Confronting the Ultimate Questions - Advance Directives Give Patients a Voice When They Can't Speak for Themselves

By Margaret McLean

There are perhaps no tougher decisions than those concerning death. The very idea of a "good death" seems incongruous, out of step with the value we place on life and our ability to choose how we live. However, it is precisely what we value about life that underlies our convictions about how we want to die.

Determining the way we die is difficult in any case, but it becomes infinitely more complicated when we are no longer able to speak for ourselves. Coma, mental incapacity, or persistent vegetative state (where the patient remains totally unresponsive to his or her environment) can all prevent people from participating in decisions about their own care. In those cases, the choices may burden and divide an already grief-stricken family.

We can help to prevent such agonizing uncertainty for our loved ones. A good option for Californians is to execute an Advance Healthcare Directive which allows us to do much more than a traditional living will. With this single document, we can outline how we wish to be treated and assign an agent to make health-care decisions for us if we become incapacitated. These actions can help to protect us against being left without a voice in the midst of the gleaming white-and-silver world of medicine.

Although some studies have indicated that physicians do not always pay attention to advance directives, the process of thinking through and discussing what would make a good death is still useful. These documents can provide the context for productive communication among health-care providers, family, and friends and can stimulate reflection on moral and physical values and goals. There are at least two critical questions to be considered.

What are my goals for medical treatment?

Is it enough to remain alive whatever the quality of that life? One way to become clear about treatment goals is to take our moral pulse, to take a value history. Typical questions include:

• What do I value most about my life?
  
  
• What, if anything, could I not live without?
  
  
• What, if anything, would make my life intolerable?
  
  
• How important is physical or mental competence to me?
  
  
• How important is independence in my life?
  
  
• Is cost an important factor in my consideration of options for medical care?
  
  
• What role do religious beliefs and values play in my life and my decisions?
  
  
• What life circumstances might cause me to refuse life-sustaining treatment?
  
  
• What do I think about life and its progression toward death? Am I fearful of death? Am I fearful of dying?

Who should be my agent?

My agent should be someone who is capable of making decisions based on my wishes and authentic to my values, visions, and goals. Whomever I choose — relative or friend — I must engage him or her in conversation about life and death, about what treatments would be desired and under what circumstances, about what makes life worth living, and what might make death a welcome friend.

Life and hope have limits to which one consents. My agent needs to know, accept, and be willing to implement those limits on my behalf.

Thinking about death is hard, and the conversations we must have to communicate our wishes may be strained and difficult. But ultimately, executing an advance directive and assigning an agent may save our families enormous grief. These steps are gifts we leave to those we love.

Margaret R. McLean is director of biotechnology and health care ethics at the Markkula Center for Applied Ethics at Santa Clara University and director of the Applied Ethics Center at O'Connor Hospital, San Jose, California.

Update of an article that originally appeared in Issues in Ethics, Winter 1997.

Additional resources on healthcare ethics are available on-line at www.scu.edu/ethics/practicing/focusareas/medical/.