BY CHRIS CALKINS
SEPTEMBER 24, 2023 6:00 AM
For many years, my work as a health care administrator and teacher have intersected in meaningful ways. I have had the unique honor of being present at the end of life with several individuals, and stood with families in the moments before and after.
I started my health administration career in children’s hospitals; some of my first experiences with death and dying came with the young and their equally young families. Many who work in pediatric cancer have shared the experience of witnessing the shift when the cared-for child becomes the caregiver to their parents. They move into a place of deep acceptance and begin to focus outward to comfort those around them, including their nurses, physicians and other members of their care team. At the end, there is often an acknowledged silence when nothing else needs to be said. These are moments of deep sadness and profound grace.
In her 1969 book, “On Death and Dying,” Elisabeth Kubler-Ross wrote about the five stages of grief: denial, anger, bargaining, depression and acceptance. Before her own death, she completed a book in 2005 with David Kessler, “On Grief and Grieving.” These books, and my experience with death, have informed my teaching and my understanding of the weight of emotions in these moments.
One experience is particularly meaningful to me. When I was 8 months old my 2-year old brother, Michael, and I had pneumonia. Mikey died of croup and I survived. Fifty-three years later, I was diagnosed with cancer and called to share that news with my parents. My mother’s first words to me were, “I have already lost one child, I am not going to lose another.” In that moment, I realized that the arc of grief is never-ending and the impact on all future experiences is profound.
When I do resiliency work with medical students and young physicians, I recommend two approaches to dealing with the intense emotionality of doctoring. One is writing yourself a permission slip in the morning and putting it in your pocket. This is a concrete way to say to yourself, today I give myself permission to feel doubt, today I give myself permission to laugh, today I give myself permission to be angry at my situation. The second is to find a talisman to hold as an anchor, a worry stone they can put in the pocket of their lab coats. Whenever they are feeling overwhelmed, I ask them to reach in their pocket and hold their worry stone for a minute as a tangible place to put those worries as they continue to care for patients.
I have been changed by being present at the bedside and through the gift of teaching, I share these experiences as my colleagues and I prepare new leaders to enter the field. I also carry them with me when I engage with families facing serious illness.
Some lessons learned — first, I recommend always having someone with you during your health care visits who can listen with you and for you. The emotional weight of what you will hear as a patient might overwhelm your capacity to listen and make sense of what you are hearing. Having someone you trust who can listen for you and share what was said, when you are ready and able to hear it, is invaluable.
Second, make a ritual for yourself before and after your treatment(s), that grounds you. It is important to remind yourself, that you are you, not your illness. Your life, your memories, your lived experience, your friends, your family are who you are. Illness is the alien, it is an experience you are having, not who you are.
Finally, I recommend that you keep a journal to document your thoughts and emotions. Writing what you are feeling and thinking before and after treatment, for example, affords you the chance to read your emotions at a distance. When you know what to expect and can recognize those emotions, you can respond in a planned way instead of being overcome by them. Learning to navigate your emotions takes practice. Extend some grace to yourself as you would to anyone you love.
I believe that our most powerful emotion is not sorrow, grief or even love. It is empathy, to feel with the other. When you confront your own mortality, the other is you. In many ways, when you are ill, you become a stranger to yourself. Meeting that stranger with empathy brings recognition and acceptance. It also reflects from you to those who are grieving alongside you and confronting their own loss. They will be selfish, loving, scared, caring, angry, comforting, sad and joyous all within the space of a single conversation. Empathy is a learned skill. Practicing now prepares us for the inevitabilities of life.
Chris Calkins is a teacher and health care administrator. He has worked in children’s hospitals, academic medical centers and large health systems. He currently serves as the executive director of MHA programs at Penn State. This column is coordinated by www.learningtolivewhatsyourstory.org, whose mission is to create educational and conversational opportunities for meaningful intergenerational exchanges on loss, grief, growth and transformation.
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