NoPAIN: Observations on the practice of pain assessment and management Joshua Hauser, MD Judy Paice, RN, PhD

1. NoPAIN: Observations on the practice of pain assessment and management Joshua Hauser, MD Judy Paice, RN, PhD

2. �Clearly, grief and pain are not exactly identical�grief and pain proceed together, intertwined, in such a way that it becomes almost impossible to experience them apart� (On a man who has lost his son to AIDS) David Morris, The Culture of Pain, Calif. U. Press, 1991 I want to start with two cases. The first is from our palliative care service a few months ago It�s of an 82 yo woman who had not been to a doctor in over 30 years and was admitted to the hospital with fatigue and dyspnea. An echocardiogram revealed severe mitral and tricuspid regurgitation. She was also found to have occult blood in her stool and an iron-deficiency anemia. She had lost 20-30 pounds in the last several months. She decided, with her son, that she did not want further intervention or investigation, either of her cardiac status or of her anemia. Her physician called a palliative care consult � �I�m not sure why, but I think it will help� he said when I talked with him. Her son wondered �Is it OK to not do anything.?� I want to start with two cases. The first is from our palliative care service a few months ago It�s of an 82 yo woman who had not been to a doctor in over 30 years and was admitted to the hospital with fatigue and dyspnea. An echocardiogram revealed severe mitral and tricuspid regurgitation. She was also found to have occult blood in her stool and an iron-deficiency anemia. She had lost 20-30 pounds in the last several months. She decided, with her son, that she did not want further intervention or investigation, either of her cardiac status or of her anemia. Her physician called a palliative care consult � �I�m not sure why, but I think it will help� he said when I talked with him. Her son wondered �Is it OK to not do anything.?�

3. Outline - Case - Palliative Care as a Model - Barriers - Guidelines - Qualitative/Quantitative assessment - Summary

4. Case� A 77 yo man with lung cancer is admitted to a palliative care unit for worsening back and arm pain. He reports the pain is at times throbbing and at times �shooting.� It leaves him exhausted. At home he had been taking 30 mg of long acting morphine twice a day but had missed several doses because his local pharmacy was out of the medication and he did not have transportation to another pharmacy.

5. �Case He is treated initially IV morphine with a patient controlled (PCA) machine. Although he reports his pain is 7/10 on a numerical scale, he also rates it as �mild.� On further questioning, he says �it�s not really the physical pain that�s bothering me, but I wonder if this means my cancer is getting worse.� He is hesitant to press the button on his PCA. His family wonders how they will know if he is in pain and if they can push the button for him. I want to start with two cases. The first is from our palliative care service a few months ago It�s of an 82 yo woman who had not been to a doctor in over 30 years and was admitted to the hospital with fatigue and dyspnea. An echocardiogram revealed severe mitral and tricuspid regurgitation. She was also found to have occult blood in her stool and an iron-deficiency anemia. She had lost 20-30 pounds in the last several months. She decided, with her son, that she did not want further intervention or investigation, either of her cardiac status or of her anemia. Her physician called a palliative care consult � �I�m not sure why, but I think it will help� he said when I talked with him. Her son wondered �Is it OK to not do anything.?� I want to start with two cases. The first is from our palliative care service a few months ago It�s of an 82 yo woman who had not been to a doctor in over 30 years and was admitted to the hospital with fatigue and dyspnea. An echocardiogram revealed severe mitral and tricuspid regurgitation. She was also found to have occult blood in her stool and an iron-deficiency anemia. She had lost 20-30 pounds in the last several months. She decided, with her son, that she did not want further intervention or investigation, either of her cardiac status or of her anemia. Her physician called a palliative care consult � �I�m not sure why, but I think it will help� he said when I talked with him. Her son wondered �Is it OK to not do anything.?�

6. Case - Patients� understanding of scales - The meaning of pain - The impact of pain on patients� function - The role of the family caregivers - Access to medications - Others�

7. Palliative Care as a Model Domains of experience Physical Psychological Spiritual Existential Social Where is pain?

8. Palliative Care as a Model Where is Pain? Physical: My arm is throbbing Psychological: I�m angry having to live with this pain Spiritual: Is this what G-d meant for me to go through? Existential: Why is this happening to me Social: I�m in pain and I can�t leave the house

9. Obstacles to Pain Relief Healthcare Professional Lack of education related to pain Poor assessment of pain Concern about use of controlled substances Fear of addiction and tolerance Concerns about side effects Inadequate time Little censure for inadequate attention to pain The interdisciplinary team: Role of RN, MD, SW, Pharmacists

10. Obstacles to Pain Relief Patients and Families Reluctance to report pain Reluctance to take pain medications Concerns about addiction/tolerance/side effects Lack of knowledge regarding use of pain medications Caregiver burden

11. Obstacles to Pain Relief System Confusion regarding drug safety (e.g. COX-2) Limited availability of multidisciplinary pain clinics Restrictive regulation of controlled substances Worsening problems of availability of opioids Significant limits on numbers of pills by reimbursement agencies Reimbursement limits and disparities Time constraints

12. Guidelines Cardiology: 1. �Get with the Guidelines� program 2. CPR Palliative Care: 1. AHCPR-based pain algorithm 2. Pain as �Fifth Vital Sign� Do they change behavior?

