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Selected Patient Rights Issues

Risk Management and Medical Liability

A Manual for Indian Health Service and Tribal Health Care Professionals
(Second Edition)

Section Five: Selected Patient Rights Issues

Three issues relating to patient rights will be reviewed briefly: refusal of treatment, terminally ill patients, and substituted judgment. For a general discussion of patient rights within healthcare facilities, the reader is referred to the Patient Rights Standards of the Joint Commission on Accreditation of Healthcare Organizations.

Refusal of treatment: A patient who is competent to give consent also is entitled legally to withhold it for whatever reasons he or she deems sufficient. This is true even if refusing treatment may result in serious harm or death. When a patient refuses treatment, the provider should document all of the information given to the patient concerning the consequences of the refusal. Failure to provide such information or the inability to prove that it was provided could result in liability on informed consent grounds. When the competence of the patient to make the treatment decision is questionable, the provider may rely on the principles of emergency consent and consent by the next of kin. However, a court order authorizing treatment should be considered.

Terminally ill and vegetative-state patients: Numerous state court decisions over the last 25 years have held that terminally ill patients and those in a “persistent vegetative state” have a right to refuse life-supporting care that would serve only to prolong the process of dying or a meaningless existence. However, patients do not have an unrestricted “right to die.” Courts and legislatures dealing with this matter have defined rather narrowly the cases in which patients can refuse life support.

Ending years of speculation on how it would rule on the issue, the U.S. Supreme Court held in 1990 that a patient does have the constitutional right to decline life-sustaining treatment.1 However, the Court also upheld the right of the state to require b evidence of the patient’s desires on the matter. Some courts traditionally have distinguished between the use of “ordinary” and “extraordinary” life-support measures. Ordinary measures generally have been held to include the provision of nutrition and hydration via nasogastric or other types of feeding tubes; extraordinary measures encompass cardiopulmonary resuscitation and the use of a ventilator to maintain respiration. Calling the use of a respirator extraordinary treatment, the New Jersey Supreme Court allowed an irreversibly brain-damaged and comatose young woman to be removed from the respirator that was presumably sustaining her life.2 In 1985, the New Jersey Supreme Court held that it might be appropriate to discontinue nasogastric feeding and hydration for a senile, semiconscious 84-year-old nursing home patient who was in failing condition but whose death was not thought to be imminent.3 Extraordinary care was defined as care in which the expectable benefits to the patient cannot be justified when weighed against the burdens. Strict procedural safeguards were imposed to assure that the rights of nursing home patients are protected.

“No code,” or “do not resuscitate” (DNR), orders entered by the attending physician generally are legally acceptable in appropriate cases involving terminally ill patients. If the patient is unconscious or incompetent, family members should be consulted about the DNR decision. Extreme care should be taken when it is known or suspected that a relative opposes the entry of a DNR order. Although some providers have been reluctant to enter a DNR order overtly in the patient’s chart, a written acknowledgment of the DNR decision is advisable. The physician should document carefully the consent of the patient or the next of kin to the entry of a DNR order. Pain-killing drugs may be used even when this may accelerate the death of a terminally ill and failing patient.

Numerous states sanction the use of a living will or natural death directive by which a patient can direct what care should be rendered in a terminal illness if the patient is not competent at that time to provide such direction. Even in states that have not yet officially recognized the legal validity of such devices, their use should help to protect those who act in response to sound medical judgment and the patient’s documented wishes.

Substituted judgment: Termination-of-treatment decisions for incompetent patients commonly are made by attempting to ascertain what the patients would choose for themselves if able. The Quinlan case established this principle as flowing from the patient’s right of self-determination. The substituted judgment approach works best when the patient, before becoming incompetent, either expressed her wishes on the issue of termination-of-treatment or otherwise revealed enough about his/her beliefs so that his/her expressed wishes on the issue reasonably can be inferred.

The New Jersey Supreme Court’s Conroy decision (see previous page) established a three-tiered analytic framework for applying substituted judgment: a “subjective” test is used when patients expressly have stated their wishes at some previous time; a “limited objective” test is used when the patients’ wishes can be inferred from known religious, ethical, or lifestyle beliefs;4 and a “pure objective” test is used when no information is available from which to infer what the particular patient would have wanted. Inferences must be drawn based upon what the “average” person would desire in such a situation. The 2005 case of Terri Schiavo brought many of these issues to the forefront of the Nation’s conscience, when her husband, family, the courts, politicians, and public opinion were all embattled over the husband’s decision to terminate Terri’s life-sustaining treatments. Although the issue was painful for the Nation to confront, recognition and emphasis has again been placed on the need for all adults to have in place documents that define their end-of-life wishes and healthcare proxies.

Two Agency policies relevant to this discussion of patient rights can be found in the Indian Health Manual, Part 3, Professional Services: Chapter 25, Guidelines for Withholding Cardiopulmonary Resuscitation, and Chapter 26, Patient Self-Determination and Advanced Directives (see the Indian Health Manual).


1 Cruzan v. Director, Missouri Department of Health, US Supreme Court, 1990

2 In re Quinlan, New Jersey, 1976

3 In re Conroy, New Jersey, 198517 R isk Management & Medical Liability Manual

4 Brophy v. New England Sinai Hospital, Inc., Massachusetts, 1986.