including health and home maintenance), a guardian of

his or her estate (who handles all financial aspects), and

a guardian ad litem (for legal counsel).

As a general rule, courts prefer close relatives to be the

guardian (of person) because they are often best prepared

to understand the individual’s needs and desires. Many

community organizations, and some state and national

organizations, can connect individuals with volunteer

advocates who will act on behalf of the incapacitated indi-

vidual. When the court appoints a guardian of the person,

the responsibilities of the guardian are as follows:

Determine and monitor the residence of the inca-•

pacitated individual

Consent to and monitor medical treatment•

Consent to and monitor services such as education •

and counseling

Consent to and release of confidential information •

(i.e., healthcare records)

Make end-of-life decisions•

Act as representative payee•

Report to the court about the guardianship status •

at least annually

Often, a guardian will have to right to make financial

decisions on behalf of the incapacitated person. Prac-

titioners need to be careful as well when deciding for

themselves as to the capacity of an individual. Often,

physicians and other medical personnel can be called to

testify in court as to what they observed and the func-

tionality of an individual. Because so much is at stake for

the supposedly incapacitated person and there is so much

risk of wrongdoing and potential loss, some laws create

a duty to maximize the independence of the individual.

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Individuals with Disability and Right to Life Issues 397

TABLE 25.3 Federal Disability Rights Laws and Court Decisions

Law Date Summary

Architectural

Barriers Act (ABA)

1968 Requires that buildings and facilities that are designed, constructed, or altered with Federal

funds, or leased by a Federal agency, comply with Federal standards for physical accessibility.

Facilities of the U.S. Postal Service are not covered by this Act.

Rehabilitation

Act

1973 Prohibits discrimination on the basis of disability in programs conducted by Federal agencies,

in programs receiving Federal financial assistance, in Federal employment and in the employ-

ment of Federal contractors.

Individuals with

Disabilities

Education Act

(IDEA)

1975 This Act requires public schools to make a free appropriate public education in the least

restrictive environment available to all eligible children. It also requires public school systems

to develop appropriate individualized education programs (IEPs) for each child. The IEP must

be developed by a team of knowledgeable persons and must be reviewed at least annually.

Voting

Accessibility for

the Elderly and

Handicapped Act

1984 This Act requires polling places across the U.S. to be physically accessible to people with

disabilities for federal elections. If no accessible location is available, an alternate means of

casting a ballot must be offered. States must make registration and voting aids available for

disabled and elderly voters.

Fair Housing Act 1988 Prohibits housing discrimination on the basis of race, color, religion, gender, disability, familial

status, and national origin. Amendments are applicable to government housing as well as

private housing that receives federal assistance. It also requires landlords to allow tenants

with disabilities to make reasonable access-related modifications to their private living space,

as well as common areas. Any new multifamily unit with four or more units be designed and

built to allow access for persons with disabilities.

Americans With

Disabilities Act

(ADA)

1990 The ADA prohibits discrimination on the basis of disability in employment, state and local

government, public accommodations, commercial facilities, transportation and telecom-

munications. It also applies to the U.S. Congress.

Air Carrier Access

Act

1990 Prohibits discrimination in air transportation by domestic and international carriers against

qualified individuals with physical or mental impairments. It applies only to air carriers that

provide regularly scheduled services for hire to the public.

National Voter

Registration Act

“Motor Voter Act”

1993 This Act requires all offices of state-funded programs that are primarily engaged in providing

services to persons with disabilities to provide all program applicants with voter registration

forms, to assist them in completing the forms, and transmitting the completed forms to the

appropriate state official.

Telecommunica-

tions Act

1996 Requires manufacturers of telecommunications equipment and providers of telecommuni-

cations services to ensure that such equipment and services are accessible and usable by

persons with disabilities, if readily achievable. The amendments ensure that people with

disabilities have access to a broad range of products and services such as telephones, cell

phones, pagers, call waiting, and operator services that previously were inaccessible to

persons with disabilities.

Civil Rights of

Institutionalized

Persons Act

1997 This Act authorizes the U.S. Attorney General to investigate conditions of confinement at

state and local institutions such as prisons, jails, pretrial detention centers, juvenile

correctional centers, publicly operated nursing homes, and institutions for persons with

psychiatric or developmental disabilities. The purpose is to all the Attorney General to

uncover and correct any widespread deficiencies that would jeopardize the health and safety

of the residents.

