AND OTHER END OF LIFE DECISIONS
SOURCE: Dept. of Otolaryngology, UTMB, Grand Rounds
DATE: Feb. 28, 1996
RESIDENT PHYSICIAN: Rusty Stevens, M.D.
FACULTY: Francis B. Quinn, Jr., M.D.
SERIES EDITOR: Francis B. Quinn, Jr., M.D.
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"This material was prepared by resident physicians in partial fulfillment of
educational requirements established for the Postgraduate Training Program of
the UTMB Department of Otolaryngology/Head and Neck Surgery and was not intended
for clinical use in its present form. It was prepared for the purpose of stimulating
group discussion in a conference setting. No warranties, either express or implied,
are made with respect to its accuracy, completeness, or timeliness. The material
does not necessarily reflect the current or past opinions of members of the UTMB
faculty and should not be used for purposes of diagnosis or treatment without
consulting appropriate literature sources and informed professional opinion."
Most physicians have at one time or another been involved in the care
of a terminally ill patient near death. Often these patients become unable
to competently make the complicated decisions surrounding the question of
when to withhold or withdraw life sustaining technology. It is during
these times that both physicians and family members often become
uncomfortable as they make decisions based on what they believe the
patient would want. The purpose of this presentation is to provide
information about the legal issues surrounding end of life decisions as
well as review specific UTMB policies related to this topic.
History of the legal aspect to end of life decisions:
As medical technology has increased over recent decades, so
too has the complexity of end of life decisions. Initially these
questions were taken to the courts in individual cases and case
law developed. With the celebrated case of Nancy Quinlan in the
1970's, the public became acutely aware of and concerned about
the legal and ethical issues associated with a prolonged death.
From these concerns, legislation began to develop in many states
to provide patients with more control over their own death. Both
case law and legislative law will be discussed.
Case Law related to end of life decisions:
Case law (usually civil but occasionally criminal) has been
based in large part on the first two principles of bioethics
which are autonomy and beneficence.(2) The principle of autonomy
maintains that a patients wishes should be honored at all times.
No other person or institution should attempt to intervene, even
if the decision is not in the patient's best interest. The
principle of beneficence states that what is "best" for the
patient should be attained (i.e. highest level of medical care),
regardless of the patients or others desires. When these
principles conflict, the courts usually follow the principle of
autonomy as long as the patients wishes can be reasonably
established. In the case of Bouvia v. California Superior Court,
the court upheld a competent 28 year old arthritic quadraplegic's
right to refuse oral feedings and have her nasogastric feeding
tube removed. In this case, the court actually upheld the
patient's right to dictate care surrounding her death by
requiring the hospital to continue to treat her and provide pain
control while she starved herself.
In addition to case law, this principle has been upheld by
several organized committees formed to develop policy related to
death and dying. In March 1986, the Council on Ethical and
Judicial Affairs of the American Medical Association declared:
"The social commitment of the physician is to sustain life and
relieve suffering. Where the performance of one duty conflicts
with the other, the choice of the patient, or his family or legal
representative if the patient is incompetent to act in his own
behalf, should prevail". A Presidential Commission for the Study
of Ethical Problems in Medicine and Biomedical and Behavioral
Research determined: "The voluntary choice of a competent and
informed patient should determine whether or not life-sustaining
therapy will be undertaken, just as such choices provide the
basis for other decisions about medical treatment. ..... Health
care professionals serve patients best by maintaining a
presumption in favor of sustaining life, while recognizing that
competent patients are entitled to choose to forego any
treatments, including those that sustain life."
Finally, the principle of autonomy can still be applied even
if the patient becomes incompetent and can no longer directly
indicate his wishes. This is accomplished through a process
called "substituted judgement" which essentially is an effort to
determine what the patient would do if he were still competent.
This is often complicated and requires knowledge of the patient's
past decisions as well as their beliefs and religion. The
patient's family is usually the most reliable source for this
information. Caution should be exercised when handling an end of
life situation in this manner because of its speculative nature
as well as its foundation in case law. For example, in the case
of Barber v. California Supreme Court, two attending physicians
were convicted of murder after they ordered feedings discontinued
(at the family's request) for a patient in a persistent
vegetative state. The case was brought to the attention of the
District Attorney by a nurse involved in the patient's care who
disagreed with the decision to discontinue the feedings.
Although the convictions were overturned on appeal, the case
illustrates well the hazards of depending on case law and is a
stark contrast to the decision in Bouvia v. California Superior
Legislation related to end of life decisions:
A more precise way for patients to ensure that their wishes
are known and followed is to issue an advance directive. An
advance directive is defined as a written instruction, such as a
living will (directive to physician in Texas) or durable power of
attorney for health care recognized under state law, which
relates to the provision of care when the individual is
incapacitated. Advance directives are derived primarily from
legislative law that has been passed since the widely publicized
case of Nancy Quinlan.6 These laws differ widely from state to
state but in general, as they have been amended, have become more
"user friendly" for both patients and physicians. Additionally,
they provide a much clearer and well defined legal roadmap
through these difficult situations. The specifics of applicable
Federal and Texas law will be discussed below.
