HB373

ENGROSSED

A BILL TO BE ENTITLED AN ACT

Relating to terminally ill minors; to amend Sections 22-8A-2, 22-8A-3, and 22-8A-7, as last amended by Act 2016-96, 2016 Regular Session, Code of Alabama 1975; to add Sections 22-8A-15 to 22-8A-18, inclusive, to the Code of Alabama 1975; to create the Alex Hoover Act; to provide for palliative and end of life individual health plans to be created by the parents or guardians of a minor with a terminal illness; to provide civil and criminal immunity to individuals, health care providers, and schools, who undertake to follow the directives of a palliative and end of life individual health plan; to establish a task force to work in conjunction with the Department of Public Health to establish a Physician Order for Pediatric Palliative and End of Life (PPEL) Care form; to require the State Board of Education to promulgate rules establishing a palliative and end of life individual health plan form and its contents to be used in a school setting; and to require the Department of Public Health to promulgate rules for palliative and end of life individual health plans used outside of the school setting.

BE IT ENACTED BY THE LEGISLATURE OF ALABAMA:

Section 1. This act shall be known and may be cited as the Alex Hoover Act.Section 2. Sections 22-8A-2, 22-8A-3, and 22-8A-7, as last amended by Act 2016-96, 2016 Regular Session, Code of Alabama 1975, are amended to read as follows:

§22-8A-2.

"(a) The Legislature finds that competent adult persons and qualified representatives of qualified minors have the right to control the decisions relating to the rendering of their own medical care, including, without limitation, the decision to have medical procedures, life-sustaining treatment, and artificially provided nutrition and hydration provided, withheld, or withdrawn in instances of terminal conditions and permanent unconsciousness.

"(b) In order that the rights of individuals may be respected even after they are no longer able to participate actively in decisions about themselves, the Legislature hereby declares that the laws of this state shall recognize the right of a competent adult person and a qualified representative of a qualified minor to make a written declaration instructing his or her a physician to provide, withhold, or withdraw life-sustaining treatment and artificially provided nutrition and hydration or designate by lawful written form a health care proxy to make decisions on behalf of the adult person, or qualified representative of a qualified minor, concerning the providing, withholding, or withdrawing of life-sustaining treatment and artificially provided nutrition and hydration in instances of terminal conditions and permanent unconsciousness. The Legislature further desires to provide for the appointment of surrogate decision-makers in instances where the individual has not made such a designation and to allow a health care provider to follow certain portable physician orders for adults and qualified minors as provided for in this chapter.

§22-8A-3.

"As used in this chapter, the following terms shall have the following meanings, respectively, unless the context clearly indicates otherwise:

"(1) ADULT. Any person 19 years of age or over.

"(2) ARTIFICIALLY PROVIDED NUTRITION AND HYDRATION. A medical treatment consisting of the administration of food and water through a tube or intravenous line, where the recipient is not required to chew or swallow voluntarily. Artificially provided nutrition and hydration does not include assisted feeding, such as spoon or bottle feeding.

"(3) ADVANCE DIRECTIVE FOR HEALTH CARE. A writing executed in accordance with Section 22-8A-4 which may include a living will, the appointment of a health care proxy, or both such living will and appointment of a health care proxy.

"(4) ATTENDING PHYSICIAN. The physician selected by, or assigned to, the patient who has primary responsibility for the treatment and care of the patient.

"(5) CARDIOPULMONARY CESSATION. A lack of pulse or respiration.

"(6) COMPETENT ADULT. An adult who is alert, capable of understanding a lay description of medical procedures and able to appreciate the consequences of providing, withholding, or withdrawing medical procedures.

"(7) DO NOT ATTEMPT RESUSCITATION (DNAR) ORDER. A physician's order that resuscitative measures not be provided to a person under a physician's care in the event the person is found with cardiopulmonary cessation. A do not attempt resuscitation order would include, without limitation, physician orders written as "do not resuscitate," "do not allow resuscitation," "do not allow resuscitative measures," "DNAR," "DNR," "allow natural death," or "AND." A do not attempt resuscitation order must be entered with the consent of the person, if the person is competent; or in accordance with instructions in an advance directive if the person is not competent or is no longer able to understand, appreciate, and direct his or her medical treatment and has no hope of regaining that ability; or with the consent of a health care proxy or surrogate functioning under the provisions in this chapter; or instructions by an attorney in fact under a durable power of attorney that duly grants powers to the attorney in fact to make those decisions described in Section 22-8A-4(b)(1).