Olmstead

Decision

1999 U.S. Supreme Court affirmed that unjustified institutionalization of people with disabilities is

discrimination and violation of the ADA. States are required to provide community-based

services for persons with disabilities otherwise entitled to institutional services when the

state’s treatment professionals reasonably determined that community placement is

appropriate; the person does not oppose such placement; and the placement can reasonably

be accommodated, taking into account resources available to the state and the needs of

others receiving state-supported disability resources.

Source: Adapted from U.S. Department of Justice (2005).

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398 CHAPER 25 / Ethical and Legal Issues

healthcare professionals is the prohibition of discrimina-

tion against those with disabilities within the realm of

public accommodations.

Private hospitals or medical offices are covered by

Title III of the ADA as places of public accommodation.

Public hospitals and clinics and medical offices operated

by state and local governments are covered as programs

of public entities. Section 504 covers any of these that

receive federal financial assistance, which can include

Medicare and Medicaid reimbursements. In other words,

if you provide medical care, it is highly likely that you

are required to abide by the ADA. The ADA requires

that medical care providers provide individuals with

disabilities

Full and equal access to their health care services •

and facilities; and

Reasonable modifications to policies, practices, and •

procedures when necessary to make healthcare ser-

vices fully available to individuals with disabilities,

unless the modifications would fundamentally alter

the nature of the services (i.e., alter the essential

nature of the services).

Equal treatment for individuals with disabilities can

mean an adjustment to the normal practices of healthcare

providers. For instance, generally it is not acceptable to

examine an individual in his or her wheelchair because

the exam would not be as thorough as an exam on an

exam table. Thus, accommodations may be necessary to

get the patient from the wheelchair to the exam table.

Accessible room design, training in proper techniques,

and cer tain equipment (such as adjustable exam tables and

medical testing equipment) are likely necessary to ensure

equal treat ment. For nurses in particular, training regard-

ing the proper techniques for lifting and moving patients

is becoming increasingly valuable. Because most medical

service personnel are not in control of the equipment or

facilities available to them, the most they can do is be

sure they are using proper techniques. Because employ-

ers have a legal obligation to provide equal treatment,

this training often readily available.

OLMSTEAD DECISION: INSTITUTIONALIZATION

OR COMMUNITYBASED SERVICES

In the late 1990s two women in Georgia whose disabilities

included mental retardation and mental illness filed suit

stating that their institutionalization was discriminatory

and in violation of the ADA (U.S. Department of Health

and Human Services, 2000). At the time the women were

include caring for one’s self, walking, seeing, hearing,

speaking, breathing, working, performing manual tasks,

and learning (U.S. Department of Justice, 2005). Under

the Act employers may not deny qualified individuals the

opportunity to participate in or benefit from federally

funded programs, services, or other benefits. Qualified

individuals with a disability could not be denied ac-

cess to programs, services, benefits, or opportunities to

participate as a result of physical barriers and, finally,

could not be denied employment on grounds of their

disability. The law applied to employers or organizations

receiving federal funding, so there were still a number

of private entities exempt from the Act. The Act for the

first time provided a legal definition of individuals with

disability and clearly prohibited discrimination on these

grounds.

A second major piece of legislation provided indi-

viduals with a disability access to public schooling. The

Individuals with Disabilities Act, commonly referred

to as IDEA, provides eligible children with disabilities a

free appropriate public education in the least restrictive

environment. Previously, many children with disabilities

were segregated in schools dedicated to children with

disabilities. Children with disabilities were now accorded

public education opportunities equivalent to able bodied

children.

Over the next 10 years federal legislation eliminated

barriers in voting and housing with federal funding. Al-

though the federal government was moving to eliminate

barriers, a number of barriers continued to exist in the

private sector. In 1990 President George H. Bush signed

the Americans with Disabilities Act (ADA), a landmark

piece of legislation often considered the civil rights bill for

individuals with disabilities. The ADA is a federal civil

rights law that prohibits discrimination in employment,

public services, and public accommodations against a

person with a disability. According to the Act, a dis-

ability, consistent with the Rehabilitation Act of 1973, is

a physical or mental impairment that substantially alters

one or more major life activities.

