When an Accurate Diagnosis is Not Enough

Physicians have the ability to either shatter or restore a patient’s hope. Those words were spoken by Dr. Alan Astrow at a recent ASCO Voices Session.  Dr. Astrow is a professor of clinical medicine at Weil Cornell in NYC. The presentation was entitled “The Art and Science of Hope.” The short version of Dr. Astrow’s description of hope is that it can affect a person’s life outcome. Dr. Astrow offers that the way doctors think has a direct effect on patient care. Hope is a gift.

The Prognosis

A few simple words of hope from the attending physician at the time would have helped Carlos’ mother and saved Dr.  Richard Leiter years of regret. Dr. Leiter, who is now an assistant professor at Harvard’s Medical School and a palliative care doctor, was an oncologist in training at the time of the stem cell operation.

Twenty-one-year-old Carlos was struggling with a life-threatening graft-vs-host disease (GvHD) after receiving a stem cell transplant for leukemia. GvHD is a complication that may occur when stem cells are transplanted from a donor to a patient. According to Dr. Leiter, Carlos was literally clinging to life.  Yet his mother had faith. She told Dr. Leiter that she “hoped things would get better.”

Dr. Leiter recalls agreeing with her and responding that he hoped they will. That was in spite of the fact that he knew he and the other attending physicians could not save Carlos.

Then he responded further to the distraught mother. It is a response he has regretted for so many years.  He recalled the discussion in his presentation at the ASCO Voice session. Dr. Leiter attributes his next response to his eagerness to prove he was capable of being in control of this type of conversation.

He went further and told Carlos’ mother that the doctors will not be able to save her son’s life.

Carlos’ mother gave Dr. Leiter a stern look and announced:

“You want him to die.”

At that very moment, Dr. Leiter knew she was correct. He realized that he was not responding well to the family’s pain. He realized that he was trying to get Carlos’ mother to adopt their opinion. Since the doctors were unable to save his life, they would make him as comfortable as possible in anticipation of his death. That was the moment of truth. How could anyone expect the family to accept the unacceptable?

Dr. Steven Pantilat, professor of palliative medicine at UCSF and a presenter at the ASCO conference, offered his opinion. He said that asking patients to think about their future is the “golden question.” He suggests that the doctors ask the patients and their family what they hope for when they think about the future.

Dr. Pantilat said that often things that matter to the patient in addition to finding a cure are issues where the doctors may be of help. One patient who had advanced pancreatic cancer wanted desperately to be at her daughter’s wedding that was ten months away. Although the doctors realized that this was not possible the discussion led to a solution. Her daughter’s wedding was going to take place sooner and the wedding was moved to her mothers ICU.

Dr. Pantilat said that hope can inspire people even at the lowest and darkest moments. He said that doctors need to be in the business of hope. Some patients may only want a cure, but others may want more family time or more comfort to ease the pain. People can still hope for things that ‘can be’ despite there being many things that can no longer be.

Then there is a physician’s concern that if they ask the “golden question” the first response would be to ask to be cured. Secondly there is concern that these discussions may either destroy hope or worse, lead to false hope. Those concerns may preclude the physician from beginning such discussions.

Dr. Pantilat says that the doctors want to be honest with their patients. They can be kind and compassionate, but they must be honest when discussing their hopes. That often means taking the middle road and assuring the patient that even though the physicians cannot cure the cancer they can still find other ways to help the patient.
Although the evidence is limited, indications are that a patient’s well-being can be improved by their feelings of hopefulness. It is also suggested that it may improve their cancer outcome. A recent study reported that a patient’s increased feelings of hope reduced inflammation in ovarian cancer patients. Patients who reported feeling hopeful experienced less anxiety and depression.

These lessons were learned by Dr. Leiter early in his medical career as a palliative physician and have been a major influence on his practice to date. The doctor acknowledged that he could not have prevented Carlos’ death nor could his associates. They could not have protected his mother from her unimaginable grief. This will no doubt stay with her for the rest of her life.

But Dr. Leiter does recognize the many ways he could have made things a little easier for her. He suggests that he could have guided her instead of being a cross-examiner. He could have joined her in having hope. Now he realizes that clinicians can always find a way to have hope along with their patients and families.

And now, when he is comforting a grieving family, and they say they hope their loved one’s health improves he thinks back to Carlos. He remembers the look in Carlos’s mother’s eyes.

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Last modified: July 24, 2024