"(8) HEALTH CARE PROVIDER. A person who is licensed, certified, registered, or otherwise authorized by the law of this state to administer or provide health care in the ordinary course of business or in the practice of a profession.

"(9) HEALTH CARE PROXY. Any person designated to act on behalf of an individual pursuant to Section 22-8A-4.

"(10) LIFE-SUSTAINING TREATMENT. Any medical treatment, procedure, or intervention that, in the judgment of the attending physician, when applied to the patient, would serve only to prolong the dying process where the patient has a terminal illness or injury, or would serve only to maintain the patient in a condition of permanent unconsciousness. These procedures shall include, but are not limited to, assisted ventilation, cardiopulmonary resuscitation, renal dialysis, surgical procedures, blood transfusions, and the administration of drugs and antibiotics. Life-sustaining treatment shall not include the administration of medication or the performance of any medical treatment where, in the opinion of the attending physician, the medication or treatment is necessary to provide comfort or to alleviate pain.

"(11) LIVING WILL. A witnessed document in writing, voluntarily executed by the declarant, that gives directions and may appoint a health care proxy, in accordance with the requirements of Section 22-8A-4.

"(12) PALLIATIVE AND END OF LIFE INDIVIDUAL HEALTH PLAN. A document that outlines health care to be provided to a qualified minor, in a school setting, developed by a school nurse in conjunction with the qualified representative, pursuant to Section 22-8A-16. A palliative and end of life individual health plan shall include a copy of the physician order for PPEL care and may contain any other directive or order executed pursuant to this chapter on behalf of the qualified minor.

"(12) (13) PERMANENT UNCONSCIOUSNESS. A condition that, to a reasonable degree of medical certainty:

"a. Will last permanently, without improvement; and

"b. In which cognitive thought, sensation, purposeful action, social interaction, and awareness of self and environment are absent; and

"c. Which condition has existed for a period of time sufficient, in accordance with applicable professional standards, to make such a diagnosis; and

"d. Which condition is confirmed by a physician who is qualified and experienced in making such a diagnosis.

"(13) (14) PERSON. An individual, corporation, business trust, estate, trust, partnership, association, joint venture, government, governmental subdivision or agency, or any other legal or commercial entity.

"(14) (15) PHYSICIAN. A person licensed to practice medicine and osteopathy in the State of Alabama.

"(16) PHYSICIAN ORDER FOR PEDIATRIC PALLIATIVE AND END OF LIFE (PPEL) CARE. A form signed by the treating physician of a qualified minor using the form developed by the Department of Public Health, in conjunction with the Governor's task force pursuant to Section 4 of the act amending this section, signed by the physician directing the care of the qualified minor, which when completed becomes the order directing all professional caregivers with respect to the extent of use of emergency medical equipment, medication, and any other technological interventions available to provide palliative and supportive care to the qualified minor.

"(15) (17) PORTABLE PHYSICIAN DNAR ORDER. A DNAR order entered in the medical record by a physician using the required form designated by the State Board of Health and substantiated by completion of all sections of the form.

"(18) QUALIFIED MINOR. An individual ranging in age from birth until the age of 19 who has been diagnosed as terminally ill or injured. For purposes of this chapter, a qualified minor shall be considered an adult when acting through a qualified representative under this chapter only as permitted and set forth in this chapter.

"(19) QUALIFIED REPRESENTATIVE. Any of the following with regard to a qualified minor:

"a. A parent of a qualified minor whose medical decision making rights have not been restricted.

"b. A legal guardian of a qualified minor, which may include situations where the Department of Human Resources has custody of a minor.

"c. An adult acting in loco parentis on behalf of a qualified minor.

"(16) (20) RESUSCITATIVE MEASURES. Those measures used to restore or support cardiac or respiratory function in the event of cardiopulmonary cessation.

"(17) (21) SURROGATE. Any person appointed to act on behalf of an individual pursuant to Section 22-8A-11.

"(18) (22) TERMINALLY ILL OR INJURED PATIENT. A patient whose death is imminent or whose condition, to a reasonable degree of medical certainty, is hopeless unless he or she is artificially supported through the use of life-sustaining procedures and which condition is confirmed by a physician who is qualified and experienced in making such a diagnosis.

§22-8A-7.

"(a) A competent adult may make decisions regarding life-sustaining treatment and artificially provided nutrition and hydration so long as that individual is able to do so. The desires of an individual shall at all times supersede the effect of an advance directive for health care.

