The Rules for Living and Dying

By Steven Reichert, MD, Director, Palliative Care

The hospital admits a 50-year-old woman with a history of obesity, drug abuse and bipolar illness after she was found in the street with evidence of head trauma. A CT scan reveals extensive intracranial hemorrhage and the patient is taken for an emergency craniotomy and evacuation of a hematoma. Two weeks post-op she remains comatose and a tracheostomy and feeding tube are inserted. After a month she is transferred to a nursing home for longterm care. She is readmitted to the hospital two months later for sepsis due to a decubitus ulcer. She is able to open her eyes, but her gaze does not focus.

Her family states that in the nursing home, she does not follow commands or appear to recognize or respond to loved ones. They have been told that full recovery is unlikely, but that over time (months) she may regain the ability to respond and communicate with family. Her family states that she had been a very private person whose mental illness contributed to a solitary lifestyle. She refused to see doctors in the past and was at one point homeless as her apartment was deemed unsafe due to hoarding. The family expressed concerns that the patient would not want to live as she is living, nor would she want to live if she could not be private and independent. They have privately questioned the role of continued artificial life support.

After multiple discussions with family and staff at the hospital, the family chooses to remove the ventilator and discontinue artificial feeding. Without life support, the patient breathes independently; however, she remains in a vegetative state. The family chooses to continue to withhold artificial feeding and the patient is transferred back to her nursing home for comfort care only. She dies approximately two weeks later.


The way that we live and die has changed drastically since the advent of artificial life support in the 1970s. Whether ventilators and feeding tubes should be utilized for a temporary or prolonged time is an intensely personal choice. These decisions are based upon a person’s values, judgments, religious beliefs, hopes and fears, which influence the way they want to live and die. Unfortunately, many patients have never discussed their end-of-life wishes and do not have a living will or health care proxy (HCP). This leaves surrogate decision makers, often family members, who struggle with the choices of a prolonged artificial life or a much shorter natural life and death.

The legality of stopping life support has been the subject of numerous court cases. The first right-to-die case involved Karen Ann Quinlan, who suffered a drug overdose in 1975 that left her in a vegetative state. Her family’s request to remove life support was granted in 1976 by the Supreme Court of New Jersey. She lived with a feeding tube until 1985, when she died of pneumonia. A car accident left Nancy Cruzan in a vegetative state in 1983. Her family requested removal of life support. However, the laws of the State of Missouri (upheld by the United States Supreme court in 1990) stated that clear and convincing evidence was required prior to removal of life support. Family subsequently presented testimony which the Missouri courts deemed clear and convincing and life support was stopped in December 1990. A cardiac arrest left Terry Schiavo in a vegetative state in 1990. Her husband first petitioned for removal of her feeding tube in 1998, a decision with which her parents disagreed. After a series of court cases and appeals, her feeding tube was removed at the husband’s request in 2005 and she died two weeks later. New York passed the Family Health Care Decisions Act in 2010 which allows for decisions regarding removal of life support by a HCP, or if no proxy exists by a surrogate without clear and convincing evidence of a patient’s wishes. Surrogates use their understanding of the values and judgments of the patient as well as their personal and religious beliefs.

The ethics of removal of ventilators and feeding tubes hinges upon respect for patient’s autonomy as well as the principle of non-maleficence (first do no harm). Patients have the right to control what happens to their bodies and as long as they demonstrate reasonable capacity, the right to refuse care. Even treatments which may significantly improve quality of life or prolong life may be refused by an individual patient. Without capacity for decision making, the patient’s HCP or surrogate is responsible for maintaining the patient’s right to self-determine. The substituted judgment of the surrogate should be consistent with the decision a patient would make had they not lost capacity.

Each treatment comes with sacrifice and consequences and while at all times health care workers strive to “first do no harm,” many treatments do inflict harm whether it be physical or emotional. Patients and families consent to these treatments with the hopes that the “ends will justify the means.” Unfortunately, a positive outcome is not guaranteed and at times families hopes change. In the case of the patient described above, the family’s initial hopes for recovery turned into the hope that she could rest and be at peace. Understanding that she was an intensely private woman who craved a private and independent life, the family opted for a life of comfort care with the hope of a painless and dignified end of life.