By Barbara Coombs Lee, PA, FNP, JD, President Compassion & Choices

Marlise Munoz is dead. She died Nov. 26, probably of a pulmonary embolus, when she was 14 weeks pregnant. But John Peter Smith Hospital in Fort Worth, Texas refuses to turn off the machines and let the family claim the body of their beloved.

This family is grieving a tragic loss. Their grief is all the more devastating because the firm wishes of their loved one – the woman paramedic, the daughter and wife who knew she never wanted to be maintained in an unconscious state – mean nothing. Texas law says life support may not be withdrawn from a pregnant patient and the hospital chooses to characterize Munoz’s dead body as a patient on life support.

Medical ethicists across the nation call it bad law and erroneous interpretation, but that doesn’t change this outrageous situation.

The woman’s husband, Erick Munoz, is also a paramedic, so he understands his wife is dead because her brain, deprived of oxygen for a prolonged period, generates no electrical activity. He is suing the hospital and hopes the court will order officials to detach the machines and let him bury his wife.

Nearly a dozen other states have similar laws. Texas is also one of 48 states in which hospitals are not required to consult with the family of a brain-dead patient about how and when to terminate treatment.

Unlike many families, Erick and Marlise Munoz had articulated their desired end-of-life options, because as paramedics they had treated patients in these situations. Marlise’s parents are united with Erick in their request that physicians remove the ventilator. Marlise’s values and beliefs, her husband’s decision as her surrogate decision-maker, her parents wish for respectful treatment of their daughter’s body – are all cast aside because she was pregnant when she died.

Pregnancy should not nullify a woman’s autonomy, nor her right to self-determination when she is dying, comatose or in a vegetative state and can’t speak for herself. Nor should any medical condition nullify a patient’s medical treatment choices, or disempower their medical surrogate.

This tragic story holds implications far beyond one family’s nightmare. If institutional decisions can override family decisions and appropriate a body to serve its own purposes or that of the state, then no one is safe from government overreach. In this case the state and the hospital conspire to maintain a body while a fetus develops, theoretically because they have a compelling interest in the fetal life.

If allowed to continue, just think where allowing authoritarian appropriation of a person’s body could take us. The principle of bodily appropriation could be a monumental assault on our freedoms. Statutes similar to the Texas law could have government violate any person’s verbal or written advance directives to serve its own purposes. Advances in modern medicine could lead to cases in which hospitals extend unwanted “life-sustaining treatment” to comatose, vegetative, or dead patients for a range of reasons.

In this case the state’s interest is in a fetus, but perhaps the state could decide it has a compelling interest in the lives of children who need vital organs – hearts, kidneys and lungs. Could the state compel organ donation? If there were no immediate need, could the state even require a family to allow their loved one’s body to be maintained as an organ host until a transplant recipient emerged? If I had a rare blood type, could the state keep my body functioning indefinitely, producing a supply of blood for those who need it? Could my body be turned into an antibody factory if the state deemed it was needed to fight an epidemic? Once we establish the principle that government can put its interest in preserving life above your own bodily integrity and autonomous liberty, the possibilities are endless.

Most Americans believe the strong arm of the government should not be flexing its muscle at the bedside of dying – or dead – patients. Government should not usurp the intimate, personal and wrenching decisions of patients and their families. When I worked in emergency rooms and intensive care units as a nurse and physician assistant, I witnessed families suffer when a loved one dies. Pain is especially severe when the patient is as young as Marlise (33 years old) and the death unexpected. Outside parties only compound this suffering by inserting their own values and beliefs, dictating unwanted treatment and grabbing the power to make decisions from a loving family.

In 1949, George Orwell presciently warned in his famous book 1984 about what would happen to individual rights if our society evolved into a totalitarian state: “ … accept it as a law of nature that the individual is always defeated … ” Orwell hoped that by writing 1984 he would help prevent such a society from becoming reality.

I hope the judge responsible for hearing the Munoz family’s lawsuit today will end this abuse of power and order John Peter Smith Hospital to honor the family’s wishes, remove the ventilator from Marlise Munoz and let the family put her remains to rest. If Texas courts allow this continuing violation of individual liberty and a family’s privacy rights, we may be on the way to Orwell’s nightmare after all.

Barbara Coombs Lee is President of Compassion & Choices, the nation’s oldest and largest end-of-life choice advocacy organization.