COMMUNICATION AT THE END-TIME

 When it is learned that a loved one is facing death, family and friends may have anxiety about how to respond to the reality of approaching death.  The loss of a person who has been a vital part of one's life seems inconceivable and even devastating.  Heartfelt,  meaningful communication at the end time can ease the pain of the coming separation and leave beautiful memories.  Pain is bearable when love is shared.

Volunteers in hospice and palliative care frequently find patients and families with mixed emotions.  The anxiety may be unspoken but palpable.  At such a time, nothing matters so much as the fact that we need each other, that we care, and are free to communicate that caring.  Sharing makes coping with dying bearable.  Patients need openness and honesty in the face of death, for openness is the basis for sharing. A shared awareness of our common mortality puts everyone on an even playing field.  We are all terminal; it is just a matter of time for each of us.  That is our reality, our shared fate.

There may be an unspoken understanding that the patient is facing death even though it may not be directly stated, or there may be denial by persons close to the patient who feel dependent and have strong emotional ties to the patient.  Denial from well wishers can add to the dismay.  Contributing to the patient’s discomfort are the frequent get-well cards from friends or family, expressing hope for a speedy recovery, even though recovery is not expected. The element of denial leaves the patient knowing that the sender meant well, but is unable to share fully how it feels to be at the end time.                                       

The patient who is facing death needs support as never before.  Acceptance of the impending death by a loved one need not imply rejection.  Rather, frankness creates an opportunity for sharing at the end-time. Tears are healing, for they dissolve the barriers that separate us.  Honesty helps, for deep down, the patient usually knows when death is imminent.  When that knowledge is shared, it makes the pain of separation more endurable.

Elizabeth Kubler-Ross stresses an important concept regarding how we should view the one who is dying.  She insists that the dying person is not diminished and should not be seen that way.  Though the physical and cognitive aspects of the person may diminish as death approaches, it is the spiritual and emotional dimensions that become foremost.  That recognition enables us to see the person as still whole.  This understanding allows communication to be on the level,--  heart to heart-- as equals. 

To be with patients at the end-time is a special gift for the volunteer, the family of the patient, and the patient.  Emily Dickinson said, "That it will never come again, is what makes life so sweet."  Sometimes in our being with the dying, we can find ourselves concentrating so much of life into so little time.  Recounting “the way we were” helps to give meaning to life's story.  While we are well and busy with the activities of life, we often think of little else, but when we are confronted with the prospect of limited time, meaning in life becomes the single most important issue.  At the end time, the meanings in life are seen as spiritual and emotional,-- the joy, the pain, the gains, the losses, the gift of love shared and perhaps some unfinished business.  The volunteer’s listening ear at such a time is a gift to the one who is dying, and to the listener.  The dying can help us to find a spiritual perspective in our own life. What we learn from the dying can profoundly affect the way we think and live.

By drawing out memories and recalling the scenes of life, the patient is enabled to see life from the perspective of bidding goodbye to the struggles, the beauty and the pain.  The memories will have elements of both joy and sorrow.  But they do need to be shared.  The song, Among My Souvenirs, describes some of the emotions, "There's nothing left for me, Of days that used to be, I live in memory among my souvenirs, --They do their best to give me consolation."  Harry Von Bommel tells us that we should, "Help create memories, using humor and creativity--. These memories will serve people well as they go through the process of living fully until death.  For families, these will be an anchor of love as they go through their grieving process."

The gift of the listening ear will draw out memories.  Vincent Van Gogh said that, "A person who can remember what he has seen can never be lonely or without food for thought."  It is in the telling of the story to an intent listener that the story becomes more real and meaningful.  Our being completely non-judgmental, in listening, makes for freedom in the telling.  .

