Hospitals sometimes discriminate against patients when they fail to respect their wishes concerning who may visit them or when they deny visitation by close friends, partners, and other nonfamily 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’ rights to designate visitors. Specifically, the rules require hospitals to have written visitation policies and 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.
Respect for autonomy and self-determination is as critical for the dying individual as for the patient who is expected to recover. There is increasing evidence, however, that some health care providers and institutions fail to implement the decisions of competent patients.
Who makes treatment decisions? When adults lack decisionmaking capacity or the ability to communicate their decisions, the duty to decide on treatment falls to others. Although this may raise ethical considerations, concern for the individual’s wishes, values, and welfare remains at the heart of surrogate decisionmaking. The most crucial questions are who should make treatment decisions for incapacitated adults and what criteria they should use in making those decisions.
Currently, every state permits competent adults to execute advance directives, either in a living will or a durable power of attorney for health care. (For more information, see Chapter 7: Health) In addition the Patient Self-Determination Act requires health care providers to inform individuals of these rights. These advanced directives allow people to make known their treatment wishes under specific medical circumstances and appoint a surrogate decisionmaker to act for them should they become incapacitated. There remain, however, gaps in state laws, confusion as to which type of directive is most appropriate, and questions about the implementation of advance directives by health care providers.
Despite the proliferation of advance directive laws and the growing embrace of the less legally focused concept of advance-care planning, questions remain as to their impact on actual treatment decisions. In the early 1990s, Oregon developed one strategy for determining patients’ wishes and ensuring that patients receive quality end-of-life care congruent with those wishes. Called Physician Orders for Life-Sustaining Treatment (POLST), the protocol translates the wishes of patients with advanced chronic progressive illness into medical orders that health care systems understand. It complements advance care planning and advance directives by ensuring that care plans addressing a high-probability set of 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 across care settings. Since Oregon developed the POLST form, 15 states have endorsed these programs, while 28 additional states are taking legislative or regulatory steps to implement similar protocols. Studies show the protocol is effective in ensuring that patients’ wishes are carried out during the last stage of life (see Chapter 8, Long-Term Services and Supports.)
Patients’ Rights: Policy
Protecting patients’ rights
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
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. (For more information, see Chapter 7: Health)
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;
- ensure that any advance directives accompany a person who moves from one facility to another; and
- ensure that advance directives and advance care plans executed in one state are applicable in other states.
The federal government and states should encourage advance care planning, and should establish and support decisionmaking protocols such as Physician Orders for Life-Sustaining Treatment 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
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.