Unlike the Rehabilitation Act of 1973, the ADA ap-

plies to both governmental and private entities (U.S. De-

partment of Justice, 2005). However, the discrimination

is not barred everywhere, only in employment, public

services, ad public accommodations. In employment,

employers are required to make reasonable accommo-

dations for a disabled employee. The word “reasonable”

has sparked a lot of litigation. Also, the government is

not allowed to discriminate against the disabled in the

provision of public services. Of particular importance for

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Summary 399

testing reinforce the belief that life is only valued for able

bodied children and that children with disability should

not be allowed to live?

The therapeutic use of stem cells is a potential ethi-

cal concern for many. Scientists postulate that stem cell

therapy may be of benefit to patients with a number

of chronic illnesses, such as diabetes and Alzheimer’s

disease, as well as individuals with disabilities such as

spinal cord injury (Chapman, Frankel, & Garfinkel, 1999;

National Institutes of Health, n.d.). Currently, there is

a limited supply of available stem cells, and it is antici-

pated that new sources of live stem cells will be needed

in the future. Under the Bush administration federal

funding for human embryonic stem cell research was

limited by presidential order. In March 2009 President

Obama revoked this order and removed the limitation

on scientific exploration of the use of stem cell therapy

to reduce disease and disability (National Institutes of

Health, www.stemcells.nih.gov/policy/defaultpage.asp).

For some individuals the use of stem cells presents a moral

and ethical challenge to their values.

SUMMARY

Perhaps it was inevitable that with the advances in mod-

ern medicine since the turn of the 20th century that

ethical issues would arise. Where the life expectancy

once was in the 40s, modern medicine has increased it

to 78 years old. With increased life expectancy came the

increase of chronic disease and associative suffering.

Also, modern medicine found a way to sustain people on

life support nearly indefinitely. Consequently, we began

the 20th century asking how far modern medicine could

go. We ended the 20th century asking how far modern

medicine should go.

The collision between personal rights and modern

medicine continues today. The battle between rights

and medicine will likely continue throughout the 21st

century. Rehabilitation nurses will encounter some of

covered by the state Medicaid program that restricted

payments for ongoing health services to payment for

services provided during an inpatient stay at healthcare

institution. According to the suit, local health profession-

als involved in the care of the women had determined

that appropriate mental health services could be provided

in a community setting, yet at the time Medicare and

Medicaid funding was not available to provide the sup-

port needed for community care. As a result of the court

decision the Department of Health and Human Services

committed to working with state Medicaid directors to

craft fiscally responsible solutions that support compli-

ance with the ADA, including making funding available

for individuals with disability to live in the community

with the right support (U.S. Department of Health and

Human Services, 2000).

INDIVIDUALS WITH DISABILITIES:

A GROWING VOICE

Individuals with disabilities were vocal not only about

legal issues but also ethical matters related to the value

and qualit y of life associated with disability. One specific

concern was the case of Ashley X (Kirschner, Brashler,

& Savage, 2007), a young disabled girl diagnosed with

static encephalopathy. As a result of the disability she was

dependent in all activities of daily living, nonverbal, and

received all nutrition through a feeding tube. As Ashley

approached puberty her parents were concerned that her

physical growth would make it difficult for them to care

for Ashley at home. After discussion with her physician,

a plan was devised to provide high-dose estrogen to at-

tenuate her growth. Concurrently, Ashley underwent a

hysterectomy and breast bud removal. The combination

of medication regimen and the surgery was referred to

as the “Ashley treatment” (Kirschner et al., 2007). This

treatment raised significant concern among individuals

with disabilities who viewed the parents’ decision as

evidence of an ongoing stigma against individuals with

disabilities in society. Did the parents’ decision to have

the hysterectomy performed in the absence of disease

violate the rights of Ashley as a person? Do cases such

as this further the image of life with disability as less

than adequate?

