This Pain is Killing Me:
Addressing Chronic Pain with Compassion
 
In separateness, lies the world’s great misery, in compassion lies the world’s true strength.
Buddha
            A commonly accepted definition of chronic pain is pain that persists longer than the temporal course of natural healing associated with a particular type of injury or disease process Pain, on the other hand, is an unpleasant and unwanted subjective perceptual experience described by the person experiencing it. The number of patients transitioning from acute pain to chronic pain is alarming, as is the impact of this most unfortunate circumstance on our already stressed medical system. Psychological comorbidity is a frequent complication and one that complicates course and prognosis.  Chronic pain significantly predicts onset of new depressions, and depression significantly predicts onset of new chronic pain and other medical complaints (Tunks, Crook, & Weir, 2008). While Post Traumatic Stress Disorder (PTSD) may mediate chronic pain, brain injury appears to have an independent correlation with chronic headache pain, with prevalence averaged among veterans and civilians approaching 60%  (Nampiaparampil, 2008).
            Primary care management of chronic pain is difficult and frustrating, even for seasoned physicians? First, diagnosis is challenging, with imaging studies of chronic pain patients often showing no discernible pathology or a level of damage that is far outstripped by the amount of pain the patient “should be” reporting.  Second, patients who suffer from chronic pain often report simultaneous problems with anxiety, depression, irritability, frustration (with present and past medical providers), and fluctuating mood states that can erupt at any time during the medical exam. The medical provider is thus faced, not just with addressing the mysteries of chronic pain, but also the active sense of mental suffering that the patient brings into the room. Third, there is the omnipresent fear that you, the health care provider, are dealing with an addict who is going to misuse, abuse or divert the pain medicines that are prescribed. Fourth, access to behavioral treatments is problematic, particularly for specialty multi-disciplinary pain management programs. Even when patients access these services, chronic pain is rarely completely relieved and they return to their PCPs for on-going management. These factors together, or in isolation, can create an atmosphere of mutual fear, distrust, and discouragement between the patient and provider.
            Let’s take a closer look at the issue of treatment of chronic pain with medications. While opioids and antidepressants (as well as other medications) may be useful, they are only a partial treatment at best, and it is difficult to find (and maintain) the delicate balance between beneficial effects and problematicside effects. With long-term use of opiods, patients may experience a loss of motivation and initiative, and develop drug tolerance and, in some cases, addiction. These problems, along with the problem of drug diversion, make medication management of chronic pain in primary care complex.
            Before delving into behavioral strategies for PCPs, let’s look briefly at psychological research findings pertinent to redesign of PC treatment of chronic pain. First, data from a variety of studies suggest the idea of a “pain gate” as a functional, rather than structural, aspect of the central nervous system. Factors, such as depression, anxiety, fear of pain, and sedentary lifestyle, among others, stimulate the opening the pain gate and thereby increase the patient’s experience of pain. Additionally, patients with higher levels of pain show greater disruption of memory traces, suggesting that they have deficits in working memory (Dick & Rashiq, 2007). Understanding the role of pain gate-related vulnerabilities and the attention problems characteristic of patients with chronic pain, PCPs can better prepare to support REAL behavior change in this vulnerable group of patients.
            Research findings evaluating the use of mindfulness and value-based behavior change strategies with chronic pain are encouraging (McCracken & Eccleston, 2003; Dahl, Wilson, & Nilsson, 2004, Vowles, McNeil, Gross, McDaniel, Mouse, et al., 2007). To apply these new strategies, we recommend that you pursue three directions. First, we suggest that you define chronic pain in a new way. Since much of the chronic pain patient’s struggle is with avoiding and attempting to control pain, we recommend that you think of chronic pain as pain and the unwillingness to have it. As a PCP, you can educate the patient about this feature of chronic pain by encouraging patients to look closely at their goal or motivation with pain. Do they want to get rid of it or do they want to learn to live a meaningful life, even with continuing pain? Many times, the chronic pain patient will tell you that they want to be pain free. When you hear this, continue with workability questions: What have you done to be pain-free? How has that worked in the short-term and in the long-term? Many times, patients will say that what works in the short-run (e.g., pursuing larger dosages of analgesic medications) does not work in the long-run (e.g., does not reduce pain and instead brings new problems). This new definition highlights the problem on unwillingness. Unwillingness to experience anything that is already present in our lives brings suffering—the suffering of trying to avoid it, deny it, reason it away, or make someone else responsible for it.
            Unwillingness in one person can easily draw unwillingness in another person, and this brings us to our second recommendation. Find ways to enhance your willingness level, so that you can better model acceptance. For example, a patient may insist “this pain is killing me . . . I’ve got to have more medicine.” A less willing response might be “no, I’m not going to give you an increase this month, you got one last month” or “okay, but that’s it, no higher dose after this.” A more willing response would sound more like, “I hear you, I know you are suffering and I understand that you think medication will stop that suffering. Science says that it won’t. My saying this probably makes you uncomfortable, and admittedly I feel uncomfortable too.  My hope is that we can both accept our feelings of discomfort and keep talking.” One of our favorite ways to remind ourselves to be present and model willingness is to maintain an awareness of our breath and our hands during the visit. We focus on slow diaphragmatic breathing and touch our fingertips together lightly, resting our hands in our lap. Keeping the hands soft somehow seems to help keep the conversation more compassionate.
            By demonstrating our own willingness, we may encourage a new conversation with the patient with chronic pain, and this brings us to our third recommendation: the new conversation needs to be about acceptance. Rather than distraction or suppression, acceptance is the most powerful intervention for reducing functional impairment associated in patients with back pain (Vowles, McNeil, Gross, McDaniel, Mouse, et al., 2007). Further, adding on a values focused component appears to augment acceptance interventions (Branstetter-Rost, Cushings, & Douleha, 2009).
            With these directions in mind, let’s turn our attention to the case of Ed and Dr. Andrews. As indicated in the following chapter introduction box, we focus on 2 processes and demonstrate how to use 3 techniques in our case example. Since Ed is an established patient with a chronic problem, we do not demonstrate use of behavior change interviewing tools in this chapter, but instead brief describe pathway program for delivering on-going care to patients with chronic pain.The Pain and Quality of Life (P & QOL) pathway is a multi-disciplinary, ACT-inspired program for the primary care setting. It includes a monthly group visit. While not necessary, it is ideal to partner with a behavioral health (BH) provider in creating a pathway program. The Primary Care Behavioral Health (PCBH) model provides details about how to integrate behavioral health providers into primary care (see Robinson & Reiter, 2007 for more information).

