National Institute for Patient Rights

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The National Institute for Patient Rights is a nonpartisan, free-standing, community interest corporation with a social mission of protecting and promoting patient rights "at the hospital bedside."

NIPR was founded by Dr. Mark E. Meaney^[1] for the purpose of helping patients and their advocates advance their rights.^[2] NIPR is dedicated to improving the provision of health care services in a manner respectful of the dignity of patients.

NIPR sponsors community education programs and publishes materials^[3] to educate the general public on their rights as patients and patient advocates as well as on the exact nature of violations of those rights.

One of NIPR's most important projects centers on calling attention to the community education provisions of the Patient Self-Determination Act of 1990 (PSDA) by calling on Congress and the President to designate a National Patient Rights Day. PSDA remains a touchstone of a social and medical movement to enhance patient rights in hospitals, while preventing the violation of a patient's right to self-determination.

[edit] History

In 2005, the U.S. Supreme Court refused to hear an appeal on the Terry Schiavo case citing precedent. Dr. Meaney and his colleagues were motivated to create a national institute dedicated to the community education provisions of the PSDA as a consequence of the general lack of understanding, even among pundits, of why the Supreme Court refused to hear the case.

In the fall of 1990, Senator John Danforth, a senior Republican from Missouri, introduced legislation and subsequently co-sponsored a bill called the Patient Self-Determination Act (PSDA), which Congress passed into law on November 5, 1990. The law then went into effect on December 1, 1991. PSDA provides a simple statement in law of patient rights. Through the Act, Congress protects patient rights to self-determination and informed consent in the delivery of health care.

The law makes clear the patient right to self-determination in the exercise of medical decision-making during the course of treatment. PSDA mandates that any healthcare institution receiving Medicare or Medicaid funding must inform patients in writing on admission of the following:

their right to accept or refuse treatment
their right to advance directives
their right to information on policies regarding the withholding or withdrawal of life-sustaining treatments.

Since practically every healthcare institution receives some form of Medicare or Medicaid funding, the law protects the autonomy of every individual who seeks health care.

These are the law’s explicit stipulations. Now consider the intent or the spirit of the law. Through the PSDA, Congress intended formally to codify into law the primary obligation of healthcare professionals to ‘pursue the good of the patient.’

It is important to appreciate the historical context within which Sen. Danforth introduced the PSDA legislation. In 1990, at a critical time in the history of the patient rights movement the story of Nancy Cruzan of Cartersville, Missouri gripped the nation. Everyone should know about Nancy Cruzan in gaining a deeper appreciation of the precedent under which the US Supreme Court refused to hear the Terry Schiavo appeal.

On December 11, 1983, 25-year-old Nancy Cruzan was left comatose after a serious car accident. The police pronounced her dead on the scene, but paramedics resuscitated her anyway. After nine months in a coma, doctors diagnosed Nancy as in a persistent vegetative state (PVS). They inserted a feeding tube for long-term care. After four years, her husband and family realized that there was virtually no hope of recovery because of the brain damage Nancy suffered in the accident.

In 1987, her family asked her doctors to remove the feeding tube and allow Nancy to die. However, hospital administrators insisted on a court order before they would permit her doctors to do this. The family’s pursuit of the court order turned into a nationally publicized, three-year court battle. A lower court first ruled that the family could remove the feeding tube based on the testimony of one of Nancy’s roommates, who testified that Nancy had said she would never want to be kept alive ‘hooked up’ to artificial means in such a condition. The hospital appealed the decision to the Missouri Supreme Court, which reversed the lower court’s decision.

The Missouri Supreme Court ruled on three separate issues. The Court first ruled that feeding tubes, or artificial hydration and nutrition (AHN), must be considered part of the ‘ordinary care’ of patients, much like sponge baths. AHN is not a form of medical therapy per se. It then ruled that the removal of her feeding tube would be tantamount to killing Nancy. Finally, the Court decided that the testimony provided by Nancy’s roommate was insufficient to meet the ‘clear and convincing evidence’ standard of due process law.

