Assessment and Treatment of Discomfort for People with Late-Stage Dementia

Transcription

1 412 Journal of Pain and Symptom Management Vol. 18 No. 6 December 1999 Original Article Assessment and Treatment of Discomfort for People with Late-Stage Dementia Christine R. Kovach, PhD, RN, David E. Weissman, MD, Julie Griffie, RN, MSN, CS, AOCN, Sandy Matson, RN, C, MA, and Sandy Muchka, RN, MS, OCN Marquette University (C.R.K.), Milwaukee; Palliative Medicine Program (D.E.W.) and Palliative Care (J.G., S.Mu.), Medical College of Wisconsin, Milwaukee; and Lakeland Nursing Home (S.Ma.), Elkhorn, Wisconsin, USA Abstract People with dementia have often been excluded from pain studies. However, there is evidence supporting that people with dementia experience frequent pain, often poorly assessed and undertreated, and that the etiology for pain descriptions is poorly documented. The Assessment of Discomfort in Dementia (ADD) Protocol is designed to: a) more accurately assess discomfort in people with dementia who can no longer verbally describe physical pain or affective discomfort; b) more accurately and thoroughly treat physical pain and affective discomfort; and c) decrease inappropriate use of psychotropic medication. The use of the ADD Protocol was studies with a convenience sample of 104 residents of long-term care with end-stage dementia. Use of the ADD Protocol was associated with a significant decrease in discomfort (t 6.56, p 0.000). The most frequently seen behavioral symptoms associated with discomfort were tense body language, sad facial expression, fidgeting, perseverant verbalizations, and verbal outburts. The ADD Protocol was also associated with a significant increase in the use of scheduled analgesics and non-pharmacological comfort interventions. The protocol was not associated with an increase in the use of prn analgesics or with prn or scheduled psychotropics. This study has provided some support for the notion that the needs of people with significant dementia can be discerned and treated. J Pain Symptom Manage 1999;18: U.S. Cancer Pain Relief Committee, Key Words Dementia, pain assessment, psychotropic drugs, assessment of discomfort Introduction Clinicians have been trained to follow the adage, Pain is whatever the experiencing person says it is, existing whenever the experiencing person says it does. 1 This conceptualization, however, excludes the person with severe Address reprint requests to: Christine R. Kovach, PhD, RN, Marquette University, Clark Hall, P.O. Box 1881, Milwaukee, WI , USA. Accepted for publication: February 4, dementia because verbalization is a necessary condition for the existence of the phenomenon. Language and cognitive skills are needed for the vast majority of pain assessment tools such as the commonly used McGill Pain Questionnaire, Verbal Descriptor Scale, and Visual Analogue Scale. 2 5 As the severity of dementia progresses and verbal skills become diminished, family members and clinicians increasingly rely on nonverbal cues, and subjective states are assessed by direct observation. The American Geriatrics Society Panel on Chronic U.S. Cancer Pain Relief Committee, /99/$ see front matter Published by Elsevier, New York, New York PII S (99)

2 Vol. 18 No. 6 December 1999 Assessment and Treatment of Discomfort 413 Pain in Older Persons (1998) 6 identifies the problem of pain assessment in the cognitively impaired and suggests that nonverbal behavior, vocalizations, changes in function, and caregiver reports be used to assess pain. Also muddying the assessment of pain in the cognitively impaired is their limited ability to introspect and report on their internal states. 7 A wide range of symptoms exhibited by the person with dementia may indicate a true physical source for discomfort For the person with late-stage dementia, however, a good deal of their discomfort comes from nonphysiological sources, for example, from difficulty sorting out and negotiating everyday life activities. 12 Common signs or symptoms that are displayed by people with late-stage dementia who experience physical or affective discomfort are: increased agitation, fidgeting, or repetitive movements; tense muscles, body bracing; increased calling out or repetitive verbalizations; decreased cognition, decreased functional ability or withdrawal; changes in sleep pattern and falling; increase in pulse, blood pressure, and sweating. 8,9,13 In order to establish a sound treatment strategy, there is a need to distinguish if the discomfort the person is experiencing is primarily physical or affective. The Assessment of Discomfort in Dementia (ADD) Protocol is designed to: a) more accurately assess discomfort in people with dementia who cannot verbally describe physical pain or affective discomfort; b) more accurately and thoroughly treat physical pain and affective discomfort; and c) decrease inappropriate use of as needed psychotropic medication. Analysis of the amorphous phenomenon of pain has been a source of inquiry for researchers and clinicians over many years. Because pain is recognized primarily through self-report, patients with dementia who cannot clearly communicate their discomfort are at particular risk for undertreatment. This article reports the development, pilot use, and evaluation of a protocol