ETHICAL AND LEGAL ISSUES
Your physician and other health care providers use medical and
scientific knowledge along with clinical judgment and expertise to
provide quality healthcare to keep you functioning and independent
for as long as possible. However, in some situations, providing the
best care requires choosing among conflicting responsibilities,
values, and principles. For example, it may not be possible to
provide both safety and independence for a person who has serious
mental problems. Moving into an institution would increase safety
but reduce independence, while staying at home would maintain
independence but at an increased risk of injury. There are legal and
ethical guidelines that help address such dilemmas, but reaching
decisions in individual circumstances is still often difficult.
Regardless, your personal wishes are the most important part of the
decision.
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Respecting Your Choices
 Informed consent
 Decision-making capability
Having Someone Make Decisions for You
 Advance directives
 Living wills
 Durable power of attorney for health care
 Problems with advance directives
 The importance of communication
 Choosing a surrogate decision maker
Acting in Your Best Interests
Preventing Harm
 Placement issues
 Abuse of older adults
 Guardianship
 Decisions for people in nursing homes
Life-Sustaining Treatments
Do-Not-Resuscitate Orders
Withdrawing Treatment
Tube Feeding
Active Euthanasia
Assisted Suicide
Respecting Your Choices
Except under extraordinary circumstances, you have the legal right
to make decisions about your body and your medical care. Ideally,
these decisions should be made by capable, informed patients after
discussion with their physicians and other health care providers.
This underlying principle of "informed consent" is a legal and ethical
practice that underlies medical care and research in the United
States. It is based on our society’s respect for independence and
self-determination.
Informed consent
Informed consent is a legal doctrine stating that you have the
power to choose among medically reasonable plans for your care.
Informed consent requires effective communication between you
and your doctor, and to be able to make informed choices, you
need to discuss many things (as often as needed), including the
following:
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your diagnosis
the overall outlook (ie, prognosis)
the nature of the recommended test or treatments
the various alternatives
the risks and benefits of each alternative
likely outcomes of each alternative
Informed consent does not mean that you can or should dictate
your care. If a person requests tests or treatments that the medical
profession considers useless or harmful, physicians have no
obligation to comply. Your health care providers have a duty to use
their skills for your benefit and not to harm you. If you and your
health care provider disagree about the type of care that you should
receive, you should discuss the situation further so that your
concerns are made clear and you can reach a decision that is
mutually acceptable.
Informed consent for research
Research into the diseases of aging is needed to improve treatment
and increase functional independence, especially in areas like
dementia and other mental health problems. However, informed
consent becomes especially important when people are asked to try
experimental or unproven treatments for research purposes.
Unfortunately, truly informed consent can be difficult for older
people, because they may have a hard time understanding the risks
and benefits of the research. This is especially true for those who
have some mental impairment. People living in nursing homes and
other institutions are also a vulnerable population, because they
may feel pressured and hesitate to speak up with an objection.
Older adults should ask as many questions as necessary so that
they understand the potential risks and benefits of experimental
treatments. You always have the right to refuse without any
repercussions.
Decision-making capability
The process of informed consent makes sense only for people who
have the ability to make informed decisions. Adults are presumed to
have this capacity when they reach the "age of majority" (usually
18 years of age). This does not change unless the individual is
determined to be "incompetent or incapacitated" by a court of law.
The terms "incompetent or incapacitated" are legal terms and apply
specifically to legal cases in court.
In practical terms, physicians are sometimes asked to evaluate a
person’s capacity to make decisions. If a physician believes that a
person lacks the ability to make informed decisions about medical
care, that person is deemed "incapable." This is significant because
it means that decisions will then be made by someone other than
the patient.
The term "diminished capacity" generally refers to specific types of
decisions, rather than to overall inability to make any decision
(Table). For example, you may be capable of making decisions
about medical care, but not about finances, or vice versa. This
selective definition of capacity (often referred to as a "sliding scale")
affords people more protection and self determination. Of course,
people who are unconscious or severely mentally impaired may lack
capacity to make any decisions.
Judging the Capacity to Make Decisions
Medical decisions
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ability to understand relevant information
ability to understand the consequences of the decision
ability to communicate a decision
Decisions of self-care
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ability to care for oneself or
ability to accept the needed help to keep oneself safe
Finances
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ability to manage bill payment
ability to appropriately calculate and monitor funds
Last will and testament
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ability to remember estate plans
ability to express logic behind choices
Your capacity to make decisions about medical care requires that
you realize that there are choices regarding the nature of the
recommended care, the alternatives, the risks and benefits, and the
likely consequences. This ability to understand the situation may
change over time. For example, a person with delirium may be
mentally clear in the morning but confused in the evening. Imagine
having a high fever that clouds your thinking and makes you feel
disoriented. When you are capable of making informed decisions,
your choices should be respected. If there are times when you are
not capable of making informed decisions, these decisions should be
postponed if possible until you have regained your decision-making
capacity.
