The Place of Palliative Medicine
Friday, November 7th All Things Considered

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SOUND OF PHONES AND PEOPLE AT NURSES STATION

ANNA MARIE STEPHENS (PH), PALLIATIVE CARE NURSE, KINGS' COLLEGE HOSPITAL, LONDON. Yeah, hi, Marylou here. We've got a patient here called Mary Lynch (ph), who's currently...

PATRICIA NEIGHMOND: Often it's the nurses who spend most of the time at the bedside of dying patients. At Kings' College Hospital, a member of the palliative care team, nurse Anna Marie Stephens, offers guidance to staff nurse Yvonne Francis (ph), who's worried about a patient she suspects has cancer.
The Macmillan Palliative Care Team of King's Hospital (from left: Alexandra Hillcox-Smith, RN; Andrew Davis, MD; Anne-Marie Stevens, RN; Robert Dunlop, MD

YVONNE FRANCIS, STAFF NURSE, KINGS' COLLEGE HOSPITAL, LONDON: He just broke down to me this morning, saying, you know, he's -- it's had enough and it's all waiting and it's really frightened. And, God, you know, you want to give him a big hug and tell him it's all going to be OK. But it's not. You can't -- you can't do that. So...

ANNA MARIE STEPHENS: I think the hug's OK. You know, the sort of physical interaction with people -- if that's what they want -- you know, if someone's leaning towards you, or whatever, then obviously they want comfort from some description.

But I think knowing that the worst thing you can say is it's going to be OK is good, because a lot of people don't. And...

PATRICIA NEIGHMOND: Since palliative care became a specialty in Great Britain, the country has produced 220 specialists, and there are over 3,200 beds in hospitals and hospices devoted to palliative care.

Increasingly, doctors in the U.S. say the same should happen here, where the vast majority of dying patients receive no palliative care at all. They point to alarming studies, like one recent Harvard University survey, which found nearly half of all medical students in their third year of clinical training had never observed a supervising physician talk with a dying person. Nearly three quarters said they'd never observed a surgeon tell a patient bad news, following an operation.

SOUND OF A BELL IN MT. SINAI HOSPITAL

In New York, Mt. Sinai Medical Center has one of the few palliative care medical departments in the U.S. Chief Resident of Internal Medicine Dr. Carl Fear (ph) says there should be more. As a medical student, Fear says he received only minimal training in pain control, and no training at all in how to talk with dying patients.

CARL FEAR, CHIEF RESIDENT, INTERNAL MEDICINE, MT. SINAI HOSPITAL, NEW YORK: We're oftentimes the one that initiate the work up and, in fact, find out that the diagnosis is one that has a very poor prognosis -- oftentimes, you know, giving them a survival of maybe six months to a year.

And it's an awesome responsibility to be the one to first give that news to a patient who's sitting in a room with loved ones around, with children that are often younger than we are.

And I think that 99 percent of the time, it's easier to avoid that discussion, and to basically say, "well, we're not sure yet," or "we want to look into this further," when you're -- you know, you know full well that the diagnosis is as serious and most likely one that will lead to their death.

PATRICIA NEIGHMOND: Avoiding difficult discussions is a natural outcome for young doctors like Fear, says Mt. Sinai Medical Professor Dr. Diane Meyer (ph). After all, she says, these doctors in training are only following the lead of their supervisors.

DIANE MEYER, MEDICAL PROFESSOR, MT. SINAI HOSPITAL: And if we see that our mentors and teachers never ask the patient about pain or other symptoms, are uncomfortable breaking bad news, avoid the rooms of patients who are dying -- that's a very powerful message.

Nothing is ever explicitly said, but the message of avoidance and lack of priority is very clearly understood by the students. And the message that they get is it's just not part of their job.

PATRICIA NEIGHMOND: As a result, what residents don't know about care of the dying is often appalling, says Meyer. During one of her recent lectures, residents were asked to estimate the rate of drug addiction among patients on pain medication. The estimates ranged from 10 to 50 percent. In fact, Meyer says, it's extremely rare for dying patients to become addicted to drugs.

But Carl Fear says these are the misconceptions that cause most residents to hold back adequate doses of pain medication.

CARL FEAR: The side effects of the medications are taught to be severe and potentially fatal. You know, you're taught that if you give too much morphine to your patient, they'll stop breathing and die.

And so, you make an equation in your mind -- "OK, this patient's having a lot of pain, but I don't want to do something that's going to kill this patient, because I don't have the experience of using this medication."

