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Guidelines for Decisions to Limit Life-Sustaining Medical Treatment (8.25)

Guidelines for Decisions to Limit Life-Sustaining Medical Treatment (8.25) - Policies, Clinical, UWHC Clinical, UWHC-wide, Patient Care

8.25

As of January 1, 2017, this policy applies to the operations and staff of legacy UWHC. Effective July 1,
2015, the legacy operations and staff of UWHC and UWMF were integrated into the University of
Wisconsin Hospitals and Clinics Authority (UWHCA). All policies are being transitioned to apply
UWHCA-wide, but until future revision to this policy #8.25, it applies only to the operations and staff of
legacy UWHC.

8.25 Guidelines for Decisions to Limit Life-Sustaining Medical Treatment
Category: UWHC Administrative Policy
Policy Number: 8.25
Effective Date: January 1, 2017
Version: Revision
Section: Patient Care (Hospital Administrative)

I. PURPOSE

These guidelines are for use in resolving issues on the limitation of life-sustaining medical treatment when patients,
physicians, other health care providers or families raise questions as to appropriate treatment. The guidelines
explain the respective rights and obligations of the physicians and patients and provide a process of informed
decision-making, which should result in a decision consistent with the patient's preferences or, if not known, in the
best interest of the patient.


II. POLICY

General Principles:
A. Adult patients with decisional capacity (See VI.D., definition of decision-making capacity) have the
fundamental right to accept or decline proposed treatments. Such patients have the right to plan ahead
for their own health care by formal or informal advance directives.
B. Physicians, nurses and staff have an obligation to provide patients and/or their families with information
necessary for making informed decisions about limiting life-sustaining medical treatment. Discussions with
patients on these matters shall occur as early as possible in the course of their illnesses.
C. The individual patient's preferences are central to the decision to limit life-sustaining medical treatment.
Decisions must be based on the individual patient's values and goals.
D. There are circumstances under which it is ethically and legally permissible to limit life-sustaining medical
treatment. These circumstances are addressed in this policy.
E. When the adult patient (or the patient's authorized representative for a patient without decision-making
capacity) requests medical treatment that the physician determines would be of no medical benefit (i.e.,
medical interventions which would not be physiologically effective in prolonging life or alleviating pain),
such determination as to whether to provide or decline the treatment should be discussed with the patient
(or patient's authorized representative) and the patient's other health care providers. (See VI.G.,
definition of medically ineffective treatment.)
F. Staff should be sensitive to cultures in which family decision-making is preferred over the individual.
Patients who have decision-making capacity and wish to engage in joint decision- making with their family
should be allowed to do so. (For information/assistance with cultural differences, contact the Department
of Patient Relations, 263-8009.)
G. The process by which decisions are made and the criteria for evaluating treatment decisions will be the
same without regard to protected class, including age, gender, race, national origin, religion, creed,
disability, developmental disability, sexual orientation, gender identity or expression, military or veteran
status or other basis prohibited by law.
H. Physicians and the hospital have a primary obligation to their patients and should not permit family
pressure or the threat of legal action to delay or deter action consistent with the patient's preferences or,
if not known, in the best interests of the patient. (Decisions for infants, children, and patients without
decision-making capacity require special consideration.)
I. Physicians, nurses and other health care professionals are obligated to provide for the comfort of the
patient, to alleviate pain in accordance with accepted medical and nursing standards, to treat the patient's
body with dignity, and to provide appropriate resources to meet the psycho-social and spiritual needs of
the patient and family.
III. RELATED POLICIES

Related policies on issues of decision-making in cases of limiting life-sustaining treatment are Informed Consent
(#4.17), Care for Patients Who Refuse Blood Transfusions (#4.32), Advance Directives (#4.37), Do Not

Resuscitate Orders (#8.23), Giving Care to Patients When They Refuse Care (#8.24), and Managing Staff Requests
Not to Participate in Aspects of Patient Care (#9.44).

