ALP: "Is Kentucky's statutory form Living Will Directive adequate to address end-of-life decisions made for me by my Health Care Surrogate?"
The recent news reports describing the life and death of Terri Schiavo have prompted many Kentuckians to consider how they want their end-of-life decisions to be made if they are incapacitated and are suffering from a terminal condition. Kentucky law permits any competent adult to appoint a “health care surrogate” through a “living will directive” to make end-of-life decisions in conjunction with the patient’s attending physician. However, Kentucky’s model form living will directive (found at KRS §311.625 and available for free on the internet) fails to address whether an individual desires to be (or not to be) resuscitated in the event of a medical emergency and does not afford an individual the opportunity to customize the living will directive. In addition, the model form fails to authorize an individual’s attending physician or health care provider to release certain protected health care information to that individual’s health care surrogate. Nevertheless, an individual who wants to address these deficiencies or add additional provisions may do so, but should consult an experienced estate planning practitioner to ensure that any customized living will directive clearly communicates the individual’s desires in order to avoid the kind of strife that divided the Schiavo family.
What is a “Living Will”?
Kentucky’s statutory form living will directive permits any competent adult individual to make the following decisions concerning his or her end-of-life care:
- To direct (or not direct) that treatment be withheld or withdrawn and that he or she be permitted to die naturally with only the administration of medication or the performance of any medical treatment deemed necessary to alleviate pain.
- To authorize (or not authorize) the withholding or withdrawal of artificially provided, food, water, or other artificially provided nourishment or fluids.
- To authorize a health care surrogate to withhold or withdraw artificially provided nourishment or fluids or other treatment if the surrogate determines that withholding or withdrawing is in that individual’s best interest, but does not mandate that withholding or withdrawing.
- To authorize (or not authorize) the giving of all or any part of that individual’s body upon death for education or organ donation.
The statutory form further provides that if an individual executes a living will and is thereafter unable to give directions concerning end-of-life care, the directive shall be honored by that individual’s family, attending physician and health care surrogate as the final expression of the individual’s legal right to refuse medical or surgical treatment. However, the law states that a health care surrogate cannot act if the attending physician has determined in good faith that an individual has the ability to make his or her own decisions. Moreover, a living will directive cannot be used to authorize or approve mercy killing (euthanasia) or to permit any affirmative or deliberate act to end life other than to permit the natural process of dying. (See KRS §311.639). Finally, a living will cannot be used to end the life of a pregnant woman unless there is no hope for the continuing development and live birth of the unborn child.
“Caveats” Concerning Kentucky’s Statutory Form Living Will
Kentucky’s statutory form living will directive was drafted prior to the implementation of new privacy rules contained in the Health Insurance Portability and Accountability Act of 1996 (often referred to as “HIPAA”). The purpose of the HIPAA rules is to safeguard a patient’s “protected health information” (“PHI”) by physicians and health care providers (e.g. hospitals, nursing homes, etc.), and to preclude dissemination of PHI except to “authorized” third parties. HIPAA generally requires that any third party seeking a patient’s PHI must show (1) that he or she is an agent of the patient, (2) that his or her agency relationship extends to making decisions relating to health care matters, and (3) that the requested information is relevant to making those decisions. If able to make such a showing, the third party will be treated under HIPAA as the patient’s “personal representative” and will be entitled to authorize the release of PHI just as the patient could do but for the patient’s incapacity. (See 45 CFR 164.502(g)). Because Kentucky’s statutory form fails to address HIPAA’s new privacy rules, a patient’s health care surrogate using the statutory form may be unable to obtain PHI, even though the PHI is necessary for the health care surrogate to make well informed end-of-life decisions on behalf of the patient.
One possible solution to the problem is to affirmatively appoint the health care surrogate, in the living will directive, to act as personal representative under HIPAA. Another possible solution is to appoint an attorney-in-fact under a durable power of attorney to serve as personal representative under HIPAA. However, this second solution will work only if the attorney-in-fact also serves as health care surrogate under the living will directive. Yet another solution suggested by some estate planning practitioners is to prepare a separate HIPAA authorization for the exclusive purpose of appointing a personal representative who will be entitled to receive PHI.
The statutory form living will directive is not a substitute for a “do not resuscitate” or “no code” directive. As mentioned above, the statutory form living will directive does not offer an individual the opportunity to tailor the document to meet any special wishes concerning end-of-life care, such as the refusal of specific treatments (e.g. cardiopulmonary resuscitation (“CPR”) or the use of a respirator). When faced with a medical emergency, responding medical personnel are required by law to use CPR unless they are given separate written orders not to do so. (See KRS §311.623(3)). Consequently, anyone not wanting to be resuscitated should consider executing a separate form to that effect that may be obtained from an estate planning practitioner or free from most health care providers for their patients.
Finally, the statutory form living will directive does not address the continuing care needs of an incapacitated person who is unable to make decisions concerning his or her care but does not have a terminal condition. If an individual has failed to appoint an attorney-in-fact to make health care and financial decisions on his or her behalf by means of a durable power of attorney, a guardian will have to be appointed by the District Court to do so.
Anyone considering adopting an end-of-life plan should consult an experienced estate planning practitioner who can offer guidance and assistance in the preparation of a living will directive and other companion documents such as a durable power of attorney, do not resuscitate order, and HIPAA authorization specifically tailored to communicate that individual’s desires while he or she is able to do so.