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

For terminally ill patients, quality of life is often neglected for the sake of pushing the limit of medical technology. NPR's Patricia Neighmond explores "palliative care" -- compassionately and effectively easing the suffering of terminally ill patients, thereby making their lives not only tolerable, but often worth living.

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LINDA WERTHEIMER, HOST: This is ALL THINGS CONSIDERED. I'm Linda Wertheimer.

ROBERT SIEGEL, HOST: And I'm Robert Siegel.

This week in our series, "The End of Life: Exploring Death in America," we've heard how difficult it can be to find comfort in the final stages of a terminal illness. Advances in medical technology have greatly extended life. But the price of extended survival can be prolonged agony.

Some patients feel suicide is the solution. There is another alternative. It's called "palliative care." And it aims to provide maximum comfort at the end of life.

The word "palliative" literally means concealing or cloaking. In medicine, it describes care that alleviates extreme pain and suffering. The movement toward increasing palliative care has only begun in this country. But in Britain, it's a well-established medical specialty.

NPR's Patricia Neighmond takes a look at how the movement in the United Kingdom is shaping the attitudes toward palliative care in America.

SOUND OF PEOPLE IN HOSPICE ROOM

PATRICIA NEIGHMOND, NPR REPORTER: Mick Donalon (ph) sits in his room at St. Christopher's Hospice, a rambling four-story building in London with lots of windows and a rich green garden laced with paths. Donalon has lung cancer that has spread to his bones -- one of the most painful types of cancer.

Before he came to St. Christopher's, he was hospitalized for a number of weeks on a general surgical ward, and suffered what he describes as an excruciating experience.

MICK DONALON, CANCER PATIENT, ST. CHRISTOPHER'S HOSPICE, LONDON, UNITED KINGDOM: I was in constant pain. They couldn't understand what kind of pain I was going through. I should have had medicine every two hours. I had it two-and-a-half hours. I had it on three hours. At one time, I never had it at all that night.

That's the difference between a general surgical ward and palliative care. They're there for you every minute.

PATRICIA NEIGHMOND: Here at St. Christopher's Hospice, patients like Mick Donalon receive palliative care -- a type of medical care that aims to relieve suffering when cure is no longer possible. Donalon's wife Carol says before they came here, she had begged doctors at the other hospital to ease her husband's pain.

CAROL DONALON, WIFE OF CANCER PATIENT: Mick even said at one stage -- he said, "well sod it. I'm dyin' anyway. You know, why should I be in pain. Just give it to us."

And, you know, from that time they upped it a little bit. But here, they do it to the extent where he suffers no pain -- or very little, which -- both physically and mentally is best for all of us for Mick to be like that, than see him when he was in a great deal of pain.

NIGEL SYKES (PH), DOCTOR, SPECIALIST IN PALLIATIVE MEDICINE, ST. CHRISTOPHER'S HOSPICE: Morning, Mick. How are things this morning?

MICK DONALON: Quite good this morning, actually. I mean, I...

PATRICIA NEIGHMOND: At St. Christopher's, Nigel Sykes is Donalon's doctor. Sykes is a specialist in Palliative Medicine. Today, he discusses the radiation treatment Donalon's receiving -- treatment aimed not at stopping the spread of cancer, but at stopping the pain.

NIGEL SYKES: This radiotherapy is different, isn't it? Because, really, this is going particularly to the bone, for the pain. So, we're hoping that's going to be its major effect -- to get the pain better.

I mean, how's the leg feeling today?

MICK DONALON: Oh, the leg's much better. I mean, you know, I can...

PATRICIA NEIGHMOND: Today, the majority of cancer patients -- up to 90 percent -- suffer significant pain. The goal of palliative medicine is to help control, and, if possible, stop this pain -- even if that means using aggressive treatments like radiation chemotherapy or surgery.

In Donalon's case, doctors decided to perform surgery to help alleviate pain from an abscess in his lung. A permanent tube was inserted into Donalon's lung to routinely drain the infection. Another tube sends a low dose of morphine into the base of his spine every three minutes.

MICK DONALON: Now, I can breathe properly. And the quality of life has completely changed. I mean, I was afraid to even go to the toilet without an oxygen bottle. The difference now -- the difference before, is 100 percent. Life is tolerable. Life's worth living.

PATRICIA NEIGHMOND: And that's exactly what palliative medicine aims to do, says Dr. Nigel Sykes, help patients like Mick Donalon regain some control over their lives. Sykes says he never tells a patient "there's nothing more we can do for you."

DR. NIGEL SYKES: That phrase is one of the most searing phrases a patient can hear, "there's nothing more that we can do for you." Now, if the only thing you see yourself as doing is administering certain scientific techniques to a patient, that may be true. But, if you are also capable of seeing a patient as a living, thinking, feeling human being, there is always something else you can do.

PATRICIA NEIGHMOND: In fact, Sykes says, he and the other palliative care physicians he works with hardly ever run out of ideas about how to control pain, or about how to provide patients with greater comfort.

DR. NIGEL SYKES: Even if you are there with your back up against the wall, you can still accompany someone in their illness and their distress. You can simply say, "we're never going to give up on you, and we're never gonna leave you alone."

And I think over the years, doctors used to know that. They used to know that the most important thing to patients was that they should not be abandoned. And that does appear to be a lesson that some doctors have now forgotten.

PATRICIA NEIGHMOND: Without good palliative care, studies show, 75 percent of all dying patients will suffer pain, 65 percent breathlessness, and half nausea. Today, Great Britain leads the world in its effort to provide comprehensive care for the dying.

It was not an easy journey getting here. Doctor Derek Doyle is retired now, but still active in the movement he helped begin. Doyle recalls what the quality of care for dying patients was like 30 years ago, when pain and other frightening symptoms were simply ignored.

