A 30-year old Florida Supreme Court decision may provide support for the use of a dementia directive that provides for voluntarily stopping eating and drinking (VSED).
The court set out to answer the following question in the case In Re Guardianship of Browning:
Whether the guardian of a patient who is incompetent but not in a permanent vegetative state and who suffers from an incurable, but not terminal condition, may exercise the patient’s right of self-determination to forego sustenance provided artificially by a nasogastric tube? (Citation omitted.)
The simple answer provided by the court is “yes,” but its opinion may provide grounds for broader application of the desire of some people to forego hand feeding in the later stages of dementia.
Estelle Browning, while competent, had executed an advance directive that provided, in part:
If at any time I should have a terminal condition and if my attending physician has determined that there can be no recovery from such condition and that my death is imminent, I direct that life-prolonging procedures be withheld or withdrawn when the application of such procedures would serve only to prolong artificially the process of dying. . . . [and I desire not to have] nutrition and hydration (food and water) provided by gastric tube or intravenously.
About a year after her declaration, Browning suffered a debilitating stroke that left her mentally incapacitated and unable to swallow, with “virtually no chance of recovery,” and underwent a gastrostomy procedure to have a tube inserted into her stomach that permitted the administration of nutrition.
Browning’s only living relative was later appointed as her guardian. For two years, Browning suffered many complications from the gastrostomy tube and later a nasogastric tube that were used for providing nutrition. Browning’s guardian then filed a petition in the circuit court to discontinue the artificial feeding.
Five years before Browning executed the directive providing for no life-prolonging procedures if there was no hope of recovery, she had written another directive that had expressed the same views about her care. Friends and neighbors, and the guardian, who had lived with Browning for four years, attested that Browning had several times expressed such views to them orally, as well.
A long-time personal friend, Rose King,
testified that Mrs. Browning signed the declaration about two days after visiting patients in a nursing home and had said, “Oh Lord, I hope this never happens to me … thank God I’ve got this taken care of. I can go in peace when my time comes.” Mrs. Kings’ husband added that Mrs. Browning had a friend in the hospital on life-support and remarked that she “never want[ed] to be that way.” (Citation omitted.)
Medical evidence revealed that Browning continued to live only because of the nutrition provided by the gastric tubes. A neurologist described Browning’s condition–”the absence of cognitive behavior and inability to communicate or interact purposefully with the environment.”
Nevertheless, both the trial court and the appellate court accepted the view “that the termination of [Browning’s] treatment was not permitted under [Florida’s ‘Life-Prolonging Procedure Act,’].” The Florida Supreme Court took a different view, however, basing its decision on a “fundamental right of self-determination, commonly expressed as the right of privacy.” The Court quoted from a Harvard Law Review article and a Florida State University Law Review article discussing privacy:
“Privacy” has been used interchangeably with the common understanding of the notion of “liberty,” and both imply a fundamental right of self-determination subject only to the state’s compelling and overriding interest. For example, privacy has been defined as an individual’s “control over or the autonomy of the intimacies of personal identity,” . . . ; or as a “physical and psychological zone within which an individual has the right to be free from intrusion or coercion, whether by government or by society at large.” (Citations omitted.)
The Court also recognized a right to privacy as found in Florida’s Constitution. It quoted Justice Cardoza’s famous statement, made over 100 years ago: “Every human being of adult years and sound mind has a right to determine what shall be done with his own body… .”
The Court went on to reason that:
Recognizing that one has the inherent right to make choices about medical treatment, we necessarily conclude that this right encompasses all medical choices. A competent individual has the constitutional right to refuse medical treatment regardless of his or her medical condition.
Then, it quoted the U.S. Supreme Court’s Cruzan decision:
we assume that the United States Constitution would grant a competent person a constitutionally protected right to refuse lifesaving hydration and nutrition.
It then posed a question,
[What if] life has been physically destroyed and its quality, dignity and purpose gone? As in all matters lines must be drawn at some point, somewhere, but that decision must ultimately belong to the one whose life is in issue.