for the assessment and treatment of discomfort for people with dementia who are unable to clearly or consistently verbalize affective and/or physical states. Discomfort refers to an unpleasant physical or affective internal state that results from either physiological or nonphysiological stimuli. Several hypotheses guided this piloting of the Assessment of Discomfort in Dementia (ADD) Protocol on a sample of residents in long-term care: (1) Residents who are cared for using the ADD Protocol will demonstrate decreased behavioral symptomatology commonly associated with discomfort. (2) Residents who are cared for using the ADD Protocol will receive increased as needed and scheduled analgesics and decreased as needed and scheduled psychotropic drugs. (3) Residents who are cared for using the ADD Protocol will receive increased nonpharmacological comfort interventions Methods Pain Management Project Evaluation of the ADD Protocol was performed as one aspect of a larger education project to improve pain management practices in 57 Wisconsin long-term care facilities. Fiftyseven facilities were recruited on a first-come, first-serve basis, to participate in the project. Each facility was asked to select a team of 2 3 change agents (e.g., director of nursing, director of staff education) to participate in four educational programs spread over 1 year. Education topics for the 1-year project included pain assessment, drug and behavioral treatments, policy development, staff competencies, education programming, and quality improvement. Each team of facility change agents worked toward completion of an Action Plan, which included 14 target indicators of institutional commitment to pain management derived from the acute pain and cancer pain guidelines of the Agency for Health Care Policy and Research and the American Pain Society quality improvement guidelines for pain The addition of the ADD Protocol to the action plan addressed the discomfort needs of residents of long-term care who have a diagnosis of moderate to severe dementia. The first education session (8 hours) combined lecture and case-based workshops dealing with pain assessment for the cognitively intact resident and analgesic pharmacology. The second conference (4 hours), 3 months later, focused specifically on the cognitively impaired resident and incorporation of the ADD Protocol into institutional procedures. Participants were taught how to educate their staff regarding: a) assessment of the person with dementia who cannot verbally describe their

3 414 Kovach et al. Vol. 18 No. 6 December 1999 pain; b) nonpharmacologic comfort measures; c) appropriate use of pharmacologic interventions; d) collaboration with physicians; and e) useful documentation and care planning. At the conclusion of the second educational session, participants were invited to participate in a pilot assessment of the utility of the ADD Protocol. A volunteer sample of 32 nurses from 32 long-term care facilities was recruited. Reasons offered by staff from the 25 facilities who chose not to participate in the evaluation of the ADD Protocol were: a limited population that fit criteria for using the tool, deciding to focus on another aspect of pain management at the facility, and already having an established procedure for assessing and treating pain in the resident with a cognitive impairment. To facilitate participation by the facilities that did volunteer, a staff member of the pain project made a site visit to each facility to answer questions and review unique facility issues with the facility team. Participants were asked at the end of the project to complete a 5-item questionnaire evaluating the use of the ADD Protocol. Sample A convenience sample of 104 residents at the 32 facilities had the ADD Protocol implemented and its use evaluated. Residents were eligible if they had dementia, were unable to communicate unmet needs, and exhibited signs or symptoms that commonly indicate the presence of physical pain or affective discomfort. The project had full approval of an Institutional Review Board for the protection of human subjects. Residents and family members were informed of the project and had the opportunity to participate or not participate. The residents who participated ranged in age from years with a mean age of 85 years. Most had a diagnosis of probable Alzheimer s disease, multi-infarct dementia, or dementia of unknown etiology. Two residents were developmentally disabled, one had Huntington s disease, and several had dementia associated with stroke or Parkinson s disease. Reasons given for initiating the ADD Protocol were: physical symptoms (59), behavioral changes/ challenges (38), sleep changes (2), and other (5, i.e., history of pain and terminal status). No Table 1 Assessment for Discomfort in Dementia (ADD) Protocol Name: Reason For: Possible Triggers: 1. Assessment N/A Notes BP, P, sweating T Eyes, nose, mouth Skin Heart/Lungs Abdomen BM/Rectal check Extremities Multistix urine MMSE Other S&S if done 2. d R/T Current or past Hx of pain 3. If assessment is negative, initiate nonpharmacologic interventions 4. If unsuccessful, medicate with nonnarcotic analgesic per written order 5. If symptoms persist, consult with physician/other health professional or medicate with as needed psychotropic per written order 6. Evaluation documented 7. Follow-up plan initiated Signature: Date: Time:

