The doctors suggest that the family consider taking him off of life support and allow his natural death to occur. The family is torn and struggles with this decision. Kareem never expressed his end-of-life wishes and no one really knows what he would want in this situation. His wife says that he would never have wanted to live as a “vegetable.” Kareem’s brother disagrees, equating the act of “pulling the plug” with murder. As the hospital’s clinical ethicist, I’ve been asked to help the medical team and family sort through this ethical dilemma. Unfortunately, it’s a crisis I see all too often.

As the United States finds itself embroiled over the issue of so-called “death panels,” I think of families like Kareem’s. Nationwide only about 25% of individuals have completed advance directives or living wills. Because this conversation is currently un-reimbursable by health insurance providers and doctors find it difficult to face mortality, these difficult conversations never occur until the family is confronted with this monumental decision. Proposed legislation would have provided payment for the physician’s time to discuss advance care planning, but now that this legislation has been abandoned in the face of public hysteria, it is up to individuals. If we don’t take the time to talk to our loved ones and fill out an advance directive, someone else will be forced to make this decision for us—our loved ones, our physicians, hospital ethics committees or even the courts.

Medical technology has increasingly become able to prolong life in profoundly diminished vegetative states. In 1976, California became the first state to enact legislation allowing “natural death” or “death with dignity.” Today, all 50 states have laws authorizing advance directives.

Advance directives usually have two parts: the living will and the naming of the proxy decision maker. The living will expresses whether a person would want to have his or her life maintained on life support such as ventilators, feeding tubes and dialysis when in a terminal condition or suffering from a non-recoverable brain injury. Expressing one’s own wishes enables the family and physician to determine whether the patient would want to be treated aggressively to maximize longevity or to focus on providing physical comfort, personal dignity and possibly, the ability to die at home. The surrogate decision maker or power of attorney’s determination takes precedence. Therefore this person should be aware of the patient’s life values and should represent the patient’s wishes even if they conflict with their own.

It is generally not necessary to engage a lawyer to draft an advance directive. Many states have online forms; all hospitals and many physicians’ offices can also provide the forms and additional information upon request. Five Wishes, a national project created by Aging with Dignity, is an exceptional resource. The federal Patient Self-Determination Act ensures that every patient is asked whether they have an advance directive or want information about one at every hospital admission.

When a patient doesn’t have an advance directive and the family and medical team can’t agree on treatment preferences, the ethics committee is often called to assist. As an ethicist, my role is to facilitate communication and make recommendations, not decisions. I ask the family questions designed to focus on the goals of treatment and what the patient would likely say if he or she could wake up and join our conversation. I ask them to think about his or her life prior to this hospitalization and how it will be changed due to the accident. Collectively, we want to determine what the patient would want in this situation - not what we want for him or her.

Kareem’s family was finally able to conclude that living on a ventilator would violate his values for his life. They agreed to withdraw life support to enable a natural death.

The desire to preserve self-determination in preparing for life’s end must move us beyond this realm of hysteria generated by the summer’s talk of “death panels.” Completion of an advance directive is the best way to protect the interests of patients and to conform to their wishes.

Do you have yours?



About the Author
Deborah K. Cruze is a bioethicist currently serving as a Program Associate in Health Sciences and Ethics at the Center for Ethics, Emory University in Atlanta. Originally from Nebraska, she began her career as an assistant attorney general in Arizona before being appointed as a City Judge in Glendale, where she served for eight years.

Always fascinated by medicine, Deborah changed career paths and completed an M.A. in Bioethics from Midwestern University. After completing a post-doctoral fellowship in clinical ethics at the University of Texas M.D. Anderson Cancer Center in Houston, she became the first clinical ethicist at Grady Health System in Atlanta. She also served as the Regional Ethicist for Providence Health and Services Southern California in Los Angeles.

Deborah has served on the ethics committees at eight hospitals and the institutional review boards of two institutions. Her scholarly interests include: informed consent and pediatric assent, health care access and disparities of care and treatment as issues of social justice health care policy, benefits of advance care planning, advance directives, and palliative care, ethics education and international bioethics. She has published on these topics and presented at multiple regional, national and international conferences.

She is married and the mother of three grown children.