By: Paul Malley, Aging with Dignity’s President
Few things touch my heart more than someone describing a personal experience of caring for a loved one in the last days of his or her life. I consider it a great gift when people share these experiences with me.
Carrying out the mission of Aging with Dignity has given me the opportunity to speak with thousands of people about advance care planning. Their stories have a common theme: the end of life is an intensely personal, emotional, and spiritual experience for everyone – the person who is dying, their caregivers, family members and other loved ones.
While speaking at a conference in New England recently, I had the great privilege of meeting Mary. She told me about the remarkable last days of her husband, Bob, who had died the year before after a serious stroke left him in a coma. A few months before his stroke, Bob filled out an advance directive called “Five Wishes,” which spoke for him and helped guide his care when he could no longer make his own decisions.
Through Five Wishes, Bob told his family and the doctors that he did not want to be kept alive artificially through life support treatment – so Mary and her sons did not have to guess when they were called on to make that decision. He described the kind of environment that he wanted to be in – music playing, people praying for him, his favorite scripture verses read aloud, clergy visiting, and his loved ones surrounding him. During his 28-day coma, his Five Wishes was kept at his bedside, and his doctors, nurses and family referred to it constantly.
“It was so helpful to know the little things that would make him comfortable,” Mary said. From the smallest requests to making medical decisions on his behalf, his family had the peace of mind that they were fulfilling Bob’s wishes to the letter.
One of Bob’s wishes was that members of his family “make peace with each other if possible.” After seeing this in writing, Bob’s two sons, estranged from each other for five years, reconciled and continue to be close friends today. Through tears, Mary told me how grateful she was to her husband for making his wishes known. Bob died with great dignity and his instructions to his family brought peace and healing at the time of his death.
When I speak about advance care planning I often ask people: “If you were very sick and near the end of your life, what would be most important to you? Regardless of the type of group – seniors, baby boomers, college students, health care providers, attorneys, employees, grandparents, parents, or adult children – these are the response I hear most often:
- To be surrounded by family and loved ones
- To be in their own home, if possible
- To avoid pain
- To have people praying for or with them
- To express love and forgiveness to others
- To receive love and forgiveness in return
These responses make it clear why the Five Wishes approach to advance care planning has proven so popular and effective. When making plans in case of a serious illness, people consistently say they want to talk about these personal and spiritual issues. That is why the Five Wishes document puts these issues, along with important considerations regarding life support treatment and the appointment of a health care agent, into one easy-to-use document.
Modern science has produced wonderful, life-sustaining advancements in medical technology. Yet, for many people, science has artificially prolonged the dying process. Understandably, some people fear that they will become an object on a “healthcare conveyor belt.” More than 5 million Americans have turned to Five Wishes to make sure their preference are known and respected. In addition to individuals asking for the document for themselves and their family, more than 8,000 organizations (hospitals, hospices, places of worship, employers, physicians, attorneys, long term care facilities and others) distribute Five Wishes in all 50 states. These organizations see Five Wishes as a meaningful, effective and easy-to-understand approach to advance care planning.
Five Wishes allows adults of all ages to plan the care they want if a serious illness occurs. It helps people make clear their wishes about:
- Which person they want to make health care decisions for them when they can’t make decisions themselves
- The kind of medical treatment they want and don’t want
- How comfortable they want to be
- How they want people to treat them
- What they want their loved ones to know
Five Wishes makes it possible for people to put their wishes in their own words. An individual may, for example, specify how they define “life support treatment,” which can mean different things to different people, depending on beliefs and preferences. In addition to medical concerns, Five Wishes addresses personal, emotional and spiritual needs. Wishes three, four and five address matters of the heart and soul – love, forgiveness, comfort, relationships, and spirituality. All together this presents a wonderful opportunity to introduce spirituality and discussion of values.
After speaking to thousands of people and presenting Five Wishes to diverse groups across the country from New York to Honolulu in the past few years, it is clear to me that discussions about advance care planning must include more than just the medical issues. As advocates for dignified care at the end of life, we must continually ask the question: What is most important to you at the end of life? The responses consistently include matters of the heart and soul. Therefore, it makes sense for advance care planning – both the document and the conversation – to include these matters as well.