Patient Rights
| Author | Jeffrey Wilson |
| Pages | 911-919 |
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The advent of the "patient rights" movement and associated legislation is a relatively recent phenomenon, having first taken root in the early 1990s. However, as of January 2006, a divided and partisan U.S. Congress was still grappling with various provisions for a federal Patients' Rights Law, and none appeared likely in the foreseeable future. Part of the delay was due to the 2004 U.S. Supreme Court decision in Aetna v. Davila, which severely limited patients' rights to sue their HMOs in state courts. (The Court held that the federal Employee Retirement Income Security Act [ERISA] preempted state laws in this area.) The decision impacted and invalidated provisions in at least ten state patients' rights laws.
Notwithstanding, all states have enacted some form of health care law addressing "patient rights." The problem remains that there is no uniformity of laws, and the scope of rights afforded patients varies greatly from state to state.
The term "patient" generally refers to a person who is receiving medical treatment and/or who is under medical care. Certain vulnerabilities attach to the status of patient. For this reason, certain laws have been passed at both the national and state levels to protect people's interests which otherwise might be compromised by medical, social, governmental, and/or financial entities. These protective provisions may be in the form of passive guarantees, or they may spring into effect as a result of some affirmative act on an individual's part, such as the execution of a legal document, like a Patient Directive or Durable Power of Attorney (see below).
Generally speaking, the rights of a patient fall into a few main categories: the right to autonomy and self-determination (which includes the related right to withhold or grant informed consent), the right to privacy concerning medical information, and the right to receive treatment (not be refused treatment). Some hospitals refer to these collectively as a "Patient Bill of Rights," but there is no such "bill of rights" document per se, excepting a generally accepted (but not mandated) model version prepared by the American Medical Association and frequently used by hospitals.
In early 2005, a shocked and empathetic nation watched the private and personal drama of a family
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in conflict play out on national television, as the parents of quasi-comatose Terri Schiavo fought with her husband over whether to remove her from life support. Ultimately, the husband prevailed, on the notion that his wishes to remove life support were consistent with what she had told him she would want. His sworn testimony was contrary to that of her parents, and the entire controversy served to remind persons of the need to communicate their wishes prior to an emergency which may prevent them from communicating.
Considered one of the most important and fundamental of all is patients' right to direct the medical treatment they choose to receive or reject. Patient "autonomy" or self-determination is at the core of all medical decision-making in the United States. It means that patients have the right and ability to make their own choices and decisions about medical care and treatment they receive, as long as those decisions are within the boundaries of law. There is a legal presumption that they are fit and competent to make those decisions until a court determines otherwise.
But what happens when they are suddenly incapacitated and unable to express their wishes regarding their medical care? Thanks to a few historical developments, they can now pre-determine the medical care they wish to receive in the event that they become incapacitated by mental or physical injury or condition. By making their wishes and directives known to their doctors and others before they might suffer the loss of fitness or competency, they are able to avoid the circumstance of a court being forced to second-guess what is best for them or what their wishes would be. Additionally or in the alternative, patients may delegate to another person the power to make these medical decisions for them, should they lose consciousness or competency in the future.
These two concepts sound redundant but are actually quite different. In the first instance, patients have declared in advance the medical treatment they wish to receive in the event that they can no longer express those wishes (commonly referred to as a "living will"). In the second instance, patients have authorized another person to make those medical decisions for them in the event that they can no longer make themselves (commonly referred to as a "health care proxy," or "durable power of attorney for health care.") Additionally, most "living will" documents address medical care and efforts in the event of life-threatening or terminal conditions. Durable powers of attorney generally address medical decision-making in any circumstance where patients are unable or not competent to speak for themselves, whether the condition is temporary or permanent.
The modern trend has been to create a "hybrid" of the above, which combines a declaration of the patients' own wishes with an appointment of a durable power of attorney to make decisions for them (which must be consistent with their declared wishes). Any or all of these legal devices are generally referred to as "advance directives for health care."
The Uniform Health-Care Decisions Act (UHCDA), approved in 1993 by the National Conference of Commissioners on Uniform State Laws, constitutes such a "hybrid" law intended to replace the fragmented and often conflicting laws of each state. Because existing laws (often several within each state) must be separately reviewed and compared to those provisions comprehensively collected under the umbrella Act, adoption has been slow. As of 2001, only six states had adopted the Act to replace their existing statutory provisions (Alabama, Delaware, Hawaii, Maine, Mississippi, and New Mexico) but dozens more have modeled their own comprehensive health care acts after the UHCDA.
Of course, advance directives are useless unless individuals provide copies of them to their doctors and their families or attorneys-in-fact, while they are still competent and before any incapacitation arises. Otherwise, medical personnel cannot effect their wishes if they are not made aware of them. Importantly, individuals should also keep a copy at their residence, in the event an ambulance is called on their behalf if a medical emergency arises. Without direction, ambulance personnel may initiate life-sustaining procedures that are contrary to their wishes. This is often the case for terminally ill patients who choose home hospice care and have not made other persons aware of their advance directives (even though their treating physicians may be aware of them).
One more note: if individuals do not execute an advance directive in any form, many states have passed "surrogate consent acts" which mandate the priority of surrogates permitted to make decisions about their care, should they be incapacitated.
In 1990, the U. S. Supreme Court decided one of the most important cases of the century, with far-
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reaching consequences for all citizens, when it ruled that every person had a fundamental right of self determination with regard to refusing life-sustaining medical treatment. In the case of Cruzan v. Commissioner, Missouri Department of Health, 497 U.S. 261 (1990), the issue centered around who had the right to decide to remove a permanently brain-damaged and comatose patient from life-support systems, in the absence of the patient's own ability to express that determination. (The case included family testimony expressing what they felt the patient's wishes would have been.)
In Cruzan, the family of comatose Nancy Cruzan, an automobile accident victim, requested that she be removed from life support systems and be allowed to die naturally. The hospital refused to withdraw the life support equipment. Cruzan remained on life support in an irreversible coma for the next nine years, while the case went through several appeals. Follow ing the Supreme Court's decision, Cruzan's life support equipment...
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