4 Vol. 18 No. 6 December 1999 Assessment and Treatment of Discomfort 415 further description of the specific symptoms or behaviors was included in the data collection. The ADD Protocol Use of the ADD Protocol was triggered when a patient displayed signs or symptoms of possible physical or affective discomfort. The form that was used to facilitate implementation and documentation of the ADD Protocol is reproduced in Table 1. The following steps were followed by nurses (RNs or LPNs) who used the protocol: 1. Physical causes for discomfort such as inflammation, infection, acute illness, chronic conditions, etc. were the first priority for the assessment. Nurses were educated through classroom instruction and handouts to perform a more thorough assessment and to be more alert for common physical problems in this population: arthritis, old fracture site pain, peripheral neuropathy, infections (particularly pneumonia, urinary tract, and skin and soft tissue infections). 10,11,17,18 If the source of discomfort was identified from the physical assessment, interventions or consultation with the appropriate health care provider were instituted accordingly. 2. As a part of the physical assessment, the patient s history was explored. Nurses were educated to check the medical records and consult with the family for a current or past history of adult fractures, arthritis, headache, neuropathy, falls, or relevant pain symptomatology. Nurses were encouraged to determine if any of the current signs or symptoms were likely to be associated with any of these pain sources and to consult with the physician/health care provider as needed. 3. If the physical assessment was negative, nurses were told to assume that the symptoms may be from either a physiological or nonphysiological source. Nonpharmacological comfort interventions were implemented in an attempt to ease the person s troubled state. Interventions were planned based on a concern for creating an appropriate balance between sensory calming and sensory stimulating experiences. Staff were trained to be aware of each patient s stress threshold and to plan activities and a daily schedule that would not exceed this threshold. 19 Examples of possible interventions are listed in Table If nonpharmacologic interventions were unsuccessful, staff were educated to administer an as needed nonopioid analgesic. It is at this point that staff have, in the past, often administered an as needed psychotropic. Nurses asked physicians for an as needed nonopioid analgesic order for each patient who did not have a current order and physicians ordered the analgesic of their choice. If the response was at all positive, the nurse asked for an order for a scheduled analgesic such as 500 mg of acetaminophen three times a day. 5. If there was not a response to a trial with an as needed analgesic, the staff nurse could consult with the advanced practice nurse, medical physician, or geriatric psychiatrist. Nurses were instructed in escalation of analgesics using the World Health Organization (WHO) analgesic ladder and could request an order for a stronger Table 3 Behavioral Symptomatology Categories Soothing/supportive verbal communication Music therapy Sensory stimulation Rummaging, busy hand activities Table 2 Nonpharmacologic Comfort Intervention Categories Other Soothing/supportive touch Therapeutic Massage Physical exercise/movement Cold or heat therapy Wandering requiring intervention Fidgeting Intense repetitive verbalization Physical aggression Tearfulness Delusions Withdrawn behavior Sad or frightened facial expression Tense body language Tense repetitive movement Verbal outburst toward another person Repetitive waking during the night Phobias or fears Hallucinations Noisy breathing

5 416 Kovach et al. Vol. 18 No. 6 December 1999 dose or analgesic. If an as needed psychotropic drug was prescribed for these symptoms, it could be given per order or a request could be made for a psychotropic drug order. Measurement The data collection tool was made as userfriendly as possible to encourage nurses to participate in this pilot testing of the protocol. There was no blinding to the treatment and nurses who collected the data were the same nurses who initiated the ADD Protocol. Nurses collected data prior to instituting the ADD Protocol and 2 weeks after implementing the protocol for a particular resident. For both preand post-assessments nurses were asked to document the frequency of the following variables over the previous 7 days: scheduled and as needed analgesic and psychotropic medication administered; use of nonpharmacological interventions specifically for the purpose of decreasing resident s discomfort; and demonstration of behavioral symptomatology commonly associated with discomfort. The nonpharmacological interventions and behavioral symptomatology categories are listed in Tables 2 and 3 and were developed from a review of the literature and consultation with a pain specialist and two dementia specialists. 12,20,21 The Discomfort- DAT tool was consulted in developing the categories and providing nurses with a definitional instruction sheet to be used when measuring variables. 