Federal Laws Concerning Advance Directives
Updated January 11, 2016
Federal Laws Concerning Advance Directives
An advance directive is a written statement by a competent
providing education for staff and the community on
person indicating his or her wishes regarding medical
issues concerning advance directives.
treatment in the event of future incompetence. In this
context, incompetence means that a person cannot express
The PSDA also mandated that certain covered providers
his or her wishes which may be caused by mental infirmity,
distribute information about advance directives according to
unconsciousness, or the inability to communicate. Advance
the timing of medical or health-related events such as at the
directives may be used to address medical questions during
time of admission, initial receipt of care, or plan enrollment.
any period of incompetence, including those periods
Medicare-certified providers that do not comply with these
associated with terminal illness.
requirements may have payments withheld by the Secretary
of Health and Human Services (HHS). Medicaid law does
In general, there are two types of advance directives: (1) a
not contain a similar compliance requirement. Furthermore,
living will and (2) a health care power of attorney (also
the PSDA provides for the continued application of state
referred to as a “durable power of attorney”). A living will
laws that allow health care providers to object, as a matter
can inform health care providers about the type of medical
of conscience, to implementation of an advance directive.
care that an individual wants provided or withheld. This
To monitor implementation, a 2015 Government
may include any type of medical treatment, including a life-
Accountability Office (GAO) report found that the Centers
sustaining procedure. Living wills typically take effect
for Medicare & Medicaid Services (CMS) provides
when the patient cannot communicate his or her wishes for
documentation to inform covered providers and describe
medical care. In general, once a physician receives a living
agency monitoring activities (GAO-15-416). In doing so,
will, he or she either must honor its instructions or transfer
CMS relies on outside entities such as state survey agencies
the patient to another physician who will honor them. A
and accrediting organizations, as well as internal contract
health care power of attorney is a document that identifies a
review to monitor the advance directive requirement. GAO
health care proxy or decisionmaker for the patient. This
also found that while approaches to inform individuals
document typically takes effect when a physician decides
about advance directives can vary by provider, similar
that a patient is unable to make a health decision.
challenges existed across settings, including provider
discomfort in talking about end-of-life issues as well as lack
All 50 states and the District of Columbia have laws
of staff time for such discussions.
concerning advance directives and the appointment of a
health care proxy. While generally a matter of state law,
Other Federal Laws
Congress has passed laws with respect to advance directives
Two other laws concerning advance directives and advance
and advance care planning.
care planning are the National Defense Authorization Act
for Fiscal Year 1996 (§748 of P.L. 104-106; 10 U.S.C.
Patient Self-Determination Act
1044c), which established a federal advance directive for
In 1990, Congress passed the Patient Self-Determination
military personnel that explicitly preempts state law, and
Act (PSDA; P.L. 101-508), which requires certain Medicare
the Medicare Improvements for Patients and Providers Act
and Medicaid covered providers (hospitals, nursing homes,
of 2008 (MIPPA; P.L. 110-275). Among other things,
home health agencies, hospices, and Medicare Advantage
MIPPA added “end-of-life planning” to the initial
plans) to follow specified policies and procedures in regard
preventive physical exam that Medicare beneficiaries
to advance directives. Covered providers are required to
receive upon enrollment. MIPPA defines “end-of-life
maintain written policies and procedures with respect to
planning” to mean verbal or written information regarding
an individual’s ability to prepare an advance directive in the
providing adults with written information regarding
case that an injury or illness causes the individual to be
their rights under state law to make decisions
unable to make health care decisions; and whether or not
concerning medical care, including formulating advance
the physician is willing to follow the individual’s wishes as
directives;
expressed in an advance directive.
documenting an advance directive in the individual’s
Health Reform and Advance Care Planning
medical record;
The characterization of end-of-life or advance care planning
not conditioning the provision of care, or otherwise
as “death panels” during the health reform debate led
discriminating against an individual, based on whether
policymakers to shy away from proposals to establish a
or not there is an advance directive;
Medicare covered advance care planning (ACP) benefit
under the Patient Protection and Affordable Care Act
ensuring compliance with requirements of state law
(ACA; P.L. 111-148, as amended). However, some
respecting advance directives; and
stakeholders saw opportunity to include more limited
coverage of ACP under the ACA-established Medicare
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Federal Laws Concerning Advance Directives
annual wellness visit (AWV). The AWV includes a number
her guardians did not have sufficient proof, that nutrition
of elements specified in the law, and authorizes the HHS
and hydration could not be withdrawn. Although the
Secretary to include any other element determined
Supreme Court did not specifically decide the issue as to
appropriate. Thus, the HHS Secretary could require the
whether the Missouri court could have acted contrary to a
inclusion of ACP.
