As Nelson Mandela receives intensive care at home, one has to wonder what conversations he had with his wife and family about his wishes for end of life in the event he became incapacitated? Did he want to be on a respirator and breathing tube for prolonged periods of time? What about feedings in the event he was unable to take food by mouth? Did he want to be resuscitated if he were to succumb to a disease process? If he did have those conversations, was any information written down?
If for some reason your heart should stop or you are unable to breathe on your own, do you want CPR (cardiopulmonary resuscitation) and a breathing tube? Or would you like to die a natural death?
I ask that question to all patients who are entering the hospital. Oftentimes patients have had experiences with the death of a loved one in the hospital after a protracted illness, including many invasive tests and procedures. Others have had the experience of family members opting to die at home without further intervention.
The Patient Self-Determination Act of 1990 requires hospitals, nursing homes, and other healthcare facilities to provide information on advance directives to patients. Patients have the right to determine what is best for their care. A Living Will delineates healthcare decisions in the event a person is incapacitated or unable to make decisions. In such a case, a proxy, or stand-in decision maker acts in the best interest of the person according to their written wishes.
Communicating end of life wishes to family members and physicians, as well as having it officially recorded, is extremely important. What someone decides can be influenced by a myriad of factors—unresolved family issues, fear of death, or financial incentives. Oftentimes patients ask me to do everything if it will bring them back. I ask if they mean a return to current level of life, engagement and wellness. If so, there are no guarantees. In some instances, the medical community can give quantity but not quality. “Doing everything” does not mean we can prevent your death. “Doing nothing” does not indicate that the medical community is abandoning the patient and family, nor does it mean “do not treat.”
Talk to your primary care doctor about your wishes before you are ill, and include your family in the decision making process. Speak candidly with your spouse and honor his or her wishes. Also, remember the durable power of attorney for healthcare can always be modified if your life situation changes, such as new marriage, divorce, etc. Finally, discuss your wishes with your attorney to have documents drawn up for a durable power of attorney for healthcare, including a proxy for your health in the event you are unable to make decisions.
To be clear, it’s not about what the proxy wants; it’s about what the patient would do if he or she were in their right mind while making the decision. The goal is to die with dignity.
Sylvia E. Morris, MD, MPH, is a board-certified physician in internal medicine and holistic medicine. In addition to her clinical practice, she is a community health advocate as well as a medical consultant and commentator for media outlets such as The Weather Channel, Atlanta Fox 5 News, and CNN.com. Tell her what you think on Facebook and follow her on Twitter.