End Of Life Choices

Ailish O'Connor, Esquire, Berg and Associates, P.A.,

The time between Nancy's "date of death" and the date that she was "at peace" spans the period of seven years. Her story is well known: After a car accident, Nancy was found without any detectable respiratory or cardiac function. She was revived and stabilized and brief rehabilitation was attempted. Nancy lay in a persistent vegetative state, nourished by a gastrostomy tube. She was not considered terminally ill or dead. Her doctors estimated that she could live this way for another thirty years.

Nancy had no written living will, but had once engaged her sister in a "somewhat serious" conversation about her wishes to discontinue life-sustaining measures if she could not live a normal life.

When it became clear that Nancy would not recover, Nancy's family petitioned to remove the feeding tube, and the case began wending its way through a series of appeals. The Missouri Supreme Court denied the petition, saying there was no clear or unambiguous evidence about Nancy's wishes concerning use of life sustaining treatment. The United States Supreme Court essentially agreed, ruling that Nancy had the right to make her wishes known, but that Missouri had the right to require that Nancy's wishes be proved by "clear and convincing evidence" and that, absent clear instructions, Nancy's "best interests" were that she stay alive, even in her current condition. Upon remand, the trial court heard new evidence and found that Nancy's wishes were in fact clearly and convincingly proved, and granted the petition removing the feeding tube. Nancy died shortly thereafter.

What does this mean to the residents of Florida?

You may already know that under Florida law a competent adult has the right to refuse life-sustaining or medical treatment of any kind. In addition, Florida law permits a competent adult to designate in writing his or her wishes in the event that later incapacity and dire illness thwart his or her hopes for a peaceful death. This declaration is often called a "Living Will." Thus, a person who had the right to refuse a blood transfusion while capacitated, has the same right to prevent the State from forcing a blood transfusion upon her simply because she can no longer speak for herself.

Florida has its own celebrated "right-to-die" case: In re: Browning, 568 So.2d 4 (Fla. 1990). The Florida Supreme Court stated that "when an incompetent patient has left instructions regarding life-sustaining treatment, the surrogate [decisionmaker] must make the medical choice that the patient, if competent, would have made, and not one that the surrogate might make for himself or herself, or that the surrogate might think is in the patient's best interests." This is often called the doctrine of "substituted judgment."

The breadth of Browning, and the difference between Browning and the current living will statute, is that a patient need not be "terminal" in order to utilize the right to privacy to refuse medical treatment. However, in every incarnation of the Living Will Statute under Chapter 765, the patient is required to be "terminal," "end-stage," or "vegetative." This distinction is often called the "barrier language" of the statutes. Even the most current version of the statute (October 1, 1999) still contains the barrier language. Many religious organizations have fought to prevent removal of this "barrier language" for fear of a slippery-slope to euthanasia or mercy killing.

The Florida Living Will Statute is found in Florida Chapter Section 765. This law was substantially updated effective October 1, 1999. The Florida Legislature "recognizes that for some the administration of life-prolonging procedures may result in only a precarious and burdensome existence..." The purpose of the newly revised statute is to make clear the State's position that:

1. All persons should have access to effective pain management and palliative care;
2. Physicians and healthcare providers must be educated to ensure that patients in pain are regularly assessed and treated;
3. Cultural and ethnic beliefs of a patient should be honored;
4. Pain should be measured and managed as a "fifth vital sign;"
5. Healthcare providers should use medication to manage pain, without fear of lawsuits; and
6. The Florida Constitution permits a competent adult to express their wishes regarding the use of life-sustaining measures, and such statements made by the patient shall continue even if the patient becomes incapacitated.

The new Florida Statute Chapter 765 reworks the language in the old Living Will Statute, and adds a new category, "end stage condition." Thus, the current "threshold criteria" for ending artificial life-sustaining procedures are:

1. "End-Stage Condition" — defined as "a condition that is caused by injury, disease, or illness which has resulted in severe and permanent deterioration, indicated by incapacity and complete physical dependency, and for which, to a reasonable degree of medical certainty, treatment of the irreversible condition would be medically ineffective."
2. "Persistent Vegetative State" defined as "a permanent and irreversible condition of unconsciousness in which there is:

• The absence of voluntary action or cognitive behavior of any kind;
• An inability to communicate or interact purposefully with the environment."

3. "Terminal Condition"—defined as "a condition caused by injury, disease, or illness for which there is no reasonable medical probability of recovery and which, without treatment, can be expected to cause death."

The statute specifically carves out the Florida Medical Consent Law, and indicates that the creation of a Living Will cannot affect the issuance or payment of benefits under any life insurance policy, nor can a healthcare facility require a patient to sign a Living Will, nor can the appropriate withdrawal of life-prolonging procedures be deemed a murder or suicide.

If a patient has not made a Living Will Declaration, but has designated in writing a "Health Care Surrogate," then the surrogate may make decisions regarding life-prolonging procedures unless the patient has specifically limited the surrogate's authority to do so. However, the surrogate must find that the patient does not have a reasonable medical probability of recovering capacity and must also find that the patient is both mentally and physically incapacitated with no reasonable medical probability of recovery. This is a broader requirement than if a Living Will were correctly drafted and executed.

Some of the problems with any definition of "Terminal" are that there is no commonly accepted clinical definition of "Terminal." Is it —Days? —Weeks? —Whenever death is inevitable? To some extent, the creation of the "End stage" category was meant to clarify "Terminal." But note the broad difference between "no reasonable medical probability of recovery" (found in the Terminal definition), versus "to a reasonable degree of medical certainty, that treatment of the irreversible condition would be medically ineffective" (as found in the End-Stage definition). The End stage definition is a much higher standard, and probably results from the lawmakers too closely tracking another state's statute when intending to broaden our own statute.

Furthermore, even Browning addressed the rights of persons who are both mentally and physically incapacitated, but not those who are mentally incapacitated but physically in good health (as can be frequently the case with Alzheimer's patients).

For instance, following the law as stated in the Browning decision, a patient could leave written directions with a surrogate that essentially state, "If you believe that my quality of life is completely meaningless, then I authorize you to terminate any life-sustaining measures that may then be in place." Upon later incapacity, under Browning, the surrogate could make a decision as to the patient's quality of life, and accordingly seek to terminate life support. However, under the terms of the Florida Statute Section 765, life support can only be terminated when the patient is terminal, in an end-stage condition, or vegetative. Having "zero quality of life" does not rise to any of those standards, and so under the statutes the surrogate would not be authorized to terminate life support. You can expect the dispute over barrier language to continue for many years. The position of many religious organizations is that, without the barrier language, euthanasia or physician assisted suicide will be the sure consequence.

There is a proposed new statute pending in the Florida Legislature (Senate Bill 1890, for the 2001 session) that states, "A patient shall be given information concerning pain management and palliative care when he or she discusses with the attending or treating physician ... the diagnosis, planned course of treatment, alternatives, risks, or prognosis for his or her illness." Such a statute can serve to further quash patients' fears of a painful death, despite Florida's statutory prohibition on assisted suicide.

What can you do? If you or your patients have strong feelings about artificial life-sustaining measures, write them down in a detailed, specific, serious, witnessed statement.

May, 2001/ Jacksonville Medicine

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