So what's worse? Having them suffer overnight until someone with more experience or more seniority comes in or, doing something which I wish that I was comfortable doing, but running the risk of killing the patient?

PATRICIA NEIGHMOND: This is a complicated ethical dilemma doctors in both the U.S. and Great Britain have worried about: the potential double effect of providing adequate pain medication to patients in need.

Britain's Dr. Robert Dunlap argues that patients who might die as a result of too much morphine are extraordinarily weak and within days, or even hours, of death anyway.

DR. ROBERT DUNLAP: When somebody is dying, the ethical decision is not whether to prolong life or not. The ethical decision is based upon the need to prevent or relieve suffering. That is the most crucial thing.

It's important for the patient -- who of course, by this stage is so weak that even, sometimes, minor pains will become very severe and distressing. So the key issue is relief of suffering in the first instance, irrespective of whether that might accelerate death.

PATRICIA NEIGHMOND: If palliative medicine were a specialty in the U.S. -- just like it is in Great Britain -- then such ethical issues would be better addressed in medical education, according to Diane Meyer; so would pain and symptom control as well as issues like talking with patients about death.

Meyer's opinion is not universally shared. In fact, the debate over whether to make palliative care a medical specialty in this country, has become something of a turf battle -- a battle between those who believe there should be a distinction between palliative medicine and general medicine, and those who do not.

SOUND OF MACHINES IN HOSPITAL ROOM

ROBERT MAYER (PH), ONCOLOGIST, PRESIDENT, AMERICAN SOCIETY OF CLINICAL ONCOLOGY: All right, and let's check your blood count from today. And your white blood count's actually a little lower than it was the last time you were here, which is good.

PATRICIA NEIGHMOND: Boston Oncologist Robert Mayer is president of the American Society of Clinical Oncology. Mayer argues that palliative medicine should not become its own specialty.

He says it should be integrated into general medical education. And all doctors, he says, should be taught how to manage pain and symptoms, and how to communicate with patients about death. Creating a specialty status for palliative medicine, says Mayer, could be harmful to a patient's sense of well-being.

ROBERT MAYER: I believe that by separating active care from palliative care, one, erodes the relationship that a physician has with a patient. For me, caring for a patient becomes a covenant and I'm there to take care of that person from diagnosis to death.

For someone such as me to turn my back on that patient or transfer that patient to someone else, at a time when they're doing poorly, I personally believe is ill-advised.

PATRICIA NEIGHMOND: There are ways to integrate palliative care into a patient's medical treatment. In Great Britain, specialists in palliative care see a patient from the beginning, when they are initially diagnosed with a terminal illness. But Mayer's concern is shared by many other physicians, who also worry that patients could feel abandoned.

On the other hand, doctors like Diane Meyer argue, patients are already being abandoned. And Meyer adds that the debate over the role of palliative medicine in the U.S. will only grow bigger and more powerful, precisely because dying patients are suffering.

ROBERT MEYER: The contribution that Jack Kevorkian has made to public and professional debate on this should not be underestimated. Because of the attention that he and the patients, who were so desperate for relief, that they felt no choice but to travel to a strange town in Michigan and die in a VW van, was a very loud call to the medical profession that we're failing our patients, and the medical profession has begun to respond in a very substantive way.

PATRICIA NEIGHMOND: Meyer agrees with British doctors, who predict the need for better and more effective palliative care will only become more critical, as the population continues to age and as more people face the likelihood of terminal disease.

Patricia Neighmond, NPR News.

ROBERT SIEGEL: For more information on palliative care, visit our website at npr.org. There, you'll find transcripts of all the reports in our end of life series, as well as readings and other resources for people with life-threatening illnesses, and for their families and caregivers.

LINDA WERTHEIMER: Today's report on palliative medicine was produced by Jane Greenhalgh and Joe Neel.

ROBERT SIEGEL: Our report on the Missoula Demonstration Project was produced by Deborah Schifrin.

LINDA WERTHEIMER: And our story on Helen Payne and her family was produced by Sara Sarasohn and recorded by Linda Mack, with help from Flawn Williams and Stacey Abbott.

ROBERT SIEGEL: The senior producer of this week's series was Sean Collins, the senior editor, Jonathan Kern.

LINDA WERTHEIMER: The series: "The End of Life: Exploring Death in America," will continue on this and other NPR News programs over the next several months. For a schedule of those reports, look on our website at npr.org.


Dateline: Linda Wertheimer, Washington, DC; Robert Siegel, Washington, DC

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