By the time someone comes to us, they have lived their entire lives; we come in at the very end and only get a snapshot. We hear a lifetime of stories condensed into a short amount of time, like the Cliff notes of a life. We may feel as if we’ve known them intimately for a long time. We take the bits and pieces that they generously share with us and using our imagination we create a tableau of the patient and family—the landscape of a life lived.
The telling of these stories are often an essential element of the dying experience. “Remember on this one thing, said Badger. The stories people tell have a way of taking care of them. If stories come to you, care for them. And learn to give them away where they are needed. Sometimes a person needs a story more than food to stay alive. That is why we put these stories in each other's memories. This is how people care for themselves. ” from Barry Lopez’s children’s book Crow and Weasel. And for seriously ill and dying folks, literally food can be of less importance than the stories they hold.
Because of the way a couple is holding hands as those last breaths are taken, we assume the 70+ years together were full of so much love, without a moment of struggle, arguments, betrayals or disappointments. Often times we leave thinking, “I want a love like that”, and “when I die, I want someone at my bedside who will have loved me that much, and will miss me that much”. It becomes quite easy to create a life they may or may not have ever lived, simply with the glimpses we are given. We are humbled by how much we actually don’t know about them.
Our understanding of people can be immediate and intimate, but it can also be influenced by the circumstances, their sickness, stress, our own biases and transference and the untamed wildness of our own imaginations. In the short time we have together, we must quickly build mutual trust and respect. And as Carl Rogers has said, holding people with unconditional positive regard and accepting and respecting others as they are without judgment or evaluation is an essential element of all healing professions.
This is one of the main tasks of all hospice workers—to approach patients with objective empathy and compassion, without pitying, romanticizing or judging. Being present for and receiving a life story is one of the great gifts of this work. We often call this active listening but it is really another example of relationship-centered care. We are not passive receivers because we have a part, large or small, in creating the end of life experience for this patient and family. Simply sitting silently in a room with a dying person is an intimate relational act.
We took an oath to not pass judgment, to not refuse to care for someone because of choices they made and things they’ve done, despite how dark their past might have been. When we start to care for someone, those secrets may be shared with us, or we may only have a sliver of a story to give us a window into the person’s life. At the end of the day, that doesn’t matter to us, because we have learned to have respect for every human life when they are dying-- all humans should be cared for kindly regardless of their past personal history. That is a right everyone should possess.
But often our snapshots do contain rich and helpful stories. Human beings are interesting, especially when there are dynamics within the family and people have stopped talking to each another, perhaps for something that happened many years ago. And when we are alone with a family member or significant other, they may share something hurtful or awful the patient has said or done.We try to remind them that at this moment, if they are receptive to our suggestion, they have an opportunity to find a way to come together to provide comfort and support to the person lying in the bed—perhaps even forgive and comfort despite a difficult and hurtful past.
Human beings can be lovely and beautiful, and cruel and selfish. We are all only human with our imperfections and our emotions, and feelings have a tendency to get the best of us. However, one opportunity at end of life is the possibility for reconciliation of long held challenging relationship issues and emotions. Grudges, hatred, slights, regrets as well as expressions of love long withheld are so often heard in these stories we witness—and often in the telling and facilitating of communication among family members we witness the transformation of the suffering from long held painful patterns into a more peaceful and graceful state. Not necessarily a perfect or “good death” but perhaps a better one. This often allows for a death that is not necessarily without grief, but is experienced with more peace and less anguish. This doesn’t always happen but often does.
A terminal diagnosis removes the luxury of time, which reminds us of things we didn’t say or do, or wishing we had let something go. We often see people wishing desperately that they had let go of their grudge or anger. A husband recently said, “I took advantage of the time we had together, I always thought we would have more time”. He and his wife did have a wonderful love, but it was shorter than they had hoped and both wished they made more of the time they had together. We can all learn from that.
In these “snapshots” we may see much about a person’s essential nature and unique core qualities and we can experience their “nectar”, the concentrated essence of the person in their wholeness. When we are witnesses with presence and clarity (when our own lens is not clouded by judgment and bias) these snapshots and stories become gifts to us and create opportunities for healing and the experience of a more peaceful dying. Mostly we feel lucky to be able to do this work.
This was a collaboration between myself and Dr. Gary Pasternak, an incredible doctor, my mentor and my friend.
xo
Gabby