People may be given a formal test to gauge their mental status
when their capacity is questionable. However, even if someone
performs poorly on a mental-status test or has impaired memory,
they may still have the capacity to make informed decisions. In
these situations, extra care may be needed to make sure the
person understands the risks, benefits, and consequences of the
alternative plans of care.
It is important not to confuse decision-making capacity with socalled "rational" decisions. Decisions are often based on cultural,
ethnic, or religious values and beliefs that vary from person to
person. What is rational to one person might not seem rational to
another. For example, a Jehovah’s Witness may view a blood
transfusion as unacceptable, even if the alternative is death.
Requiring rationality would disqualify people who make highly
personal or unconventional decisions. As one court declared in a
case that involved the refusal of treatment, beliefs that are "unwise,
foolish, or ridiculous" do not render a person incompetent.
Having Someone Make Decisions for You
If you lose the capacity to make decisions, someone will have to
make decisions on your behalf. In this case, the person you
designate as a stand-in (ie, surrogate decision maker) should try to
comply with any wishes you expressed while you were still capable
of making decisions. Your expressed wishes are legally and ethically
more important than what others want for you, even if they feel
that they are acting in your best interests. Two common types of
advance directives (ie, advance care plans) that express your wishes
are living wills and durable power of attorney for health care. (States
have varying terms to designate durable power of attorney for
health care, including health care proxy, health care declaration,
etc.) It is also important to remember that advance directives have
some limitations.
Advance directives
Whenever possible, health care providers should respect the
informed choices that you have expressed while you were still
capable of making decisions. Following these advance directives
demonstrates respect for your individuality and self-determination,
and is a legal and ethical obligation. Following your advance
directives is preferable to following the choices of others, such as
family members or other caregivers, unless that is your wish.
Most commonly, advance directives come out of the conversations
that you had with relatives, friends, and health care workers while
you were still capable. However, these should be documented
carefully so that your wishes are specific, clear, and available later
if needed. You should provide advance directives in writing
whenever possible, because written directives clearly reflect your
intention to direct future health care and cannot be readily
challenged in court.
Living wills
Laws or legal opinions that authorize living wills have been enacted
throughout the United States. These are often called natural death,
death with dignity, or right-to-die laws. Generally, these laws allow
you to direct health care providers to withhold or withdraw
treatment that is keeping you alive if you become terminally ill and
are no longer capable of making decisions. In a few states, an
individual may also appoint surrogate decision makers. Legal immunity
is given to caregivers who comply with an appropriately drafted
living will.
Durable power of attorney for health care
The durable power of attorney for health care is more flexible and
comprehensive than a living will. It allows you to designate a
surrogate decision maker, presumably a friend or relative, to make
the medical decisions if you lose the ability to make them yourself.
You give the surrogate your informed consent (or refusal) while you
are still capable. You should discuss with your surrogate ahead of
time the types of treatment(s) you would or would not want in
specific situations so that your surrogate has some guidelines if the
need arises.
Problems with advance directives
Advance directives have limitations. For example, an older adult
may not fully understand treatment options or appreciate the
consequences of certain choices. Sometimes, people change their
minds after expressing advance directives and forget to inform
others. Many times, advance directives are too vague to guide
clinical decisions. For example, general statements rejecting "heroic
treatments" are vague and do not indicate whether you want a
particular treatment for a specific situation (such as antibiotics for
pneumonia after a severe stroke). On the other hand, very specific
directives for future care may not be useful when situations change
in unexpected ways. Similarly, new medical therapies may have
become available since an advance directive was given. You and
your health care provider can do a great deal to avoid these
problems by discussing advance directives with each other.
The importance of communication
Good communication can resolve many problems posed by advance
directives. You and your health care provider should routinely share
information on advance directives. A straightforward question you
can ask to open the topic is: "Can we talk about how decisions will
be made for my medical care in case I become too sick to talk to
you directly?"
