Palliative Care and the Art of Listening

In "Lives Less Ordinary," Jerome Groopman's powerful and timely look at the complex care of chronically ill children, the first child profiled is being treated at Boston Children's Hospital for a rare disorder of the mitochondria.

This is an interesting coincidence, as a disputed diagnosis of mitochondrial disorder has been central to a nasty recent custody dispute between the hospital and another family. 

Among other things, that was a cautionary story about the consequences of communication and trust badly broken down. An ethics consult was called, and recommendations made, but it is unclear how well they were heard. 

And so this story by the endlessly insightful Groopman serves as a welcome view into doctor-patient/family communication at its best. And the families sure need it.

Groopman’s story, in the January 20 New Yorker magazine, is subtitled "Chronically ill children are living longer than ever. How should we care for them?"

In answering that question, the starting point would appear to be: first listen, then do no harm. That is, get to know the patient and what he or she values. So it is no coincidence that Groopman, professor of medicine at Harvard Medical School and chief of experimental medicine at Beth Israel Deaconess Medical Center in Boston, focuses on the palliative care specialty. Taking the time to know the patient is a key aspect of the palliative speciality.

Don’t miss Groopman's story. Here is a taste of what you'll find.

The PACT, or the Pediatric Advanced Care Team, is a group of physicians, nurses and social workers from Boston Children's Hospital and the Dana-Farber Cancer Institute. PACT, Groopman writes, "is among a growing number of hospital programs that ... have three goals: to coordinate care, help families make difficult decisions about treatment options, and ease the child's pain and suffering."

One PACT member is Christina Ullrich, an attending physician at both Children's and Dana-Farber. This comment from Ullrich stood out to me: "As a doctor, you focus on pathology and physiology; you learn pharmacology and how to order drugs. The social and psychological dimensions of care are often not well respected. But I learned that you can't treat a child's pain effectively without understanding her anxiety and her social situation. It's not just a matter of writing a prescription."

Groopman also provides insight into why palliative remains marginalized, undervalued and widely misunderstood: in four years at Harvard Medical, students get only a half-day training in hospice and palliative (which overlap but are hardly the same specialty): ER staff, likely with no real knowledge of the patient, cast judgmental looks at the sometimes high dosages of pain-killers; and, because palliative stresses relationship, it is a more complicated billing than, say, surgery or chemotherapy.

Because palliative specialists get to know the patient and family, they develop a relationship that can become especially important when hard choices must be made amid diminishing treatment options. 

Near the end of his story, after Groopman briefly describes the process of completing a form known as MOLST, for medical orders for life-sustaining treatment, a patient's mother says: "If his heart stops, it's time to let Avery go. He has fought such a hard fight; he will let me know when he is ready to go."

Only in a relationship built on trust can such a conversation take place.

Another coincidence: While writing this story, I found a piece by Nathaniel P. Morris, a student at Harvard Medical who is emerging on the Boston Globe opinion page as a voice to pay attention to. Here he assesses the recent controversy over custody, communication and diagnosis at Boston Children’s.

Amid ambiguous demands and expectations, Morris writes, “health care providers must discern when to apply the powerful instruments at their disposal and when to carefully hold back. It often just comes down to clinical judgment, a skill I’ve yet to learn but I’m hoping to find in my education.”

Here’s hoping he doesn’t miss that half-day on palliative.

(Paul C. McLean, author of "Blood Lines: Fatherhood, faith and love in the time of stem cells," also blogs at www.paulcmclean.com.)