Patient Self-Determination Act:
The federal Patient Self-Determination Act became effective
in December of 1991 and was created to ensure that patients were
informed of their right to accept or refuse medical treatment and
their right to execute an advance directive.3 The Act requires
that written information concerning these rights be given to all
adult patients upon admission to the hospital or nursing home,
enrollment in a HMO, or upon receiving initial care from a home
health agency or hospice program. Compliance with the Act is
required for participation in the Medicare program.
Additionally, the hospital is required to document in the
patient's medical record whether or not the patient choose to
issue an advance directive and must have a written policy not to
condition the provision of care based on this decision.
Hospitals must also have programs to educate staff as well as the
community on issues concerning advance directives.
Texas Natural Death Act (TNDA):
This Act, initially passed in 1977 and subsequently amended
several times, provides for the execution of a Directive to
Physicians (Living Will) through which a person can instruct his
physician in advance to withhold or withdraw artificial means of
life support when the application of such measures serves only to
postpone the process of dying. To become effective, the
Directive must be signed by the declarant and witnessed by two
qualified witnesses. To protect the patient, there are very
clear requirements for being a witness. The witness must not be
related by blood or marriage and must not have a claim to the
declarant's estate. The patient's attending physician and the
physician's employees as well as hospital employees if they are
involved in the patient's care or the hospital's finances are
excluded from being witnesses. Also other patients are not
qualified witnesses. A Directive may be given by verbal or other
nonwritten means as long as the attending physician as well as
two qualified witnesses are present. This should be documented
and signed in the chart.
Once signed, the Directive only becomes operative when the
patient is diagnosed and certified in writing by two physicians
(one being the attending physician) to have a terminal condition.
The Act defines terminal condition as an incurable or
irreversible condition caused by injury, disease or illness that
would produce death without the application of life-sustaining
procedures, according to reasonable medical judgement, and in
which the application of these procedures serves only to postpone
the moment of death. Life-sustaining procedures are defined as
artificial measures to restore vital functions that, if not
restored, would lead to death in a relatively short time. The
act makes clear that medication or procedures performed to
provide comfort or alleviate pain are not included as "life-
The TNDA also provides for cases in which an incapacitated,
terminally ill patient has not issued an advance directive of any
kind. In these situations, a legal guardian or family members,
in conjunction with the attending physician, may make decisions
regarding withholding or withdrawal of life-sustaining care. If
no guardian was named, two family members(if available) and the
physician may make decisions in the presence of two qualified
witnesses. The order of priority for family members is spouse,
adult children, parents, nearest living relative. The
requirements for witnesses are the same as for a Directive to
The TNDA also protects patients and physicians in several
ways. First, it ensures that a patient cannot be discriminated
against in any way for signing or for refusing to sign a
directive. This includes both actual medical care as well as
insurance issues. Secondly, a physician is protected for civil
or criminal action as long as there is no evidence of negligence.
The law specifically states that removing life support systems
under the terms of a directive does not constitute assisting
suicide. If a physician or health care facility has religious or
ethical beliefs that do not allow compliance with the patient's
Directive, they are not required to do so. However, the patient
should be informed in a timely fashion and attempts made to
transfer their care to another physician or facility that will
honor the directive.
A Directive to Physicians may be revoked at any time
regardless of the patient's mental status by any verbal or
written communication to the attending physician. The expressed
desire for life-sustaining procedures will always, at any time,
override any advance directive. The physician will then ensure
that all pages of the Directive are stamped with "void".
Durable Power of Attorney for Health Care:
A second type of advance directive is the Durable Power of
Attorney for Health Care (DPAHC). This is a broader directive
that allows for the selection of an agent to make health care
decisions for the patient(principal) in the event they become
incompetent.(1) Day-to-day health care decisions can be made by
the agent as well as decisions regarding life-sustaining
procedures. A DPAHC also differs from a Directive to Physicians
in that the principal does not have to be suffering from a
terminal illness for it to become active. Once signed by the
principal and two qualified witnesses, a DPAHC becomes active
when the principal's attending physician states in writing that
in his/her opinion, the principal lacks the capacity to make
health care decisions. If the principal regains capacity at a
later date, the DPAHC becomes inactive again. Again for the
patients protection, there are requirements to be an agent. They
should be someone close to the principal who knows the
principal's wishes and beliefs as well as someone the principal
trust to make decisions in his/her best interest. The agent must
be at least 18 years of age and cannot be the principal's
attending physician or residential care provider. Employees of
the physician or residential care provider are also excluded
unless related to the principal. An alternate agent may also be
designated. In addition to the authority to make decisions for
the principal, the agent may review or request release of the
principal's medical records and may consent to most medical
The agent may not consent to voluntary inpatient
mental health services, convulsive treatment, psychosurgery,
abortion, or the discontinuance of care intended to provide
comfort. The agent is expected to make decisions based on
his/her knowledge of the principal's wishes, or if not known, the
agent's assessment of the principal's best interest. It is not
the physicians duty to confirm the agent's compliance with these
instructions. As with a Directive to Physicians, a DPAHC may be
revoked by any oral or written act by the patient indicating a
desire to revoke the document. The principal may revoke the
DPAHC for any reason regardless of his/her mental status.