 
Case Example: Ed and Dr. Andrews
Ed is a 45-year-old Native American with chronic back pain, arthritis in both knees, and chronic headaches. Dr. Andrews has been his doctor for the past 5 years. About a year ago, Dr. Andrews enrolled him in the clinic’s Pain and Quality of Life (P & QOL) Pathway program, which requires him to attend monthly classes. These classes are lead by the clinic’s Behavioral Health Consultant (BHC), Dr. Wine.
Reason for Visit.Ed asked for an appointment to discuss back and knee pain and a change in pain medications.
Medical Status.Pain medications include a non-steroidal anti-inflammatory drug (NSAID), Amitriptyline, and a weak opioid.  Ed is overweight and has diabetes. He takes oral medications for diabetes. 
Patient Concern. He needs more of “his hydrocodone or something stronger”. He asked to see Dr. Andrews before he goes to the Pain and Quality of Life class, so that he gets “a prescription that works”.
Patient’s Life Context.  Ed lives with his wife of 22 years, two of their adult children, and two grandchildren. Ed is an artist who paints murals. He is able to make a decent living by painting in local restaurants and homes, and he supplements his work by selling fish he and his son catch during the fishing season. His wife works full-time as a clerk at a local casino. Ed loves his children and his wife. He has a brother who is an “alcoholic,” and Ed himself  doesn’t “touch the sauce”. He received mechanic training during his 4 years in the military, but injured his back at the end of training course and never worked as a mechanic. He takes two twenty-minute walks everyday at the high school track near his house and takes his diabetic medicines consistently. He also tests his blood sugars on a regular basis. He prefers fatty foods but with the support of his wife, he has taken to eating a salad almost every day for dinner.
Planning and Providing Treatment
          Because Ed is well known to Dr. Andrews, we will bypass the demonstration of behavior change interview tools demonstrated in the two previous chapters. For a new patient who suffers with chronic pain, use the Love, Work and Play and the Three T’s questions. Given that Ed’s care is enrolled in the Pain and Quality of Life (P & QOL) pathway, we begin with a brief description of this program, including the services provided by Dr. Wine, a psychologist who works with Dr. Andrews in this pathway.
Pain and Quality of Life Pathway
            The Pain and Quality of Life  (P & QOL) Pathway is a program that provides an on-going approach to caring for primary care patients with chronic pain. The PCP decides which patients to enroll in the program, and most often, patients selected for enrollment have long-standing problems with pain and are physically and psychologically dependent on pain medications. Many have additional medical problems, such as overweight or obesity, hypertension, cardiovascular problems, and diabetes. The P & QOL program saves PCP time, decreases unscheduled calls and visits, and facilitates appropriate medical care for co-morbid medical problems that may be given short shrift with these patients due to the dominating nature of pain complaints. In addition, the pathway creates an opportunity to obtain monthly measures of patient functioning, and provides patients with an opportunity to learn, apply, and evaluate behavioral interventions to improve quality of life. Patients receive medications at the end of the class, so no medical visit is required for prescribing. The PCP may participate or even conduct the class, depending on the PCP’s preference. A pain agreement specifies all elements of the Pain and QOL program, including attendance of the class, and patients sign the agreement at the time of enrollment. Table 7.1 describes the tasks of providers in this multi-disciplinary approach to primary care management of pain. Nurses may also help with this program by maintaining a registry of enrolled patients and working with the PCP(s) regarding obtaining prescriptions during the week prior to the monthly class.
Table 7.1. Pain and Quality of Life Pathway Activities for the Patient, PCP, and BH Provider

