By Christopher Kerr, M.D., Ph.D.
In many ways, the end-of-life journey is a culmination of an integrative process that distills life into its finest moments. It is about revisiting and rewriting the life scripts we have been handed, whether by chance or by design. That said, the voices and experiences of dying patients matter.
Dying is more than the suffering we either observe or experience. Within the obvious tragedy of dying are unseen processes that hold meaning. Dying is a time of transition that triggers a transformation of perspective and perception.
If those who are dying struggle to find words to capture their inner experiences, it is not because language fails them but because it falls short of the sense of awe and wonder that overcomes them. They experience a growing sense of connectedness and belonging. They begin to see not with their eyes but with their unlocked souls.
What it all means is that the best parts of living are never truly lost. I am reminded of this when elderly patients experience the return of the mother or father they lost in childhood; when soldiers speak of haunting battles; when children talk of dead animals returning to comfort them; and when women cradle babies long lost to their touch. This is when caution vanishes and courage prevails.
What matters is not so much what is seen but what is felt.
As poets and writers have reminded us throughout history, love endures. When the end draws near, time, age, and debility vanish to give way to an incredible affirmation of life. Dying is an experience that pulls us together by binding us to those who loved us from the start, those we lost along the way, and those who are returned to us in the end.
In the words of Thomas Jefferson, “I find that as I grow older, I love those most, whom I loved first.” The dying most often embark on a hopeful journey in which they are embraced one more time by those who once gave their lives meaning, while those who hurt them drift away. Death is also a form of final justice, one in which the scales are balanced by love and forgiveness.
Having witnessed so much death as a hospice doctor, I can’t say that I fully embrace the notion of a “good” death. There is no such thing as a good death, only good people. Death and dying are merely extensions of what came before; we die as we lived. This cannot always be reconciled with happiness or goodness, particularly if the balance of one’s life had little to do with either.
Despite the tragedy, being a hospice doctor is uplifting.
Although I am often saddened by the tragedy and trauma that so many have endured, I remain amazed by the strength of the human spirit in its endless quest to heal what’s harmed or broken. For those denied fulfillment and happiness in life, it may be in that struggle that hope and grace reside.
Dying may be isolating and even lonely, but patients often find comfort in spaces where they can continue to express themselves, connect with others, and still matter. Long after the battle to overcome illness is lost, the dying continue to fight, but they are not fighting against, only for and toward. They fight to have relevance, to find meaning—right up until their very last breath.
Why else would people, bedridden and fading, find it in themselves to share their stories? Not the embellished versions we typically tell, but the real stuff that comes from having lived and mattered—from hard-felt pains, deep secrets, and distant losses to enduring love and wisdom regained. These moments, measured in days and hours, are not motivated by the possibility of future gain. They constitute a wished-for and self-generated ending.
Illness and tragedy naturally demand that we look inward, an artifact of our fight for survival and our innate resistance against mortality. As sickness begins to overtake the drive to live, there is a shift. The dying continue to cherish life, but not for themselves—for others. They express concern for loved ones, in gestures of kindness and hope, even as they say goodbye. Buried within their stories is the same awe-inspiring message, repeated again and again.
During the end of life, people have faith that their voices, softened or at times silent, mattered. And that they would still be heard.
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