by Phyllis Kennemer
“When I helped found the Conversation Project, I thought we were doing this for people who were dying. … What I have learned is that the conversation is also a legacy. This is the gift, maybe the last gift, we can give one another.” Ellen Goodman, New York Times blog, July 1, 2015
Ellen Goodman, one of the founders of The Conversation Project, expresses regrets about the ways in which both of her parents died. Her dad died of cancer at the age of 57, but those around him did not acknowledge the truth of his dying, which prevented them from having any meaningful communication with him about his wishes. Goodman’s mother lived to the age of 92, but she suffered from dementia in her later years and was unable to make any type of decisions for herself.
The Conversation Project encourages all adults (those 18 years of age and older) to talk with loved ones about their values and preferences in the event end-of-life decisions need to be made by others.
We all know that death is inevitable; that it is part of the life-cycle, but we stay in a state of denial most of the time. When we do think about our own deaths, many of us envision dying peacefully in our sleep at about the age of 105, having kept our full physical and mental capacities until that very moment. The truth is — it seldom happens that way.
Problems arise when a person is in a medical condition that prevents him from expressing his desires for continued treatment or end of treatment. A myriad of decisions need to be made by loved ones at that time. Our most persistent question is, “What would this person want?” We remember times when the person said something like, “I wouldn’t want to live that way,” when media stories highlight a fight between contesting relatives over whether or not to “pull the plug” on someone in a vegetative state. Oral remarks made years ago — or even yesterday — have no legal bearing. If you block a health provider from performing CPR, you could be legally liable for that person’s death. If the person has not prepared and signed Advance Directives documents, medical providers have an obligation to sustain life..
Facing the death of a loved one is never easy, but the pain can be lessened if we feel like we are fulfilling that person’s wishes. My family learned from sad experience what it is like to make these difficult decisions when there are no Advance Directives. When my brother entered the hospital unexpectedly, we had no written directives, so he spent the last three weeks of his life in an ICU unit hooked up to all the tubes that kept him alive as the organs in his body shut down, one-by-one.
Services are available to help with beginning the conversation and completing the necessary forms. Both the Aspen Club sponsored by University of Colorado Health and the Seasons Club, a part of McKee Medical Center, offer classes and individual counseling in preparing advance directives and specifying end of life wishes. They have packets of materials with suggested questions for the conversation and the appropriate legal documents to fill out. They also provide a Patient Passport which contains emergency directions. It comes in a plastic cover with a magnet on the back. The person completes the form noting medical history and medications, emergency contacts, and the location of advance directives documents. EMTs know to look for this packet on the side of the refrigerator.
The conversation can be held more than once. As the person lives longer, preferences and conditions may change. The amount of detail in the conversation will depend on the individual person. Some people may limit their sharing simply to legal documents. Others may choose to go into greater detail. When my mother was placed in hospice care, she not only specified a mortuary (her burial site next to my dad was never in question), but she told us the dress she wanted to be buried in, quoted the Bible verses she wanted to be read and listed the songs she wanted sung at her funeral. It was one of the loveliest services I’ve ever attended. We truly felt her presence in fulfilling her wishes.
We need to be aware that end of life decisions are seldom clear-cut. Doctors and medical personnel cannot make these decisions for us. They will assess the patient’s condition, explain what would be necessary to keep the person alive and try to help us understand ways in which the person’s life will be different if he survives. Sometimes we have to consider quality of life. What if the person’s life can be saved, but it will not be an active, vibrant life? What if the person will never be able to return home? What if brain damage would cause a drastic change in personality? What if she will be unable to breathe on her own again? What if the person is in a vegetative state?
People who feel uncomfortable about beginning the conversation — or who have relatives who are not ready for the discussion yet — may want to start the experience with like-minded strangers or acquaintances in the relaxed atmosphere of Death Cafes. These meetings, sponsored by the Impermanence Society, offer opportunities to discuss not only last wishes, but the subject of death in a broader context. People gather in living rooms or coffee shops to share tea and cake or coffee and cookies and talk about topics related to death and dying. Once participants have sorted out some of their own feelings, they may be more ready to write things down and meet with family members. Death Cafes started in England and they are spreading throughout the world. Local meetings and locations can be found through internet searches.
All of us need to give serious thought to our preferences for the end of life experience and then have The Conversation with our loved ones.
Legal documents that allow doctors and loved ones to make health care decisions when you are unable to make these decisions for yourself.
Directs the doctor to stop all efforts to keep you alive if there is no hope of recovery and you are not able to make your own decisions.
Medical Durable Power of Attorney
Designates a person to make medical decisions when you are unable to make them yourself.
CPR (Cardio Pulmonary Resuscitation)
A document signed by you and your doctor telling medical personnel to not do anything to restore your breathing or heart beat.
Medical Proxies (Substitute Decision Makers)
Designated family members or close friends who make decisions if you cannot make decisions for yourself and you do not have signed advance directives.
A court-appointed designee to make decisions if you are unable to speak for yourself.