Patients’ Rights and Advance Directives

Background

Respect for patients’ autonomy and the right to self-determination are essential features of a high-quality health system. However, research indicates that some health care providers and institutions fail to honor the decisions—or implement the directives—of competent patients and their legal surrogates.

Hospitals sometimes fail to respect patients’ wishes when they deny visitation by close friends, partners, and other non-family members. The Department of Health and Human Services has issued rules requiring hospitals that participate in MedicareMedicare is the federal health insurance program for people who are age 65 or older, certain younger people with disabilities, and people with End-Stage Renal Disease (ESRD), (permanent kidney failure requiring dialysis or a transplant). or MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets. to respect patients’ right to designate visitors. Specifically, the rules require hospitals to have written visitation policies inform patients of their right to designate visitors, including a same-sex spouse or domestic partner; and not discriminate on the basis of sexual orientation, gender identity, or other characteristics.

When adults lack decision-making 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 willAdvanced healthcare directive and living wills, are legal documents stating a person’s wishes regarding the desired medical treatments specific circumstances, when they are unable to express their wishes because of illness or incapacity. and a durable power of attorney for health careA legal document  one uses to authorize someone to make decisions about their health and care in the event they are physically or mentally incapacitated.  It can include instructions about the kinds of medical treatment you would or would not want.. Health care providers are required to inform individuals of their right to execute such documents.

Living wills allow people to make known their treatment wishes under specific circumstances. Durable powers of attorney for health care allow individuals to appoint a surrogate decision-maker 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.

Despite the legality of advance directives in every state, concerns have been raised about the failure of health care providers to implement their provisions. Most states have adopted a strategy to address this failure: Provider Orders for Life-Sustaining Treatment (POLST). This document details a person’s treatment wishes and requires a clinician’s signature. The POLST protocol ensures that the wishes of patients with terminal and advanced chronic progressiveIn taxation, a situation in which people with lower income pay a smaller percentage of their income than do people with higher income. 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, or MOLST.

POLST forms complement advance care planningA process for considering, deciding, and documenting what treatments a person wants and does not want under specific circumstances, particularly with regard to end-of-life care when a person has a terminal illness. and advance directives. They ensure that life support interventions are discussed with a physician, 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 directiveAdvanced healthcare directive and living wills, are legal documents stating a person’s wishes regarding the desired medical treatments specific circumstances, when they are unable to express their wishes because of illness or incapacity. because of concerns about legal liability.

Since Oregon developed the POLST form, most states have implemented similar protocols. Studies have demonstrated their effectiveness in ensuring that patients’ wishes are carried out. Several of these states have seen an increase in the number of completed forms after allowing nurse practitionersAdvanced practice RNs provide a wide range of healthcare services. NPs often specialize by patient population, such as adult, geriatric, pediatric, and women’s health. They may also subspecialize in clinical areas such as oncology and dermatology. and other Advance Practice Registered Nurses to sign POLST forms (see also Health Care Workforce Licensing and Continuing Education and Scope of Practice for policy on APRNsAPRNs are RNs with advanced education and clinical preparation (e.g., a master’s degree, or a doctorate in nursing practice.) They include nurse practitioners, clinical nurse specialists, nurse anesthetists, and nurse midwives. signing these documents).

PATIENTS’ RIGHTS AND ADVANCE DIRECTIVES: Policy

PATIENTS’ RIGHTS AND ADVANCE DIRECTIVES: Policy

Patients’ rights

The federal government should play a strong role in protecting patients’ rights to direct their care and make other decisions. 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 identified in legally valid advance directives such as health care powers of attorney.

Federal legislation should require that all MedicareMedicare is the federal health insurance program for people who are age 65 or older, certain younger people with disabilities, and people with End-Stage Renal Disease (ESRD), (permanent kidney failure requiring dialysis or a transplant). and MedicaidA joint federal/state program that provides health care and LTSS. However, to qualify for Medicaid LTSS, people must have extremely low assets and income, or they have to “spend down” most of their assets. 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. Such forms 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. They have a right to be kept in a comfortable state without pain and permitted to refuse medical treatment.

Advance directives and advance care planning

The federal government and states should encourage advance care planningA process for considering, deciding, and documenting what treatments a person wants and does not want under specific circumstances, particularly with regard to end-of-life care when a person has a terminal illness.. They should establish and support decision-making protocols such as Provider Orders for Life-Sustaining Treatment. They should ensure that patients’ wishes are appropriately translated into visible and portable medical orders. These orders should address such medical contingencies as hospitalization, cardiopulmonary resuscitation, artificial nutrition and hydration, antibiotics, and artificial ventilation.

The federal government and states should support the establishment or the maintenance of online registries for completed advance care planningA process for considering, deciding, and documenting what treatments a person wants and does not want under specific circumstances, particularly with regard to end-of-life care when a person has a terminal illness. documents that can be accessed by health care providers and designated individuals, such as family members. Providers should be required to check these registries when making decisions about end-of-life care.

Further, states should enact laws that:

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

Default surrogacy laws

Policymakers should authorize non-judicial surrogate decision-making in the event that an incapacitated patient has not executed an advance directiveAdvanced healthcare directive and living wills, are legal documents stating a person’s wishes regarding the desired medical treatments specific circumstances, when they are unable to express their wishes because of illness or incapacity. .

Such legislation should:

  • include a definition of and non-judicial 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 to be used 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 decision-maker’s authority is equal to that of an agent or proxy appointed in an advance directiveAdvanced healthcare directive and living wills, are legal documents stating a person’s wishes regarding the desired medical treatments specific circumstances, when they are unable to express their wishes because of illness or incapacity. .