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Advance Directives
STATEMENT OF ILLINOIS LAW
ON ADVANCE DIRECTIVES AND DNR ORDERS
(The following information is specific to Illinois. Please check with the state in which the patient resides for further information on Advance Directives)
One has the right to make decisions about their own healthcare. Advance Directives are written statements that one prepares regarding what medical decisions should be made in the future should they no longer be able to make decisions by themselves.
A "do not resuscitate order" (DNR order) is a medical treatment order that says cardiopulmonary resuscitation (CPR) will not be used if a person’s heart or breathing stops.
Federal law requires that people be told of their right to make an Advance Directive when they are admitted to a healthcare facility. Illinois law allows for the following types of Advance Directives: (1) Living Will; (2) Healthcare Power of Attorney; (3) Do-not- resuscitate Order; (4) Mental Health Treatment Preference Declaration.
In addition, one may work with their physician to prepare a DNR order as well as discuss different types of Advance Directives and DNR orders. After reviewing information regarding Advance Directives and DNR orders, one may decide to have two or all three orders in place. The two most important are the Living Will and Healthcare Power of Attorney for these will offer the doctors and caretakers the most information about their patient’s wishes after the patient is unable to state these wishes themselves.
If one or more Advance Directives and/or a DNR orders are chosen, then the patient should tell their doctor and other healthcare providers and provide them with a copy. One may also want to provide a copy to family members, and to those appointed to make these decisions.
The State Department of Health provides copies of sample Advance Directives forms and DNR order forms.
Living Will
One’s Living Will should be reviewed yearly because it is not simply a legal document; it is reflective of one’s own opinion, and our opinions about the way we understand our lives change from time to time.
A Living Will tells the doctor whether their patient wants death-delaying procedures used if they have a terminal condition and are unable to state their wishes. A Living Will, unlike a Healthcare Power of Attorney, only applies if the patient has a terminal condition. A terminal condition means an incurable and irreversible condition such that death is imminent and the application of any death delaying procedures serves only to prolong the dying process.
Even if the patient signs a Living Will, food and water cannot be withdrawn if this act would be the only cause of death. Also, if they are pregnant and doctors think the patient could have a live birth, the Living Will cannot go into effect.
A standard Living Will form can be used or one can choose to write their own. They may write specific directions about the death-delaying procedures they do or do not want.
Two people must witness the signing of the Living Will; the doctor cannot be a witness. It is the patient’s responsibility, if they are able to do so, to tell the doctor if they have a Living Will. They can cancel the Living Will at any time, either by telling someone or by canceling it in writing.
If one has both a Healthcare Power of Attorney and a Living Will, the "agent" named in their Power of Attorney will make the healthcare decisions unless he or she is unavailable.
Healthcare Power of Attorney
One’s Healthcare Power of Attorney should be reviewed yearly because it is not simply a legal document; it is reflective of one’s own opinion, and our opinions about the way we understand our lives change from time to time.
The Healthcare Power of Attorney allows a person to choose someone to make healthcare decisions for them in the future if they are no longer able to make these decisions for themselves. This person is called the "principal" on the Power of Attorney form and the person chosen to make decisions is called the "agent". The "principal" is the patient who should always be treated as an individual and be treated with respect and care. The "agent" would make healthcare decisions for the "principal" if they were no longer able to make these decisions for themselves. So long as the "principal" is able to make these decisions, this person has the power to do so. The "principal" may give their "agent" specific directions about the healthcare they do or do not want.
The "agent" chosen cannot be the doctor or another healthcare provider. One should have someone who is not his or her "agent" witness the signing of the Power of Attorney.
The power of the "agent" to make healthcare decisions on the "principal’s" behalf is broad. The "agent" would be required to follow any specific instructions given regarding care. For example, one can say whether they want all life-sustaining treatments provided in all events and whether or not they want life-sustaining treatment ended. They can provide instructions regarding refusal of certain types of treatments on religious or other personal grounds and instructions regarding anatomical gifts and disposal of remains. Unless time limits are included, the Healthcare Power of Attorney will continue in effect from the time it is signed until death. One can cancel their Power of Attorney at any time, either by telling someone or by canceling it in writing. One can also name a backup "agent" to act if the first one cannot or will not take action. If it is desired to change the Power of Attorney, one must do so in writing.