 
Ed’s Visit with Dr. Andrews
             Dr. Andrews started using the Bulls Eye Plan with Ed when he enrolled in the Pain and QOL program a year ago. The Plan supports continuity between Ed’s care in individual visits with Dr. Andrews and in class visits with Dr. Wine.
6. Accept TEAMS and Focus on Action
           About 6 months ago, Dr. Andrews began supporting Ed’s use of the Eagle Perspective when read about it in a class visit chart note. He asked Ed to describe it and learned that the Eagle Perspective was helping him improve his quality of life.
Eagle Perspective. This technique involves using the metaphor of an eagle, soaring high, to describe about a perspective that empower humans to plan a course and stick with it, even in the presence of painful TEAMS. An eagle headed for a nest notices a rabbit here and there, feels the shift in the wind, hears the screech of a red tail hawk, and continues to fly toward the nest. The PCP might suggest that the patient can simply take a deep breath and float up, letting go of both internal and external phenomena that distract from continuing on the chosen course.
            Ed first learned about eagle perspective in his monthly P & QOL Class. Dr. Wine had talked about the perspective of a mouse and the perspective of an eagle. Mouse looks at details, eagle looks at the big picture. A mouse perspective on a pain sensation invites struggle, while an eagle perspective allows pain to be a smaller part of the picture and supports acceptance. Ed identified with these ideas as they were consistent with his Native American beliefs. He also liked to imagine being supported by eagle feathers in moving from mouse to eagle perspective, as eagle feathers are used in Native American healing practices. When he was able to remember to use the eagle perspective, he felt more able to take heart and gather the courage he needed to do what was most important to him.
Dr. Andrews: Hello, Ed. I’m glad you came in today. Let’s see, you have class at 3:00, right.
Ed: Yes, I want you to change my prescription. I need something stronger or more pills. I’ve been out for a couple of days, and I am in bad shape.
5. Step Back from TEAMS and Unworkable Rules
            Dr. Andrews had used a technique to support by his and Ed’s stepping back from problematic TEAMS that sometimes came up during the course of their visit. This technique is called the TEAMS Sheet.
The TEAMS Sheet.In this technique, the PCP briefly explains each of the TEAMS elements and then asks the patient to use the TEAMS sheetto identify negative TEAMS that tend to “push” the patient around (See TEAMS Sheet handout on book CD). Ideally, the PCP will ask the patient to use it in the visit when it is introduced and then to practice sitting with the sheet at home for a few minutes everyday. At the end of the brief home practice periods, the patient can jot down a few notes about the TEAMS she or he observed, bringing the results to the PCP at the time of follow-up. Once the patient learns to use the TEAMS sheet, the PCP and patient can use the sheet in visits, particularly when interaction between the patient and PCP may be under the influence of negative TEAMS that limit both the patient and the PCP in experiencing the present moment in the visit. Dr. Andrews responded affirmatively to Ed’s request for more medicine and made a request that they use the TEAMS sheet and sit in silence observing for the first 2-3 minutes of the visit.
Dr. Andrews:Okay, I hear you, but let’s get off to a good start. Remember the way we started our last visit with sitting quietly and just trying to be present for a minute or two? Remember how we tried to notice our thoughts, emotions, associations, memories, and sensations and accept them while we sat in silence? I would like to do that now. To help us remember what we are trying to notice in our minds as we sit together, I have this reminder for each of us (Dr. Andrews handed Ed the TEAMS sheet in Figure 7.2 and modeled holding a second copy in his lap).
Ed:(Ed looks at the TEAMS sheet) Okay, you’re the doc. I’ll play your game.
Table 7.2. TEAMS sheet