Walter had been in the tank corps in WW2.  The campaign through France and Germany had been an ordeal, but what he loved to tell about was his stay in Holland after the liberation.  The Dutch people were very appreciative and kind to the Canadians, for they had played a large role in their liberation.  It was the Dutch girls that he loved to talk about.  His eyes really lit up when he spoke of them.  And they, as he described them, were just as enthusiastic about the Canadian soldiers.  We both knew that it would not have been appropriate for him to share his fond memories of the Dutch girls with his family or the nurses.  But I was a safe listener, and it was meaningful for Walter to be able to tell me the stories of his adventures from long ago.  The listening ear validates who the person was and still is.  By my listening to the accounts of his amours, he was affirmed and he maintained his sexual identity.  And we all know that the awareness of sexuality remains until death.  The volunteer will hear stories from life that may not have been told to anyone else, simply because the patient feels comfortable in the telling the story to a safe listener.

 When the volunteer has become familiar with the patient's favorite memories and pastimes, he can then add to such memories by taking the patient on a word-picture journey.  Often the patient has become bored to death, just looking at the four walls of the room, and fed up with everyone being preoccupied with his illness.  Anyone who has been hospitalized for any length of time knows exactly how that feels.  A word-picture journey can take the patient to another time and place, to where there is happiness, the sun is shining, the scenery is familiar, and loved ones, though long gone, are present, and there is peace.  By venturing into the patient’s land of memories, even back into childhood, the volunteer may discover an access to more skill and imagination than ever before dreamed of.  And the patient will love it!  It doesn't need to be a monologue.  It can be a dialogue, for the patient can help to fill in the details.  Not everyone who is close to the patient feels that free, but the volunteer can encourage family members to take such journeys.  It is in the observing and describing the details, the sights, the sounds and the smells, that makes the journey so completely absorbing and satisfying.  Those mental pictures will remain with the patient long after the volunteer has left.  The pictures, the faces and the scenes will help to fill the lonely hours with meaning, and the sharing will be the source of beautiful memories that might have been forgotten.  And good memories do have a way of easing pain.

Bill was the first patient I went together with on word-picture journeys.  He had loved to go fishing in his boat on the Rideau Canal, so that was where our minds would take us.  He had a boat-house that he had kept locked, so he took his key and opened the door.  We didn't need to start the motor, for I was there and the boat had a set of oars.  There were ducks on the water, squawking and diving.  The fish were jumping and Bill was expert at casting where they were.  He always caught fish and the struggle bringing them in was exciting.  When asking him how big they were, I would caution him not to exaggerate.  That word-picture interlude would provide him with a break from the cancer that he knew would eventually  take him.  It was not only “going fishing” with Bill that was meaningful, it was also in the sharing.

My wife, June, has told me of a patient who was fortunate to have a son and daughter who would take their Mother on word-picture journeys as she listened and participated. The son would take Mother to a vacation cottage.  They would observe the details of the winding lane, and how they had to drive carefully. After looking the cottage over, inside and out, they would go out on the dock where the boat was tied up. There was so much to see and hear and smell.  Then the daughter would take her Mother to her former apartment.  After opening the door, what first caught their attention was a whatnot stand, in the hallway,  that Mother had loved.  "Mother, did you ever notice how detailed the figures are?" the daughter would ask, and they would admire the stand.  Then they would look at the pictures of loved ones and explore memories.  Such a journey and revisiting life's scenes can help the patient to gradually bid farewell to life as it was, a life that can never be duplicated or lived through again.

Each individual has a life story that is unique, his own and personal.  Dr. Viktor Frankl, in his book, The Doctor and the Soul, tells us that, "The drama and the tragedy of a man's inner life never has enfolded in vain, even when played out in secret, unrecorded, uncelebrated by any novelist.  The 'novel,' which each individual has lived, remains an incomparably greater composition than any that has ever been written down."  So, I urge you, YOU who desire meaningful and appropriate communication with persons who are dying, to realize and to recognize that you will have the privilege to hear about, and to validate thereby, a unique human experience, truly, “a once-in-a-lifetime” story.

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