Do-Not-Resuscitate Order
A do-not-resuscitate order (DNR order) is a medical order stating that cardiopulmonary resuscitation (CPR) will not be started if the heart or breathing stops. The attending physician may sign a DNR order in a hospital or nursing home setting. If a DNR order is entered into the medical records, appropriate medical treatment other than CPR will be given.
Some states allow for a non-hospital DNR order. This order directing emergency workers not to start CPR is cosigned by a physician and the patient. The original copy of this order is held at the home of the patient and should be kept in a visible place where the Emergency Medical Technicians (EMT) may find it.
Mental Health Treatment Preference Declaration
A mental health treatment preference declaration allows the patient say if they want to receive Electro Convulsive Treatment (ECT) or psychotropic medicines when they have a mental illness and are unable to make these decisions for themselves. It also allows them to say whether they wish to be admitted to a mental health facility for up to 17 days of treatment.
One can write their wishes and/or choose someone to make the mental health decisions for them. In the declaration, the person who is writing the declaration on their behalf is called the "principal" and the person chosen is called an "attorney-in-fact." Neither the doctor nor any employee of a healthcare facility in which the "principal" resides may be the "attorney-in-fact". The "attorney-in-fact" must accept the appointment in writing before he or she can start making decisions regarding the patient’s mental health treatment. The "attorney-in-fact" must make decisions consistent with any desires the principal expressed in the declaration unless a court orders differently or an emergency threatens the life or health of the person.
The mental health treatment preference declaration expires three years from the date it was signed. Two people must witness the signing of the declaration. The following people may not witness the signing of the declaration: the doctor, an employee of a healthcare facility in which the "principal" resides, or a family member related by blood, marriage or adoption. The "principal" may cancel the declaration in writing prior to its expiration as long as they are not receiving mental health treatment at the time of cancellation. If they are receiving mental health treatment, the declaration will not expire and may not be cancelled until the treatment is successfully completed.
What happens if the patient doesn’t have an Advance Directive?
Under Illinois law, a healthcare "surrogate" may be chosen for the patient if they cannot make healthcare decisions for themselves and do not have an Advance Directive. A healthcare surrogate will be one of the following persons (in order of priority): guardian of the person, spouse, any adult children, either parent, any adult brother or sister, any adult grandchildren, a close friend, or guardian of the estate.
The surrogate can make all healthcare decisions for the patient, with certain exceptions. A healthcare surrogate cannot tell the doctor to withdraw or withhold life-sustaining treatment unless the patient has a "qualifying condition," which is a terminal condition, permanent unconsciousness, or an incurable or irreversible condition.
A "terminal condition" is an incurable or irreversible injury for which there is no reasonable prospect of cure or recovery, death is imminent and life-sustaining treatment will only prolong the dying process. "Permanent unconsciousness" means a condition that, to a high degree of medical certainty will last permanently, without improvement; there is no thought, purposeful social interaction or sensory awareness present; and providing life-sustaining treatment will only have minimal medical benefit. An "incurable or irreversible condition" means an illness or injury for which there is no reasonable prospect for cure or recovery, which ultimately will cause the patient's death, that imposes severe pain or an inhumane burden on the patient, and for which life-sustaining treatment will have minimal medical benefit.
Two doctors must certify that the patient cannot make decisions and has a qualifying condition in order to withdraw or withhold life-sustaining treatment. If their healthcare surrogate decision maker decides to withdraw or withhold life-sustaining treatment, this decision must be witnessed by a person who is 18 years of age or older. A healthcare surrogate may consent to a DNR order, however, this consent must be witnessed by two individuals 18 years of age or older.
A healthcare surrogate other than a court-appointed guardian cannot consent to certain mental health treatments, including treatment by Electro Convulsive Therapy (ECT), psychotropic medication or admission to a mental health facility. A healthcare surrogate can petition a court to allow these mental health services.
Understanding life-support measures
Life support replaces or supports a failing bodily function. When patients have curable or treatable conditions, life support is used temporarily until the illness or disease can be stabilized and the body can resume normal functioning. At times, the body never regains the ability to function without life support.