IV. GUIDELINES FOR HEALTH CARE DECISION-MAKING WHEN LIMITING MEDICAL TREATMENT
A. Diagnosis, Prognosis and Uncertainties.
1. When a decision whether to initiate, continue or withdraw a specific medical treatment is to be
made, diagnosis and prognosis are often subject to uncertainties. Groundwork for good decision-
making must include informing the patient about these uncertainties. (See UWHC Policy #4.17,
Informed Consent.)
B. Patient Makes the Decision in Dialogue with the Physician.
1. Decisions regarding medical treatments should be made by the patient whenever possible,
incorporating the patient's own wishes. The decision should follow an informative dialogue
between doctor and patient. (See UWHC Policy #4.17, Informed Consent.) (Where the patient
lacks capacity and does not have an advance directive, see IV.G.1. below; for minors with life-
threatening illnesses, see IV.G.2. below.)
2. In preparing for this dialogue, the physician should consult with nurses and others who are
working most closely with the patient because they are often the first to recognize increasing
debilitation, lack of responsiveness to treatment, and other indications of burden to the
patient. They also may be the first to realize that the patient, family, or concerned friends are
considering whether the patient should forego a treatment.
3. It is usually desirable that other members of the health care team participate, as well as family
members or concerned friends. Patients or their authorized representatives, nonetheless, are
entitled to privacy and confidentiality and generally have the right to limit discussion with
caregivers (see VI.C., definition of caregiver), or other family, friends, and/or healthcare
providers.
4. The physician shall not unilaterally decide that the patient should forego life-sustaining
treatments based solely on the criteria of age or the physician's judgment about the patient's
quality of life.
C. Discussion of Benefits and Burdens.
1. The patient with capacity is the ultimate judge of the benefits and burdens of a life-sustaining
treatment. Possible burdens include pain or suffering, hardships imposed on their loved ones and
financial cost. Possible benefits include improved functioning, the relief of pain or suffering, the
opportunity to live longer, and the chance to engage in satisfying activities.
2. Some patients may decide that the burdens of a particular treatment outweigh the benefits and
choose to forego that treatment. The physician should explore the decision with the patient and
make the patient aware of the availability of pain treatments for alleviation from pain or
suffering.
D. Adult Patients with Present Decisional Capacity.
1. Limitations on the Use of Life-Sustaining Medical Treatment. If the adult patient possesses
decisional capacity and wishes to limit life-sustaining medical treatment, health care decisions
should be made as follows:
a. If the adult patient is fully informed (after consultation with the attending physician) and
possesses decision-making capacity, the patient's decision to limit medical treatment
must generally be obeyed. Expert consultation is recommended where decisional
capacity is in doubt (e.g., psychologist or psychiatrist).
b. The policy of asking family members to make health care decisions for the adult patient
is generally not appropriate when the patient has decision-making capacity. Staff should
be sensitive to cultural differences (see II.E. and F.).
c. If the family questions the patient's decision-making capacity or objects to the
treatment, further discussion on this issue is recommended. If the family still has
concerns, consultation with the UWHC Ethics Committee is recommended.
E. When Patient Capacity is Uncertain or Fluctuates.
1. At times patients may neither clearly possess nor clearly lack decision-making capacity. If the
patient, the physician, and the authorized representative agree on the treatment decision, then
there is no need to clarify the patient's capacity.
2. When they do not agree or when no authorized representative is on hand, it is best to delay the
decision until the patient has decision-making capacity. If that is not possible, the guidelines for
patients without decision-making capacity (IV.F., with advance directives or IV.G., without
advance directives) shall apply instead.
F. Patients without Decision-Making Capacity Who Have Advance Directives.
1. Formal Advance Directive. If the patient has a living will or a health care power of attorney, the
patient's wishes generally should be followed. If there are claims that the document was not
validly executed, that the document has been revoked, or there are other questions about the
document, consultation with the UWHC Ethics Committee or Legal Counsel is recommended. The
health care agent is obligated to follow the patient's wishes. If the agent doesn't know the