Additionally, a DPAHC is revoked if a subsequent document is
executed or by divorce if the spouse was the agent.
If a patient has both a DPAHC as well as a Directive to
Physicians, the document executed later in time controls.
However, if a patient wants to have an agent to make daily care
decisions but wants to make sure that life-sustaining procedures
are not requested by the agent, the DPAHC can specify that the
directive to physicians must be followed.
The adult spouse, parents or legal guardian of a person less
then 18 years of age may execute a Directive to Physicians on
behalf of the minor. However, the oral desires of the minor
should supersede a directive completed on the minors behalf.
Durable Power of Attorney for Health Care does not apply to
A pregnant woman may execute either advance directive at any
time but life-sustaining procedures may not be withheld or
withdrawn during pregnancy.
TDCJ patients are given the same considerations regarding
advance directives as other adult patients. The TDCJ Health
Services liaison physician and administrator should be notified.
Talking to a patient About advance directives:
Although most people agree with the concept of advance
directives, only a small portion of the population has actually
completed a directive. While there are many reasons for this
discrepancy, one likely cause is that physicians often fail to
talk to their patients about directives until they become
critically ill. As mentioned above, there are strong reasons for
doctors to have patients complete a directive. Some primary care
physicians have taken initiative and make a special point to have
a detailed discussion on the topic with their healthy patients.4
Although this approach is not practical for most otolaryngology
patients, there are certain patients in whom this approach might
be helpful (i.e. Cancer patients). Regardless of the timing, if
advance directives are discussed, the physician should take time
to ensure that the patient is given the information in an
unbiased, thoughtful and considerate way.
Specific UTMB procedures:
Initiating Advance Directives:
Within 24 hours of admission, the adult inpatient will
receive (usually from the admitting RN) written information
regarding his/her rights under the federal Patient Self-
Determination Act as well as a brochure explaining both types of
advance directives. The patient will also be asked whether they
have an advance directive and their answer will be recorded in
their chart. If the patient has further questions, they will be
directed to appropriate assistance. Appropriate forms for
execution of an advance directive are also provided. (NOTE:
Witness qualifications are included on each form.)
Withholding or withdrawing life support form a patient (WLS):
The patient's terminal condition(as defined above) must be
certified by two physicians (including one faculty) who have both
examined the patient. If the faculty physician is not available
from 5 p.m. to 8 a.m., a telephone certification may be given but
the progress note must be countersigned the next day. Otherwise,
a dated and timed statement of the patient's condition will be
entered in the progress notes and should include:
- (1) diagnosis, prognosis and diagnostic procedures utilized
- (2) physical exam
- (3) summary of treatment
- (4) treatment options
- (5) description of current life-sustaining procedures
The patient's physician will obtain one of the following:
- (1)Directive to Physicians
- (2)Durable Power of Attorney for Health Care
- (3)Request to Withhold or Withdraw Life-Sustaining
Procedures for Terminally Ill Patient (This document is used if
the patient has not completed an advance directive)
The Progress note will state who requested withdrawal or
withholding life support. If this is someone other than the
patient, there should also be documentation that the patient is
unable to communicate.
The physician will attempt to confirm that the patient's
wishes have not changed and that a previously issued directive
has not been revoked.
The Do Not Resuscitate orders may be written by either a
resident or faculty. Likewise, withdrawal of Life Support orders
may be by either faculty or residents and should state which
measures are to be discontinued.
Pronouncement of Death:
- 1. Upon irreversible cessation of spontaneous respiratory
and cardiac function
- 2. If (1) is precluded by life support, upon irreversible
cessation of brain function.
NOTE: Once death has been established, life support can be
withdrawn without an advance directive or the family's approval.
End of life decisions and the decision to initiate or
withdraw life-sustaining technology can be difficult. Although
it is generally held that the individual should make these
decisions, this is not always possible and is not always
supported by case law. Legislation in recent years has been
passed to provide the public with vehicles to make these
decisions in advance. The two main types of advance directives
are directives to physicians (living will) and durable power of
attorney for health care. In general these provide better legal
direction as well as protection for both patient and physician.
This in turn should provide a more relaxed doctor-patient
relationship as well as ensuring that the patient's desires are
- 1. Durable Power of Attorney for Health Care - Patient and Health
Care Provider Information. Texas Medical Association Publication.
2. Furrow BR, Johnson SH, Jost TS, and Schwartz RL. Health Law -
Cases, Materials and Problems. St. Paul: West Publ.;1987:826-954.
3. Implementation of the Patient Self-Determination Act-A
Comprehensive Analysis of and Action Kit for the New Federal
Law. Texas Hospital Association, Texas Medical Association.
4. Trombatore K, With hopes for a very good death. Texas
5. UTMB Handbook of Operating Procedures. Policy 9.15.6,7,8.
6. Winslade WJ. Legal regulation of terminal care: options and
obstacles. Texas Medicine. 1991;87;2:70-75.