"(b) If the individual is not competent at the time of the decision to provide, withhold, or withdraw life-sustaining treatment or artificially provided nutrition and hydration, a living will executed in accordance with Section 22-8A-4(a) or a proxy designation executed in accordance with Section 22-8A-4(b) is presumed to be valid. For the purpose of this chapter, a health care provider may presume in the absence of actual notice to the contrary that an individual who executed an advance directive for health care was competent when it was executed. The fact of an individual's having executed an advance directive for health care shall not be considered as an indication of a declarant's mental incompetency. Advanced age of itself shall not be a bar to a determination of competency.

"(c) No physician, licensed health care professional, medical care facility, other health care provider, or any employee thereof who in good faith and pursuant to reasonable medical standards issues or follows a portable physician DNAR order or a Physician Order for PPEL Care entered in the medical record pursuant to this chapter or causes or participates in the providing, withholding, or withdrawing of life-sustaining treatment or artificially provided nutrition and hydration from a patient pursuant to a living will or designated proxy made in accordance with this chapter or pursuant to the directions of a duly designated surrogate appointed in accordance with this chapter, in the absence of actual knowledge of the revocation thereof, shall, as a result thereof, be subject to criminal or civil liability, or be found to have committed an act of unprofessional conduct."

Section 3. Sections 22-8A-15, 22-8A-16, 22-8A-17, and 22-8A-18 are added to the Code of Alabama 1975, to read as follows:

§22-8A-15.

(a) For purposes of this chapter, a qualified representative may act on behalf of a qualified minor in the following circumstances:

(1) Executing an advance directive for health care under Section 22-8A-4.

(2) Consenting to a DNAR order under Section 22-8A-4.1.

(3) Revoking an advanced directive for health care pursuant to Section 22-8A-5.

(4) Executing a palliative and end of life individual health plan pursuant to Section 22-8A-16.

(5) Acting as a designated proxy under Section 22-8A-6.

(6) Acting as a surrogate under Section 22-8A-11.

(b) A qualified representative shall have legal rights, duties, responsibilities, and obligations to act in a fiduciary capacity on behalf of a qualified minor.

§22-8A-16.

(a) As used in this section and Section 22-8A-17, school means any K-12 public school, charter school, any educational or correctional institution under the control of the Department of Youth Services, the Alabama Institute for Deaf and Blind, the Alabama School of Fine Arts, and the Alabama School of Math and Science.

(b) As a prerequisite to executing any directives, orders, or guidance on behalf of a qualified minor regarding care and services in a school, a qualified representative shall complete a palliative and end of life individual health plan and file a copy of the plan with any school the qualified minor attends.

(c) The form and contents of the palliative and end of life individual health plan shall be developed pursuant to rules promulgated by the State Board of Education, in consultation with the Department of Public Health and the Alabama Board of Nursing, with special consideration given to meet child and family needs, as well as the needs of students and staff.

(d) The palliative and end of life individual health plan shall include a copy of the Physician Order for PPEL Care and any of the following:

(1) A copy of any other directive or order executed pursuant to this chapter on behalf of the qualified minor.

(2) A detailed listing of expectations of non-medical care as it applies to non-medical professionals and other individuals specifically addressing circumstances in anticipation of the death of the qualified minor.

(3) A detailed plan of action for the school in the event of a qualified minor's death while participating in a school activity, including guidance and plans for addressing the needs of other children who may witness the death of the minor.

(4) A detailed plan of action for the school in the event of a qualified minor's death while on school property or at a school event, with regard to what should be done with the body of the qualified minor.

(5) The specific types of school-sanctioned activities authorized by the qualified representative in which the qualified minor may participate.

(6) A narrative description of the desire for participating in activities or organizations within the community, including school-sanctioned activities at school during school hours and after school hours, in which the qualified minor may participate. The written desire for participating in school-sanctioned activities does not constitute a guarantee of participation. The qualified minor shall meet the same participation requirements for school-sanctioned activities as set forth for all students at the school.

(7) An acknowledgement by the qualified representative that physicians, nurses, health care providers, health care facilities, schools, school boards, school board members, and employees of a local board of education, and other individuals acting in consultation with the school are not criminally or civilly liable for following any plans, guidance, or directives of the palliative and end of life individual health plan.

(8) An acknowledgement by the qualified representative that he or she has been provided information about the risks and benefits of the activities as described in the palliative and end of life individual health plan and how the activities may affect the death of the qualified minor.

