(The Tennessean, October 6, 2013)
By Sen. Bill Frist, M.D. and Manoj Jain, M.D.
When a patient’s lymph node biopsy came back as a rare form of lymphoma, he did not have long to live. In the six months before he died, he did not settle his family affairs or financial accounts. His doctors should have initiated a frank conversation to best equip him to plan for his remaining time.
End-of-life conversations between patients and their doctors are not happening often enough. A 2009 Archives of Internal Medicine study of patients with terminal metastatic lung cancer (the majority of whom lived only two months after they were interviewed) found that just slightly more than half of their health care providers had discussed hospice care with them.
Every patient will face the end of life. So why don’t all doctors discuss options for end-of-life care with their patients?
In this patient’s case, I know why his physicians did not push harder for such a conversation. They were hesitant to give him a timeline for the course of his illness. They were not ready for the final prognosis. They planned to talk about it later.
I (Dr. Jain) know this was the case because I was one of his physicians. And I wish I had pushed early for an end-of-life conversation.
Unready for prognosis
Doctors are conflicted because — in most cases — forecasting a timeline is hard to do, even among the most experienced clinicians. For a patient awaiting a heart transplant, the outcome without a donor organ is very clear. But several studies have suggested that when dealing with many terminal illnesses, especially cancer, doctors are usually incorrect in their prognosis, nearly always tending to believe that their patients will live longer than they actually do.
Harvard Medical School professor Jerome Groopman, a leading cancer and AIDS researcher, says that when he is really pressed, he will provide a likely timeline. But he adds, “You want to partner with (your patients), not be the presiding judge handing down a death sentence.”
End-of-life conversations between patients, families and the doctor require quiet time, in the clinic or the hospital, time found amid good days and bad days of chemotherapy, congestive heart failure treatment or progressive dementia. The right day for the conversation often never seems to come.
Many doctors, especially those trained more than a decade or two ago, have had no guidance on when and how to talk with patients about the end of life. We were trained only to prolong life, not help in its end. Our focus has been on quantity of life, not quality of life.
Patients also avoid the topic. In a 2005 AARP survey of Massachusetts residents over age 50, nearly 90 percent said they wanted honest answers from doctors, but fewer than 20 percent had discussed their end-of-life wishes with their physicians.
How do we overcome this twofold barrier? How can we encourage doctors to initiate the conversation, and patients and their families to ask for the conversation?
Trust is the fundamental basis of the doctor-patient relationship. The patient must trust the doctor and the plan of treatment — or lack of treatment.
Time to reflect
Conversations this important require time to reflect on the trajectory of treatment and the patient’s quality of life. Such conversations are best held in a noncrisis situation, before an ICU admission or emergency surgery.
The doctor can begin by saying something like: “I know this has been hard, but I want to take the time and discuss what your wishes are if the heart failure does not respond to stronger medications.”
Patients can also initiate the conversation with, “I know things are not going well with the treatment and I want to talk about some of my options for end-of-life care that would not involve more aggressive medicines or surgery.”
The Tennessee Department of Health website (health.state.tn.us/advancedirectives) and most hospitals provide a form for physician orders for scope of treatment, also known as the POST form. It is completed by health care professionals and provides a doctor’s order about a patient’s wishes.
For example, POST forms document if you do not wish to receive CPR, antibiotics or medically administered fluids and nutrition.
The POST form records the conversation between doctor and patient, just as an advance care plan (or living will) form records the conversation among families.
Stating your wishes does not mean the end of care. New areas of medical care, including palliative care, are focused on helping patients, families and doctors navigate the end of life in comfort and peace.
As doctors, we always hope to make the best decisions for our patients. In looking back over the care we’ve chosen for our patients, we don’t often question our choice of antibiotic or a surgical technique, but we do wish we had spent more time talking to them about planning for the end of life, before the end of life.
Manoj Jain is a Tennessee doctor who writes for The Washington Post. Bill Frist is a heart transplant surgeon and former U.S. Senate majority leader.
This article was originally featured in The Tennessean http://www.tennessean.com/apps/pbcs.dll/article?AID=2013310060057