patient's wishes, the agent must decide in the patient's best interest (see sections IV.G.3. and 4.
below for guidelines on judging the reasonableness of limiting or withholding treatment).
2. Informal Advance Directive. If the patient left reliable evidence of his/her wishes by an informal
advance directive, then those wishes should be followed. If appropriate, the consent of the
patient's authorized representative generally should be obtained. Spoken wishes of the patient
while possessing decision-making capacity, which are documented in the chart or documented in
a letter by the patient, are usually presumed to be reliable. The reliability of statements to family
members should be established before they are accepted. Statements must be evaluated with
due regard to the circumstances in which they were expressed and in light of other evidence of
the patient's wishes. Such informal statements do not have the same weight and legal
consequences as formal advance directives, but are entitled to weight (legal and moral) in the
decision-making process. For further discussion on issues of reliability of informal advance
directives, see UWHC Advance Directive Policy #4.37, sec. VI.
3. In making such decisions, physician and authorized representatives should recognize that even
the patient without decision-making capacity may be able to understand some of what the
physician has to say and may be able to express preferences. Respect for persons, including
persons without decision-making capacity, means that a patient who can participate to any
extent in the decision-making process should be encouraged to do so.
4. Ambiguous Situations. When the patient has previously expressed, at a time when he or she
possessed decision making capacity, a desire that full medical treatment be provided under the
same or similar circumstances, there shall be a presumption in favor of treatment. If the
physician believes such treatment is inappropriate, the physician should seek consultation or
transfer care of the patient.
G. Patients without Decision Making Capacity who Lack Advance Directives.
1. Adult Patients without Decision-Making Capacity.
a. If the adult patient currently lacks decision-making capacity, decisions regarding
limitation of life-sustaining medical treatment generally should be made by the patient's
authorized representative (see VI.B., definition of "authorized representative of the
patient") in consultation with the patient's attending physician.
b. Adhere to the patient's preferences and values: If the patient has left no directive about
the treatment in question, the authorized representative should apply what is known
about the patient's preferences and values, trying to choose as the patient would have
wanted.
c. Before limiting life-sustaining treatment for a developmentally disabled patient who does
not have a terminal illness, the treatment team should make a reasonable effort to
confer with the non-UW/UWHC medical provider(s) who has been involved in the
patient’s care and is familiar with the patient.
d. The authorized representative has authority to make such decisions on behalf of the
patient only if it is clear that s/he is acting reasonably and in the patient's best
interest. If the authorized representative disagrees with other caregivers, or the
caregivers disagree with one another (see VI.C., definition of caregiver) consultation
with the Hospital Ethics Committee and, if appropriate (see Ethics Committee Charter),
with Legal Counsel shall be sought. Caregiver is not limited to the UW/UWHC treatment
team. If such caregivers (incuding the non-UW/UWHC medical provider(s) disagree with
a plan to limit life-sustaining treatment, those caregivers' input should be solicited for
the Hospital Ethics Committee consult if appropriate (see limitation in IV.B.3.).
In rare circumstances, it may be appropriate to withdraw life-sustaining medical
treatment without authorized representative consent or agreement. In such cases,
consultation shall be sought with the Hospital Ethics Committee and/or Legal Counsel.
e. In the case of a developmentally disabled patient who does not have a terminal illness,
before limiting life-sustaining treatment, the treating physician is strongly encouraged
either to: (i) confer with a member of a panel approved by UWHC and the Waisman
Center (information on panel members is available through the Ethics Committee) or (ii)
request an Ethics Committee consultation that includes an individual with a
developmentally disabled perspective.
f. A Wisconsin Supreme Court case restricts the authority of court-appointed guardians to
limit life-sustaining treatment in the absence of a prior written or oral statement from
the patient clearly indicating the patient's desires, except where the patient is in a
persistent vegetative state and it is not inconsistent with the best interests of the patient
to withdraw care. When discussing end-of-life issues with authorized representatives
under circumstances that might not meet these criteria, providers are strongly
encouraged to make them aware of this case as part of the informed consent process
(see Hospital Administrative Policy #4.17, Informed Consent).
2. Minor Patients.
a. General Considerations. Parents generally have the right to make medical decisions on
behalf of their minor children. This includes the withholding and withdrawal of life-