 
Ed and Dr. Andrews sit together in silence, both distracted by noises in the hallway as well as their own TEAMS. However, as their eyes meet, there is a growing sense of connection. Dr. Andrews calls time at 3 minutes and then requests that both he and Ed use as few words as possible to speak, focusing on the most important things to say. He asks Ed to go first.
Ed: I am embarrassed and upset. I am a proud man and don’t want to beg for pills. I want to be strong for my family.
Dr. Andrews:I feel sad. I want to help you. I think pills look like a gift but they don’t have substance.
Ed:I want help; I’ve been grouchy at home.
Dr. Andrews:I am trying to use the eagle perspective right now, and I keep being drawn down to the thought that “I have to make your pain go away.”
Ed:(smiling) I get stuck on that too.
Dr. Andrews:Ed, I will write for you to have 5 more pills per month, and we know that is not the magic. The magic is the work you do in the class and the ways you apply it in your life . . . like when you taught your grand-daughter about eagle perspective.
Ed:(smiling) I think I need to make me one of these (holds up the TEAMS sheet) to use at home when I start to get wound up about the pain.
Dr. Andrews: You can have that one, Ed. It occurs to me that when you have the urge to use more of the medicine than prescribed, you can try just sitting with your TEAMS sheet for 5 minutes. It might be helpful. Will you give it a try?
Ed:Yes, Dr. Andrews, I will.
Dr. Andrews ended the visit by writing a few notes on a Bulls Eye Plan form (see Figure 7.1) and giving him a copy of the Bulls Eye Plan and the TEAMS sheet. He wanted to support Ed in using stepping back from TEAMS and unworkable rules at home.

Figure 7.1. The Bulls Eye Plan (Ed’s Individual Visit with Dr. Andrews)

 
 
 
 

 

           


Ed’s Visit to the Pain and Quality of Life Class
 Table 7.3 summarizes the agenda Dr. Wine follows in the Pain and QOL class. Use of a consistent agenda helps her to be efficient and encourages class members to develop group cohesion over time. Total class time is approximately 1 hour. The class begins with introductions and cohesion building activities and ends with commitment to value-based behavior change plans developed in the group. The BH provider maintains a packet of materials for each class member, distributes it at the beginning of the class, and collects it at the conclusion of the class. Member packets include quality of life assessment questions, a summary sheet for assessment findings during the calendar year, and Bulls Eye worksheets. Members of the class sign in on a prescription request sheet 15 minutes after the start of the group. The nurse working with the BH provider uses this list to prepare for distribution of prescriptions at the end of the class (or to arrange for pharmacy to fill prescriptions during the class for patients using the on-site pharmacy).
Table 7.3. Pain and Quality of Life Class Agenda

