November 2, 2005

By Dorie Hightower

Posted in: Supportive care

Tags: cancer, chronic, coping, management, nerve, opioid, pain, palliative care, treat, unrelieved

Ann Berger, M.D., joined the National Institutes of Health (NIH) in 2000 to launch and manage the Pain and Palliative Care Service at the NIH Clinical Center. She has lectured and published extensively in her field of medical oncology, pain and palliative care, and is senior editor of Principles and Practices of Palliative Care and Supportive Oncology, published in 1998, 2002, and again in 2006. BenchMarks talked with her about her work in pain management.

How did you become interested in the emerging field of palliative care?

When I was 14, I watched my grandfather die of bladder cancer, and my family was overwhelmed by the impact of his illness. I saw firsthand how the effects of disease can ricochet among family members and back to the patient, and I carried those lessons throughout my training as a nurse and then as an oncologist. As a doctor, I came onto the scene just as the palliative care movement was gathering momentum, addressing the many needs of dying patients. At the same time, some oncologists started focusing on improving quality of life through better management of physical and psychological symptoms, and researchers were documenting that one in three patients being treated for cancer suffers from moderate to severe pain, and that 60 to 90 percent of those with advanced disease experience pain.

How does pain fit into the range of symptoms that palliative care addresses?

Pain is certainly the first thing we think of when we talk about the need for palliative care, but palliative care is a whole lot more than treating pain. We now know that pain is far more than a physical phenomenon; there are clearly emotional and spiritual components. Pain is whatever the experiencing person says it is, and this is important in that it is critical to always believe the patient when they say they have pain.

Palliative care is the branch of medicine that treats symptoms and suffering. I define it as a combination of active and compassionate therapies that is primarily focused on the physical, psychological, social and spiritual suffering of the patient, family and caregiver. Essentially it is dealing with quality-of-life. Palliative care is much more than end-of-life care — it should begin at diagnosis and be administered throughout the course of any chronic, life-threatening disease.

In my view, palliative care is really bedside care. It is holding the hands — there is a lot of science involved, but it’s also an art. It’s asking questions about the patient’s quality-of-life issues, their other physical symptoms, and what about their psychological, social, and spiritual needs?

The Pain and Palliative Care Service we have here at the NIH Clinical Center uses many pharmacologic, as well as nonpharmacologic, approaches to help heal the individual. Some things we do include hypnosis, biofeedback, reiki therapy (a form of touch therapy), acupuncture, pet therapy, art therapy, music therapy, and massage. It often doesn’t matter which one we use–I think the reason why these things work is because we’re touching people in different ways than they’ve ever been touched.

How has your own experience with breast cancer affected your approach to pain treatment and palliative care?

Three days after I accepted the position here as the head of the Pain and Palliative Care team at the NIH Clinical Center, I had a mammogram and was diagnosed with breast cancer. I was 40 years old, and it was my first and last mammogram–because of my age, there was a fairly high risk of recurrence, so I had bilateral mastectomies. After that, I herniated a disk and couldn’t move–the pain was severe–about a level of ten. Now, in retrospect, I’d had a little bit of back pain before but it didn’t mean anything. All of a sudden, I thought that this pain must mean that I had metastatic breast cancer– which it was not–which is why it felt like a ten. It became clear to me that pain and palliative care treatment have to begin at time of diagnosis, since a patient wants to be cured from their illness, as well as to be healed as a person.

I’ve heard that sometimes cancer patients will not even tell their doctor that they’re having pain for fear that the cancer has returned.

We see that a lot. Here at NIH, patients will tell those of us on the pain and palliative care team that they are experiencing pain, and ask us not to tell their doctor, because if it is a recurrence, then they will be off the protocol and they’ll stop the treatment. Unfortunately, in a cancer patient’s mind, pain absolutely signifies recurrence.

Is it difficult to assess pain in cancer patients?

I don’t think it’s difficult, but to assess pain you do need time. Total pain is physical pain plus psychological issues, social issues and spiritual issues, and to get at all of that you need more than the average ten-minute visit. If an oncologist has only a few minutes with a patient, naturally the discussion will center around what is going on with the cancer and they won’t be able to deal with the other issues.

One significant advance is that the Joint Commission on Accreditation of Healthcare Organizations now requires that physicians ask patients about pain. Pain has now become the fifth vital sign, like blood pressure and temperature, so now in hospitals it’s asked about more often.

How does cancer pain compare to chronic pain from other diseases?

Clearly in this country, palliative care has emerged from oncology, but sometimes I think people are far worse off with other diseases, and one of the reasons is that nobody believes that they have pain. Sometimes with conditions that cause chronic pain — from conditions like fibromyalgia or endometriosis, for example — the attitude of health professionals is often, “You don’t have a life-threatening chronic illness, why should you have pain?” Also, for pain from diseases like lupus or rheumatoid arthritis, there are huge barriers to the use of opiates. Often, with pain from cancer or HIV, for example, the doctors are solely focused on treating the disease and not on managing symptoms.

