An 89-year-old woman with advanced dementia is living in a nursing home and is fully dependent in all aspects of personal care, including feeding. She has a health care proxy and a living will.
Her husband is her health care agent and has established that the primary goal of her care should be to keep her comfortable. He has repeatedly discussed this goal with her attending physician and the nursing-home staff and has reiterated that when his wife had capacity, she wanted “no heroics,” “no feeding tube,” and no life-sustaining treatment that would prolong her dying. He has requested that she not be transferred to the hospital and that she receive all further care at the nursing home. These preferences are consistent with her living will.
One evening, she becomes somnolent and febrile, with rapid breathing. The physician covering for the attending physician does not know the patient, cannot reach her husband, and sends her to the hospital, where she is admitted with aspiration pneumonia.
Her level of alertness improves with hydration. However, the hospital nurses have a difficult time feeding her. She does not seem to want to eat, “pockets” food in her cheeks, is slow to swallow, and sometimes coughs during feeding. This is nothing new—at the nursing home, her feeding pattern had been the same for nearly 6 months. During this time she always had a cough; fevers came and went. She has slowly lost weight; she now weighs 100 lb (45 kg), down 30 lb (14 kg) in 3 years.
With treatment, her respiratory distress and fever resolve. The physician orders a swallowing evaluation by a speech therapist, who determines that she needs a feeding tube. After that, a meeting is scheduled with her husband and physician to discuss the speech therapist’s assessment. The patient’s husband emphatically refuses the feeding tube and is upset that she was transferred to the hospital against his expressed wishes.
Why did this happen?
TRADITIONAL ADVANCE DIRECTIVES ARE OFTEN NOT ENOUGH
Even when patients fill out advance directives in accordance with state law, their preferences for care at the end of life are not consistently followed.
Problems with living wills
Living wills state patients’ wishes about medical care in the event that they develop an irreversible condition that prevents them from making their own medical decisions. The living will becomes effective if they become terminally ill, permanently unconscious, or minimally conscious due to brain damage and will never regain the ability to make decisions. People who want to indicate under what set of circumstances they favor or object to receiving any specific treatments use a living will.
The Patient Self-Determination Act of 1990 states that on admission to a hospital or nursing home, patients have to be informed of their rights, including the right to accept or refuse treatment.1 However, the current system of communicating wishes about end-of-life care using solely traditional advance directives such as the living will has proven insufficient. This is because traditional advance directives, being general statements of patients’ preferences, need to be carried out through specifications in medical orders when the need arises.2
Further, traditional advance directives require patients to recognize the importance of advance care planning, understand medical interventions, evaluate their own personal values and beliefs, and communicate their wishes to their agents, loved ones, physicians, and health care providers. Moreover, these documents apply to future circumstances, require further interpretation by the agent and health care professionals, and do not result in actionable medical orders. Decisions about care depend on interpreting earlier conversations, the physician’s estimates of prognosis, and, possibly, the personal convictions of the physician, agent, and loved ones, even though ethically, all involved need to focus on the patient’s stated wishes or best interest. A living will does not help clarify the patient’s wishes in the absence of antecedent conversation with the family, close friends, and the patient’s personal physician. And living wills cannot be read and interpreted in an emergency.
The situation is further complicated by difficulty in defining “terminal” or “irreversible” conditions and accounting for the different perspective that physicians, agents, and loved ones bring to the situation. For example, imagine a patient with dementia nearing the end of life who eats less, has difficulty managing secretions, aspirates, and develops pneumonia. While end-stage dementia is terminal, pneumonia may be reversible.
Increasingly, therefore, people are being counseled to appoint a health care agent (see below).3