When making decisions about specific forms of life support, gather the facts needed to make informed decisions. In particular, understand the benefit as well as the burden the treatment will offer the patient and their loved ones. A treatment may be beneficial if it relieves suffering, restores functioning or enhances the quality of life. The same treatment can be considered burdensome if it causes pain, prolongs the dying process without offering benefit or adds to the perception of a diminished quality of life. A person's decision to forgo life support is deeply personal. When gathering information about specific treatments, understand why the treatment is being offered and how it will benefit the care.
COMMONLY USED LIFE-SUPPORT MEASURES:
- Artificial nutrition and hydration: artificial nutrition and hydration (or feeding tube) supplements or replaces ordinary eating and drinking by giving a chemically balanced mix of nutrients and fluids through a tube placed directly into the stomach, the upper intestine or a vein. Artificial nutrition and hydration can save lives when used until the body heals. Long-term artificial nutrition and hydration may be given to people with serious intestinal disorders that impair their ability to digest food, thereby helping them to enjoy a quality of life that is important to them.
Long-term use of a feeding tube frequently is given to people with irreversible and end-stage conditions. In such cases, the treatment usually will not reverse the course of the disease itself or improve the quality of life. Some healthcare facilities and physicians may not agree with stopping or withdrawing tube feeding. Therefore, explore this issue with loved ones and physician. The "principal" should clearly state their wishes about artificial nutrition and hydration in the Advance Directive.
Keep in mind that tube feeding or artificial nutrition is extremely costly in the United States.
- CPR: Cardiopulmonary resuscitation: Cardiopulmonary resuscitation (CPR) is used when someone's heart and/or breathing stops. CPR is used in an attempt to restart the heart and breathing. It may consist only of mouth-to-mouth breathing or it can include pressing on the chest to mimic the heart's function and cause blood to circulate. Electric shock and drugs also are used frequently to stimulate the heart. When used quickly in response to a sudden event like a heart attack or drowning, CPR can be life saving. But the success rate is extremely low for people who are at the end of a terminal disease process. If one does not wish to receive CPR under certain circumstances, and they are in the hospital, the doctor must write a separate do-not-resuscitate (DNR) order on the chart. If they are at home, some states allow for a non-hospital DNR order. This order directing emergency workers not to start CPR is cosigned by a physician and the patient.
- Mechanical ventilation: Mechanical ventilation is used to support or replace the function of the lungs. A machine called a ventilator (or respirator) forces air into the lungs. The ventilator is attached to a tube inserted in the mouth or into the windpipe (or trachea). Mechanical ventilation often is used to assist a person through a short-term problem or for prolonged periods in which irreversible respiratory failure exists due to injuries to the upper spinal cord or a progressive neurological disease. Some people on long-term mechanical ventilation are able to enjoy themselves and live a quality of life that is important to them. For the dying patient, however, mechanical ventilation often merely prolongs the dying process until some other body system fails. It may supply oxygen, but it cannot improve the underlying condition. When discussing end-of-life wishes, it is important that one makes it clear to loved ones and their physician whether they would want mechanical ventilation if they would never regain the ability to breathe on their own or return to a quality of life acceptable to them.
Final Notes
The distinction often is made between not starting treatment and stopping treatment. Psychologically it is more difficult to withdraw treatment that has already been started, but ethically there is no difference between the two. It is legally and ethically appropriate to discontinue medical treatments that are no longer beneficial. But it is extremely important to go through a thorough review process with the family, medical resources and an ethicist before taking such an action. Consult the ethics committee in the hospital or nursing home setting. It is the underlying disease, not the act of withdrawing treatment that causes death.
The patient should talk with their family, the doctor and any "agent" or "attorney-in-fact" about their decision to complete an Advance Directive or a DNR. If the medical team knows what healthcare the patient wants, they will find it easier to follow the patient’s wishes. If the patient cancels or changes an Advance Directive or a DNR order in the future, they should remember to tell these same people about the change or cancellation.
No facility, doctor or insurer can make the patient execute an Advance Directive or DNR order as a condition of providing treatment or insurance. It is entirely the patient’s decision. If a facility, doctor or insurer objects to following the Advance Directive or DNR order then they must tell the patient or the individual responsible for making the healthcare decisions. They must continue to provide care until the patient can be transferred to another healthcare provider who will follow the Advance Directive or DNR order.
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