End-of-life care can be an emotionally charged time as patients seek assurance that their final days will be quality days. Throw scary phrases like “do not resuscitate orders” into the conversation, and many patients and their families have difficulty making their preferences known. We discussed some of the legal issues that patients and physicians deal with during this time with professor Stacey Tovino, director of the health law program at UNLV’s Boyd School of Law. Tovino is a leading expert in health law, bioethics, and the medical humanities — and she's using that expertise to help shape curriculum in the new UNLV School of Medicine.

What are some of the more important legal issues regarding end-of-life care?

From a legal perspective: One, how can a patient execute an advance directive;  and two, who can make a medical decision, including a decision to withdraw life-sustaining treatment, for a patient if the patient has not executed an advance directive, the patient is incompetent, and the patient has a terminal or irreversible condition.

What is an advance directive?

An advance directive is a way for a patient to make his or her end-of-life wishes known. Most state laws authorize several different types of advance directives. One type, known as a “living will” or a “directive to physician,” permits a patient, while competent, to document his or her directives to a physician regarding the administration, withholding, or withdrawal of life-sustaining treatment. The living will goes into effect when the patient becomes incompetent. Then, the physician follows the patient’s wishes as outlined in the directive.

A second type of directive is known as a “health care power of attorney,” “medical power of attorney,” or “durable power of attorney for health care.” In this directive, a patient who is currently competent (called the principal) appoints an agent to make health care decisions in the event the principal becomes incompetent. At that point, the agent can direct a physician to administer, withhold, or withdraw life-sustaining treatment based on the instructions provided by the principal in the document.

A third type of directive, known as a do-not-resuscitate (DNR) order, can be one of two types: an in-hospital DNR order, directing health care providers working in a hospital setting not to resuscitate a hospital inpatient (and here, depending on state law, resuscitation may or may not be defined to include cardiopulmonary resuscitation (CPR), advanced airway management, defibrillation, artificial ventilations, and transcutaneous cardiac pacing); or an out-of-hospital DNR order, which directs individuals, including first responders, not to resuscitate the individual if something should happen in the individual’s home, at the individual’s place of work, while the individual is an ambulance, and even while the individual is in an outpatient department of a hospital, including the hospital’s emergency department.

Do states differ in how they treat health care advance directives?

Yes. Some state laws address only the withholding or withdrawal of life-sustaining treatment, while other state laws also address the administration of life-sustaining treatment.  Because state laws vary, it is important a physician or other health care provider administering, withholding, or withdrawing life-sustaining treatment pursuant to an advance directive executed in another state check state law prior to following the directive. Some states do honor advance directives from another state, including Nevada.  

What legal and ethical norms should guide a physician when a patient has a terminal illness but has not specified any health care advance directives?

If we are talking about withdrawing life-sustaining treatment from these individuals, most states have very specific laws that govern this. For example, under Nevada law, if an adult does not have an advance directive or other formal decision maker (for example, a guardian), then another individual may provide “surrogate consent” to medical decisions, including the withdrawal of life-sustaining treatment.  

In Nevada, the following individuals, in the following priority order, may make a medical decision for the patient:

• the spouse
• an adult child or, if there is more than one adult child, a majority of the adult children who are reasonably available for consultation
• the parents of the patient
• an adult sibling or, if there is more than one adult sibling, a majority of the adult siblings who are reasonably available for consultation
• the nearest other adult relative by blood or adoption who is reasonably available for consultation

What if the patient and the physician strongly disagree about a proposed treatment or its withdrawal during end-of-life care?

I would recommend the physician tell the patient that he or she disagrees with the care requested by the patient and should allow the patient to be transferred to another health care provider who is willing to carry out the patient’s wishes, if that other provider exists.  

If we are talking about withdrawing life-sustaining treatment and the state has a medical futility law, that law would govern. In Texas, for example, a physician may refuse to honor a patient’s advance directive or decision to continue life-sustaining treatment if the physician believes the continued treatment would be medically hopeless or futile. The physician’s decision to refuse treatment is subject to review by the hospital’s ethics committee and if the committee agrees with the physician and determines the case is futile, the patient’s family or surrogate decision maker has 10 days to make arrangements to transfer the patient to a facility willing to continue the treatment.

Is there a good resource you could recommend for readers to access an advance directive and/or living will document?

There are many sources of great information about advance directives. One source is NVLivingWill.com.

What is the most important thing people should take away from this article?

Take the needed steps today to create an advanced directive.