October '98
by Sandy McKinnon RN MN

Let me begin this discussion by saying that I find it truly astonishing to be writing a paper in support of assessment tools. I have always believed in a rather unstructured approach to patient care. After all, is it not the relationship we build with the patients, clients, and family members we care for that matters the most? Why would we want to begin this caring relationship by completing tedious paper work? I had spent the last 17 years learning how to work with cancer patients, and I could not see how the palliative care assessment tools could improve what I knew I could already do.

I began working at a major Referral Center as a CNS in palliative care in 1994, in the same month that Dr. Rob Fainsinger signed on as the Director of Palliative Care. He came with his training, experience, and a pile of assessment forms he had used and/or developed. I came with my training, experience, and great skepticism about the need for these tools. It was my belief (still is), that I could meet with any patient and come away with a good understanding of the problems and concerns, and begin to develop a plan of care. However, it was often difficult to communicate my findings in a narrative description, and frustrating when physicians would not take the time to listen to a patient's "story". Anyway, Rob felt pretty strongly about these systematic assessment tools, so I thought it would be ok to go along until I could show him that I did know what I was doing. I began to use the *ESAS, the MMSQ, the CAGE, the ESS.... It really did not take very long to do them, and I could then carry on with my usual approach; talking, teaching, coaching, and doing.

Certain benefits of using the tools soon became apparent. The daily ESAS scores entered on to a graph developed into a clearer "picture" of how the patient viewed their symptoms and concerns. We could tell at a glance which problems were causing the most distress. I began to understand the patterns and nuances of these pictures. One pattern meant that the patient was probably expressing emotional pain in a physical way. Another pattern meant that the person had probably not yet come to terms with their increasing debilitation. The patient's description of how they were doing had to be met with our professional interpretation of the graph.

When everything was scored high, and the graph looked very "black", we could see the representation of total pain or total suffering. Some of these patients did not look like they were suffering - I recall one young woman who did not show any outward signs of being in pain, physical or otherwise. "June" spent most of her time in her room, calmly looking out of the window. She asked for frequent doses of pain meds, quietly describing a burning, searing pain in her abdomen. It would have been too easy to fall into discussions about whether or not she in fact had excruciating pain. The black graph told us what we needed to know, and she was transferred to a tertiary palliative care unit for intensive interdisciplinary support for her total suffering.

The other screening or assessment tools, administered less often, also made a difference in care. The CAGE questions, asked only once, let me know if people were at risk for using their medications as a way to make the "pain" (physical and emotional/spiritual) go away. The questions are asked respectfully, to see if a person has a history of having turned to medications or alcohol in the past to cope with life's stresses. I remember asking the CAGE questions of an elderly woman we had been consulted to see, fully expecting negative answers. To my surprise, she described turning to alcohol when her husband died several years ago. This lead into a discussion of her current problems managing the pain and a review of how she could cope better by using non-drug interventions such as distraction, relaxation, heat etc, instead of relying solely on the pain meds. She appreciated such a frank conversation and attention to a problem she had rarely discussed before. This simple screening tool alerted us to how she had coped before and helped us to avoid repeating her pattern of "chemical coping".

The "mini-mental", or MMSQ, while not perfect, is the best tool currently available to assess whether someone is slipping into a delirium. As with any tools, it is helpful to explain to patients and families why we are using them, and what we do with the information. The mini-mental state questionnaire can be viewed by patients as threatening or foolish without an explanation. I remind patients that we use fairly strong medications and we need to know as soon as possible if the meds are beginning to cause any problems with their thinking or concentration. The test can be done quickly if there are no problems evident and the results can tell us specific things that the statement "oriented to all 3 spheres" cannot. It is encouraging to watch a patient climb from a mini-mental of 12 to 18... 22... 28! It is discouraging to follow a mini-mental of 14 that does not budge in spite of ongoing intervention, but it is crucial information for a family to know that the problem is not going to be reversible. If people are well enough to memorize the questions, they earn their perfect scores. If someone has had a score of 30 over several tests, but begins to slip to 27, the time to intervene is now, before they slip into a full-blown delirium. I've seen too many people with a "sudden" agitated delirium that could and should have been picked up days earlier. These patients had become terrified from their delusions and hallucinations from their meds, or an infection, or a biochemical imbalance etc. The signs are almost always present before the patient "crashes", but it takes a systematic assessment to pick them up.

So, what have I learned since my move into the palliative care world? I've learned that we have moved beyond the era of "pain is what the patient says it is, when the patient says it is". Our assessments have become more sophisticated. I think that nurses have always understood that pain for cancer patients was more than a purely physical experience. We now have ways of assessing and describing suffering in a language that can be used between nurses and doctors and interdisciplinary team members. We can give patients the tools to tell us what is happening to them in ways that they never could before. By not asking the patients, we are either guessing or assuming; neither of which is entirely reliable - it is simply too easy to be wrong.

Yes, part of the patient's experience will be reduced to a number, or a series of numbers. There are, however, clear benefits from using a language that will get a physician to attend to complex symptom issues, or of having objective data to evaluate interventions. On a palliative care unit, when we describe a patient as having a pain score of 10/10, an ESS of 3, a constipation score of 11/12, a mini-mental score of 16/30, and a positive cage, every team member understands the outline of who this person is and can begin to formulate a care plan. The numbers are no more than an outline, and the relationship we have with patients still remains central to making a difference in care.

Three months after Rob and I started at the Referral Center, the hospital administrator asked us for information on our palliative program; what we were doing, and how we had made a difference. Without the systematic assessments, I would have been scrambling for a way to express our caring practice in words that an administrator could understand. We had the stories and I could describe examples of profound connection and caring, but how could we make them understand that our program truly did make a difference to patient care? In these days of cost cutting, I thought we might be "chopped" before ever really getting started. Instead of worrying, Rob was able to show the data. Our secretary had been keeping track of the information we'd collected from patients. He described the nature of their problems in terms of statistics and numbers. The patient's stories, clear to us on a clinical level, had been translated into a language the administrator could understand.... percentages with pain scores greater than 5, how many positive cage scores, mini-mental scores reversed, how decisions were made to transfer to hospice, the tertiary unit, or home.

The administrators went away satisfied that they had an effective program and I breathed a huge sigh of relief. I knew we were making a difference, but I was surprised at how clearly the assessment tools backed up this knowledge. We were making a difference for individual patients and for the program as a whole. The assessments did not take very long and provided very useful information. Systematic assessments are a sign of caring and must be included in a caring ethical practice. If I am not asking patients clearly and regularly how they are doing, in a language that can be communicated to other shifts, other disciplines, and other settings, then I am not doing as much as I can. The assessments are simply a framework for the relationship I have with a patient. It is the skeleton, over which I build my understanding of the people I care for. I have changed my mind about using a structured approach to caring, and I look forward to the day when all patients in a palliative program have an equal opportunity to benefit from this expression of caring.

ESAS = Edmonton Symptom Assessment Scale
CAGE = Screening Tool for prior use of alcohol or drugs as a coping method
MMSQ = Mini mental state questionnaire
ESS = Edmonton Staging System