How to Take Control of Your Own Death

Today I was sad to learn that Emma, a friend's 88 year-old mother, is still alive. Years ago this poor woman had a stroke that left her paralyzed. After having a leg removed due to complications from Diabetes she was moved into an assisted living facility where she has lived for a very long time.

A few days ago her heart stopped beating. She was in the middle of a potentially peaceful and painless exit event, but someone on the staff noticed she was dying and called 911. Once the EMT's arrived, life-sustaining measures were taken. She was shocked with paddles and transported to the hospital by ambulance with sirens blaring and lights flashing. She was immediately put on IVs and a respirator. Due to the quick response of the facility staff, the skill of the EMTs, and extreme medical interventions, much against her wishes, Emma survived.

Emma had an Advance Directive, and she had made it clear to her family and to the staff at the care facility that she was at peace in her soul and she was ready to die. Even so, panic took over and Emma's wishes were ignored.

This is a scenario that plays out hundreds of times every day in communities across America. Sadly, it happened with my own father. Several years ago he suffered a debilitating stroke; the next day he was diagnosed with prostate cancer. My mother cared for him at home for five-and-a-half years, during which time he had a series of smaller strokes that further compromised his ability to do the things he enjoyed. His pain level steadily increased as the cancer spread to other parts of his body. Then one night when he got up to go to the bathroom, he became disoriented and fell into their stationary bicycle. He broke seven ribs and punctured a lung. Despite my mother's absolute commitment to keeping him at home, she finally had no choice. He had to go into skilled nursing care.

A few weeks later she was at his side when he started experiencing chest pains. They were both fairly certain he was having a heart attack. Mom asked what he wanted to do. He said, "Don't do anything. I'm ready to die." She was holding his hand when the minister walked in. He took one look at Dad and said, "Madelyn, you have to do something! You can't let this poor man lie here and suffer. Let them call an ambulance so they can at least control the pain and keep him comfortable!"

They did give my father pain medication. They also inserted an IV and gave him oxygen, which allowed him to live for two more miserably long, excruciatingly painful months. Although the intentions were good, the outcome was not.

As a person of faith, I don't always view death as a tragic event. If we truly believe that life is eternal and that our soul lives on, why do we so frequently torture our loved ones by making them live on in a body that is worn out and riddled with pain?

Panic is incredibly powerful; and the decisions we make in the middle of a life-threatening event are not always based on reason. Even when everyone is prepared for death and believes it will come as a welcome relief, it is easy for emotions and fear to take over. In order to prevent unwanted treatment and stay in control of how we want to die, we must become very proactive in making our own choices, and then we have to put them in writing. There are three documents that can help you control how your health care will be managed during the final stages of your life. They are:

An Advance Directive - States your wishes about tube feeding and life support

Health Care Representative - Appoints individuals (usually one or more family members) who are obligated to follow your stated wishes and coordinate your medical care

POLST Form (Physician Orders for Life Sustaining Treatment) - Bright pink form that should be placed on the refrigerator includes your wishes about cardiopulmonary Resuscitation (CPR); lists your choices about medical interventions, including the use of IV fluids, intubation, advanced airway interventions, and receiving intensive care; also includes your choices about receiving antibiotics and artificially administered nutrition.

Talk to an elder law attorney and to your physician about getting these documents completed. Talk to your minister and to your family about how you want them to respond in a moment of crisis. Make sure all caretakers know your wishes. (Doing this when you are healthy is the ideal time to get started, as there is a lot less emotion attached to a "what if" scenario.)

If someone you love is living in a long-term care facility, have a conversation with the administrator and ask about their policy regarding emergencies.

I recently spoke at Prestige Care in Visalia, California and was impressed with their system for handling emergencies. They have 911 Emergency packets for each resident that contain the person's end-of-life orders. The staff is instructed to pull that file when they dial 911. They give a copy of the Advance Directive and POLST Form to the EMt's as they walk through the door. They give another copy to the EMT's as they are leaving with instructions to hand it to the staff at the hospital upon arrival. They also call the hospital when the patient is in route to let them know he/she will be arriving with these documents.

It is never easy to face our own mortality or to talk with loved ones about how they want things handled in the event of their incapacity or death. However, making these decisions ahead of time is actually one of the most generous things we will ever do for our spouses and our children.

There are two excellent books that can help you prepare. "My Mother, Your Mother" by Dennis McCullough M.D. explains the concept of slow medicine. A Gerontologist, Dr. McCullough offers insights into the physiology of the aging body, and he outlines a compassionate way of caring for elders and helping them maintain their dignity as their bodies decline.

"A Better Way of Dying" by Jeanne Fitzpatrick M.D. and Eileen M. Fizpatrick, J.D. helps people prepare for a compassionate death. The two women are sisters. One is a physician, the other is an attorney, and their combined knowledge about medicine and the law is a tremendous resource for teaching people how to control end-of-life care.

It is often said that life is a journey. It is so true. God gave us free will; and we understand that gift allows us to make a thousand choices every day about the food we eat, the work we do, the people we love, and how we spend our time and money. It also gives us the ability to choose how our health care will be managed at the end of our journey.

Having the discussions and getting all of the documents in order takes some effort, but it is one of the most generous things we will ever do for our loved ones. At the end of my own life I hope my family will be with me and that they will be comforted knowing that they have followed my wishes and have allowed me to die peacefully and with dignity. I hope they will know that I love them, and as the physical part of my life ends, I hope they will believe, as I do, that my soul has just begun another exciting journey.

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