sustaining medical treatment unless unreasonable (see IV.G.4., below). The wishes of
the minor should be considered whenever possible.
b. Disagreement about Treatment. If the minor refuses treatment consented to by parents
or other authorized representative, and the disagreement cannot be resolved, then the
Hospital Ethics Committee and/or Legal Counsel shall be consulted.
c. Before limiting life-sustaining treatment for a developmentally disabled minor patient
who does not have a terminal illness, the treatment team should make a reasonable
effort to confer with the non-UW/UWHC medical provider(s) who has been involved in
the patient’s care and is familiar with the patient.
d. If the parents or other authorized representative disagree with caregivers, or the
caregivers disagree with one another (see VI.C., definition of caregiver), consultation
with the Hospital Ethics Committee and, if appropriate (see Ethics Committee Charter)
with Legal Counsel shall be sought. Caregiver is not limited to the UW/UWHC treatment
team. If such caregivers (including the non-UW/UWHC medical provider(s)) disagree
with a plan to limit life-sustaining treatment, those caregivers' input should be solicited
for the Hospital Ethics Committee consult if otherwise appropriate (see limitation in
IV.B.3.).
e. In the case of a developmentally disabled minor patient who does not have a terminal
illness, before limiting life-sustaining treatment, the treating physician is strongly
encouraged either to: (i) confer with a member of a panel approved by UWHC and the
Waisman Center (information on panel members is available through the Ethics
Committee) or (ii) request an Ethics Committee consultation that includes an individual
with a developmentally disabled perspective. Parent's Refusal for Medically Indicated
Treatment. If the physician is of the opinion that treatment is medically indicated, but
the parent(s) or other authorized representative of the minor refuse to consent to
treatment, then the Hospital Ethics Committee and/or Legal Counsel shall be
consulted. If resolution does not take place, appropriate agencies shall be notified so
that appropriate court proceedings can take place. (See Hospital Administrative Policy
#4.32, Caring for Patients Who Refuse Blood Transfusions).
f. Wisconsin Law Consideration. Practitioners should be aware that one Wisconsin court of
appeals in rejecting a claim by parents against a physician and hospital for lack of
informed consent in resuscitating a premature infant, stated that unless a child is in a
persistent vegetative state, that parents do not have the right to withhold life-sustaining
treatment. Nevertheless, practitioners are expected to practice medicine in the best
interests of their patients in collaboration with caregivers (see VI.C., definition of
caregiver). When discussing end-of-life issues with parents or other authorized
representatives, providers are strongly encouraged to make them aware of this case as
part of the informed consent process (see Policy #4.17, Informed Consent).
3. When Limiting Medical Treatment is Reasonable. If the patient lacks decision-making capacity,
and has no advance directive, limiting life-sustaining medical treatment is reasonable when
treatment is medically ineffective (see IV.G.5. and Definitions VI.G.). It is also reasonable, when
at least one of the following five conditions under a, b, c, d, or e is satisfied AND the condition
under f is satisfied.
a. The patient is experiencing his or her terminal illness (an illness or injury for which there
is no reasonable prospect of cure or recovery and the application of life-sustaining
treatment would only prolong the dying process) and appears unlikely to regain decision
making capacity (an expert consultation, e.g. psychologist or psychiatrist, is
recommended where decision-making capacity is in doubt); or
b. The patient is permanently unconscious (there is medical certainty that it will last
permanently without any reasonable chance of reversal), even though death is not
foreseeable in the near future; or
c. The patient is suffering from an incurable or irreversible condition, other than a cognitive
developmental disability, with no reasonable prospect for recovery; or
d. Continued provision of life-sustaining medical treatment will prolong a painful dying
process with little possibility of benefit (benefit from life-sustaining medical treatment is,
in part, a value judgment and not simply a question of whether life can be prolonged;
for further discussion of this issue, see Hospital Administrative policy on Do Not
Resuscitate Orders #8.23); or
e. The life-sustaining medical treatment is experimental and not a proven form of effective
therapy; AND
f. The patient's authorized representative agrees that life-sustaining medical treatment be
limited.
i. When the patient is reliably diagnosed as permanently unconscious (in an
irreversible coma or persistent vegetative state), and the artificial provision of
fluid and nutrition serves only to maintain bodily functions and there is no likely
medical prospect for a return to cognitive existence, the reasonable judgment