Ask your health care provider about situations that commonly
develop with your particular illness or condition. Ask questions
about the various treatments and treatment options. Let your
health care provider know your wishes, including your designation
of a surrogate decision maker. Also tell your doctor the amount of
discretion that you want the surrogate to have and how you will let
your surrogate know if you change your mind about something. It is
also important for you to have periodic discussions about these
issues with family members and friends.
Choosing a surrogate decision maker
Traditionally, family members act as surrogate decision makers (or
stand-ins) for incapacitated individuals, because most probably they
best know the person’s preferences and will act in their best
interests. Family members are also normally consulted by the
health care provider. However, the health care provider may
sometimes decide that decisions by family members are
questionable because of conflicting personalities, values, or
interests. In addition, some family members may be estranged or
unwilling to make decisions, or they may disagree among
themselves. In other cases, older adults have no surviving relatives.
When there are no relatives or friends to represent you, it may be
that your physician (or other health care provider) is the next best
choice as your surrogate decision maker. Your physician
understands the medical procedures and your condition. Your
lawyer is another possibility, but bear in mind that the courts can
be cumbersome, expensive, and slow. Furthermore the adversarial
legal system and media publicity associated with a case may
inappropriately influence both family members and health care
providers, or lead to medically unrealistic decisions.
Acting in Your Best Interests
If you have not given advance directives or appointed a surrogate
decision maker, health care providers may have to base decisions on
what is in your "best interest," by weighing the benefits and
possible problems of treatment. This is a complicated and often
controversial process that requires dealing with such personal
factors as pain and suffering, safety, and loss of independence,
privacy, and dignity. Well-meaning third parties may disagree on
how much weight to give to each of these factors, which are often
summarized by the phrase "quality of life." In addition, quality-oflife judgments based on assessments of third parties may be unfair
or discriminatory, particularly if social worth or economic
productivity is considered. For example, life situations that would be
intolerable to young, healthy people may be acceptable to older,
debilitated people, and vice versa.
Preventing Harm
Health care providers have a duty to use their expertise for the
benefit of the people in their care. However, you retain the right to
refuse treatments that your health care provider considers to be in
your best interest. Again, good communication with your health care
providers can improve your mutual understanding of risks, benefits,
and underlying beliefs. (See also Communication.)
Placement issues
Preventing harm to an individual is often raised in decisions to place
someone in a nursing home. An older adult may wish to remain at
home, but family member or caregivers may override this decision
if they believe that living independently is not safe. However, the
crucial ethical question is whether the older adult is capable of
making an informed decision about where to live. If so, his or her
decision should be respected, even if others believe that it is unwise
or foolish, and even if it puts that person at greater risk. Caregivers
can try to arrange for in-home supportive services that may greatly
improve the situation and decrease risk.
Abuse of older adults
Family members or other caregivers can sometimes become
abusive for a variety of reasons. These may include feeling
overwhelmed and burnt out by caregiving responsibilities, lacking
appropriate caregiving skills, or having no break from caregiving.
The duty to protect older people often justifies intervening in these
situations. Older adults may not be able to protect themselves or
know how to get help. They may also fear retaliation or be ashamed
to admit the abuse. Any concerned person who suspects abuse has
an ethical duty to try to determine if the victim has the capacity to
make decisions, is informed, and is not being coerced. Some states
require physicians and caregivers to report suspected abuse to a
protective service agency.
If the older person cannot function without extensive care and must
remain at risk, support services may be appropriate. These may
include obtaining home care services, counseling the abusive
caregiver, or moving the older person to another residence.
Supporting services should be offered, although capable individuals
may refuse the assistance. If a person is not capable and the abuse
seems clear, the physician or caregiver must consider a report to
adult protective service agencies or a petition to the court for a new
guardian. (See also Elder Mistreatment.)
Guardianship
Some older people cannot manage their finances or provide
themselves with food and shelter. Sometimes, relatives or friends
make informal arrangements to help these individuals. In other
cases, a capable person has executed a durable power of attorney
that appointed another person to handle his or her affairs. In still
other cases, it is necessary to ask the courts to appoint a guardian,
as when property must be managed or sold to pay for long-term
care.
In guardianship hearings, relatives or other petitioners (eg, social
service agencies or health care providers) must demonstrate that
the person is no longer able to safely manage his or her affairs and
needs. If the person is found incompetent or incapacitated, the
court appoints a guardian.