Similar concerns have been voiced related to deci-

sions on euthanasia and genetic testing. In the case of

genetic testing, if testing reveals gene for one of several

diseases that result in severe disability, is it ethical to then

proceed with a therapeutic abortion? Is manipulation of

genes in utero a violation of the embryo? Does genetic

BOX 25.3 Web Exploration

Code of Ethics for Nursing and Interpretive Statements

http://nursingworld.org/ethics/code/protected_

nwcoe629.htm

A Guide to Disability Rights Law

http://www.ada.gov/cguide.htm

Stem Cell Research, National Institutes of Health

http://stemcells.nih.gov/info/defaultpage

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400 CHAPER 25 / Ethical and Legal Issues

PERSONAL REFLECTION

Do you have an advance directive? If so, why? If •

not, why not?

Think about three or four individuals with whom •

you have had conversations about your end-of-life

wishes. How would they represent your decisions

when questioned by the court?

Do you know someone with a disability? When •

you initially learned about the disability how did you

react? How does this person describe his or her life

since the onset of the disability? Has this changed

your initial perception about the person’s life with

a disability?

Can you describe a scenario in a clinical setting when •

you had a hard time deciding on the right action to

take? Think about how you made the decision. What

factors did you take into account when deciding?

RECOMMENDED BOOKS ON ETHICS AND NURSING

American Nurses Association. (2001). Code of ethics for nurses with

interpretive statements. Washington, DC: Author.

Bandman, E., & Bandman, B. (2002). Nursing ethics through the

life span (4th ed.). New York: Prentice Hall.

Bartter, K. (2001). Ethical issues in advanced nursing practice.

Philadelphia: Elsevier.

Beauchamp, T. L., & Childress, J. F. (2001). Principles of biomedical

ethics (5th ed.). New York: Oxford University Press.

Bosek, M. S. D., & Savage, T. A. (2007). The ethical component of

nursing education: Integrating ethics into clinical experience.

Philadelphia: Lippincott Williams & Wilkins.

Danis, M., Clancy, C., & Churchill, L. R. (2005). Ethical dimensions

of health policy. New York: Oxford University Press.

Jecker, N. S., Jonsen, A. R., & Pearlman, R. A. (2007). Bioethics:

An introduction to the history, methods, and practice (2nd

ed.). Sudbury, MA: Jones & Bartlett.

Macrina, F. (2005). Scientific integrity: An introductory text with

cases (3rd ed.). Washington, DC: American Society for Mi-

crobiology Press.

Morrision, E. E. (2006). Ethics in health administration: A prac-

tical approach for decision makers. Sudbury, MA: Jones &

Bartlett.

REFERENCES

American Nurses Association. (2001). Code of ethics for nurses with

interpretive statements. Washington, DC: Author.

Cerminara, K. A., & Goodman, K. (2010). Schiavo case resources:

Key events in the case of Theresa Maria Schiavo. Retrieved

May 20, 2010, from http://www6.miami.edu/ethics/schiavo/

schiavo_timeline.html

the difficult decisions in their practice or work settings.

Yet, certain foundational beliefs such as the belief in our

society that all life has value and meaning will hope-

fully underscore ethical decision making in the future.

Second, the rights of the individual cannot be infringed

upon except when such exercise of those rights endanger

others. Third, medical treatment and procedures must be

received voluntarily and the medical community must

honor all stated wishes except where those wishes violate

personal ethical responsibility to do no harm. The value

of human life and our responsibility as nurses to do good,

promote health, and serve as a patient advocate should

be the foundation for our practice.

CRITICAL THINKING

1. Describe how you respect a patient’s autonomy in

your daily practice as a nurse.

2. Your patient today is a young woman who sustained

a traumatic brain injury as a result of an assault.

She has significant cognitive impairments and is

dependent for most activities of daily living. She has a

gastrostomy tube in place for nutrition. Her husband

is the suspected assailant; however, criminal charges

were never filed against him. The discharge plan is

for the woman to return home with the husband as

the primary caregiver. What should you consider

when preparing this patient for discharge?

3. You are working in the outpatient clinic. Today your

patient’s family members report her memory is be-

coming more impaired and they are fearful of her

living alone. The physician has recommended the

family pursue obtaining guardianship. The family

asks you about pros and cons of guardianship. What

advice do you have for the family?

4. What are the critical factors to be considered when

allowing a surrogate to make healthcare decisions

on a patient’s behalf?