Nancy’s family appealed the Missouri Supreme Court’s decision to the United States Supreme Court, who also ruled on three separate counts. The Court disagreed with the Missouri Court by ruling that:

a feeding tube, or AHN, is a form of medical therapy—as a form of medical therapy, the Court stated AHN is subject to a benefits-to-burdens analysis like any other medical therapy
there is a distinction between ‘killing’ and ‘allowing to die’

In the instance of AHN the Court ruled that if a medical therapy offers no benefit, doctors do not thereby kill a patient when they withdraw life-sustaining medical technologies, they allow the patient to die. In certain cases involving a terminal illness, doctors may legitimately claim the disease as cause of death and not the withdrawal of medical technologies.

However, the Supreme Court upheld the Missouri Court’s decision on one issue. On June 25, 1990, the Supreme Court affirmed the right of the State of Missouri to require ‘clear and convincing evidence’ of an incompetent person’s expressed wishes, but the Court ruled that competent patients have a constitutionally protected liberty interest in refusing unwanted medical intervention under due process law.

The Court stated that incompetent or incapacitated patients, like Nancy, need certain protections because they cannot exercise this right directly. States may therefore protect such patients by establishing procedural safeguards, such as a ‘living will.’ To this end, a person may supply evidence of their medical preferences in writing while competent in the form of an ‘advance directive’ as a procedural safeguard.

Because Nancy Cruzan’s family had not presented such clear and convincing evidence, the U.S. Supreme Court stated that the Missouri Court was within its rights to refuse to allow the removal of Nancy’s feeding tube. The individual’s right to refuse treatment must be balanced against state interests in the preservation of life.

After the U.S. Supreme Court decision, the Cruzan family petitioned the Missouri court to rehear the case, a full seven years after the car accident. The Missouri court agreed to do so, primarily because of the four important legal precedents the U.S. Supreme Court set in its hearing of the case.

The Supreme Court had affirmed that:

AHN must be considered a form of medical therapy subject to ‘benefits-to-burdens’ analysis
there is a distinction between ‘killing’ (euthanasia)and ‘allowing to die’
doctors may allow a patient to die by removing life-sustaining medical technologies and letting the underlying disease take its course given an appropriate benefits-to-burdens analysis
patients have a right to refuse unwanted medical intervention.

The Supreme Court ended up deconstructing most of the arguments that buttressed the Missouri Court’s ruling on the Cruzan case.

Once the Missouri court agreed to rehear the case, ‘clear and convincing evidence’ was the only remaining issue. Lawyers for the Cruzan family introduced new witnesses in an attempt to address the standard.

For example, a co-worker stated that during a conversation, Nancy said if she were a “vegetable” she would not want to be force-fed or kept alive by machines. Nancy’s doctor also changed his mind in favor of removal of the feeding tube. So, the Court finally gave authorization for her doctor to remove the feeding tube. Nancy was allowed to die shortly thereafter.

Sen. Danforth introduced the Patient Self-Determination Act largely in response to the Cruzan case. Following the Supreme Court ruling, Danforth sought to enact legislation that would help other patients and their families avoid the legal snares faced by the Cruzan family.

The law protects the right of a competent patient to refuse unwanted medical treatment. It also establishes procedural safeguards, such as an advance directive, so that incompetent patients can represent their medical preferences even when they become incapacitated.

Consequently, along with rights conferred to competent as well as incompetent patients, the PSDA guarantees a patient’s right to an advance directive. Finally, the law recommends that hospitals and healthcare professionals engage in community education around the issue of patient rights to self-determination, informed consent and advance directives.

The National Institute for Patient Rights was created for the purpose of realizing the community education provisions of the PSDA. Efforts at community education under PSDA have been woefully inadequate, and that the nation has for all intents and purposes forgotten the sufferings of the Cruzan family.

NIPR programs and publications intend to remedy these shortcomings.