All states allow the courts to establish limited guardianships
(sometimes called conservatorships) and unlimited guardianships
(sometimes called committeeships). A limited guardianship gives
the guardian the power to take charge of a specific area that the
older person is no longer able to manage (eg, finances). An
unlimited guardianship strips the older person of all legal authority
and gives the guardian the power to make all the decisions about
the older person’s life in matters that affect property, residence,
medical care, and personal relationships. Most states prefer limited
guardianships, because an unlimited guardianship requires that the
court find that the person is legally incompetent or incapacitated in
all areas of decision making.
Decisions for people in nursing homes
Nursing-home residents may need additional safeguards when
decisions about life-sustaining treatments are made. These people
may not have close relatives to act on their behalf, and their
relationships with health care providers may be superficial. There
are also fewer caregivers involved in decisions at nursing homes
compared with hospitals. In addition, substandard care is
sometimes a problem in nursing homes.
The decision to transfer a nursing-home resident to a hospital when
their condition worsens is a common dilemma. This is because the
goal of treatment for many residents is to relieve discomfort rather
than to prolong life. If individuals or their surrogates turn down the
transfer to a hospital, their wishes should be respected. It should be
a routine part of nursing-home care to discuss these decisions well
in advance.
Federal legislation now requires inquiry into advance directives for
all patients in institutions (eg, nursing homes) that receive federal
funds. This leads to a more systematic approach to discussions
about treatment status. Since this law was passed, nursing homes
have transferred fewer patients to acute-care hospitals, while
maintaining patient and family satisfaction with care.
Life-Sustaining Treatments
Advances in medical technology have often created medical
dilemmas. For example, health care providers may be able to
successfully treat a sudden complication in a seriously ill person,
but restoring function and improving the underlying disease may be
impossible. In such a situation, treatment that only prolongs life
may be appropriately withheld. In fact, the doctor may refuse
treatment under a variety of situations:
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there is no specific medical rationale for the treatment
the treatment has proved ineffective for the person
the person is unconscious and will likely die in a matter of
hours or days even if the treatment is given
the expected survival is virtually zero
The doctor’s discretion in these matters may vary widely across the
United States.
An informed person who is capable of making medical decisions
may refuse life-sustaining treatment, such as cardiopulmonary
resuscitation (CPR), intensive care, transfusions, antibiotics, and
artificial feedings. An informed refusal should be respected, even if
the person’s life may be shortened as a result and even if the
person is not terminally ill or in a coma. When people are not
capable of making decisions, two questions need to be considered:
1. What standard should be used?
2. Who should make the decisions?
Do-Not-Resuscitate Orders
Cardiopulmonary resuscitation (CPR) may be an effective treatment
for unexpected sudden death, but it is not effective for people
whose death is expected. Older adults generally do poorly after CPR
because of serious illnesses and decreased functional status. In
fact, less than 10% of people over 70 survive to be discharged from
the hospital after CPR.
When CPR is medically pointless and thus ethically inappropriate, a
patient should not be offered the choice between CPR and no CPR.
Instead, the physician should generally write a do-not-resuscitate
order and explain why CPR is not indicated. In some settings,
however, the law may require that physicians offer the option of
CPR even when it would be pointless. When CPR might be of
benefit, the physician must make sure that all concerned are aware
that the likelihood of survival is low even if CPR is administered.
Many people with chronic illnesses do not want CPR, and their
informed refusal should be respected. The attending physician
should indicate the reasons for the order and plans for further care
in the medical record. Note that a do-not-resuscitate order means
that only CPR will not be performed–other treatments may still be
given. Discussions with your health care providers about do-notresuscitate orders are excellent opportunities to review your total
plan of care, including supportive care and appropriate treatments
that would be continued after the do-not-resuscitate order takes
effect.
Withdrawing Treatment
Strange emotional feelings are a natural part of decisions to stop,
withdraw, or withhold care. We are torn between the impending
sense of loss of our loved ones and our desire that their suffering be
relieved and their dignity maintained. Regardless, there is little
point in continuing a treatment that is not effective.
Often, people make a distinction between stopping treatment and
not starting it in the first place. For example, some people are
willing to withhold mechanical support of breathing (ie, use of a
ventilator), but are reluctant to discontinue it once it has been
started. However, logically, ethically, and legally there is no
difference between not starting treatment and stopping it. If you
feel that there is an important emotional difference for you between
stopping a treatment and not starting one, you should explicitly
discuss this with your physician.
Tube Feeding
Tube feedings clearly benefit people who want or agree to this
treatment. In addition, feeding provides more time to diagnose and
treat underlying conditions. However, providing artificial nutrition
and hydration (ie, fluids) is ethically and legally controversial in
severely demented or debilitated individuals who cannot or will not
eat. The feeding of helpless people is overloaded with symbolic and
emotional significance. Also, it is unknown if these individuals suffer
hunger or thirst if tube feedings are withheld.
