Long term care facilities often serve as primary healthcare settings for end-of-life decision making. Anywhere from 45-70% of older adults facing end-of-life circumstances are unable to make their own healthcare decisions. Advanced care planning helps ensure that a resident’s personal decisions around the care they desire are known and respected. It also makes providing patient care easier for both long term care providers and for the resident’s family members or other authorized decision makers.
The Patient Self-Determination Act
The importance of advanced care planning was acknowledged by the federal government with passage of the Patient Self-Determination Act (PSDA) in 1990. The PSDA amended titles XVIII and XIX of the Social Security Act (Medicare and Medicaid), to require that hospitals, skilled nursing facilities, hospice programs, home health agencies, and other specified health care organizations meet certain requirements relating to patient/resident health care decision-making and advance directives. Among its requirements, the PSDA mandates that the designated health care organizations maintain written policies and procedures (applicable to adult patients/residents) to:
- provide written information to each patient/resident about their rights under applicable state law to make medical decisions and formulate advance directives;
- document in a prominent part of the patient/resident’s medical record whether they have an advance directive;
- not discriminate against or condition the provision of medical care based on whether the patient/resident has an advance directive;
- ensure compliance with applicable state law regarding advance directives at the provider facility or organization; and
- to provide for education about advance directives for the staff and the community.
Advanced Directives for Health Care
As advanced directives for health care are generally governed by state law, it is crucial to understand your state’s legal requirements regarding: (1) the advance directives your state recognizes, when advance directives become effective, and how advance directives are properly executed; and (2) the order of priority for who can make a resident’s health care decisions if the resident is no longer capable of making decisions and does not have an applicable, valid advance directive.
The terminology used by states to describe advance directives varies — broadly speaking, two of the most common advance directives for health care are Living Wills and Durable Powers of Attorney. A Living Will addresses a resident’s desires for end-of-life care respecting certain life-prolonging treatments or procedures. For example, Living Wills customarily address whether a resident wants mechanical respiration, artificial nutrition and hydration, cardiopulmonary resuscitation (CPR), antibiotics, pain relief, etc., if they face certain end-of-life situations without a reasonable hope of recovery.
A Durable Power of Attorney for health care decision-making allows an individual (the “principal”) to appoint one or more individuals (the “agent(s)”) to make general health care decisions for the principal, usually if the principal is unable to make or communicate their own decisions. The health care agent’s appointment often includes signing a document that meets state legal requirements. The Power of Attorney document may include instructions regarding the principal’s health care and end-of-life medical care. Additionally, a health care agent can often obtain a principal’s medical records and protected health information.
In the long term care setting, another common type of advance directive is the Do Not Resuscitate Order (DNR). A DNR Order provides that in the case of cardiac or respiratory arrest, the resident does not want resuscitative measures, like CPR. In many cases, a healthcare provider that has a provider/patient relationship with the patient, writes a DNR Order after obtaining the patient’s/resident’s informed consent (or the consent of the patient’s/resident’s legally authorized representative).
Health Care Decision Making Without A Health Care Agent/Power of Attorney
If a resident does not have a health care Power of Attorney or legal guardian, and the resident is incapable of making their health care decisions, consult state law regarding who can act as a surrogate health care decision maker. State law often provides an order of priority to determine who steps into the resident’s shoes for health care decision making when there is no agent or legal guardian. For example, under the Uniform Health Care Decisions Act (which may differ from your state’s health care decisions act, or equivalent law), a resident’s surrogate would be selected using the following order of priority:
- the resident’s spouse,
- the resident’s adult child,
- the resident’s parent,
- the resident’s adult sibling, and
- any adult who exhibits special care and concern for the resident, who is familiar with the resident’s personal values, and who is reasonably available.
However, as with advance directives generally, appointment of a health care surrogate is a matter of state law, and state law controls the order of priority for appointing a surrogate.
Health Care Provider Liability
States typically have laws protecting health care providers against civil or criminal liability for good faith reliance on an advance health care directive, if the provider complies with applicable standards of care. As you draft, review, or update policies and procedures on advance directives and health care decision making, you should consult applicable state legal requirements to ensure your organization’s policies and procedures are in alignment.
 Deborah Carr, Elizabeth A. Luth, Innovation in Aging, Vol. 1, Issue 1, Advance Care Planning: Contemporary Issues and Future Directions (The Gerontological Society of America, March 1, 2017).
 Omnibus Budget Reconciliation Act of 1990, Pub. L. 101-508, 104 Stat. 1388, §§ 4206, 4751 (amending 42 U.S.C. §§ 1395cc (Medicare) and 1396a (Medicaid)).
 42 U.S.C. §§ 1395cc(f) and 1396a(w).
 National Institutes of Health: National Institute on Aging, Advance Care Planning: Advance Directives for Healthcare (Oct. 31, 2022), https://www.nia.nih.gov/health/advance-care-planning-advance-directives-health-care.
 See, e.g., Tenn. Code Ann. § 34-6-206.
 See generally, Adrienne L. Jones, Abigail J. Moss and Lauren D. Harris-Kojetin, Ph.D., National Center for Health Statistics Data Brief No. 54, Use of Advance Directives in Long-term Care Populations (Centers for Disease Control and Prevention, National Center for Health Statistics, Jan. 2011), Products - Data Briefs - Number 54 - January 2011 (cdc.gov).
 See, e.g., Tenn. Code Ann. § 68-11-224, Fla. Stat. § 401.45(3).
 Uniform Health Care Decisions Act § 5(b) and (c) (Unif. Law Comm’n 1993).
 See, e.g., Minn. Stat. Ann. § 145C.11, subd. 2, Tex. Health & Safety Code Ann. § 166.160(b), and 20 Pa. Cons. Stat. Ann. § 5431(a).