What about co-morbidities; how do they affect pain treatment options? Suppose somebody’s a cancer patient, but they also have high blood pressure or some other condition?

Excluding all the other suffering issues, about 75 percent of the time the pain is due to the cancer and the rest of the time it’s due to the treatments and procedures we do, such as neuropathic pain after a mastectomy. And sometimes when patients experience pain from the treatment, it can be a bigger problem because doctors don’t always believe that they have it. But cancer patients might also come in with migraine headaches, herniated discs, or fibromyalgia. So if you have other pain problems, it’s going to be a problem when you get cancer because you’ll still have to deal with the other pain issues.

What do you think patients and their caregivers need to do to become more empowered– and get their needs met?

They need to learn the questions to ask. As a doctor, I go through an assessment form that goes through all the physical symptoms of the pain. Is it sharp, burning, numbness, tingling?– and then ask questions about emotional state, social issues, family issues, what kind of losses have they had in life, and how religion and spirituality fits into their lives. When I get a family history, I’m less concerned about “Has their mother had breast cancer?” than, “Did their mother die and what was the death like and how did they deal with other losses in their life; and how do they deal with stresses in their life?”

But I want patients to start asking themselves these questions and talking to their doctors about it. Questions like, “Are they spiritual or religious?”, “What kind of community do they have?”, “Is there a community for them?”, “What importance does spirituality play in their life?”, and the hard question about, “What is their meaning of being?” should be asked. You know, if a patient says they have no meaning of being –and I’ve heard some of them say that to me — then we know what the main problem is. And we know what direction we need to go.

How would you define “meaning of being”?

Reason to live, purpose of life, why you’re here. For chronic pain patients, we find that dealing with those questions is what helps you ultimately heal. With chronic pain you see that a lot — you see patients with no meaning of being, with really no reason to live. And that is really the main problem that you’re dealing with. It’s not the physical, it’s not the automobile accident that they had 10 years ago and the chronic pain from that. It’s not just the back lesion. It’s the meaning of being. And that’s where we sometimes miss the boat.

People think that suffering is just depression, but it’s much more than that. I call that the whole suffering component, which includes physical causes of pain, but also includes a range of other issues, from loss of work and financial concerns to physical disability and fear of death. When people have chronic pain or an illness like cancer, we’re dealing with meaning-of-life issues and spiritual issues. You’re also dealing with grief and loss issues, and loss being not only loss of let’s say a parent or a grandparent, but losses throughout life, of different jobs that you may not have gotten, or pets that may have died. The way we cope with losses beginning in childhood often determines how we’re going to deal with pain or cancer or other diseases later on in life.

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Text Transcript

The Central Nervous System and Pain

The brain and spinal cord make up the central nervous system. A network of nerves connects different levels of the spinal cord and controls both conscious and unconscious activities, including pain sensation. It is through the spinal cord that information flows from these nerves to the brain and back again.

Audio Clips

1. Ann O’Mara, Ph.D., NCI, discusses pain medication addiction vs. physical dependence( Audio – Length: 00:36 – 575kb )
   

   Text Transcript

   Ann O’Mara, Ph.D., NCI, discusses pain medication addiction vs. physical dependence

   “We try to not make that an issue in the cancer population, in part because it’s an older population, in part…a lot of people don’t understand the difference between addiction and physical dependence. ”

   “Addiction is the psychological baggage. That’s the drug-seeking behavior. That’s what goes on up in here. Then there’s dependence, which, if you take it long enough, you will be dependent. ”

   “So as the pain decreases, or as we find out what the etiology of the pain is, then we say Ok, we can now start taking you off this pain medication. You don’t just stop them, you have to wean them down.”

2. Ann O’Mara, Ph.D., NCI, discusses which cancers induce the greatest amount of pain( Audio – Length: 00:36 – 572kb )
   

   Text Transcript

   Ann O’Mara, Ph.D., NCI, discusses which cancers induce the greatest amount of pain

   FS: “What we do know is that there are certain cancers that are more difficult to treat than others. Probably the two toughest from my perspective of a clinician is pancreatic cancer. That is such a tough cancer. ”

   MS: “Because it’s so lethal?”

   FS: “The pain from it. Oh, yes. The pain from it. The pain from it is just awful. It really is. It’s a neuropathic pain.”

   MS: “The nerve bundles? ”

   FS: “Yeah. And then the other one that’s really hard … and I just thought of this last week, but it’s variable, it’s multiple myeloma. That’s the bone pain.”

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Photos/Stills

1. Sample of a pain diary that a doctor may ask a patient to keep during the course of their cancer treatment.

2. The brain and spinal cord make up the central nervous system.. It is through the spinal cord that information flows from these nerves to the brain and back again.