The events surrounding the death of Terri Schiavo have caused a nation to stop and think. How does one make appropriate preparations concerning end-of-life decisions in order to avoid similar controversy and dispute? How can you maximize your ability to control what happens and to specify the level of care you choose? There are simple steps you can take to communicate your wishes in the event that you or a close family member faces a situation where — at the very least — quality of life hangs in the balance.
What should you do?
- Share your views with your spouse, partner, parents, and children — and put your decisions in writing.
- Have your physician or other health care provider complete a physician's orders regarding life-sustaining treatment ("POLST").
- Prepare and execute an advance directive.
It is always a good idea to have discussions about treatment long before the information is ever needed and to put decisions in writing. Terri Schiavo reportedly talked with her husband, Michael, about her wishes concerning end-of-life care — as every court that ruled on this point found — but, no one would argue that it would have been much easier for everyone if these wishes had been put in writing. Evidence of one's choices will in many cases provide a foundation for both medical and legal decision-makers when they must make choices.
You can also talk to your physician about obtaining a POLST, a document developed at the Oregon Health Sciences University Center for Bioethics. It is a document qualified by the Health Insurance Portability and Accountability Act of 1996 ("HIPPA"). The form has been the prototype for similar documents approved across the country. It requires consultation with a health care provider and represents a physician's orders. The categories range from consideration of cardiopulmonary resuscitation ("CPR"), to administering of antibiotics if one has a pulse, and to the issue of artificial feeding. In each case, the care choice must be limited to what was stipulated by the joint patient/provider decision. Otherwise any and all medical procedures may be utilized. The box below shows a typical directive:
Both the patient (or the patient's representative) and the physician must sign the POLST, which is printed on shocking-pink cardstock for impact or posting. A POLST leaves little room for misunderstanding about a patient's wishes for care. An order for no CPR, for instance, is the equivalent of the standard hospital do-not-resuscitate order ("DNR").
Perhaps the most critical document to ensure one's level of care is the advance directive. This statutory form, adopted by the Oregon Legislature in 1993, encompasses two elements: (1) specific medical care directions and (2) designation of the health care representative. Unlike the old "living will" still used in some states, the advance directive lasts indefinitely and does not have an expiration date. The signer can choose significantly more definitive levels of care than are available under most health care powers of attorney. That is true whether one wishes minimum or maximum efforts made. You can see by the example below that several choices apply to the category of Extraordinary Suffering:
Extraordinary Suffering. If life support would not help my medical condition and would make me suffer permanent and severe pain:
A. INITIAL ONE:
_____ I want to receive tube feeding.
_____ I want tube feeding only as my physician recommends.
_____ I DO NOT WANT tube feeding.
B. INITIAL ONE:
_____ I want any other life support that may apply.
_____ I want life support only as my physician recommends.
_____ I want NO life support.
If one trusts the health care representative implicitly, one may leave all the decisions to him or her, a key reason why the health care representative must sign, acknowledging acceptance of this responsibility.
While the advance directive form adopted by the Oregon Legislature seems by nature rigid, in fact one may delete or add language as appropriate. Often people choose to add language to ensure that their health care representative has access to all records, otherwise off limits under HIPAA. A "Catholic Addendum" to the advance directive has also been developed, as well as the definition of "a persistent vegetative state," which directly addresses the situation that confronted the Schiavos.
Ultimately, the choice should be yours. The issues involved are complex, and you should have careful consultation with your physician, your family, and — if appropriate — your lawyer. By taking these steps to communicate your wishes now, you can be confident they will be carried out and that those close to you will be spared from having to make a potentially painful decision.