Artificial feeding can become an even greater problem in severely
mentally disturbed individuals who consistently refuse food offered
by hand or who are unlikely to suffer hunger or thirst. Tube
feedings can also cause medical complications, such as pneumonia
if the artificial nutrition is breathed into the lungs.
Restraints
Because individuals often pull out feeding tubes, demented
individuals on tube feedings are often physically restrained (ie,
strapped down). This removes what little dignity and independence
these people have left. The situation is worsened because demented
people usually cannot understand how the treatment benefits them.
Restraints are also difficult to consider as humane care. Sedation or
"chemical restraint" might seem more acceptable on the surface,
but these medications also rob people of dignity and often have
unacceptable side effects.
When a person pulls out a feeding tube, everyone involved should
reconsider whether the feeding tube is appropriate. If so, a more
permanent measure should be considered, such as a tube placed
directly in the stomach or intestine. If the goal is to provide
comfort, then giving the person more direct attention and affection
may be better than trying to increase the intake of nutrients
through tube feeding.
The use of restraints in the long-term-care setting has become
closely regulated and monitored. Physical restraints have little, if
any, value in preventing injuries from falls, and less restrictive
alternatives are usually available. Physicians and surrogate decision
makers should extensively discuss the legal and ethical implications
of using physical or chemical restraint.
Active Euthanasia
Active euthanasia (also called mercy killing) is illegal in the United
States. Requests for it generally arise because individuals suffer
uncontrolled pain, demand more control over their care, or fear
abandonment. However, many terminally ill people who have
requested euthanasia change their minds after pain has been
relieved. Self-administered pain medication (eg, by a hand-held
morphine pump) can help to both relieve pain and provide a feeling
of control, which is central to a person’s comfort.
There is great potential for abuse with active euthanasia. Because
of this, opponents say that allowing voluntary euthanasia might all
too easily lead to involuntary euthanasia of helpless people. Also,
some feel that physician involvement in euthanasia may undermine
trust in doctors, because doctors should be viewed as healers, not
life takers. However, others believe that there are circumstances
when it may be more compassionate to carry out a request for
active euthanasia than to have the person continue an existence
that is degrading. Such exceptional circumstances include cases in
which severe symptoms can be relieved only by causing
unconsciousness.
Active euthanasia should be distinguished from the withholding or
withdrawal of treatment, which is sometimes termed "allowing to
die" or "passive euthanasia." Concern that active euthanasia is
unethical should not lead health care providers to continue useless
treatments or to reject requests by informed individuals to withhold
treatment.
Assisted Suicide
Statistically, older white men are at a greatly increased risk for
suicide. Most suicides are impulsive acts that are not well thought
out. Also, people who seriously consider suicide usually suffer from
depression. Because individuals who are incapacitated by
depression cannot make informed decisions, family and friends are
quite likely to get involved and seek medical advice. Physicians
have traditionally felt it their duty to intercede to prevent suicide. In
addition, many physicians believe that assisted rational suicide is
unethical for the same reasons that they oppose active euthanasia.
That is to say, they feel that there is a great danger of abuse, that
assisted suicide does not fit the role of the physician, and that it
undermines a person’s trust in doctors.
For some people, however, suicide might be considered a rational
choice. For example, a rational person might consider suicide if he
or she has widespread cancer and unbearable symptoms that
cannot be improved with medication. A person in this situation may
feel that continuing to live with a progressive illness of this type is
degrading, and may want to have control over his or her death. He
or she might ask the physician how to end their life, or request the
medications with which to do so. These are matters of individual
conscience.
In most states, the law prohibits assisted suicide. However, the US
Supreme Court has decided that physician-assisted suicide is not
necessarily unconstitutional, leaving each state to settle the issue
for its residents. For example, physician-assisted suicide has been
legal in Oregon since 1997, although experience has shown that it
is a rarely used alternative. During the 3 years after this
legalization, only 91 people opted for assisted suicide out of 90,000
who died in Oregon during that time.
This Chapter was reviewed by:
Debra Sacks, Esq.
Sadin Law Institute
Brookdale Center on Aging of Hunter College
AGS Foundation for Health in Aging
The Empire State Building, 350 Fifth Avenue, Suite 801 New York, NY 10118
(212) 755-6810 Tel, (212) 832-8646 Fax, (800) 563-4916 Toll Free, staff@healthinaging.org.