Advance health care directives: problems and solutions for the elder law and estate planning practitioner.

• Author: Benzio, Brooke M.
• Position: Florida

1. INTRODUCTION II. PRACTICAL PROBLEM #1: INTERPRETING PRECISE MEDICAL (AND LEGAL) TERMINOLOGY A. When is an Advance Directive Effective? B. Qualification of Surrogates C. Special Problem Area: Do Not Resuscitate Orders D. Practice Solution #1: Cooperative Planning with Health Care Professionals E. Practice Solution #2: Health Care Professionals on Staff F. Macro Solution #1: Education and Training for Health Care Professionals and the Public III. PRACTICAL PROBLEM #2: PORTABILITY ISSUES A. Institution and/or Treatment-Specific Documents B. Out-of-State Documents (i) An Advance Directive by Another Name (ii) Reciprocity and Execution Requirements IV. PRACTICAL PROBLEM #3: CHANGING YOUR MIND A. Reluctant and Overzealous Surrogates B. Failure to Follow the Advance Directive C. Practice Solution #3: Lawyer as Advocate and Mediator V. PRACTICAL PROBLEM #4: ACCESS A. Macro Solution #2: Utilizing Technology to Increase Access for Traditionally Underserved Populations VI. CONCLUSION I. INTRODUCTION

   "Remember that what you possess in the world will be found at the day of your death to belong to some one else," but what you are, will be yours forever." (1)--Henry Van Dyke.

   Since the modem movement for patient autonomy began gathering steam in the 1900s, individual concerns about the purpose, nature, and quality of medical care have become a larger component of the practice of medicine. (2) However, state and federal law has been relatively slow to respond, and establishment of the relevant legal framework is relatively recent. New Jersey courts led the charge with their decision in In re Quinlan, (3) regarding the right of an individual to decline medical treatment based on the constitutional right to privacy. (4) Fourteen years later, the United States Supreme Court showed support for the Quinlan ruling by holding that an individual's constitutionally established right to refuse medical treatment may be broader than the rights granted by state statutes.5 However, in the same decision, the Court also held that states have the right to require that evidence of an incompetent person's wishes as to the withdrawal of life-sustaining treatment be proved by clear and convincing evidence and that the states have a legitimate interest in the preservation and protection of human lives within their borders. (6)

   In an effort to protect patient autonomy, many states began authorizing advance health care directives as a method of providing evidence for unforeseen future health needs. (7) In 1990, the Patient Self Determination Act (8) (hereinafter "PSDA") passed, requiting Medicare-participating health care facilities to: inquire whether patients have advance health care directives; document this information in the patient's chart; and provide information to all patients about their rights with regard to medical treatment decision making. (9) Additionally, under the PSDA, Medicare and Medicaid participating facilities may not condition the provision of care, or otherwise discriminate against an individual, based on whether or not a patient has executed an advance directive, and participating facilities must provide their staff and the community with regular education and training on issues related to advance directives. (10)

   Generally, advance health care directives are legal documents by which competent adults give instructions regarding their medical care in the event that they lose the ability to make their own health care decisions in the future. These documents serve two distinct purposes: (1) designating an individual to make health care decisions on behalf of the designator; and (2) providing guidance about the type and amount of medical care the individual desires. (11) Loss of the ability to make medical decisions may be due to a variety of circumstances, including: mental infirmity, unconsciousness (including temporary unconsciousness), or the inability to communicate verbally or otherwise.

   Legal practitioners in the fields of Estate Planning and Elder Law have found that planning for end-of-life treatment, decision-making, and health care surrogacy has become an area of much concern for their clients, especially with the prevalence of highly-publicized cases like the case of Terri Schiavo. (12) This article will concentrate primarily on critiques of advance directives and practical issues relevant to the Florida practitioner, (13) and will provide some possible solutions. (14) However, a number of the problems addressed in this article are similar to those faced by out-of-state peers.

