AARP Hearing Center
Background
Respect for patient 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 do not respect these tenets and 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 Medicare or Medicaid to respect the right of patients to designate visitors. Specifically, the rules require hospitals to have written visitation policies informing patients of their right to designate visitors, including same-sex spouses or domestic partners, 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. Every state permits competent adults to execute advance directives, such as a living will and a durable power of attorney for health care. 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 enable individuals to appoint a surrogate decisionmaker to act for them if they cannot communicate their wishes. However, confusion is common with regard to the appropriate content of advance directives.
Although advance directives are legal in every state, there are concerns about the failure of health care providers to implement their provisions. Most states have adopted a strategy to address this failure through a document called Provider Orders for Life-Sustaining Treatment (POLST). In some states, this document is called Medical Orders for Life-Sustaining Treatment (MOLST). This document details a person’s treatment wishes and requires a clinician’s signature. The goal of the POLST (or MOLST) protocol is to ensure that the wishes of patients with terminal and advanced chronic progressive illnesses will be carried out both in and outside health care settings.
These forms complement advance care planning and advance directives. They ensure that life support interventions are discussed with a physician and informed by the patient’s wishes. These wishes are reflected in a highly visible set of medical orders that follow the patient across care settings and in their homes. The execution of a POLST is particularly important outside health care settings. Without medical orders to withhold specific treatments—such as cardiopulmonary resuscitation—emergency responders may not honor the provisions of an advance directive because of legal liability concerns.
Studies demonstrate the effectiveness of POLST forms in ensuring patient wishes are carried out. Several states have seen an increase in the number of completed forms after allowing nurse practitioners and other Advance Practice Registered Nurses to sign POLST forms (see also Scope of Practice).
PATIENT RIGHTS AND ADVANCE DIRECTIVES: Policy
PATIENT RIGHTS AND ADVANCE DIRECTIVES: Policy
Patient rights
The federal government should play a strong role in protecting patient rights to direct their care and make other decisions. All patients have the right to designate the visitors they want in the hospital, regardless of 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 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. Such forms should clearly allow patients 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 planning. They should establish and support decision-making protocols such as Provider Orders for Life-Sustaining Treatment. They should ensure that patient 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 planning 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 if an incapacitated patient has not executed an advance directive.
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 decisionmaker’s authority is equal to that of an agent or proxy appointed in an advance directive.