 
         During the class meeting, Ed discussed his plan for the previous month with Tom, another male member of the class. Tom had started the program shortly after Ed. They often sat next to each other, and Ed looked forward to talking with Tom. Ed had planned to explore attending a whittling group. He was having more problems with knee and back pain when he worked on  murals, particularly larger ones. He thought he might be able to make some money selling carvings for the Native American museum gift shop. His father had taught him to work with wood when he was younger, and he felt he had some talent for it. In talking with Tom, he decided that it was his letting his “bad mood get in the way”; he got distracted and didn’t follow through on the plan. They talked briefly about his values concerning carving. He knew he wanted to provide for his family and be independent, and realized, as he talked with Tom, that he also saw carving as a way to express his creativity and spirituality. In his brief one-to-one check-in with Dr. Wine, she pointed out that his quality of life scores hadn’t gone down, even though he’d had more problems with pain, depression, and being grumpy during the month. Her words of encouragement felt good.
Passengers on the Bus. At every group visit, one or two people have an opportunity to play the Passengers on the Bus game. As Dr. Wine’s skill instruction had gone a little long, there was time for only one class member to be the bus driver, and Ed asked to drive the bus. In this game, the bus driver states where s/he wants to drive the bus. The target is usually a place chosen because it represents a destination for a value-consistent action. Ed wanted to explore new ways to make a living, and exploring carving was a step in that direction. After stating the destination (e.g., attending a whittling group meeting), the driver recruits 4 or 5 class members to be passengers on the bus. The role of each passenger is to represent a specific barrier that the driver believes would distract or even derail his or her efforts to drive to the destination. Ed had clear ideas about his TEAMS elements, and he related them to five volunteers from the group. 
Thought: “I don’t have the energy. . . Life has sucked it out of me”
Emotion(s): Sad, bitter
Association(s): Vague association of worth relying on his providing for his family
 
Memories: Of injury in the military, of future he wanted
Sensations: Pain all over
Each passenger wrote down a few words to serve as reminders of what to say to Ed during his drive. Ed and his passengers walked to the front of the room. Ed put his hands on the imaginary wheel and the passengers lined up behind him in imaginary seats. Ed said, “Here, I go . . . I want to find a new way to make money to take care of myself and my family. I am going to the carving group. Knowing the rules of the game, the passengers started to circle around Ed, each saying something related to their assigned TEAMS element—“You’re broken. You’re worn out. You have pain all over your body. Life has chewed you up and spit you out.” Ed felt the urge to argue, to defend him self. He was able to accept that urge and give only a nod of acknowledgement as the passengers passed him by. He kept his eyes on the road for 4 minutes, and Dr. Wine called it. She asked him to give a brief summary of his experience, and he simply said, “I am learning”. Dr. Wine thanked Ed for his courage and his passengers for being helpful classmates.
Bulls Eye Plan. When Ed made updates to his Bulls Eye Plan in class, he included practicing the Eagle perspective during the first 5 minutes of his morning walk (see Figure 7.2). He also underlined the plan of going to the whittler’s group that he’d made in the previous month. At the end of the group, he stood proudly as he looked down at his plan and read to his classmates, “I will go to the whittlers’ group meeting next month”, and he knew he would.
 


Figure 7.2. The Bulls Eye Plan (from Ed’s work in the Pain and Quality of Life Class)

 
 
 
                                      
 
 

 
 
 
 


Summary
            This chapter was jam-packed with ideas for improving outcomes with chronic pain patients. While our case example involved the presence of a behavioral health provider working as a primary care team member, a PCP and nurse team alone can use most of the ideas we suggest. Let’s review the specifics. 
·         Define chronic pain as pain and unwillingness to have it. This gives you and the patient an opportunity to look at the costs of struggling against pain and to shift the focus of your work to improving the patient’s quality of life.
·         Unwillingness in one person can draw unwillingness in another, and this brings us to the second direction that we encourage you to explore in working with patients with chronic pain. Find ways to enhance your willingness level, so that you can better model acceptance.
·         Teaching acceptance techniques, in combination with value-based behavior change strategies is powerful medicine for patients with chronic pain. We like the 5 Senses and Balloon Breath exercises because they improve attention and reduce tension.
·         Chronic pain patients respond well to metaphors, such as Eagle Perspective and Bulls Eye planning, and, in class context, physical metaphors, like the Passengers on the Bus metaphor.
·         We encourage you to read more about the Primary Care Behavioral Health model (Robinson & Reiter, 2007) and partner with a behavioral health provider who will work with you as a primary care team member to improve outcomes for growing number of patients who are challenged by a very difficult problem. 
Preview
            In the next chapter, you will learn to apply ACT to another high impact group of primary care patients. Patients with symptoms of anxiety and depression are a large and growing group of patients.