Death is not something we like to think about, and it's even harder to talk about. It's a concept that doesn't fit into our own personal reality, but it can easily be externalized as something that happens only to others. You're probably already getting uncomfortable reading this.
As the medical director for Senior Markets at Highmark Blue Cross Blue Shield West Virginia, my voice in this discussion may make some of you feel skeptical. For me, this issue goes beyond insurance, medicine and law. It's about my concerns regarding the health and quality of life of the community in which we live and the importance of patient choice. Part of our life is the process of dying, which includes making deliberate choices for care at the end of our lives.
April 16 is National Health Care Decision Day. This national day is a collaborative effort of organizations committed to ensuring that all Americans, no matter how young or old - no matter how well or sick - have the information and opportunity to communicate and document their health care decisions. The goal is simple: use a single day, all across the country, to provide increased focus on the importance of advance care planning and advance directives for both the public and providers.
We don't all have to die in the ICU on a ventilator, although many may do so for a variety of reasons. I know from personal experience that families struggle deeply when they face the stress of decision making for a desperately ill relative.
It's even more difficult when they don't know their loved one's health care wishes.
The confusion and stress can be reduced through advance care planning. These planning decisions can be written in an advance directive so that others know what they are. This directive includes two parts:
A "health care power of attorney" where you name the person to speak for you and make health care decisions if you cannot speak for yourself.
A "living will" where you can state the kinds of medical treatments you would or would not want at the end of life.
One of the best examples of a tool that can be used to help with these decisions is the advance directive form. Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer engagement initiative to improve care at the end of life. They have the advance directive form for West Virginia at www.caringinfo.org/files/public/ad/WestVirginia. pdf, plus all the information you will need to get it officially filed.
After completing the advance directive, it's time for "the talk."
Share the documents and your thoughts with your family members and your loved ones, and then openly discuss your wishes and treatment preferences.
Discuss your advance directive with your physician so that he or she understands your wishes, and also discuss the risks and benefits of your possible care options, including the merits of both curative and palliative approaches. They are not mutually exclusive.
With palliation, there is emphasis on symptom relief, pain control and quality of life, features that can be part of everyone's care plan. Also, remember - no matter what age you are - life changes, and so may your wishes.
Be sure to revisit your advance directive and continue the conversation with your loved ones and your physician.
This issue is about the right care for the right person at the right time in the right setting. It's about patient centeredness. Without consciously considering your wishes, sharing your thoughts with your family, loved ones and physician, and documenting these wishes, you will be less likely to have your choices for care at the end of life met.
Start the conversation on April 16 ... because your decision matters.
Dr. Judith Black is the medical director for Senior Markets at Highmark Blue Cross Blue Shield West Virginia.