A doctor who guided dying patients to what is called a “good death” refused to take the same advice she gave others, the same advice her trusted colleagues gave others.

Hers is an extraordinary story of a woman who broke every guideline for patients facing terminal conditions. She had been a breast cancer patient and thought she had beat it. She put her personal experience to work in her professional work in palliative care, the comfort care given to dying patients when curative care is pointless.

• When the doctors asked if they could ask the palliative care team to come see her, she refused. She was only 40.

• She never sought all of the information about her condition, the most basic information all patients should get.

• She would not stop treatment, even as it was painful.

• Bluntly, she suffered. In the eyes of those who know the value of palliative care, for what? She was not ready to give in, that’s what she died for. The right to keep on a fight for her life, however irrational that was to the well.

• She died without the good-byes from friends and family palliative care teams know how to deliver whenever possible. Her husband did not have a chance to have any important last words with her. He wished he had had that time, this New York Times story says.

Does this make her hypocritical? Of course not.

Dr. Desiree Pardi, as is true of many doctors and nurses, had skills and insights to be used to help others.

There is no guarantee these care-givers are able to help themselves. In fact, care-givers are notoriously bad patients.

There are a couple more important take-away messages from this story.

• People think, and often are right, about what they will do when the time comes to face death if they have fair warning. Still, many people change their minds when they get to the end of their lives. Circumstances may influence them—the wish to see a child graduate or be married— or, like Dr. Pardi, a decision to not let go, no matter what.

• Patients used to ask doctors what they would do if they were in their shoes. Many still do. Doctors these days discourage such questions unless they know the patient very well. It is too easy for a doctor to say something simple, something which can have unintended consequences in a talk with a patient who is facing death. Experienced doctors choose their words carefully. They use as few as possible while they find out where the patient is in this process. As Dr. Pardi’s example shows, doctors themselves may not be able to tell patients what, when their time comes, what path they will take.

This is a story which will make its way into bioethics lectures. Her story may serve to raise awareness of palliative care, which is not well understood. Think hospice, although hospices can provide some care which still falls into the curative category. Her story will be legend in the palliative care medical world.

When a patient’s full story is shared, one which ends with death, that story offers readers a window into a time each of us will face—again, if there is warning.

Please read the full story.

The New York Times

“By the time she was 38, Dr. Desiree Pardi had become a leading practitioner in palliative care, one of the fastest-growing fields in medicine, counseling terminally ill patients on their choices.

“She preached the gentle gospel of her profession, persuading patients to confront their illnesses and get their affairs in order and, above all, ensuring that their last weeks were not spent in unbearable pain. She was convinced that her own experience as a cancer survivor — the disease was first diagnosed when she was 31 — made her perfect for the job.

“In 2008, while on vacation in Boston, she went to an emergency room with a fever. The next day, as the doctors began to understand the extent of her underlying cancer, “they asked me if I wanted palliative care to come and see me.”

“She angrily refused. She had been telling other people to let go. But faced with that thought herself, at the age of 40, she wanted to fight on.”

Source: New York Times, April 4,2010