DEREK DOYLE, PALLIATIVE CARE PIONEER: We either left them suffering, and didn't even notice they were suffering, or we very heavily sedated them. And I can remember very clearly, being told by my seniors that when a person was within days of death, you just gave them the dose of the opioid -- heroin or morphine. And you just pushed it up and up and up until they went.

And that was considered, I think, very kind compassionate care. And I'm quite sure we abbreviated a lot of lives. And there was no question of rehabilitating them, to give them a longer spell of good quality life.

PATRICIA NEIGHMOND: This notion, of improving the quality of life for dying patients, was new. But it was a conviction that Doyle and a handful of other doctors used to help shape their vision of more compassionate and effective care for the dying.

DEREK DOYLE: We had to say, "we can do more for pain." We were -- got the response, "no, no, it's inevitable, this pain."

And of course we've now proved that it's not inevitable. Having pain may be, but continuing with it, no. And we can relieve just about all pain.

We're not trying to sanitize death. And I want to emphasize that. Palliative care is not trying to make death beautiful -- to make the end of life a heroic, sort of euphoric experience. It's very, very realistically saying death is a part of society.

PATRICIA NEIGHMOND: At about the same time Derek Doyle was working to convince the British medical community of the need for palliative care, a similar evolution was occurring on the other side of the world -- in Australia and New Zealand, where a young medical student, Robert Dunlap, was just beginning his studies.

Like most students at the time, he was not educated in palliative medicine. But the young Dunlap quickly realized how patients with terminal disease were literally being abandoned.
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

ROBERT DUNLAP, HEAD PHYSICIAN, ST. CHRISTOPHER'S HOSPICE: When I first met a patient with cancer, who was a young woman dying of breast cancer, who was absolutely petrified by the breathlessness that she was experiencing -- and I thought to myself, there has to be a better way than this. It's got to be better than this.

PATRICIA NEIGHMOND: Years later, when Dunlap came to work in Great Britain, it became clear that individuals' fears and anxieties had led to a cultural denial of death that went back centuries.

ROBERT DUNLAP: I worked at St. Bartholomew's Hospital in London, which is the oldest medieval hospital still on its original site. It was founded in 1126. And within 20 years, it was known as a place where people went for cures. And by 1544, the role of a surgeon was to define who was curable and to keep the incurables out.

So, the difficulty in dealing with the dying is something to do with a personal issue as much as it is to do with a professional issue. It's the fear that all of us have of death and dying.

NEIGHMOND: Ultimately in Great Britain, physicians like Robert Dunlap and Derek Doyle persevered, pressuring their colleagues to look more critically at how they cared for the dying.

And in 1987, palliative care was officially designated a medical specialty. Doctors could choose to specialize in this field, just as they chose cardiology or neurology.

SOUND OF FOOTSTEPS AND PEOPLE IN HOSPITAL

Today, one fifth of all British hospitals provide palliative care. Eventually, health officials hope to offer palliative care at all hospitals. This care typically includes teams of social workers, nurses, specialists and doctors in training, like Andrew Davis, who works at Kings' College Hospital, in London.

ANDREW DAVIS, PALLIATIVE CARE DOCTOR IN TRAINING: He seems a bit agitated, so I think we'll put some medazilum (ph) in there...

UNIDENTIFIED FEMALE NURSE: Right.

ANDREW DAVIS: ... and about .6 milligram of glycoproneum (ph). And really just, you know, give him whatever he needs to settle him down, really.

NURSE: Yeah, he also...

PATRICIA NEIGHMOND: Davis discusses treatment options with a nurse. Davis is obviously shy, but he's a determined young man. And he says he's far more fulfilled, treating patients today, than he was before he began to specialize in palliative care.

ANDREW DAVIS: When I was an oncologist, I used to spend a lot of time looking at CT scans and measuring whether the tumor had shrunk, and looking at blood tests and seeing whether the blood tests have improved. And if the X-rays looked better or the blood test looked better, then I was happy and we'd carry on with the treatment.

And we'd always ask the patient how they felt, but usually they patient would say they were fine. And, it would be a busy clinic. And, you know, you'd spend a couple of minutes with the patient, then about 10 or 15 minutes with their notes and their X-rays and whatever.

Nowadays, it's the other way around. You spend the majority of time with the patient.

PATRICIA NEIGHMOND: Since palliative care has become a medical specialty, the field of pain control has grown dramatically. There is more funding for research, and as a result, more discoveries.

Dr. Robert Dunlap, now head of St. Christopher's Hospice, recently found that it was possible to relieve pain from nerve damage caused by cancer with a heart medication, and that breathlessness could be diminished with a medication normally used to control nausea.

When pain and symptoms like breathlessness and nausea are controlled, patients can move on to focus on more important, emotional issues, says Dunlap -- on anxieties about death, and on decisions about relationships, medical care, and finances that might have been put off.

DR. ROBERT DUNLAP: We can't divorce the symptoms from the fears. You can't sit down with somebody who is that breathless and distressed, and encourage them to talk about how they're feeling.

My mother, when she died of breast cancer, she was very breathless at one point. But we were able, with use of appropriate medications, to so relieve her breathlessness that she could go back to answering all the questions on "Sale of the Century" before the contestants.

Now, that required expert manipulation of medications that are not commonly used for those kinds of symptoms. But it also required an ability to understand what she was afraid of, and to help her to feel confident that the breathlessness wasn't a sign that she was about to die there and then.

PATRICIA NEIGHMOND: Dunlap is adamant that palliative care is more than just treating pain and symptoms. Suffering, he says, goes beyond pain. And this is the part of palliative care that's so difficult for doctors: talking to patients about their anxieties, there isolation, and their death.

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

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