clear and convincing expression of Cruzan to withdraw
medical procedures, it did presume that such a right existed
In 2010, CMS’s proposal to implement the AWV
under the Fourteenth Amendment. Thus, under Cruzan, an
requirement did not mention ACP (75 FR 40126).
individual’s right to refuse medical treatment may be
However, the final rule included “voluntary” ACP as part of
broader than the rights granted by state statutes.
the AWV, based on comments received on the proposal (75
FR 73170). This inclusion of ACP in the final rule
Use of Advance Directives
generated controversy, and shortly after publication, CMS
The Cruzan case and other high-profile cases involving an
rescinded its addition as a specified AWV element (76 FR
individual’s right to refuse or terminate medical treatment
1366). Since then, there has been interest in establishing a
in the absence of an advance directive (such as the Terri
Medicare billing code for ACP. For 2016, CMS physician
Schiavo case) have generated considerable public
payment regulations finalized a proposal to allow payment
awareness about the issue. According to the Institute of
for ACP under two new Current Procedure Terminology
Medicine’s (IOM’s) 2014 Dying in America report, about
(CPT) codes:
47% of adults over the age of 40 had an advance directive.
However, the likelihood that an individual has completed
CPT Codes 99497/99498—Advance care planning
one can vary. A 2011 National Center for Health Statistics
including the explanation and discussion of advance
study found that 88% of discharged hospice patients had
directives such as standard forms (with completion of
advanced directives, compared to 65% of nursing home
such forms, when performed), by the physician or other
residents and 28% of home care patients. According to
qualified health professional (first 30 minutes, face-to-
GAO, factors that increase the likelihood of having an
face with the patient, family member(s), and/or
advance directive include presence of a chronic illness or
surrogate; add-on code for each additional 30 minutes).
condition (e.g., diabetes or dementia), as well as being aged
65 and older, white, female, or having relatively higher
The final rule also added ACP as an optional element to the
income and education levels.
AWV, at the beneficiary’s discretion (80 FR 70886).
Implementing Advance Directives
Constitutional Status
The boundaries of a seemingly clear-cut presumption to
While the right to refuse medical treatment has been
follow individuals’ treatment wishes can become blurred.
addressed in state law, even in those cases where no
For example, a patient may be incapable of creating an
advance directive has been completed or where state law
advance directive because he or she is unconscious or
does not cover a particular medical circumstance,
suffering from dementia. An emergency provider might not
individuals or their guardians may still make medical
know that a patient has an advance directive. A patient’s
decisions which will ultimately allow the death of the
advance directive may not be available when needed by the
patient to occur. This was the litigation posture which led to
provider. Family members may threaten or pursue legal
the case of Cruzan v. Director, Missouri Department of
action against health providers for decisions with which
Health. At the time of the litigation, Nancy Cruzan was
family members disagree—even when those decisions
hospitalized in a persistent vegetative state. Although
accord with patient wishes. Patients may change their
Cruzan was able to take nutrition through spoon-feeding, it
preferences after executing an advance directive, changes
was determined that artificial nutrition and hydration were
which might not be respected unless they are documented
medically indicated. While Missouri now has a “Living
in an advance directive.
Will” statute, Cruzan had not written out such a will. Even
if she had, the statute specifically excluded the possibility
These possibilities can create challenges for the health care
that a patient’s living will could provide for the withdrawal
delivery system. According to the IOM, advance directives
of nutrition or hydration tubes. As the Missouri legislature
can be useful as part of a more comprehensive advance care
appeared to have made a decision that the withdrawal of
planning discussion, but they must also be flexible for
nutrition and hydration was against public policy, the
health care decisionmakers. Some see the need to articulate
Missouri Supreme Court required that proof of Cruzan’s
preferences through medical orders covering specific
wishes be subjected to a heightened evidentiary standard.
treatments (e.g., do-not-resuscitate, do-not-intubate).
Moreover, inclusion of advance directives in a patient’s
The Cruzan case presented two legal issues to the Supreme
electronic health record or storage in an external database
Court: first, whether Cruzan had the constitutional right,
such as a registry may address certain barriers to provider
even absent legislative approval, to consent to the
access.
withdrawal of nutrition and hydration; second, whether this
right could be exercised by a guardian, and furthermore
Kirsten J. Colello, Specialist in Health and Aging Policy
what standard of proof would be required to show that such
Kenneth R. Thomas, Legislative Attorney
a course of action was the intent of the patient. The
Supreme Court ultimately decided that the state could
IF10237
require clear and convincing evidence of her wishes, and as
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Federal Laws Concerning Advance Directives
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