Honor Their Wishes: Dying People—Like All People—Need Respect and Support
“Dying is not a medical event.” —Ira Byock, M.D.
By Cat Saunders
Some people think it’s impossible to communicate with someone who’s in a coma or has dementia. Some people believe that when dying people can no longer speak or write or open their eyes, or when they’re “in another world,” this means they can’t communicate their needs.
In my experience, it’s definitely possible to communicate with people who are no longer able to do so in conventional ways. Of course, it helps to have training in this work. However, an open heart and a willingness to “find a bridge” can go a long way toward making it happen.
If you go to a foreign country, do you expect the people there to speak your language? I doubt it. You probably know that the best way to communicate with people in another country is to use their native tongue.
It’s the same with people who are dying. When you visit a loved one who is dying, imagine that you’ve arrived in a foreign country. It’s not helpful to expect the dying person to relate to you on your terms. Instead, consider yourself a visitor to a foreign land. Find a way to bridge to the dying person’s world instead.
At the end of September 2004, the 92-year-old mother (Anita) of my longtime friend, Leanne, died a gentle death with the help of hospice (real names used with permission). Anita had gradually become increasingly debilitated over the years. She had suffered a mastectomy, several strokes, blindness, and other physical challenges. At some point, she decided she was ready to die and did not wish further medical interventions. She also stipulated verbally and in writing that she did not want to be hospitalized again.
Anita had done everything right in the death-planning department. She had prepared and regularly updated her will and her Advance Directive for Health Care. She had also joined People’s Memorial Association (PMA) to handle the disposition of her body in the simplest and most inexpensive way.
In addition, Anita had completed the necessary legal documents to name Leanne as her Durable Power of Attorney (DPOA) for finances and health care. In addition, she had notified her family, her doctor, and the nursing home (where she lived) of her request not to be put on life support. She had clearly stipulated that she did not wish to be subjected to any extreme measures to extend her life.
Despite this thorough preparation, Anita’s peaceful death was almost derailed by the fears of those around her. A week before Anita’s death, Leanne called me. She was upset because she had “caved” in the face of a distraught nurse and a disrespectful doctor who had pressured Leanne into hospitalizing Anita despite her written directives.
At first, Leanne asked me to intervene spiritually to figure out what to do next. I preferred to visit Anita in person instead. I wanted to ask Anita directly what she wanted, and I wanted to do it in a way Leanne could witness herself. I’d done this work before with others, most recently with my own father before his death. So I felt that the direct approach would be best. Leanne agreed.
We arrived at Virginia Mason a little before ten that night. The nurse on duty recognized me and asked if I’d been there recently. It turned out she’d been on duty the night my father was hospitalized there with a broken neck a few months before. That particular nurse had extensive hospice experience, which was welcome support for my work with Anita.
It took about two hours for me to help Anita communicate her wishes. In her case, I found that she could communicate by moving her left leg to say “yes” to my carefully worded questions. Together Anita and I established that if she did not move her left leg, her answer was “no.”
Through this process, Leanne was able to see for certain that Anita wanted life support removed so she could die. Anita was also able to convey a clear “yes” when I asked if she’d be willing to forgive Leanne for hospitalizing her against her will.
Eventually, Leanne felt satisfied that I’d covered all the bases with Anita. At that point, we asked the nurse to remove life support. The nurse then initiated palliative care to relieve Anita’s pain and ease the dying process. It was sweet solace for Leanne to see every trace of anger disappear from Anita’s face as soon as life support was removed.
Before Leanne and I left at midnight, we arranged to have Anita transported back to her own bed at her nursing home. One week later, on September 27th, Leanne was present when her mother died peacefully that afternoon.
This article was originally published by Evergreen Monthly (November 2004) and updated in June 2017.
To learn more about how to communicate with and care for people in comas or other nonverbal states of consciousness, please see Amy Mindell’s book, Coma: A Healing Journey (available at www.aamindell.net).
Cat Saunders, Ph.D., is a counselor in private practice in Seattle, Washington. She is also the author of Dr. Cat’s Helping Handbook: A Compassionate Guide for Being Human (available through Amazon). Contact Cat by emailing her or by calling 206-329-0125 (24-hour voicemail).