Conscious Choice: What the Dying Teach Us

October 2000

What the Dying Teach Us

by Jim Perry

"Life is eternal; and love is immortal; and death is only a horizon; and a horizon is nothing save the limit of our sight." — R.W. Raymond

I hadn’t seen Richard in over a month, not since his last hospital stay. This once-robust, always brilliant young man sat huddled on the corner of his sofa, wrapped in a plaid comforter to stave off a chill he couldn’t seem to relieve. His eyes trailed off to a corner of the room as his mother graciously poured me a glass of iced tea. "He seems stronger today," she said as if to assure herself. I smiled in agreement, yet I thought to myself how weak he looked. I wondered, silently, how long it would be before cancer took him from us.

As if aware of my thoughts, he turned quickly toward me and said "I’m going home. We’re leaving soon." He paused for a moment, stared intensely at me and added "Do I know you?" Just as quickly his eyes returned to the corner of the room. It was as if he didn’t even recognize us. His mom, clearly frustrated, said "You are home sweetheart. It’s okay." She looked at me and said in a whisper "He seems to get this way in the afternoon." I assumed the cancer had begun to affect his mind.

I struggled with what to say next. He barely noticed as I got up to leave. Within a week, he died.

What I had missed on that summer afternoon was Richard’s attempts to tell me that he knew he was dying and that his death was imminent. I had readily dismissed his comments as some form of delusion or simple disorientation and failed to see the obvious metaphor in his brief comment. I had lost out on my opportunity to share in the courageous way he approached his last weeks, and in the special way he used to communicate to us what he was experiencing.

Now, when I think of the things he had to teach me — the things the dying have to teach us all — there are three that stand out.

They teach us how important it is to listen

At the time of my friend’s death, I had just begun a new job directing a small non-profit hospice program. A hospice, I came to learn, was not necessarily a place of care, but a philosophy of care — one that emphasized quality, not quantity, of life. Over the subsequent weeks and months, I had a chance to work with the dedicated nurses, social workers, and others who cared for our terminally ill patients. As I learned about the patients under our care, I learned that my experience with Richard was not unusual.

What I came to understand was that the dying often communicate in ways we are not used to perceiving — through obscure behavior, symbolic gestures, or unexpected words that seem out of sync with time. It is as if they try to describe being in two places at once — both this world and the next. Just as his mother and I had dismissed Richard’s "I’m going home" statement, the communication of one who is dying is easily dismissed as confusion or hallucination and is many times explained away as the result of either too much or too little medication.

The professional caregivers I worked with listened to the dying in a way that assured the patient that they understood and accepted what the patient was attempting to share. This simple acknowledgment seemed to make it easier for the patient to be less anxious about what they were experiencing. Over time I also learned that these experiences are not exclusive to hospice patients or to those who are terminally ill. Even the communication of those who may die quickly can offer insight into their dying — and our own.

Hospice nurses Patricia Kelley and Maggie Callanan authored a book in 1992 entitled Final Gifts, in which they coined the phrase "nearing death awareness" to describe the dying person’s knowledge of what is happening to them. They suggest that the messages offered to us by those who are dying fall into one of two categories: 1) attempts to describe the experience of dying; and 2) requests for something they need for a peaceful death.

When I spoke with Richard’s mother several months after the funeral, she recounted how in the first few days following my visit, Richard seemed to become preoccupied with making sure all of his clothes were cleaned and pressed. He kept saying that he didn’t want to pack dirty clothes. The family became quite frustrated with Richard’s frequent demands and requested that the dose of his medication be increased to help calm him down. Richard’s family didn’t understand at the time that he was trying to prepare for a journey — a fairly common theme among those who are approaching death. He was also using images from his life experiences — he traveled frequently for work and was very particular about how he packed. It is no surprise he framed some of his final communications in that way.

