It is a family’s worst nightmare. A loved one is desperately ill but a health care facility or provider refuses life-saving treatment on the grounds that this care is “futile.”
This is occurring, with increasing frequency, all across the U.S. In many cases, health care providers call life-saving medical treatment “futile” not because it will fail to preserve the patient’s life, but because they deem the life not worth saving – that the “quality of life” is so poor that in their judgment the patient has lost the right to live.
S. B. 165, known as the “Medical Good-Faith Provisions Act,” takes the basic step of prohibiting a health facility or agency from maintaining or implementing a medical futility policy unless it is in writing. Moreover it will require a health facility or agency that maintains a medical futility policy to provide a copy upon request to a patient or resident, prospective patient or resident, or parent or legal guardian of any of those people.
In the wake of the tragic Terri Schiavo case, many authorities urged Americans to complete advance directives which allow you to name someone to speak for you and express treatment preferences. Every state authorizes these legal documents. They allow a person to specify ahead of time whether and under what circumstances she or he wants life-preserving medical treatment, food or fluids when no longer be able to make health care decisions.
However, the laws of most states may allow doctors and hospitals to disregard advance directives when the directive calls for treatment, food, or fluids. Increasingly, health care providers who consider a patient’s “quality of life” too low are denying life-preserving measures against the expressed wishes of patients and families. Unfortunately the laws of most states provide no effective protection against this involuntary denial.
The result: in most states, if you want life-saving treatment–or even food and fluids–there is no guarantee your wishes will be honored, even if you make them clear in a valid advance directive.
When challenged by families, health care providers often claim the treatment is being denied because it is “futile”.
On its face, the term futile seems like a simple concept: treatment that will not work. However, it is important to distinguish between the narrow physiological and the broader value-laden use of the term. As described by the New York State Task Force on Life and the Law,
“Some physicians use ‘futile’ narrowly, considering treatments to be futile if they would be physiologically ineffective or would fail to postpone death…. Many physicians embrace a broader, more elastic understanding of the term. … [A] treatment might be seen as futile if it does not offer what physicians consider an acceptable quality of life. For example, in one survey, a majority of physicians agreed that for a severely demented patient with Alzheimer’s disease, CPR [cardio-pulmonary resuscitation] would be ‘so clearly inappropriate or futile on medical grounds that physicians should be permitted to institute DNR status based on clinical judgment, without obtaining consent.’”
An example of that “broader, more elastic understanding” is a 2011 text, “Wrong Medicine: Doctors, Patients, and Futile Treatment.” In it the authors write, “If a patient lacks the capacity to appreciate the benefit of a treatment, . . . that treatment should be regarded as futile. . . . [W]e draw the line at some point between patients’ rights to choose their own quality of health and life and the medical profession’s obligation to achieve those ends.”
What many would find shocking is that these kinds of unilateral decisions by providers to deny treatment are far from uncommon. One study found that “14% of physicians in adult intensive-care units had withheld or withdrawn treatment they considered futile without informing the patient’s family. More than 80 percent had withdrawn treatment over the family’s objections.”
So what is happening in practice is that treatment is being refused not because it is truly medically futile, but because the provider is making value judgments about the life of the person the treatment should go to. Highlighting this problem in the legislative hearings in Michigan, family members of a girl with a disability gave the main testimony.
They described how their daughter was denied routine treatment on the basis of the treatment being “futile”, not because it would not be effective, but because she has Trisomy 18. (For more on this, see “The appearance of medical care is not enough.” )
Although the Michigan bill took aim at clarifying futility, there is larger issue about what the patient’s options are once a health care provider is actually denying treatment against the expressed wishes of the patient or their surrogate. While the simple answer would seem to be, “find a new provider,” this often takes time–while the patient might go without treatment–or might not be possible.
There are several kinds of state laws governing this very circumstance.
Some states have no protection. The relevant laws of nineteen states provide no effective protection of a patient’s wishes for life-preserving measures in the face of an unwilling health care provider.
Fourteen states offer protection. Ten states have laws that essentially protect the choice of a patient whose advance directive specifies that life-preserving measures should be provided in circumstances in which the doctor, hospital or other health care provider disagrees. Typically, the statutes in these states allow the unwilling health care provider to transfer the patient to a provider willing to comply with the patient’s advance directive but require that life-sustaining care be provided until the transfer can be completed.
Two states require that unwilling health care providers give the life-preserving measures chosen in advance directives pending transfer of the patient to a willing health care provider, but establish time limits by which a successful transfer must be arranged and authorize denial of treatment, food or fluids if the time runs out. Idaho simply requires life-preserving treatment. And in a new anti-discrimination approach, Oklahoma prevents the denial of treatment based on age, disability, or terminal condition.
The rest of states have statues that offer questionable protection. The state of Michigan is one of seventeen states (including the District of Columbia) that have statutes with language that might be cited to support a right to receive life-preserving measures specified in accordance with an advance directive, but either the language is ambiguous or it could be trumped by other provisions in state law.
While the enactment of the “Medical Good-Faith Provisions Act” is a positive step in Michigan, there is still much ground to make up. Americans are being urged to set down their wishes concerning life-preserving medical treatment, food and fluids in advance directives. To the extent those advance directives call for food, fluids, or life-preserving medical treatment in some or all circumstances, however, in the present state of medicine and the law there is no guarantee they will be honored in most states.
More on the law on your state, including a full report titled “Will Your Advance Directive Be Followed” can be found on nrlc.org.
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 New York State Task Force on Life and the Law, When Others Must Choose: Deciding for Patients Without Capacity (New York: n.p., 1992), pp. 196-97, quoting N. Spritz, “Views of Our Membership Concerning the DNR Issue and the New York State DNR Law,” in Legislating Medical Ethics: A Study of New York’s DNR Law, ed. R. Baker and M. Strosburg, Philosophy and Medicine Series (Dordrecht: Kluwer Academic Publishers).
 Lawrence J. Schneiderman and Nancy Ann Silbergeld. Jecker, Wrong Medicine: Doctors, Patients, and Futile Treatment (Baltimore: Johns Hopkins University Publications, 2011).
 Cited in Patricia O’Donnell, “Ethical Issues in End-of-Life-Care: Social Work Facilitation and Practice Intervention” in Living with Dying: a Handbook for End-of-Life Healthcare Practitioners, ed. Joan Berzoff and Phyllis R. Silverman (New York: Columbia University Publications, 2004).
LifeNews Note: Jennifer Popik is a medical ethics attorney with National Right to Life. This column originally appeared in its publication National Right to Life News Today.