How did you get involved in the project?
I was working as a geriatric clinical nurse.

I had been in some early exploratory meetings with the people forming the project. Someone mentioned they would like to see pain made a fifth vital sign. I was intrigued. I wrote a grant to do an assessment of pain management in the community, then to do management and education and, in the third year, a reassessment to see if we made a difference. It was funded by the Mayday Fund, a private foundation in New York City dedicated to alleviating pain.

What was your role?
I was working with the project on a prospective study on people at the end of life in Missoula. Because I’m a nurse, I was interested in the care people were receiving. We did a pilot survey modeled on a study to understand prognosis and preferences regarding treatment. That study, from 1989 to 1994, fueled the whole interest in end-of-life care. It looked at pain management, quality of life, those sorts of things.

What the study found was not good––that the people taking care of patients didn’t know patients’ wishes. There was a lot of pain and other troubling symptoms. My point in Missoula was to take some of that work and replicate it.

What we found, what we now know, is that trying to establish a terminal diagnosis is touchy. So we are aggressively treating people who are actually at the end of life. We end up doing a lot of probably unnecessary treatment, uncomfortable treatment, when we should be talking about better quality.

I was able to contact people in health care settings and talk about some of the indicators that might let people know what might be the end of life. Hospice has done a good job of defining the indicators––frequent hospitalizations, unintentional weight loss, things that should be tipping people off that we may be entering the terminal phase of an illness.

I found that people really wanted to talk. That was another interesting piece we learned. We thought no one would want to talk about end of life. In health care, we tend to protect people from those issues, but the people I spoke with were OK with it. They were willing to participate.

What are the goals of this work?
In the first couple of years of the project, we needed to get a snapshot of what we were doing, to get out there and find out the current status of end-of-life care. The other piece that we knew from literature and just common sense is that pain is one of the things people fear the most. So we looked at what you can do to improve the quality of life at the end of life.

The twist I gave it was to look at pain not just at the end of life. People come to the end of life with a poor management of pain to that point, so why would they expect it to be better then? We need to be able to do assessment of pain. People expect their pain to be addressed; that is a primary reason they come for care. We gave them ways to make the pain visible by giving them a scale. So when people came into the system, all of us were using that same 10-point scale.

We piloted public education on this, and that triggered discussion. It gave people a way to start talking. We live in a "don’t ask, don’t tell" world about pain. Clinicians weren’t asking and people weren’t reporting for a variety of reasons—they don’t want to become addicted, they fear being put in a home. I basically spent the three years raising awareness. Traditional vital signs are not good indicators of pain.

Where is this going?
I’m hoping we’ll see better communication. We need to teach people in acute care facilities how to keep a pain diary. The health care provider reads that to assess the situation. In acute care we have a great opportunity to teach people how to get this data. That is where I want to go, to move the nurse out of it, keep the nurse there as a teacher to show how to do it, but to improve communication between patient and provider.

I find that people who are in pain usually have some pretty good answers on how to treat it. We need them participating more in their pain management. I’d like to see more of a multitude of pain management techniques––in addition to morphine, massage, guided imagery, some of those things we started doing in childbirth.

There still is a lot of education that needs to be done––but we made a big step with this pain scale, teaching people how to rate their pain. Zero is no pain. Ten is the worst you can imagine, not necessarily the worst you ever had. There has been a lot of good work in correlating the scale to a function––an ability to engage in day-to-day activities. There are a lot of people with pain levels of 2 or 3 who are pretty functional.

We didn’t see as dramatic an improvement as we would have liked. But the Joint Commission on Accreditation of Healthcare Organizations is saying now they want people looking at pain management. Two hospitals here added someone on staff to deal with it––so there is raised awareness that this is indeed a full-time job.