For the dying to communicate with someone already dead is also very common. The dying often interact with parents, friends, or relatives already dead or beings invisible to others, like saints or angels. In those cases it is important not to let our own fear, grief, or frustration rob the dying of their experience. Instead of contradicting their observation, like saying "Dad, you know you can’t possibly be seeing Aunt Edith, she’s been dead for years," gently try to let them know it is okay to talk to you about the experience. It is not necessary to humor them or say that you see what they do. Simply let them tell you what they need to share.

It is also helpful to listen for requests for something a dying person needs for a peaceful death. Most often you may hear a spoken desire to reconcile some personal, spiritual, or moral relationships. Countless times, during meetings of our hospice care team, I would hear that a patient’s physical condition had deteriorated to such an extent that there was no medical explanation why the patient was still alive. I remember one woman who had lived weeks beyond what her medical condition indicated. For months she had been asking, "Where’s Becky?" It wasn’t until after her granddaughter Becky had flown in from California and spent a quiet afternoon with her, that she was ready to let go and die.

They teach us to face our fear of death

In Julius Caesar, William Shakespeare wrote "Of all the wonders that I yet have heard, it seems to me most strange that men should fear; seeing that death, a necessary end, will come when it will come." Fear of death, Shakespeare knew, is almost intrinsic to human nature. Our current cultural obsession with youth, beauty, and medical technology enshrines that fear by allowing us to delay — or attempt to delay — our participation in the natural cycle from birth to death. Because the dying offer us constant evidence of that cycle and they compel us to confront the issue of our own mortality, many of us avoid them. But when we move into acceptance of that cycle, we begin to confront and dissolve our fears.

When we train hospice volunteers to work with the dying, we ask them to come to terms with their own death. In one common training exercise, trainees draw a time line to depict their life. They are asked to place one mark on the time line where they believe themselves to be on that continuum. Then they speculate how old they would be when they died. When they place that age at the end of the time line, many find that they had underestimated their place on the time line. The exercise illustrates that many of us think about death as being far away.

The fear of death begins with fear of dying — fear of pain, fear of losing control, fear of being weak or powerless, even fear of failing. But for many, it is followed by the fear of what happens after the actual moment of death. Regardless of our religious beliefs or spiritual heritage, we want to know that there is something after death.

Here, the dying offer reassurance. In the final moments before death occurs, many people seem to indicate that they see where they are going. "It’s so beautiful." "The light is up ahead, it’s okay." "It’s so peaceful." While we will not know with certainty what happens after we die until we do it ourselves, those moments seem to offer comfort and reassurance to the person dying — and peace of mind for the rest of us, who will make our journey at another time.

They teach us to live life fully for as long as life lasts

Countless books and movies seek to portray the last, heroic moments of someone’s life. Movies like Steel Magnolias and Terms of Endearment attempt to show us that dying is a part of the precious gift of life. Even the popularity of Mitch Albom’s book Tuesdays with Morrie illustrates how, as our society ages, we yearn for models to teach us how to live until we die.

I’m not suggesting we adopt some romanticized Hollywood fantasy about what it is like to die. When real people face death, it is not uncommon for their courage to dwindle and their faith to become an abstraction. Yet I do believe that if we pay attention to the choices a dying person makes and the observations he or she shares, we can discover what we ourselves hold to be most dear. If nothing else, the dying demonstrate that each new day offers the opportunity to be mindful of our surroundings, our relationships, and our response to all that life brings us.

When I think back to my friend Richard and to all those close to me who have died since then, I realize that there is still much for me to learn from the dying. I also realize that they are still teaching me. I begin to understand Morrie Schwartz, who said, "Death ends a life, not a relationship." The memory of each hospice patient I’ve met, and the way in which each one approached the moment of death, still lives in my heart. I am grateful for their gifts.

Resources

The National Hospice & Palliative Care Organization, 703-837-1500, www.nho.org

Final Gifts: Understanding the Special Awareness, Needs & Communications of the Dying, by Maggie Callanan & Patricia Kelley, New York: Poseidon Press, 1992

Tuesdays with Morrie, by Mitch Albom, New York: Doubleday, 1997

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