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December 1, 1999

Legal Rights to Health Care at the End of Life

Author Affiliations

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JAMA. 1999;282(21):2079. doi:10.1001/jama.282.21.2079-JMS1201-5-1

US residents do not have a legal right to the care that they would like to have at the end of life. They do not have the legal right to demand expensive life-extending care, despite limited prospects of success; nor do they have the legal right to expect even minimal comfort care. In the United States there exists no general legal right to end-of-life care, extensive or minimal, just as there is no general legal right to health care. There are exceptions to these assertions; specific groups such as the elderly, the disabled, the poor, the imprisoned, or those with end-stage renal disease, may, because of their legal status or health condition, have been granted limited rights to health care. The right to health care at the end of life is thus a complex picture, and addressing the issue comprehensively requires a basic understanding of the nature of rights and the structure of a federalist legal system.

Rights may be either positive or negative. A positive, or welfare, right would be the right to actually receive care. A negative right, or right of noninterference, would be the right not to encounter barriers in seeking care. Unlike most other advanced industrialized nations, the United States does not have a tradition of legally recognizing general welfare rights. Positive rights, therefore, exist only within limited circumstances.

Although the US Constitution does not grant any general welfare rights, there is one health care exception. Prisoners have the right under the 8th Amendment not to be subjected to cruel and unusual punishment; this right is violated when incarcerated people do not receive adequate health care.1

Federal statutes extend some additional positive rights in the health care arena. Individuals over the age of 65 who qualify for Social Security, permanently disabled persons, and those with end-stage renal disease are entitled to Medicare funding.2 But Medicare has coverage limitations. It does not cover experimental care or care that is not deemed reasonably medically necessary. New life-extending therapies, such as autologous stem cell transplants for multiple myeloma, may not be covered by Medicare.3 Medicaid, a federal program that extends health care dollars to state programs for the poor, also provides some coverage for end-of-life care. Approximately 30% of Medicaid funds are spent on care for the impoverished elderly, although only 11.9% of Medicaid recipients are over age 65.4 In addition, the Emergency Medical Treatment and Active Labor Act (EMTALA) is a federal statute that was enacted to prevent patient dumping.5 EMTALA requires facilities receiving federal funds and operating an emergency department to provide appropriate medical screening examinations and temporary and necessary stabilizing care. In some circumstances, courts have held that the stabilizing care required may be quite extensive, but it does not extend to longer-term modes of care, such as chemotherapy.6

The US Constitution assures negative rights of nondiscrimination and of liberty that are relevant to health care. The 14th Amendment prohibits states from depriving citizens of equal legal protection. Therefore, state institutions or agencies may not discriminate in providing end-of-life care on the basis of race, nor can they ration care in a manner that fails equal protection scrutiny.

Several recent decisions of the US Supreme Court have explored the protection of patient liberties under the 14th Amendment's due process clause. The decision in Cruzan v Director, Missouri Department of Health assumed that competent patients have the right to refuse care and indicated that states may not unduly burden patients' efforts to extend that liberty through advanced-care planning.7 In Compassion in Dying v Washington8 and Vacco v Quill,9 however, the Supreme Court refused to extend constitutionally protected liberty to aid in dying. Several justices did nonetheless suggest that they would extend protection to adequate palliative care.

Within limits set by the US Constitution or federal statutes, states also may extend legal protection to citizens' liberty to seek out end-of-life care. States may also extend some rights to care itself through mandated benefits, state medical emergency funds, or state analogs to EMTALA. State constitutions or statutes may protect more extensive liberty rights or antidiscrimination rights than the federal constitution. For example, state intractable-pain statutes protect physicians who follow medically acceptable forms of aggressive pain management. Perhaps the most controversial state initiative is Oregon Measure 16, which protects physicians who write prescriptions intended for aid in dying, in accord with prescribed safeguards.10

Thus in the United States today, rights to end-of-life care are limited and highly variable. A patient may have a status such as imprisonment, a condition such as end-stage renal disease, or a state residency that brings with it legal claims to care. More likely, a patient will only receive legal protection preventing interference with the health care that she or he is otherwise fortunate enough to be able to access.

Not Available, Estelle v Gamble, 429 US 971976;
Not Available, Not Available USC §§1395rr1994;
Not Available, Medicare Coverage Issues Manual (Social Security Administration). §35- 3011996;
US Department of Health and Human Services, Health, United States, 1998.  Washington, DC US Dept of Health and Human Services1988;
Not Available, Emergency Medical Treatment and Active Labor Act, 42 USC §1395dd (supp1999).
Not Available, In the Matter of Baby K, 16 F3d 590 (4th Cir 1994).
Not Available, Cruzan v Director, Missouri Department of Health, 497 US 2611990;
Not Available, Compassion in Dying v Washington, 521 US 7021997;
Not Available, Vacco v Quill, 521 US 7931997;
Not Available, Not Available Oreg Rev Stat §127.800.