Not to Be Forgotten

We have all lost loved ones. Although not forgotten, the departed can recede to the back of our minds unless prompted by a memory such as a photo, song, written note or countless other things personal to the relationship.

In the essay The Living are Defined by Whom They Have Lost (New York Times May 4, 1994) Anna Quindlen notes, “Grief remains one of the few things that has the power to silence us. It is a whisper in the world and a clamor within. More than sex, more than faith, even more than its usher death, grief is unspoken, publicly ignored except for those moments at the funeral that are over too quickly, or the conversations among the cognoscenti, those of us who recognize in one another a kindred chasm deep in the center of who we are.”

Reading Ms. Quindlen’s description of grief hit a note deep inside and reminds me of the importance to speak out and give voice to those who have passed but continue to shape our lives. She writes, “We are defined by whom we have lost,” and offers the example of a conversation with her brother’s wife Sherry, who is dying and will leave behind a husband and two young children.

“Don’t let them forget me,” Sherry says.

Ms. Quindlen replies, “Oh, hon, piece of cake.”

For me, on the 20^th anniversary of the founding of the Center for Communication in Medicine, Ms. Quindlen’s words have stirred memories of so many who encouraged and supported my work as a medical humanist.

I have not forgotten Pat Barr, my dear friend and co-founder of our organization. As a cancer patient, she personally understood the challenges of communication in the medical encounter. Pat persuaded the CEO of Southwestern Vermont Medical Center that the cancer center needed an advocate to help patients navigate the healthcare system. She volunteered me, a writer with no experience in healthcare but someone she knew who was a good listener, sensitive to the impact of language and recognized the “elephant in the room.” To my surprise I was hired. That step led me to create and fill the role of medical humanist. During the pilot program, I documented the patient’s perspective of illness for the cancer care team, which brought to light issues and concerns and served as a vehicle to improve doctor-patient communication. Pat died in 2003 but her goal of empowering patients to actively engage in decisions about care remains a force that drives my work.

I have not forgotten Dr. Jim Wallace, the first oncologist in Vermont, who came out of retirement to work at the Bennington cancer center. He understood that treating patients was more than the medicine prescribed. Dr. Wallace valued my medical humanist’s note because it provided information about the patient’s questions and concerns, which helped him to put in place a support team to address physical, emotional, spiritual and financial needs. He viewed me as a member of an inter-disciplinary team. And, there was Dr. Herb Maurer who joined the oncology staff after retiring from Dartmouth-Hitchcock Medical Center. His wife, Dr. Letha Mills, was medical director. His gruff appearance and booming voice belied his soft heart. He often used my notes to open conversations with patients and loved ones. There were also instances after delivering bad news that he would poke his head in my office and with tears say “give them some humanism.”

I have not forgotten Brian Gawlik. I met him as a patient and he became a friend. Brian was a mentor who guided us in the filming and editing of “Voices from the Lived World of Illness,” our first video featuring 4 patients with advanced cancer. He shared his professional skills and personal story of illness during our many hours together. His cancer was in remission when we met but was told by his doctors that within 10 years it would return. Almost 10 years later he had a bone marrow transplant at Mt. Sinai in New York City. We visited him over his 11 months in the hospital. Shortly after discharge and return to Vermont, he was admitted to Dartmouth-Hitchcock for end of life care. He asked that we join him and his family for a palliative care team meeting. Just as the meeting began Brian interrupted to say that he invited us because of our expertise in doctor-patient communication and wanted to be sure that he did not omit expressing his preferences for end of life care. I was deeply honored when Brian asked me to share this moment with him.

I have not forgotten Gary David Goldberg who was a very dear friend and served on our Board until his death in 2013. He was a man of great wit evidenced by his success as a writer, director and producer in TV and film. More importantly, he cared about others and offered support and encouragement in our efforts to humanize the medical encounter. Being the rather serious person that I am, he would make me laugh, although he often had to remind me of the punchline of the joke. His humanity inspired me to work harder to reach more people who were suffering with illness and overwhelmed in navigating the healthcare system. Every time we drive past his property in Arlington, we wave and say that we miss him.

Ms. Quindlen is right. “We are defined by those we have lost.” I have not forgotten.