13. More recently, the Institute of Medicine has published a definition that is even broader than the WHO definition and emphasizes that palliative care is a term that may include hospice but may not. In our palliative care unit at Northwestern, we have many patients who are not in hospice. And we have patients in our hospice who have never been to our palliative care unit � indeed it is often their goal to stay away from it. So what does the institute of medicine say about palliative care? �Palliative care seeks to prevent, relieve, reduce or soothe the symptoms of disease or disorder without effecting a cure� Palliative care in this broad sense is not restricted to those who are dying or those enrolled in hospice programs� It attends closely to the emotional, spiritual, and practical needs and goals of patients and those close to them.� More recently, the Institute of Medicine has published a definition that is even broader than the WHO definition and emphasizes that palliative care is a term that may include hospice but may not. In our palliative care unit at Northwestern, we have many patients who are not in hospice. And we have patients in our hospice who have never been to our palliative care unit � indeed it is often their goal to stay away from it. So what does the institute of medicine say about palliative care? �Palliative care seeks to prevent, relieve, reduce or soothe the symptoms of disease or disorder without effecting a cure� Palliative care in this broad sense is not restricted to those who are dying or those enrolled in hospice programs� It attends closely to the emotional, spiritual, and practical needs and goals of patients and those close to them.�

14. Guidelines and Behavior Change �Get With the Guidelines� American Heart Association (AHA) Extensively promoted Outcomes 24 hospitals, 1738 patients Quarterly, didactic and best-practice presentations and team workshops Smoking cessation counseling: 48% to 87% Lipid treatment: 59 to 81 Cardiac rehabilitation referrals: 34 to 83 Aspirin, beta blockers, ACE inhibitors maintained high use LaBresh, et al, Get with the Guidelines for Cardiovascular Secondary Intervention, Archives of Internal Medicine, 164: 2003-9, 2004.

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16. Guidelines and Behavior Change Cardiopulmonary Resuscitation (CPR) Extensive promotion and training Certification Outcomes One hospital, consecutively observed cardiac arrests 67 patients Chest compressions too slow: 28% Compression depth too shallow: 37% Ventilation rates too high: 61% Abella, et al, Quality of Cardiopulmonary Resuscitation During In-Hospital Cardiac Arrest, JAMA 293: 305-10, 2005

17. Polypharmacy: The Duffel Bag Test

18. Pain Guidelines Cancer Pain: 13 guidelines (ACS, NCCN, ACCC, APS, ASA, WHO, AHRQ, etc.) Chronic Pain: 10 guidelines (AGS, AAN, AAPM, AMDA, etc.) EOL/Pall. Care: 9 guidelines (AMA, APS, ASA, AGS, etc.) Geriatric Patients: 3 guidelines (AGS, AMA, AMDA) National Guidelines Clearinghouse (guidelines.gov): 556

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20. Guidelines and Behavior Change Pain as Fifth Vital Sign - Some promotion - Some misunderstanding: "I read the article "Taking the Fifth (vital sign)" and I'd like to clarify a couple of points. First, pulse oximetrry has already been named the fifth vital sign, and secondly, pain isn't a sign - it's a symptom. � We try to educate our nurses in school to differentiate between a sign and a symptom. Since you cannot see pain, it's subjective and, therefore, will never be a sign." Letter to the Editor, RN Magazine, Oct. 2004 Outcomes: No data

21. Guidelines and Behavior Change AHCPR (AHRQ) guidelines - moderately promoted Outcomes 81 cancer patients Randomized to standard care or guideline based algorithm for opioids Brief pain inventory, Memorial Symptom Assessment scale, Functional assessment of cancer therapy scale Significant differences in pain scores but no differences in quality of life and other symptom scores Du Pen, et al, Implementing Guidelines for Cancer Pain Management: Results of a Randomized Controlled Trial, J Clin Onc, 17: 361-70, 1999

22. Guidelines and Behavior Change Overall points: Few data concerning process of adoption/ integration of guidelines into practice. Need for clear endpoints to measure success. Need to balance a multidimensional and subjective symptom with clear endpoints.

23. Qualitative vs. Quantitative �Data� Back to our case�.A 77 yo with lung cancer and pain. Two clinical questions: 1. �On a scale of 0 to 10, where 0 is no pain at all and 10 is the worst pain you�ve ever experienced, what would you rate your pain?� MD: 4 RN: 7 2. �What is your pain like?� �It�s like a drill boring into my arm and it reminds me of when I was first diagnosed�it makes me wonder if I�m going downhill.�

24. Summary - Challenges of integrating multiple facets of pain experience - A range of barriers: patient/family, health care professional, system - Minimal data concerning impact guidelines - Need to integrate quantitative and qualitative methodology in assessment and analysis