Two heart-wrenching cases in recent news have challenged our understanding and definition of death. The first is 13-year-old Jahi McMath from California.1 "Her heart is beating." "Her skin is warm." "She moves when I touch her." These are observations made by family members of Jahi who was declared brain dead or legally dead after complications following a routine tonsillectomy. Two physicians and a judge independently made the determination based on results of tests conducted to confirm that an individual is brain dead. Her family fought to stop physicians at the hospital from disconnecting a mechanical ventilator even as the courts upheld the hospital's legal right to do so.
The second case is 33-year-old Marlize Munoz who is being kept alive in order to carry a fetus to the point of viability outside the womb.2 At 14 weeks into her pregnancy, Marlize collapsed at home, suffering a possible pulmonary embolism that left her brain dead. Her husband and parents have been fighting to have her removed from life support because they believe she is dead and her wish would not be to be kept "alive" in that condition. Texas law, however, forbids health officials-no matter what preferences the patient may have expressed or written in the event of such a situation-to withdraw or withhold life-supporting treatments from patients who are both terminally ill and pregnant. Debate continues over terminology and interpretation of the law in both cases.
Professional and personal beliefs
Healthcare personnel might experience conflict between professional knowledge and responsibilities and personal beliefs and values. I will never forget caring for a 28-year-old woman who had suffered a sudden and fatal brain aneurysm rupture on her way to work one day. The family's devastation only increased when they were informed a few weeks later that there was no hope of recovery and that they should consider ending all life-sustaining medical interventions. I do not recall whether the term "brain death" ever appeared on her chart, and looking back, she initially lost only higher level brain functioning. She never regained consciousness, but her heartbeat was strong, and she continued to breathe unassisted by a ventilator. She never had any purposeful movement or other indicators of possible recovery. Her body started to slowly deteriorate. Despite 21/2 months of vigilant care, we welcomed her medical death, or the cessation of her heart and lung function. The family's struggle was consuming, but they could accept this as a form of final closure.
Whenever I read an update about Jahi or Marlize, I relive the emotions I felt during those months. Were we bad and uncaring nurses to feel release at this woman's real death? No.
Never lose hope
Throughout those months, I thought about Dr. Kubler-Ross, whom I had met during my undergraduate studies. A soft-spoken person, she made a lasting impression and piqued an interest in thanatology for many students. I realized that everyone who came in contact with my patient who had the brain aneurysm was forced to deal with the process of her death. Kubler-Ross' stages of death and dying are not necessarily separate from each another, nor must they follow in sequence. Stages can overlap, occur together, or not occur at all. It was the nurses' task to help this family navigate through this situation without ever losing hope, even when the outcome was inevitable and irreversible.
Ethics
Jahi and Marlize remind us that confronting ethical issues is a part of life and work for us as nurses. Difficult situations require us to examine our personal beliefs and values while acknowledging professional understanding and actions. Each of us must find that fundamental place of caring and competency when faced with this conflict.
Jamesetta Newland, PhD, RN, FNP-BC, FAANP, DNPNAP
EDITOR-IN-CHIEF [email protected]
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