Patients’ Rights and Advance Directives

Background

Patients’ rights—hospitals sometimes fail to respect patients’ wishes when they deny visitation by close friends, partners, and other non-family members. The secretary of the Department of Health and Human Services has issued rules requiring hospitals that participate in Medicare or Medicaid to respect patients’ right to designate visitors. Specifically, the rules require hospitals to have written visitation policies; to inform patients of their right to designate visitors, including a same-sex spouse or domestic partner; and to not discriminate on the basis of sexual orientation, gender identity, or other characteristics.

Advance directives—respect for patients’ autonomy and the right to self-determination is critical for all patients. Increasing evidence, however, indicates that some health care providers and institutions fail to honor the decisions or implement the directives of competent patients and their legal surrogates.

When adults lack decisionmaking capacity or the ability to communicate their decisions, the duty to make decisions falls to others. Currently every state permits competent adults to execute advance directives, such as a living will or a durable power of attorney for health care. In addition, the Patient Self-Determination Act requires health care providers to inform individuals of their right to do so.

Living wills allow people to make known their treatment wishes under specific medical circumstances, and durable powers of attorney for health care allow them to appoint a surrogate decisionmaker to act for them if they are unable to communicate their wishes. However, confusion is common with regard to the appropriate content of advance directives, and despite the legality of advance directives in every state, concerns have been raised about the failure of health care providers to implement their provisions.

An emerging strategy for determining patients’ wishes and ensuring that patients receive quality end-of-life care congruent with their wishes was developed in Oregon in the early 1990s. Called Physician Orders for Life-Sustaining Treatment (POLST), the protocol ensures that the wishes of patients with terminal and advanced chronic progressive illnesses will be carried out both in and outside health care settings. In some states, the protocols are called Medical Orders for Life-Sustaining Treatment (MOLST).

POLST or MOLST forms complement advance care planning and advance directives by ensuring that life support interventions are discussed, informed by the patient’s wishes, and reflected in a highly visible set of medical orders that follow the patient not just across care settings but also to their homes. The execution of a POLST is particularly important outside health care settings because without medical orders to withhold specific treatments—such as cardiopulmonary resuscitation—emergency responders may not honor the provisions of an advance directive because of concerns about legal liability.

Since Oregon developed the POLST form, 26 states have implemented similar protocols. Studies have demonstrated their effectiveness in ensuring that patients’ wishes are carried out. (See also Chapter 8, Long-Term Services and Supports.)

Patients’ Rights and Advance Directives: Policy

Protecting patients' rights

In this policy: FederalStateLegal Rightspatients' rightspenalties

The federal government should play a strong role in protecting patients’ rights.

The federal and state governments should ensure that all patients have the right to designate the visitors they want in the hospital, without regard to marital status, status as a family member, sexual orientation, or other factors. Designated visitors should include individuals designated by legally valid advance directives such as health care powers of attorney.

Federal legislation should require that all Medicare and Medicaid providers inform patients, both orally and in writing, of their rights upon admission. Written consent forms should be detailed and specific, so that a patient’s consent is truly informed, and should clearly provide patients with the right to refuse certain medical practices without fear of reprisal or discontinuation of medical treatment.

Federal and state legislation should include:

  • a mechanism that lets patients and residents play an independent role in enforcing the law and regulations,
  • penalties severe enough to protect those who complain and to deter offensive conduct, and
  • a grievance mechanism with an appropriate appeals procedure.

States should enact legislation that protects the rights of terminally ill patients to be treated at all times with dignity, respect, and kindness; maintained in a comfortable state without pain; and permitted to refuse medical treatment.

Advance directives and advance care planning

In this policy: FederalState

States should enact laws with a comprehensive approach to health care decisionmaking, such as the provisions in the Uniform Health Care Decisions Act. State law should allow competent adults to execute advance directives (living wills, health care powers of attorney, or combined forms) that allow patients to communicate their medical treatment wishes and appoint a surrogate to make treatment decisions for them in the event of their incapacity. Covered treatment decisions should include (but not be limited to) the use, withholding, or withdrawal of artificial nutrition and hydration.

In addition states should enact laws that:

  • establish a nonjudicial means (such as mediation) for resolving disputes that may arise in the implementation of advance directives;
  • provide guidelines for advance directives—such as nonhospital “do not resuscitate” orders—that protect incapacitated adults’ right to refuse life-sustaining treatment when they are not in a health care facility; and
  • ensure that any advance directives accompany a person who moves from one facility to another.

The federal government and states should encourage advance care planning, and should establish and support decisionmaking protocols such as POLST to ensure that the wishes of patients with advanced, chronic, progressive illnesses are appropriately translated into visible and portable medical orders that address such medical contingencies as hospitalization, cardiopulmonary resuscitation, artificial nutrition and hydration, antibiotics, and ventilation.

Default surrogacy laws

In this policy: FederalLocalStateLegal Rightsincapacityadvanced planningpatients' rights

Legislation should authorize nonjudicial surrogate decisionmaking in the event that an incapacitated patient has not executed an advance directive. Such legislation should:

  • include a definition of and nonjudicial process for determining incapacity;
  • detail who, in order of priority, may make health care decisions for the incapacitated individual, including provisions for “unbefriended” patients without relatives or friends;
  • establish the standard that surrogates should use in making decisions—preferably the patient’s expressed wishes, the “substituted judgment test” (i.e., what the patient would have wanted, if the wishes were known to the surrogate), or if the wishes are unknown, the patient’s best interests, based on all relevant information available to the surrogate;
  • include provisions for the resolution of disputes that may arise; and
  • provide that a surrogate decisionmaker’s authority is equal to that of an agent or proxy appointed in an advance directive.