Be Prepared: Have an Advanced Directive for Health Care

All of you have heard of the case in Florida concerning Terri Schiavo, the young woman who was brain injured. She was not brain dead. She was aware of her surroundings, could feel pain and showed emotions. Her husband had taken most of the over million dollar settlement for himself, he refused her ongoing rehabilitation, and now finally he caused her death by dehydration and starvation. What happened? Why has this case been in the news almost every day? Because her husband claimed Terri once said she would not want to live in that state. She never wrote out her views. She never made out any kind of advance directive. Would this have helped her case? Most definitely.

What is an advance directive? It is a document that a person writes, describing how they desire to be treated if they become unable to communicate their own wishes. Such a document avoids the problem of someone correctly  or incorrectly claiming that a person, who can’t speak for themselves, said they don’t want a certain type medical care, or that they would rather be dehydrated and starved to death than live as they are. An advanced directive also would avoid prolonging life on a ventilator, for example, if the person had written that they didn’t want that kind of care.


When a person, eighteen years and older, enters a hospital, several documents are presented to them to be read and signed if the patient agrees. These are very important documents allowing certain medical procedures, often the admitting clerk includes an advanced directive for the patient to sign if they have not done so previously. In an actual case, when Amy (not her real name) was taken to the hospital for a severe asthma attack, she was given several papers to sign for permission to receive treatment and a Living Will document. By signing the Living Will, Amy had inadvertently stated she did not want advanced life support, which would have precluded CPR and a respirator, even though she had an excellent chance of a full recovery from the asthma attack.

Amy was not dying, but she unknowingly signed papers that could have cost her life. Her signature was barely legible on the documents because in her current condition she was not able to read them, much less comprehend what was written!

This could happen to you unless you can say “I have an Advanced Directive and a Durable Power of Attorney for Health Care,” and then give the name of your designated agent. (Wallet size cards with this information are available from Scholl to carry on your person should you be in an accident and unable to communicate.)

President of Scholl, Molly Grace Israel, RN, BSN, PHN says, “I totally agree. Every patient in the hospital should have, prior to going to the hospital, a durable power of attorney for medical care in place as their advance directive.


Although there are some excellent documents available, there are many which are problematic, such as the so called “Living Will.” Some of the problems with most Living Wills include: they may be either much too specific or too vague, do not adapt to the patient’s condition and are not flexible enough. Living Wills tend to put the emphasis on the side of death. There are several better alternatives. A recommended form is called “Durable Power of Attorney For Health Care”.

While a Living Will binds a patient to the piece of paper he or she has signed, a Durable Power of Attorney allows an agent, designated by the patient, to make health care decisions for him or her. An agent who clearly understands a patient’s wishes and agrees with his or her values can apply those wishes and values to specific situations which are so often unforeseen. For instance: many people do not wish to be on a respirator at the end of their lives, and so may indicate this in a Living Will. However, if they are in an accident long before the end of their life, and need to be on a respirator only temporarily, the Living Will they have signed, legally binds them to not receive this care.

An agent designated by a Durable Power of Attorney could choose to allow the temporary treatment of a respirator, knowing that the patient would wish it in this case. Durable Power of Attorney For Health Care forms, booklets and wallet cards are available from Scholl Institute of Bioethics.


The Terry Schiavo case has prompted much discussion on medical treatment decisions. As the intellectual debates continue, we at Scholl Institute of Bioethics want to ensure that people with disabilities are protected and are not denied food and water.

In order to clarify some of the issues that appear to be confused in various media reports we have compiled the following medical definitions and principals: Please note: “medical” definitions, although official, may be inconsistent and sometimes used to justify unethical practices.

Brain Death – irreversible cessation of cerebral and brain stem function; characterized by absence of: electrical activity in the brain, blood flow to the brain, and brain function as determined by clinical assessment of responses. A brain dead person is dead, although his or her cardiopulmonary functioning may be artificially maintained for some time.1

Coma – An abnormal deep stupor occurring in illness in which the person cannot be aroused by external stimuli. 2 Note: The term “coma” is often used to described persons with brain injury that have a wide range of awareness and ability to respond. Many times the same person may be diagnosed by one physician as being in a coma while another doctor would say he/she is in a “persistent vegetative state.”

Persistent Vegetative State (PVS) – A form of eyes-open permanent unconsciousness in which the person has periods of wakefulness and physiological sleep/wake cycles, but at no time is the person aware of him/herself or the environment. 3 Note: Many individuals diagnosed as being in a ‘persistent vegetative state’ are able to follow simple commands and can answer yes and no questions, which obviously disagrees with the diagnostic criteria. This term is demeaning because a person is never a vegetable. It is more accurate to diagnose these persons as being in varying levels of consciousness.

These terms are used frequently but their precise meaning is often misunderstood especially by the media and thus by the general public. Using the Terry Schiavo case as an example. The Florida Circuit Court considered her to be in a Persistent Vegetative State but her condition did not meet the qualifications for Persistent Vegetative state as defined by the American Academy of Neurology.

Dr. William Hammesfahr, a Clearwater, Fla., neurologist, told WorldNetDaily reporters, “Terri’s eyes fixate on her family and she tries to follow simple commands, such as when doctors ask her to pull against their arm. She breathes and maintains a heart beat and blood pressure on her own. She can see and move her limbs. But she needs a feeding tube to sustain her life.” Her brain injury did not cause her death, but the removal of food and water did. What must America now do?


President Bush has said, “Yet in instances like this one, (the Terri Schiavo case) where there are serious questions and substantial doubts, our society, our laws, and our courts should have a presumption in favor of life. Those who live at the mercy of others deserve our special care and concern. It should be our goal as a nation to build a culture of life, where all Americans are valued, welcomed, and protected – that culture of life must extend to individuals with disabilities.
The following principles are given as a guide for medical treatment decision making:
If death is imminent and the dying process is irreversible, there is no obligation to provide or continue treatment that offers no hope of recovery.
Death should be the result of illness or injury and should not be caused by dehydration or starvation when food and water can be provided by mouth, intravenously or by tube feedings.
If death is imminent and the dying process is irreversible, the dying person should have comfort care and effective pain management.
If it is uncertain whether or not a person is dying, normal medical treatment should be provided to give that person the chance for survival.
If a person is not dying but has a chronic disabling condition (including brain injury), that person should receive food and water by mouth or tube, ordinary medical treatment, comfort care and effective pain management.
1 Online Ethics Journal of the American Medical Association, February 2003, Volume 5, Number 2
2 J.P. Moreland, “The Life and Death Debate – Moral Issues of our Times”
3 American Academy of Neurology, January 1989