2. PRACTICAL PROBLEM #1: INTERPRETING PRECISE MEDICAL (AND LEGAL) TERMINOLOGY

   Many practitioners in this area of the law are aware of a consensus among their clients that the language utilized in Estate Planning documents, for example, is "legalese"; therefore, clients rely on the attorney for interpretation of the text. Although the terms are, for the most part, "plain English," the document is written from the perspective of a legal practitioner. One of the major critiques of standard advance directive forms is that they are not readily understood by the average person and they cannot, therefore, ensure informed decision-making. There may be some merit to this critique: the mean reading level of U.S. adults is an eighth-grade level, but for U.S. adults over the age of sixty-five, the mean reading level drops to fifth grade. (15) Most advance directives, even those not drafted by attorneys, are written at a twelfth-grade level. (16) Similarly, much of the operative language in advance health care directives is comprised of medical terminology that has a precise definition that the individual creating the advance directive may not actually understand. This disconnect can lead to some tense and heart-wrenching scenarios for surrogate decision makers.

   Some examples of particularly troublesome medical terms are: "terminal condition," "permanently unconscious," "persistent vegetative state," and "irreversible coma." (17) Many times, this terminology is utilized to indicate that the advance directive will only become operative upon the happening of a specific condition. Individuals who are not health care professionals generally have a sense of what they think many of these words mean, however, sometimes they rely on their internal definitions to their detriment. Take for example the following, regarding the definition of an "irreversible coma":

   Attending Physician: I see that you brought in the power-of-attorney document. It was from 2001. Patient's Son: She was at [a different hospital] at the time. I believe that a chaplain brought the form in. He read it to us. She could barely understand it. Attending Physician: I've looked over the form. You see here, your mother checked this box that says that she wants to have aggressive care unless she is in an irreversible coma. Patient's Son: Yes. I never really read the form. That's what she is now. Attending Physician: Unfortunately, a coma is a medical term with a very precise meaning. Your mother is not in a coma. She may experience some cognitive limitations--severe cognitive limitations-but they are not a coma, and not an irreversible coma. This hospital has a strict policy that if this box is checked, we have to provide aggressive care, even if that's not what the patient would have wanted or even told their family.... (18) In the example above, the problem appears to be twofold: (1) the advance directive document was limited to a very particular medical condition that may never be applicable to the patient (though there may be a number of other applicable conditions not addressed by the form that become relevant), and (2) the patient (and her son) did not understand the specific limitations of the document the patient signed. Frequently, patients and their families are under the impression that there is a "generally applicable" advance directive that can cover the entire spectrum of possible scenarios. Some critics contend that advance directives fail to effectuate a patient's true choices because people cannot foresee (and therefore cannot truly contemplate) their future medical needs well enough to have the proper context. (19) In fact, one study asserts that sixty-four percent of "dying patients' living wills do not actually cover the clinical realities they face." (20) The difficult truth is that medical care, especially that which is received at the end of a person's life, is highly individualized and advance directives must be carefully utilized in consideration of this fact.

   1. WHEN IS AN ADVANCE DIRECTIVE EFFECTIVE?

      As you will recall from the example in the prior section, sometimes problems are created when the advance directive document has a particular operational condition that has not been met. For example, a living will might contain the following language: "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." A patient or surrogate relying on a document with the aforementioned language would need information from the physician regarding the prognosis of the illness in order to know if the living will had become operative. Unfortunately, it can be difficult for physicians to conclusively determine a particular prognosis in certain instances, which can have a chilling effect on utilization of the advance directive. (21)

      Determination of operative conditions can be especially problematic when dealing with illnesses that involve a slow decline, such as Alzheimer's Disease, because it can be nearly impossible for medical personnel to conclusively establish that a particular operative condition has been met, or to give a prognosis, when there is technically no probability of recovery.

      The competency of patients with impaired capacity may fluctuate. Therefore, in an effort to protect the patient's right to self-determination for as long as possible, medical...