(9) Any other requirement that may be established by rule in accordance with this chapter.

(e) A palliative and end of life individual health plan is executed when it is completed and signed and dated by all qualified representatives of the qualified minor.

(f) After a palliative and end of life individual health plan is executed, the school, upon written consent by the qualified representatives, shall notify, to the extent possible, local emergency medical services of the presence of a qualified minor in the school with a palliative and end of life individual health plan.

§22-8A-17.

Any individual, physician, nurse, health care provider, health care facility, school, city or county board of education, the Board of Education for the Department of Youth Services, board of education member, or employee of a local board of education or school, attempting to follow a palliative and end of life individual health plan or directions, guidance, or instructions provided by a qualified representative pursuant to a palliative and end of life individual health plan shall not be subject to criminal or civil liability. When interpreting this chapter, all defenses and immunities herein shall inure to the benefit of those individuals, physicians, nurses, health care providers, health care facilities, schools, local boards of education, board of education members, and employees of a local board of education or school. Furthermore, no individual shall be subject to criminal or civil liability for the provision of medical or non-medical care or treatment or withholding of treatment of a qualified minor as provided for under this chapter. This protection extends to these individuals regardless of whether or not the condition that causes the death is, in fact, the cause of the qualified minor's death.

§22-8A-18.

(a) The State Board of Education, in consultation with the Department of Public Health and the Alabama Board of Nursing, shall promulgate any rules necessary to carry out Section 22-8A-16 within a school setting for the care of a qualified minor.

(b) The Department of Public Health, in consultation with the State Department of Education and the Alabama Board of Nursing, shall promulgate any rules necessary to carry out Section 22-8A-16 outside of a school for the care of a qualified minor.

Section 4. (a) The Department of Public Health, in conjunction with the task force created pursuant to subsection (b), shall promulgate rules establishing the Physician Order for Pediatric Palliative and End of Life (PPEL) Care form.

(b) The Governor shall appoint a task force, to serve for no more than two years under the supervision of the Alabama Department of Public Health, to establish the Physician Order for PPEL Care form. The task force shall include all of the following representatives:

(1) A representative of urban emergency medical services, appointed by the Governor.

(2) A representative of rural emergency medical services, appointed by the Governor.

(3) A pediatrician caring for medically complex children in an urban area, appointed by the Governor.

(4) A pediatrician caring for medically complex children in a rural area, appointed by the Governor.

(5) Two pediatric specialists from any of the following disciplines, appointed by the Governor: Oncology, cardiology, neurology, or pulmonology.

(6) A pediatric ethicist, appointed by the Governor.

(7) A nurse, appointed by the Alabama Board of Nursing.

(8) The Director for School Nurses of the State Department of Education, or his or her designee.

(9) The Director Child Care Facilities of the Department of Human Resources, or his or her designee.

(10) The State Health Officer, or his or her designee.

(11) A pediatric advanced practice practitioner, appointed by the Governor.

(12) Two social workers, appointed by the Governor.

(13) A representative of the Alabama Hospital Association appointed by the association.

(14) A representative of Children's Hospital of Alabama appointed by the hospital.

(15) A representative of Children's and Women's Hospital at the University of South Alabama appointed by the hospital.

(16) A representative of the Alabama State Advisory Council on Palliative Care and Quality of Life appointed by the organization.

(17) A representative of the Medical Association of Alabama, appointed by the association.

(18) A representative of the Alabama Association of School Nurses, appointed by the association.

(19) Two hospital chaplains appointed by the Governor.

(20) A pediatric palliative care physician, appointed by the Governor.

(21) A physician who practices hospital emergency medicine, appointed by the Governor.

(22) An emergency medicine physician who practices at one of the Alabama licensed pediatric specialty hospitals appointed by the Governor.

(23) Two parents with minor children, appointed by the President Pro Tempore of the Senate.

(24) Two parents with minor children, appointed by the Speaker of the House of Representatives.

(c) The task force shall provide an annual report to the Legislature no later than the 15th legislative day of the regular session.

Section 5. The appointing authorities shall coordinate their appointments to assure the task force membership is inclusive and reflects the racial, gender, geographic, urban, rural, and economic diversity of the state.

Section 6. This act shall become effective three months following its passage and approval by the Governor, or its otherwise becoming law.

Minors

Health Care

Schools

Health Care Providers

Physicians

Code Added

Code Amended