of what is best for the patient, exercised by the patient's authorized
representative should generally be honored
ii. When the patient is suffering from a terminal illness and the artificial provision
of fluids and nutrition serves only to prolong the dying process while imposing
what the patient's authorized representative reasonably considers to be
unacceptable risks, discomfort, or indignity, the reasonable judgment of what is
best for the patient, exercised by the patient's authorized representative,
should be generally honored.
4. When Limiting Medical Treatment is Unreasonable. If the patient lacks decision-making capacity
and has no advanced directive, limiting life-sustaining medical treatment is unreasonable if any of
the following factors are present (assuming the treatment is not futile as defined below at 5):
a. There is a reasonable hope of cure or of temporary remission; or
b. The patient's lack of decision making-capacity may be temporary, and the decision to
limit life-sustaining medical treatment can be deferred.
5. Futility (Medically Ineffective Treatment). If a treatment is considered futile in the physiologic
sense (see Definitions VI.G.) permission is not needed to withhold the treatment but the
patient/family must be informed why it is being withheld. If there are disagreements,
consultation should be sought with Hospital Patient Relations, the Hospital Ethics Committee
and/or Legal Counsel.
V. PROCEDURES FOR IMPLEMENTING A DECISION TO LIMIT LIFE-SUSTAINING MEDICAL TREATMENT

Where, consistent with the foregoing provisions, a decision has been made to limit life-sustaining medical
treatment, the following measures shall be taken:
A. Any necessary orders to implement the decision must be given by the attending physician and recorded on
the physician's order sheet. The order(s) must be specific as to the treatment to be limited, if any. A
verbal order by the attending physician may be entered in the order sheet by a resident physician, but
must be signed by the attending physician within 24 hours of the time it was given (except when the order
is given over a weekend, in which case it must be signed by the attending physician by Monday).
B. The basis for the decision must be entered in the physician's progress notes. This entry must include,
where applicable, notes concerning (a) the patient's physical condition and an explanation why that
condition supports the medical treatment decision; (b) any consultations obtained regarding the decision;
(c) the patient's consent or prior instructions, with documentation as to the patient's decision making
capacity at the time he or she provided the consent or instructions; (d) reference to formal or informal
advance directives, where applicable; (e) medical treatment options for current clinically significant
conditions; and (f) discussions with and consent of the authorized representative of the patient if the
patient lacks decision making capacity.
C. Where there is doubt about the patient's decision-making capacity, a consultation on capacity should be
obtained and documented in the chart.
D. If it is unclear whether the criteria for limiting life-sustaining medical treatment have been satisfied, full
medical treatment shall be continued, at least until the uncertainty has been resolved.
E. When the decision has been made, it should be communicated to all relevant providers of care to the
patient, including the primary care (referring) physician.
F. If a member of the patient's health care team objects to participation in implementation of the decision to
limit life-sustaining medical treatment on the basis of his/her personal views rather than a belief that the
criteria for life-sustaining medical treatment has not been met, she or he is responsible to ensure that
appropriate coverage is provided.
G. When the patient lacks decision-making capacity, and there are no patient advance directives, a Hospital
Ethics Committee consultation shall be sought if:
1. No patient authorized representative is available, or
2. The authorized representative is available but his/her decision is clearly not what the patient
would have decided if competent;
3. The authorized representative's decision is not a decision that could reasonably be judged to be
in the patient's best interest, or
4. There is no advance directive and there is disagreement among caregivers (see IV.C., definition
of caregiver) or
5. There is doubt as to whether the criteria for limiting life-sustaining medical treatment have been
met.
H. The advice and counsel of colleagues should normally be sought in difficult cases and advice of the UWHC
Patient Relations Office, the UWHC Ethics Committee and/or the hospital attorney obtained as indicated.
I. In the event the patient's condition changes or the representatives of the patient revise their consent,
appropriate written amendments to the physician's orders shall be made.
VI. DEFINITIONS

