End of Life Care
Most of us are familiar with the tragic story of Terri Schiavo. Schiavo suffered severe brain damage from heart failure, leaving her in a persistent vegetative state. A person in this condition has no awareness of or response to the external environment. A legal battle was waged between her parents and husband over keeping her alive artificially with feeding tubes. The Schiavo case highlights an issue we are uncomfortable addressing: what kind of medical care do we want if we become sick and unable to make medical decisions?
If we can't make our own choices, who will protect us and see that care is in line with our wishes? Let's face it, we don't want to think about death or the possibility that we might become suddenly helpless. However, making end-of-life decisions while you are of sound mind and body eases the likely burden placed on families and loved ones forced to make those choices.
Our potential caregivers are guided by three principles of health care when making medical treatment decisions: patient autonomy, substituted judgment and beneficence.
Patient Autonomy -- A crucial principle in American health care.
Patient autonomy means that competent, adult Americans have the right to choose which medical treatment they will and will not permit. This concept can lead to conflicts. If a patient wants treatment that is experimental or not recognized as appropriate for his or her condition, the patient's physicians may refuse the request. A patient can't force treatment that is illegal or push unethical choices on physicians. Patient autonomy is generally respected when a patient denies care for a life-threatening condition. For example, a competent adult with a fatal tumor may choose to refuse anti-tumor treatment in favor of using painkillers to maintain comfort (palliative care).
Substituted Judgment - Medical choices made on your behalf.
If a patient is confused, unconscious or otherwise unable to make rational decisions, or if the patient is a minor or is mentally incompetent, the principle of substituted judgment is used. In these instances, either the legally determined, closest relative or a court-appointed guardian makes clinical decisions and choices on behalf of the injured or sick person. For a married person, the spouse has this responsibility. A parent or guardian makes these decisions for a minor. Legal guidance is essential in complex situations where there is no clear-cut authority for making substituted judgment. Such is the case when an unmarried adult whose parents are dead might have several siblings who had different opinions about treatment.
Beneficence - When immediate care is called for in critical conditions.
In most medical emergencies, beneficence is used. This happens when a person who needs medical treatment is unresponsive or otherwise unable to make a decision and there is no access to a close relative or guardian. Under these circumstances, caregivers use their best judgment to save a life and relieve suffering. Let's say an unidentified, sole survivor of an auto accident reached an emergency room in critical condition and needed immediate care to have a chance at recovery. The caregivers would continue treatment until a next-of-kin or guardian could be contacted.
The Importance of Advance Directives
Advance directives can help protect and preserve your clinical autonomy. In Tennessee the documents are called an advance care plan and appointment of health care agent. These documents use very clear language to state your choices for medical care. They can be downloaded at no charge from the Tennessee Department of Health's Web site at http://www2.state.tn.us/health/Boards/AdvanceDirectives. 
The advance care plan permits the naming of a person and an alternate that you empower to make clinical decisions when you cannot make them yourself. It also allows a person to list conditions of life, such as permanent coma, permanent confusion, inability to perform any activities of daily living, or end-stage disease, that are unacceptable. Finally, treatments may be noted that a person either wants or chooses to deny in these circumstances. These include CPR, life-support systems, tube feedings, IV fluids, transfusions and other treatments of new conditions.
The appointment of health care agent confirms the one person and one alternate charged with making medical decisions. Contact information is included for each person. The documents require either two witnesses or a notary public when signed. Witnesses must be competent adults. They must not be the health care agent or alternative, related to the person, or entitled to any portion of the person's estate.
The documents won't really help unless copies are filed with your:
- Personal physician.
- Designated health care agent and alternate.
- Personal attorney.
- Personal papers, the location and access of which are known to close family and friends.
In addition, close friends and family should know what you included in your advance directives.
Advance directives clearly define what medical treatment you want when illness or injury prevents you from making decisions. You may cancel these documents, change their content, or select new agents so long as you are competent when making these changes. The directives are legal and binding in the United States, but not when traveling abroad.
Although advance care documents can be obtained and completed without the help of an attorney, legal guidance is suggested. An attorney can identify and help avoid potential conflicts in planning. The same attorney could be needed to mediate disputes that may come up when advance directives are being carried out.
Advance directives offer:
- Peace of mind - you won't receive treatment or be maintained in a condition that is unacceptable to you.
- A reduced burden on family and friends.
- Clear guidance on medical care.
Only a small number of American adults have completed advance directives. Advance directives can prevent suffering, futile treatment, and emotional conflict for loved ones. You may want to consider completing advance directives, and then be sure your friends and family know of the choices contained in the documents.
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