13 The Discomfort-DAT tool was adapted to decrease the time involved in data collection. Interrater reliability estimate, calculated as percentage agreement for two nurses assessing four residents, was 86% for the total tool. Interrater reliability for medication use was 100%; for nonpharmacological comfort measures used, 76%; and for behavioral assessment of discomforting symptomatology, 87%. Results The number of behavioral symptoms evident, nonpharmacological comfort interventions used, and doses of medication administered for a 7-day pre- and post-intervention period were calculated for each participant. The distributions of these scores were not highly skewed so the mean was used as a measure of central tendency and the dependent t-test was the inferential statistic used. For the 7 days prior to instituting the ADD Protocol, this sample displayed an average of behavioral symptoms associated with discomfort (SD 16.78). Following use of the protocol, this was reduced to behaviors (SD 16.52). This is a statistically significant difference (t 6.56, P ). The most frequently displayed behaviors at pretesting were: tense body language, sad facial expression, fidgeting, perseverant verbalizations, and verbal outbursts. These were also the most frequent behaviors at post-testing, though fidgeting was slightly more frequent than sad facial expression at post-testing. The behavioral symptomatology that showed the largest mean changes were tense body language and sad facial expression. As seen in Table 4, use of the ADD Protocol was associated with increased use of scheduled analgesics and increased use of nonpharmaco- Table 4 Differences in Intervention Use Pre- and Post-ADD Protocol Variable Mean pre Mean post t PROB PRN analgesic (SD 4.81) (SD 5.63) Scheduled analgesic a (SD 11.21) (SD 11.61) PRN psychotropic (SD 0.31) (SD 1.19) Scheduled psychotropic (SD 16.41) (SD 16.30) Nonpharmacological a Comfort interventions (SD 11.37) (SD 13.17) N 104. a Statistically significant at the 0.05 or less alpha level.

6 Vol. 18 No. 6 December 1999 Assessment and Treatment of Discomfort 417 logical comfort interventions. Use of the protocol was not associated with changes in use of as needed analgesics or with as needed or scheduled psychotropics. The most commonly administered nonopioid analgesic was acetaminophen. Also used commonly were ibuprofen and propoxyphene. Examination of descriptive statistics reveals that the most frequently used nonpharmacological comfort interventions at both pre and post-testing times were: soothing/supportive verbal communication, soothing/supportive touch, physical exercise/movement, and sensory stimulation respectively. The use of music therapy and therapeutic massage, however, had the greatest increase in use from pre- to post-testing. Results of the questionnaires completed by the 32 nurses who used the ADD Protocol revealed that four respondents (12%) felt the protocol had no real impact, 14 nurses (44%) found it somewhat helpful, and 14 (44%) found it very helpful. Open-ended responses on the questionnaire revealed that the main reported benefits of using the ADD Protocol were increased staff awareness of residents state of discomfort and improved assessments. Problems staff had implementing the protocol were a lack of time, problems getting staff sufficiently educated regarding the project, and resistance to change. Discussion If improvements in the care delivered to older adults with dementia are to be realized, efforts must focus on establishing an array of assessment and treatment strategies that address the unique symptom control needs of this growing population. Nurses are the health care professionals who have the most direct contact with the resident in long-term care, and thus should play a key role in noting subtle changes in the patient s condition/behavior that may signal a need for intervention. Physical pain and affective discomfort may be manifest with similar behavioral expressions. When behaviors associated with dementia are examined solely from the realm of mental health, physical needs may be neglected. Yet, when physical needs are assessed and treated without attention to the affective needs of people with impaired cognition, quality of life may be further compromised. This sample demonstrated a significant decrease in discomforting symptomatology following use of the ADD Protocol. This finding is encouraging because it supports the belief that the discomfort experienced by people with late-stage dementia is amenable to treatment. Staff reported that using the protocol made them more aware of the resident s state of discomfort and improved assessments. Use of the protocol was also associated with a small but statistically significant increase in the use of scheduled analgesics. Since there is evidence that this population is often undertreated for pain, improved assessments may be one mechanism for increasing the use of analgesics for targeted discomfort needs. 11,22,23 Interestingly, even though there was some increase in the use of as needed analgesics, the difference was not statistically significant. Use of as needed analgesics is Step 4 of the ADD Protocol. This finding may be attributed to Steps 1, 2, and 3 of the protocol being effective and therefore not necessitating the use of Step 4. Lack of use of analgesics may also be due to hesitancy on the nurse s part to administer analgesics as a part of an assessment process rather than strictly as an intervention. Nurses are traditionally educated to administer as needed analgesics in response to reports of pain and to evaluate effectiveness of pain treatment. 