End-of-Life Care Planning: Why It's Important

Karen Winston, ADS Planner

What Americans want at the end of life is well-documented. We want to age well and live independently and ultimately to die well, preferably at home, with family, pain-free, with spiritual support, with knowledge that our family will be cared for, and that our wishes will be honored.¹ However, data indicates the experience of dying people and their families is almost the reverse image of what Americans say they want.²

Discussing end-of-life issues beforehand helps family have a clear idea of your wishes.

Recently, the importance of end-of-life care planning has gained heightened visibility in the medical world and in the news. As a result, the Healthy Aging Program of the Center for Disease Control and Prevention (CDC), the national Directors of Health Promotion and Education (DHPE), and the Center for Practical Bioethics (CPB) are working together to raise this as a critical public health issue.

I attended an End-of-Life Care Planning workshop on August 4, 2009, sponsored by Aging and Disability Services, along with these organizations. The purpose of the workshop was to pilot test the curriculum, and inform public health and aging professionals about end-of-life issues and how these issues fit within the scope of public health.

Myra Christopher, President and CEO of the Center for Practical Bioethics, facilitated the workshop. She emphasized how end-of-life care is emerging as a public health issue because:

1. The aging and dying of the baby boomers will overwhelm our healthcare delivery system by 2030.
2. Individuals in low socioeconomic status, those who are racially and ethnically diverse, the uninsured and underinsured, and minors have less access to services and worse outcomes.
3. People need information and resources to advocate for themselves and their loved ones for quality end-of-life care.

Advance Care Planning

Since the late 1960s, people have searched for ways to make their wishes known about end of life and how best to empower others to honor their wishes when and if they are unable to make decisions for themselves. Living wills were the earliest effort to document preferences. A living will, the most basic directive, consists of a personal statement indicating that the declarant (the person making the statement) does not wish to have life-sustaining treatment in the event that he or she is in a terminal condition with no hope of recovery.

Healthcare treatment directives (or medical directives) evolved to overcome some of the limitations of living wills. Healthcare treatment directives are also personal statements of an individual's preferences with the legal underpinnings of living will statutes. However, directives are broader in scope than living wills—that is, they are not limited to terminal situations, and are more complicated than living wills.

Durable powers of attorney for healthcare decisions address the same situation by allowing the declarant to name a surrogate to act on his or her behalf when he or she can no longer make decisions. The Healthcare Durable Power of Attorney differs from the general power of attorney, which loses its validity upon the incapacity of the person who created it. Every state now has legislation providing for a durable power of attorney for healthcare decisions.³ This legislation generally provides the surrogate/proxy with the same authority to make decisions as the patient him- or herself.

Consensus among end-of-life experts is that talking with loved ones and naming a durable power of attorney for healthcare decisions provides the best assurance that your wishes will be known and honored.

Where to Find Resources

A variety of tools are available in English and Spanish to help people think through end-of-life issues and how to name a durable power of attorney for healthcare decisions, including:

• Caring Conversations
  
  
• Finding Your Way
  
  
• Five Wishes
  
  
• Respecting Choices 
  
  
• What Y'all Gon' Do With Me? The African American Spiritual and Ethical Guide to End of Life Care

My first reaction after receiving the information from the End-of-Life Care Planning workshop was empowerment, although I was shocked to learn that only about 30 percent of all adults have made an advance directive. I also received direction about how to have difficult, but important, conversations about the end of life—my life—and how to make it known to significant others, including my close friends. After experiencing the death of my parents, neither of whom informed any of their children or other family members about what they wanted at the end of their lives, I was relieved to have this information, and thankful when I put my wishes in writing.

Other End-of-Life Planning Resources

• Centers for Disease Control and Prevention (CDC) Healthy Aging Program
  
  
• Washington State Department of Health Living Will Registry
  
  
• Caring Connections
  
  
• Hospice Foundation of America
  
  
• National Hospice and Palliative Care Organization
  
  
• National Family Caregivers Association

Sources:

¹ "The Quest to Die with Dignity: An Analysis of Americans' Values, Opinions and Attitudes Concerning End-of-Life Care." 1997. American Health Decisions.

² "A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT)." 1995 Journal of the American Medical Association 274 (20): 1591-1598.

³ Several resources are available to help research state laws. A comprehensive source is the American Bar Association Commission on Law and Aging. See, for example, the Consumer's Tool Kit for Health Care Advance Planning. 

Learn More About Advance Directives. See "Advance Directives: When You Are Unable to Make Your Own Decisions" in the April 2008 issue of Seniors Digest.