I was contacted recently about taking a role in an end of life care case in Indiana, by a colleague in the Midwest who thought my expertise in patient rights might be of assistance.
An 83 year old woman, whom I will call Gail, was living with Alzheimer’s disease. She resided in her own home, with a son and daughter. Gail had told her children that she never wanted to live in an institutional setting; continuing to live in her own home was important to her. Another daughter lived nearby. Her husband of 50 years, who predeceased her, was a United Methodist Minister; Gail became a Diaconal Minister and served at a United Methodist Church. Gail remained good natured, even as her disease advanced she retained a wry sense of humor; she enjoyed listening to NPR and watching birds at her feeders. She largely used a wheelchair for mobility, but would exercise by “walking” to the bathroom when her son supported her beneath her arms, praising her effort. Gail was well cared for, and a valued member of the family.
Her children had heard their mother express her view over the years that she would want medical treatment unless she was a “total vegetable”. These statements guided the children in making medical care decisions for their mother; the siblings conferred about how best to care for Gail. They took her to the hospital when health concerns could not be treated at home.
In the events leading to Gail’s death, her children had taken her to the hospital concerned about possible pneumonia. The family informed the hospital and the attending physician that Gail was to be a ‘full code’ patient, meaning medical treatment to extend her life should be provided.
Notwithstanding this clear direction, the hospital on its own volition, in direct conflict with the expressed wishes of its patient, designated Gail a “No Code/Do Not Resuscitate” (“DNR”) patient, meaning that hospital staff would not attempt to resuscitate her or provide life prolonging treatment. The hospital did not receive approval from any family member to so designate Gail.
Soon after entering the DNR, Gail suffered a heart attack, witnessed by her daughter. The daughter immediately called for help, but despite her pleas, no nurses or doctors began resuscitative efforts. The daughter began mouth to mouth and CPR, while shouting repeatedly: “She’s not DNR”. Finally the providers took Gail to the ICU, and she survived this crisis. A few days later Gail suffered a collapsed lung. Even though, the hospital was aware of the lung it did nothing to treat it. Overwhelming infection and septic shock ensued and Gail ultimately died due to the lack of treatment.
“This is an important issue that demands attention,” said Melissa Keyes, Legal & Advocacy Services Director, Indiana Protection & Advocacy Services.
Whether to accept life prolonging medical treatment at an advanced age, burdened with Alzheimer’s, is a profoundly personal decision. Views on this will vary, based on the values, beliefs and preferences of the individual. Patients are encouraged to think carefully about what medical care would be wanted if they were to enter such a situation and to inform family members and physicians of their preferences. Law, policy and medical ethics are in agreement: Patients’ wishes should be respected. To ignore the wishes of a patient, even though the patient has Alzheimer’s, is a grave affront to personal autonomy and civil liberties.
DRLC is dedicated to the principle that each individual be empowered with information, control and autonomy over his or her body, life and medical decision making. Through its End of Life Liberty Project, launched in 2014, DRLC advocates on behalf of seriously ill and dying patients to protect and expand their rights at end of life.