A. "Advance Directive" is a voluntary expression of the wishes of the patient with decisional capacity for
future health care. Advance directives become relevant when the patient is no longer capable of making
health care decisions. Advance directives may be "formal" (legal documents such as the Wisconsin power
of attorney for health care or the living will) or "informal" (reliable oral or written evidence of the patient's
prior expressed wishes). For more information, see Advance Directives Policy #4.37, sec. V.D., E. and VII.
B. "Authorized representative of the patient" is the person authorized by law or hospital policy to act on
behalf of the patient who lacks decisional capacity. Family or other representative(s) of the patient who
can make medical treatment decisions on the patient's behalf are listed below in priority order.
1. Court-appointed guardian of the person. (Wisconsin law limits the authority of a court-appointed
guardian to make some decisions. See IV.G.1.f.)
2. The health care agent appointed by the patient in a health care power of attorney.
3. Spouse.
4. Adult son or daughter.
5. Parent.
6. Adult brother or sister.
7. Other close relative, or in the absence of any relatives, a close friend.
8. When there is no health care agent or legal guardian and there is dispute among family members
about the patient's preferences or, if not known, best interest, the health care team should
attempt to achieve consensus among family members. If differences persist, consultation shall be
sought from the UWHC Patient Relations Office, the UWHC Ethics Committee and/or the hospital
attorney.
C. "Caregiver" means an individual (usually a family member, close friend, or healthcare provider) who
recently has had significant involvement in the care of the patient such that s/he is likely to have relevant
information as to the patient's wishes, burdens or benefits of treatment, or best interests. Healthcare
provider is not limited to the UW/UWHC treatment team.
D. "Decision-making capacity" or "Decisional Capacity" means the ability to receive information and
understand the consequences of one's decision, and to communicate decisions to such an extent that the
individual patient can manage his or her own health care decisions. Mere old age, eccentricity or physical
disability, singly or together, is insufficient to make a finding of incapacity. Mere disagreement by the
patient with the health care providers is insufficient for a finding of incapacity.
Individuals with court-appointed guardians may still have some capacity to participate in treatment
decisions. Minors (children under age 18), as a general rule, by law are not capable of making their own
health care decisions without parental consent, except for emancipated minors or mature minors. (See
Informed Consent Policy #4.17.). However, their views should be solicited and should play a role in health
care decisions.
E. "Terminal Illness." A patient's terminal illness has no exact definition, but, in general, refers to a condition
that will lead to death -- usually within the period of several months. Some patients will be experiencing
such an illness because their condition can be predicted with reasonable medical certainty to result in
death, irrespective of any medical therapy or regimen. Some patients may be experiencing their terminal
illness because, although medical treatment is available that may prolong their life for a period of months
or more, that treatment has been refused by the patient or by the patient's authorized representative.
F. "Life-sustaining medical treatment" includes, but is not limited to, the provision of nutritional substances
and fluids necessary to the preservation of life.
G. "Futility" (Medically Ineffective Treatment) for the purposes of these guidelines, shall be used only to refer
to a treatment that will not achieve the physiologic end for which it is designed. The term shall not be
used for decisions based on personal value judgments or societal considerations such as cost.
VII. COORDINATION

Sr. Management Sponsor: Sr. VP & General Counsel
Author: Director Patient & Family Services

Review/Approval Committees: Ethics Committee; Medical Board; UW Health Clinical Policy Committee

SIGNED BY

Peter Newcomer, MD
UW Health Chief Clinical Officer

J. Scott McMurray, MD
Chair, UW Health Clinical Policy Committee