5. You are a nurse manager. A qualified applicant just

accepted a position on your unit. The human re-

sources representative notifies the nurse has a lower

extremity amputation and uses a prosthesis. What

should you consider when planning the nurse’s ori-

entation?

6. Your patient has a medication ordered that is derived

from human embryonic stem cells. You believe the

use of stem cells is morally wrong. What options are

available to you and how will do decide what option

to pursue?

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References 401

Masters-Farrell, P. A. (2007). Ethical, moral and legal consider-

ations. In K. Mauk (Ed.), The specialty practice of rehabilita-

tion nursing: A core cur riculum (5th ed., pp. 27–34). Glenview,

IL: Association of Rehabilitation Nurses.

Menne, H. L., & Whitlatch, C. J. (2007). Decision-making in-

volvement of individuals with dementia. The Gerontologist,

47(6), 810–819.

National Institutes of Health. (n.d.) Stem cell information—federal

policy. Retrieved September 10, 2010, from http://stemcells.

nih.gov/policy/defaultpage.asp

Redman, B. K., & Fry, S. T. (1998). Ethical conflicts reported

by certified rehabilitation registered nurses. Rehabilitation

Nursing, 23(4), 179–184.

Regents of the University of California. (2004). The disability

rights and independent living movement: Introduction. Re-

trieved from http://bancroft.berkeley.edu/collections/drilm/

introduction.html

Savage, T. A. (2005). Clinical consultations: How do we handle

conflicts with parents over unsafe oral feedings? Rehabilita-

tion Nursing Journal, 30(1), 7–8.

Savage, T. A., & Michalak, D. R. (1999). Ethical, legal and moral

issues in pediatric nursing. In P. A. Savage, T. A., Parson, J.,

Zollman, F., & Kirschner, K. L. (2009). Rehabilitation team

disagreement: Guidelines for resolution. Physical Medicine

and Rehabilitation, 1, 1091–1097.

U.S. Depar tment of Health and Human Services. (200 0). The Ol m-

stead decision fact sheet. Retrieved December 1, 2010, from

http://www.acf.hhs.gov/programs/add/otherpublications/

olmstead.html

U.S. Department of Justice. (2005). A guide to disability rights

laws. Retrieved December 10, 2010, from http://www/ada

.gov/cguide.htm

Chapman, A. R., Frankel, M.S., & Garfinkel, M.S. (1999). Stem

cell research and applications, monitoring the frontiers of

biomedical research. American Association for t he Advance-

ment of Science and the Institute for Civil Society. Retrieved

September 1, 2010, from http://stemcells.nih.gov/info/ethics

FindLaw. (2010). C r u z a n v. D i r e c t o r, Missouri Department of Health.

Retrieved August 1, 2010, from http://caselaw.lp.findlaw.com/

scripts/getcase.pl?court=us&vol=497&invol=261

Garner, B. A. (1999). Black’s law dictionary (7th ed.). St. Paul,

MN: West Group.

Graham-Eason, C. (1996). Ethical considerations for rehabilita-

tion nursing. In S. Hoeman (Ed.), Rehabilitation nursing:

Process and application (2nd ed., pp. 34–46). St. Louis, MO:

Mosby.

Hart, S. E. (2005). Hospital ethical climates and registered nurses’

turnover intentions. Journal of Nursing Scholarship, 37, 173–

177.

Illinois Department of Public Health. (2005). Illinois Department

of Public Health announces new uniform do-not-resuscitate

order form. Press release June 1, 2005. Retrieved April 15,

2010, from http://www.idph.state.il.us/public/press05/6.1.05

.htm

In Re: The Guardianship of Theresa Marie Schiavo from the Cir-

cuit Court for Pinellas County, Florida Probate Division File

No. 90-2988GD-003.

Karen Ann Quinlan Memorial Foundation. (2010). Karen Ann Quin-

lan: She changed the way people looked at life and death. Re-

trieved July 1, 2010, from http://www.karenannquinlanhospice

.org/history.htm

Kirschner, K., Brashler, R., & Savage, T. A. (2007). Ashley X.

American Journal of Physical Medicine and Rehabilitation,

86, 1023–1029.

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