The Court noted that other courts have accepted such decision-making from those who are severely disabled for a long time, those who refuse life-saving blood transfusions, and those with ALS. Its important conclusion about the state of end-of-life law in Florida is this:
We conclude that a competent person has the constitutional right to choose or refuse medical treatment, and that right extends to all relevant decisions concerning one’s health. Courts overwhelmingly have held that a person may refuse or remove artificial life-support, whether supplying oxygen by a mechanical respirator or supplying food and water through a feeding tube. We agree and find no significant legal distinction between these artificial means of life-support. . . . We are persuaded that when the patient has taken the time and the trouble to specifically express his or her wishes for future health care in the event of later incapacity, the surrogate need not obtain prior judicial approval to carry out those wishes. This applies whether the patient has expressed his or her desires in a “living will,” through oral declarations, or by the written designation of a proxy to make all health care decisions in these circumstances. (Emphasis added. Citations omitted.)
This right of privacy extends to both the competent and the incompetent, and may be determined by previous written instruments (such as advance directives or other writings), as well as oral statements supported by “clear and convincing evidence.” Further, in implementing the written or oral directives of a person, the Court laid down several conditions for surrogate decision-making:
1. The surrogate must be satisfied that the patient executed any document knowingly, willingly, and without undue influence, and that the evidence of the patient’s oral declarations is reliable; 2. The surrogate must be assured that the patient does not have a reasonable probability of recovering competency so that the right could be exercised directly by the patient; and 3. The surrogate must take care to assure that any limitations or conditions expressed either orally or in the written declaration have been carefully considered and satisfied.
Perhaps the most significant holding of the Court related to VSED can be found in its “CONCLUSION”:
[T]here is no legal distinction between gastrostomy or nasogastric feeding and any other means of life support. This case resolves a question of an individual’s constitutional right of self-determination. We are hopeful that this decision will encourage those who want their wishes to be followed to express their wishes clearly and completely. (Emphasis added.)
It is reasonable to view hand feeding as an “other means of life support” under the circumstances of someone who is permanently mentally incapacitated and dying from an irreversible condition.
While hand feeding is not as traumatic for the patient as intubation (which may be refused), gastrostomy and similar tubes placed in the body, or intravenous delivery of hydration and nutrition can be, it generally requires training and certification (in part to try to prevent aspiration, which can lead to pneumonia), often the need for special equipment, frequently a special diet (depending on the swallowing and chewing circumstance of the patient), and often is ordered by a clinician. These requirements place hand feeding in the medical treatment or care category.
The Browning case and similar cases should help move us toward greater acceptance of the refusal of hand feeding by advance directive and the implementation of such a directive by a surrogate decision-maker.
The nation really needs a Constitutional Amendment permitting anyone to have the right to die for any reason at any time if they are over 12 years old. Belgium has such a law and any Belgian citizens, even in mental hospitals, has the right to die if they request it. Conditions should not restrict such a law. It is not only folks with physical illnesses who suffer. The reasons for suffering are physical, mental, social, financial and a myriad of other conditions.
Consider a situation when a surrogate will benefit financially by having the patient die sooner rather than later. How is there any way to prevent a patient’s death to prevent the surrogate from lining his or her own pockets? There must be safeguards to prevent this: either the surrogate cannot be named in the patient’s will, he or she must wait a specified number of years before receiving a bequest, or the money or other assets he or she receive must be distributed in increments low enough that it will not put him or her on Easy Street. There could be exceptions in cases of severe financial hardship, of course.
The role of a surrogate is not to male decisions based on what the surrogate thinks is best or appropriate. The role of a surrogate is to implement the decisions of the patient. Only when it is not possible to determine what the patient wants, may a surrogate decide what she believes is in the patient’s best interest. Clinicians/nurses should not approve any decisions that do not follow the decisions of the patient made in an advance directive, which is why advance directives must the clear and thorough.