The End Is Where We Start…

And to make an end is to make a beginning. The end is where we start from… T.S. Elliot • The Four Quartets

A friend, who has been living with multiple myeloma for the past seven years, forwarded me the link to “Not Just a Death, a System Failure” (link below) which appeared in the February 2 issue of the New York Times. After reading the article I found myself catapulted back in time. As a member of the cancer center staff, albeit a medical humanist and not a healthcare provider, I attended weekly staff meetings. We’d gather on Monday mornings at 8am to review the status of active patients and those newly diagnosed. On this particular Monday one of the oncologists arrived later than usual but eager to report he had spent the entire weekend searching for a clinical trial and found one.

I thought about this patient, a 60-year-old man with lung cancer and brain metastases who was confined to a wheelchair and cared for by his wife. He had been through several different treatments to no avail. Sitting next to the oncologist I found myself putting my hand on his. I reminded him, “You took an oath to do no harm-not to cure cancer.” He cleared his throat and turned to me – his eyes welled up with tears, “Thank you,” he said. Later that day he let me know he had met with the patient and his wife.

In my role on the cancer care team I was to follow up with patients after they met with their oncologist. I would document what patients understood about their diagnosis, prognosis, plan of care and if they had any questions. In this particular instance the patient reported his disappointment upon learning that a clinical trial would not offer a cure. The oncologist explained that while the new treatment might give him more time it may very well compromise his quality of life, even more than it already had.

“Why would I do that?” the patient asked. The oncologist admitted it was a question he had asked himself, not wanting to give up and having felt compelled to offer something. He shifted the focus of the conversation to what could be provided for him and his wife at home through hospice care.

“In time, I had come to learn this oncologist had lost a loved one to cancer early on in his life. I often wondered how many are called to medicine because a family member or friend was not cured. In the article referenced above Ms. Moran draws on her reaction to her mother’s care at the end of her life to motivate her to apply to medical school. And, she “vows to change how people die in America.”

Needless to say, this essay elicited many comments—one being, “If you get into medical school and go out into the world to practice medicine, remember this very important point- the patient and family are the ones who decide, not the doctor.”

Another comment noted this was the “final essay in a series about end of life care.” I went back to the beginning—to the first essay by the pioneering palliative care physician Dr. Ira Byock titled “Dying Shouldn’t Be So Brutal.” Byock calls for “…medical schools to adequately train young doctors to assess and treat pain, listen to patients concerns and collaborate with patients and families in making treatment decisions—and to test for those skills before awarding medical degrees.” He goes on to say, “What is missing is the visible, vocal citizen-consumer demand.”

Our SpeakSooner Intiative addresses Dr. Byock’s call for consumer demand. By introducing the Difficult Conversations Toolkit (Video & Workbook) through community education (in addition to medical practice) we are preparing patients and loved ones to ask questions and actively engage in decisions about care. And, with doctors trained to listen and patients ready to talk, they could find themselves on the same page—sooner rather than later. As the late Anatole Broyard reminds us in his essay The Patient Examines The Doctor, “Not every patient can be saved but his illness may be eased by how the doctor responds to him—and in responding to him the doctor may save himself…”

Celia Engel Bandman

“Not Just a Death, a System Failure”