In most doctor-patient conversations, the doctor leads the way.
But when it comes to planning for the end of life, we need a role reversal. The patient — you — may have to take the lead in conducting end-of-life conversations. While this may seem surprising, remember that dying is essentially a social and intimate family event that has become overly medicalized in the past century.
Patients and families need to reclaim dying from the hospitals and return to what we used to do before the 20th century: Prepare for the end of life as a family and care for our seriously ill and dying in a homelike environment.
You, as the patient, know when you are ready to discuss this sensitive issue with your family and your doctor. You also have a deep understanding of how your culture, beliefs and values shape what matters most to you in the last chapter of your life. You need to help us doctors overcome their innate reticence so that they can discuss the sensitive topic of death. You need to know that their ability to predict your life span may be an educated guess, as death prediction is a complex art determined by numerous and ever-changing variables.
We know that many of the 2.6 million Americans who die every year never get to shape how and where they die – or even talk to their doctors about it. Without these conversations, doctors don’t know what the patients’ goals are for living their last days. What are their hopes, wants, needs and fears? Do they want to die at the hospital connected to a machine? Do they want to die at home? The current default is for doctors to give patients every possible treatment for their condition, regardless of its impact on the patient’s quality of life, the cost or the patient’s goals.
Of 1,040 multispecialty doctors working in two large hospitals affiliated with the Stanford Medical Center, 99.99 percent reported that they faced barriers to conducting end-of-life conversations with patients. Doctors felt stressed about discussing end-of-life issues with patients who belonged to an ethnicity other than their own. They were reluctant to talk to patients who were not fluent in English or did not understand medical terminology. They also felt frustrated when the family would not allow the doctor to talk to the patient about the diagnosis.
As one doctor said, “certain groups feel that honesty and frankness is not good for the emotional outlook on life for the patient and they do not want the physician to be frank with the patient in discussing end-of-life issues at all.” Finally, when patients talked about their faith and beliefs about God, death and the afterlife, the doctors did not know how to respond.
We can continue to do what we are doing right now, which is to work hard to maintain our collective culture of silence. Or we can take a big step toward one another and begin to talk about a topic that scares many of us: the end of our own lives.
With guidance from patients and families from various racial and ethnic groups, a Stanford team has developed a format for a letter that can help in this conversation. Unlike legal documents, which can be intimidating and expensive, a letter is a familiar format, so the entry bar is low. The letter can empower the patient and the family to take the first step and engage the doctor in a conversation on what the patient wants. The letter can also guide the path for official documents such as advance directives and Physician Orders for Life-Sustaining Treatment, known as POLST forms.
The letter offers certain advantages over those forms, however. They do not give clues about how a patient prefers to handle bad news, or how to handle a situation where the family does not want the doctor to disclose the diagnosis to the patient. This is especially challenging when the patient and the doctor do not speak the same language. The letter could also offer guidance when the family wants something different from what the patient wants — as sometimes happens when the patient is too sick and vulnerable to have a voice.
I invite you to write your letter now. And, the next time you see your doctor, start the conversation by saying “Doctor, let me help you talk about some things that matter most to me at the end of my life.”
VJ Periyakoil is a physician and director of palliative care education and training at Stanford University School of Medicine.