With modern medicine offering countless new technologies and treatments, health
care decision-making can become a difficult and complex task. Indeed, as the
number of options grows, treatment can vary greatly, even among patients confronted
with the same illness. Decisions should be made according to the goals of care.
If cure is the expected goal, one might want to treat a pneumonia aggressively
with antibiotics, but if quality of life is the primary goal, one might not
want to treat that same pneumonia if it occurs as a terminal event in advanced
The best treatment decisions have been described by medical ethicists as a "combination
of medical, emotional, aesthetic, religious, philosophical, social, interpersonal
and personal judgments." As a result, patients must take a more active
role in their health care by bringing their history, values, philosophies, strengths
and emotional needs to the decision-making process. They also must have sufficient
information about proposed treatments before making choices. This practice is
called informed consent. It implies an acknowledgment of the patient's ability
to decide (capacity) and communication of information sufficient to assist the
patient in making the best decision under the known circumstances (informed).
Concept of Competency
In order to be valid, consent to care or treatment must be given by a competent
patient. This implies that the person can understand, reason and evaluate the
consequences of the decision and express his or her desires. The determination
of capacity is a matter of clinical judgment, and there is no consensus on a
set of criteria for its evaluation. Although distinct from capacity testing,
mental status evaluation is often used as a screening tool to assess the patient's
Capacity may fluctuate over time due to fatigue, disease, medication, the environment,
and available information. It is important to remember that consent is specific
to a particular decision and not once and for all. It needs constant evaluation.
Once a patient is determined incompetent, whether the determination is made
clinically or legally, someone needs to be designated to make decisions for
the patient. This person is generically known as a surrogate who can be court-appointed
(guardian) or patient-appointed (surrogate, agent). In their decision-making,
third parties have to take into consideration previously expressed wishes when
available; otherwise, the best interests of the patient will guide the decision.
Truth Telling: Information to Patient
In order for the patient or his representative to decide a course of treatment,
they need to be adequately informed. Physicians and health care professionals
need to guide their patients with knowledge, truth and compassion. They need
to know what information to provide, how much information to provide, and how
to respond to patients who elect not to have too much information.
Truthful telling of the facts is critical to a patient's ability to make an
autonomous and reasonable decision. Choices made irrationally, based on emotions
and/or insufficient information, can lead to dissatisfaction with the medical
system and increased stress.
The information required for an informed consent includes the patient's medical
condition, the stage in the evolution of the disease, proposed treatments and
alternatives, and the benefits, risks and likely outcomes in each case.
Consent is embedded in the doctor-patient relationship and depends largely
upon communication. Technical language, medical uncertainties, limits to understanding
from the patient, culture and fears can all combine to complicate doctor-patient
communication. The mastering of communication skills is important to the practice
of informed consent.
Advance directives have been developed as a reaction to heroic measures in medicine,
mainly to set limits on their use. An advance directive is an oral or written
instruction specifying the wishes of a person concerning medical treatment in
anticipation of future inability to decide. It also enables a person to choose
another person (surrogate) to make decisions under the same circumstances. An
advance directive may be expressed through a living will and/or a durable power
of attorney (DPOA).
Living wills are legal documents that specify what treatments would be acceptable
or unacceptable to the patient in case of incapacity. A living will can be general
or specific, including specific scenarios such as artificial nutrition and hydration
or any treatments. Durable power of attorney (DPOA) is a document in which a
patient appoints another person (surrogate) who will decide about the care of
that person in case of incompetence. Surrogates, also referred to as health
care proxies or agents, may be family members or friends.
Living wills and DPOAs can be arranged through various means according to state
or national laws. The surrogate's decision is called a substituted judgment.
It should take into consideration the best interests of the patient and consider
the patient's past behavior, statements, or choices to determine as accurately
as possible what the patient would have wanted. When previous wishes have been
specifically expressed, they should be honored.
Living wills and DPOAs are complementary, since a living will cannot provide
for every possible situation, and a DPOA cannot determine care without information
about the patient's wishes. Today, living wills are legally recognized throughout
the United States, although Massachusetts, Michigan and New York have not enacted
living will laws. Currently, 48 states and the District of Columbia have legislation
that recognizes the appointment of a health care proxy; Alabama and Alaska are
the exceptions. While most Americans support advance directives, 1996 data show
that only 20 to 25% have them in place (Lederberg MS. Ethical Issues in Oncology:
A Psychological Framework. In Holland JC, ed., Psycho-Oncology. New York: Oxford
University Press, 1998, p. 1098.).
Discussion about advance directives should be included in the treatment plan
and should take place with the surrogate present. Advance directives should
be updated regularly to ensure a person's wishes are current and accurate.
Directives (National Hospice and Palliative Care Organization, NHPCO)
Dying Matters: Raising Awareness of Dying, Death and Bereavement (UK)
End-of-life Decision-Making (Family Caregiver Alliance)
Facing Death (PBS: Frontline)
Life After Loss (AARP)
Planning from Caring Coalition of Metro New York (MS Word™ Document)
Making Decisions with Families at the End of Life (AAFP)
Nursing Home Compare (Medicare)