Anyone who doubts the importance of advance healthcare directives ought to consider the case of Terri Schiavo, the Florida woman who suffered severe brain damage when her heart stopped beating for several minutes. Schiavo was at the center of a bitter family dispute and broad national debate about the right to die and whether she should be kept alive artificially.

That tragic situation and others like it should give pause to physicians, who may have to make life-and-death decisions while caught between the conflicting desires of patients’ family members. It is vital that doctors become educated about the legal and ethical issues that advance directives involve.

The term advance healthcare directive (or simply advance directive) refers to instructions about an individual’s future medical care in the event that individual is unable to speak for himself or herself. Advance directives can contain information about a patient’s desires concerning a range of healthcare decisions, particularly those related to end-of-life care.

Both federal and state laws govern the creation and use of advance directives. On the federal level, the Patient Self-Determination Act establishes strict guidelines regarding advance directives for all healthcare facilities receiving Medicare and Medicaid payments.

In California, the Health Care Decisions Law, Probate Code §§4600-4805, sets forth requirements for establishing advance directives, as well as guidelines for how healthcare providers should implement them. The state measure applies only to adults who lack the capacity to make such decisions for themselves.

It is crucial that any individual establishing an advance directive give informed consent. Patients must be made to understand exactly what medical treatments will and will not be provided under the terms of the directive, and what criteria will be used to determine when the final provisions will take effect.

Competency Is Not Always Clear
For an advance directive to be valid, a patient must be of legal age and mentally competent. Determining mental competency is not always easy, however. Consider the following purely hypothetical scenario:

A 58-year-old woman with MS is hospitalized, and the medical team thinks she may need to be placed on a feeding tube to assure adequate nourishment. The patient agrees to this procedure in the morning.

However, in the evening, before the tube has been placed, the patient becomes disoriented and seems confused about her decision regarding the feeding tube. She tells the team she doesn’t want it.

They revisit the question the next morning, when the patient is again lucid. Unable to recall her state of mind from the previous evening, she again agrees to the procedure. The patient’s underlying disease is impairing her decision-making capacity. Since her ability to make decisions is questionable, getting a surrogate decision-maker involved can help determine what her real wishes are.

Important Issues to Be Resolved
A patient may set up an advance directive orally or in writing. Many template forms are available to set up an advance directive; for a sample form and additional information, go to www.cmanet.org.

A written advance directive should include:

• the individual’s healthcare instructions
• the designation of an “agent” to make healthcare decisions if and when the patient becomes incapacitated
• a grant of authority for the agent to make decisions related to the care of the patient
• the signatures of the physician and appropriate witnesses (as designated on the form)
• nomination of a conservator/guardian for the person or estate if court proceedings take place.

If an advance directive is set up orally, written documentation of its provisions—including the designation of an agent—must be included in the patient’s medical record. A signed informed consent form should also be included.

• Do you want to be resuscitated if your heart stops?
• Do you want to be put on a ventilator if you can’t breathe for yourself?
• If you are unable to enjoy life, do you want to be given antibiotics if you become infected, or just care that will make you comfortable?
• Are there other circumstances in which you would want to be given comfort care only?
• Would you want to be kept alive by a feeding tube and intravenous (IV) fluids if there is no hope of recovery?
• Do you want to state some general principles regarding your healthcare and then trust your healthcare proxy to make specific decisions?

If a physician is not present when all the ramifications of an advance directive are explained to the patient, the physician should speak to the individual about the subject as soon as possible. Having that conversation is the best way to gain firsthand knowledge about what the patient does or does not comprehend. If there are any gray areas, they should be cleared up, and a new directive specifically addressing those issues should be created.

When the time comes to honor whatever the patient’s wishes are, the attending physician should consult with other members of the healthcare team before reaching a decision. If there is a consensus that death is imminent, the attending physician must comply with the provisions of the advance directive.

According to California Probate Code §4740, a healthcare provider is not subject to civil or criminal liability, or to discipline for unprofessional conduct, for actions that comply with the Health Care Decisions Law. This extends to (but is not limited to) the following:

• Complying with a healthcare decision of a person the provider believes in good faith has the authority to make decisions for a patient.
• Declining to comply with a healthcare decision on the belief that the person making the decision lacked authority to do so.
• Complying with an advance directive on the assumption that the directive was valid and had not been revoked or terminated.

By knowing how advance healthcare directives work, physicians can act with greater confidence and comfort in difficult end-of-life situations. An added benefit: They can also reduce the risk of later being sued by deceased patients’ family members.