Dementia directive confusion and obfuscation

Whether intentionally or inadvertently, a recent article in the Washington Post, written by a reporter with Kaiser Health News, provides confusing, incomplete, misleading, and perhaps inaccurate information about the choices a person with dementia may have.  It dismisses legal issues by citing opinions from non-legal professionals.

Clearly, in every state in the US, persons diagnosed with dementia, but still mentally competent, can hasten their own death before the disease takes too much of their memory, reasoning capacity, and physical ability.  They can do so directly, peacefully, safely, and efficiently by using inert gas.  They can also voluntarily stop eating and drinking (VSED).  What is unclear is whether they can use VSED via an advance directive.  

The Washington Post article suggests that it is legitimate for a continuing care center in New York to prohibit VSED in someone who while mentally competent executes an advance directive instructing that they should not receive food and hydration at a time when they are no longer competent.  The care center is a retirement community, Kendall at Ithaca, that has prohibited a resident, Susan Saran, from refusing food and drink, based on claims that state and federal law prohibit it.  New York’s health law states that oral feeding “without reliance on medical treatment” may not be rejected through an advance directive.

That phrase, “without reliance on medical treatment,” is confusing or ambiguous, however.  Frequently, hand feeding a person is medical treatment.  As I explained here, hand feeding requires medical training under federal health law and regulations.  In addition, feeding against the explicit terms of the directive is a battery against the person being hand fed.  Stating in writing that at a certain point in a disease process I do not want to be hand fed will put another person on notice that hand feeding will violate both civil and criminal law. 

Hand feeding as medical treatment

Hand feeding in contravention of a clear directive prohibiting it is an unwanted intrusion into another’s bodily integrity and is actionable: it is nonconsensual, harmful, or offensive contact. To be actionable, it is enough that a person causes an object, such as a feeding implement, to contact someone who does not want the contact.  Law professor Thaddeus Pope has suggested that “placing food within a person’s reach when the caregiver clearly knows that the patient is voluntarily refusing food” might constitute a battery if the purpose is to thwart the patient’s directive. The harm or offensiveness may be the interference in the VSED process, causing the patient to suffer or endure unacceptable loss of dignity.

I consider providing nutrition and hydration to be medical treatment or care, and I say so directly in my supplemental directive.  Others will argue against this position, but it is my choice to determine what medical treatment and care I will receive, and I should be able to decide what is included in that definition.  If my competent self can refuse a type of care for my competent self, my competent self can refuse it for my incompetent self.  That is why such directives are termed advance directives.  Otherwise, there would be no purpose for them.  They are written to control future medical treatment and care before the writer of the directive becomes mentally incompetent.

Pope has cited cases in both the “hunger strike” context and in nursing homes when courts have refused to permit prisoners or patients to be force fed against their decisions.  Hand feeding, while not as traumatic for the patient as intubation or intravenous delivery of hydration and nutrition can be, generally requires training and certification (in part because of the danger of aspiration), often the need for special equipment, and frequently a special diet (depending on the swallowing and chewing circumstance of the patient), requirements that place hand feeding in the medical category.  In addition, when it is done, it is often on the order of a physician, which by anyone’s definition should make it medical treatment.

Often, if a patient is in an institution, administrators may fear civil, criminal, or regulatory penalties for abuse or neglect if adequate food and liquids are not provided.  However, abuse and neglect depend on the deliberate or negligent denial of food and liquids, not their voluntary absence as part of a deliberate plan initiated by the patient.  In the latter circumstance, the patient does not want nutrition and hydration; withholding it is legally the patient’s choice.  As Pope notes, both Medicare and Medicaid requirements specifically give the patient “the right to refuse treatment.”  Obeying a patient’s instructions about care should never be seen as abuse or neglect, but failing to obey them could be abuse or worse.

The Washington Post article provides a link to an annotated chart of the health law by state.  Great care should be taken when trying to understand the referenced laws.  As with the New York law, a careful reading may reveal that the laws are not that straight-forward; they may contain unconsidered ambiguity and/or conflict with other state laws or the common law, as well as the constitutional rights of patients.

Validity of dementia directives

It is true that dementia directives, such as the one signed by Susan Saran, may not be valid, but there are good reasons to believe that they should be upheld by the courts.  Saran’s reason for issuing her advance dementia directive is clear and reasonable: “I don’t want my life prolonged beyond the point where I’m participating in life.”

As retired Rutgers law professor Norman Cantor has explained, American law supports the efforts of competent persons to control the medical fate of their subsequent incompetent selves.  Starting with the Quinlan case in 1976, the courts have established a fundamental right of competent persons to reject (or accept) life-sustaining medical interventions.  This right is based on self-determination and bodily integrity (the interest in being free from nonconsensual invasion of one’s body), and various courts have found support for this right in the common law, state constitutional provisions, the liberty clause of the 14th Amendment of the US Constitution, and the right to privacy (seen by some as a right that arises out of other enumerated rights).

And these courts have readily held that a competent person’s right to control medical intervention is not lost by onset of incompetency.  If the now-incompetent patient has made known clear preferences regarding post-competence medical care, those preferences will control the medical care she should receive.

In fact, the court in the Cruzan case required proof of what Nancy Cruzan’s wishes were should she lapse into the persistent vegetative state (PVS) she was in. That proof was then provided in a Missouri probate court through testimony by her family and friends that she had stated to them that under such circumstances she would not want to continue receiving life-sustaining medical treatment (a feeding tube in this case). Based on this evidence, the (probate) court, using the “clear and convincing evidence” standard announced by the Missouri Supreme Court and accepted by the United States Supreme Court, approved allowing her gastrostomy tube to be removed.

Leaving clear written instructions about how one wants one’s non-competent self to be treated satisfies the “clear and convincing evidence” standard.  If a person has this concern, the time to put directives and preferences in writing is now.  Relying on the future testimony of friends and family assures that the matter will be in litigation, while a clear written statement of directives and preferences has a chance to prevail without court intervention.  And note that both Karen Ann Quinlan and Nancy Cruzan were in their 20s at the onset of their problems, demonstrating that even young people should have advance directives.

There is further support for decision-making before a person becomes mentally incapacitated.  As Cantor has noted, the AMA Principles of Medical Ethics opinions support “upholding a now-incompetent patient’s prior treatment choices even in the face of a physician’s differing value judgment about remaining quality of life.”  An advance instruction withholding life-sustaining medical intervention from even a non-suffering demented person is both lawful and ethical.

Conclusion

The Washington Post article is far too negative in its assessment of advance dementia directives.  It relies on a psychiatrist, a geriatrician, and a director of long-term care facilities for opinions against dementia directives without considering the legal arguments that knowledgable attorneys might make about their validity.  

While there is no legal analysis or argument provided in the article, it does cite Thaddeus Pope to explain that we will have to await court decisions in such cases before we will be able to ascertain the legal status of dementia directives.  In the meantime, the best approach for those of us concerned about such matters is to sign our own dementia directive.  Eventually, one of us who has done so so will become a test case.  In some states, it may be possible to seek a decision through a declaratory judgment action that will clarify the status of such directives.  If that remedy is available to Saran, I hope she takes it.