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

Karen Winston, ADS Planner

It's important for all of us to plan for end-of-life care now, by putting our wishes in writing and making them known to family members and close friends. The October Seniors Digest included a discussion about important components of end-of-life care planning, such as living wills and healthcare durable powers of attorney, and provided a variety of available tools and resources, for example, Caring Conversations. This issue will review a few stories that demonstrate why planning for end-of-life care is critical.

In the Seattle Magazine (January 2007) Robb Miller, Executive Director of Compassion & Choices of Washington gives a real life account of how planning ahead can be very effective:

"In 1994 his longtime partner was diagnosed with AIDS. The couple drafted a living will and a durable power of attorney for health care—documents together known as an advance directive—to ensure their end-of-life wishes would be followed. Two years later, his partner's family disputed Miller's medical decisions, nearly getting the ill man removed from home hospice care. But because Miller had been designated as his partner’s health care agent through their advance directive, he had the legal right to overrule the family." (Source: "Rest in Peace," By Nicholas Sesnak. Seattle Magazine, January 2007)

Here's another story about being proactive and planning ahead:

"Mr. Smith started smoking cigarettes when he was a teenager, and continued for nearly 40 years. During his 50s, he was diagnosed with terminal cancer and given months to live. But before being diagnosed, he sought legal advice to develop a living will, naming his wife as his health care agent. Everything was clearly spelled out. In his living will, he decided to limit measures if ever terminal to only those that would keep him comfortable and relieve pain. He also made sure that his wife, acting as his health care agent, knew this, and his family was aware of these arrangements as well. As Mr. Smith's condition advanced, hospice was involved to help him and his family. Mr. Smith's final days were peaceful. The family gathered to be with him. He passed quietly in the comfort of his home, with his loving family beside him." (Source: "A Patient's Story: End-of-Life Decisions," by Christopher M. Hughes, MD. Institute of Good Medicine, Pennsylvania Medical Society. January 29, 2009.)

In contrast to these examples is my own experience. In 2003, my mother, who at the time was a 12-year stoke survivor, suffered a pulmonary thrombotic event while preparing to leave for her doctor's appointment. My mother never regained consciousness, but hung onto life through life-support devices. Needless to say, no one was prepared for the sudden attack, and my mother had no living will or power of attorney for healthcare decisions.

I remember the meeting with her doctor, my father and family members as we sat next to her hospital bed to discuss options. As her primary caregiver, my Dad was determined to take her home, in spite of the fact that the doctor's judgement was that Dad's ability to care for her would be next to impossible. My father's younger brother kept insisting that the doctor was wrong, while I repeatedly tried to explain to my father that Mom would never be the same again. The same dialogue continued for what seemed like hours. The next day, Mom passed away peacefully. I have no idea what her end-of-life care wishes might have been, but I do know had her wishes been in writing, the agony of those four days would have been a lot different.

Then there's the well-publicized 2005 case of Terri Schiavo, the Florida woman whose parents and husband fought over whether or not to remove her from artificial life support. Terri Schiavo didn't have an advance directive, which left her fate to the courts.

I now have a healthy understanding and appreciation of the need for advance directives. Hopefully these stories demonstrate the importance of documenting your end-of-life wishes, too. It is a simple legal process, best if completed with assistance from an attorney, which yields assurance, confidence and peace that your end-of-life wishes are known.

Where to Find Resources

There are many tools and resources available to assist you with preparing living wills and healthcare durable powers of attorney. However, documenting your wishes is just the beginning of the process. After completing your documents, it's important to give copies to your family members, friends, your designated health care agent, and your physicians, and then discuss your wishes with them. A good way to ensure that your documents will be available when you need them is to register them with The Washington State Living Will Registry, which is a web-based registry available to Washington State residents 18 years or older. It costs nothing to participate, and the registry digitally stores a copy of the participant's health care directives and emergency contact information.

The registry provides vital information and gives health care providers a secure, web-based system to access patients' written treatment wishes when a patient is unable to communicate or for individuals incapacitated due to mental illness. Registering your documents on the registry is voluntary and is not required by Washington law. As of August 31, 2009, the registry had approximately 1,000 registered participants. (Source: "Living Will Registry: A Report to the Legislature," January 2009. Washington State Department of Health Epidemiology, Health Statistics and Public Health Laboratories)

Other Important Resources

Compassion & Choices of Washington State (Advance directive packet can be downloaded from www.candcofwa.org, then click on "Advance Directive.")

Caring Conversations

Centers for Disease Control and Prevention (CDC) Healthy Aging Program

Five Wishes

Finding Your Way

Respecting Choices

What Y’all Gon’ Do With Me?