24 For the person with dementia who cannot report pain symptoms, the use of a limited trial of analgesics in response to a broad array of physical and behavioral symptoms may be a method of sorting out the clinical picture and providing the most appropriate intervention for the patient. A current study is examining more closely the presence and dynamic of nurses hesitancy to administer analgesics to this population both for the purposes of assessment and treatment. Psychotropic drug use was not significantly altered in this study though there was a slight increase in the use of as needed psychotropics over the study period. Psychotropic drug use is currently so highly regulated in longterm care facilities that use of these drugs may not have been easily altered. Psychotropic drugs are an important palliative intervention for reducing cognitive/emotional suffering of the patient in some circumstances. Future work is needed, though, to determine how often psychotropic drugs are used when a person

7 418 Kovach et al. Vol. 18 No. 6 December 1999 with late-stage dementia is experiencing unrecognized physical pain that manifests with behavioral symptoms. Psychotropic drugs may actually mask the signs of physical pain and contribute to undertreatment. For example, a psychotropic drug may decrease calling out or fidgeting behavior, common signs of physical pain in people with late-stage dementia. The use of nonpharmacological comfort interventions was significantly increased in this study. Nonpharmacological comfort interventions often carry a low risk of iatrogenesis and can be administered at a low cost and in a short time period. There is a need for further research which examines the effects of utilizing certain nonpharmacological interventions to treat specific discomforting symptomatology. This pilot study yielded promising results but several limitations were evident. The lack of a control group does not allow causal claims to be made regarding the findings. Other factors such as increased attention provided to the patients could have accounted for the decrease in discomforting symptomatology. The volunteer sample impedes generalizability. More rigorous measurement of variables of interest using a controlled and blinded data collection procedure is warranted. Descriptive data detailing the process and outcome of using the protocol would have been helpful in delineating the relative use and effectiveness of each step of the protocol. For example, it is not known how often consultation with the physician was used with the protocol, or if the use of the ADD Protocol was associated with a change in frequency or quality of consultations with other health care professionals. Also, use of multiple t-tests raises the risk of a Type I error. Future research utilizing an experimental design is planned. As is true with most beginning research, this study has probably raised more questions than provided clear answers. Key areas to explore in improving comfort care to people with latestage dementia include: formalizing the institution s practice of assessing for subtle changes in the patient that may signal physical pain or affective discomfort; creating mechanisms by which behavioral symptoms target both an examination of physical and mental health status; improving nurses assessment skills; increasing the use of analgesics as a part of an assessment process that may include analgesic and dose escalation; increasing nurses knowledge and use of nonpharmacological comfort interventions; and improving nurses ability to communicate a cogent assessment of the patient s condition and to negotiate for comfort care interventions with the physician. People with late-stage dementia are unable to advocate for improved treatment. Nurses in long-term care should be experts in providing palliative care to this population. Barriers to improving palliative care abound and include lack of awareness of the needs of this group, lack of appropriate reimbursement for palliative care, and resource allocation biased toward curative services. 25 Long-term institutions are also hampered by their relatively small size and by geographical separateness from major medical centers and academic institutions. This pilot study has provided some support for the notion that needs of this group can be recognized and treated. It is clear, however, that improvements in palliative care services are needed for the silent but growing population of people with late-stage dementia who are unable to clearly or consistently communicate their needs. Acknowledgments The authors gratefully acknowledge support for this project from the Helen Bader Foundation, Faye McBeath Foundation and the Eastern Wisconsin AHEC, Inc., under DHHS Cooperative Agreement No. STC-M 5U76PE-OO234-04, with the Division of Medicine, Bureau of Health Professions, Health Resources and Services Administration, U.S. Department of Health and Human Services. References 1. Puntillo K, Tesler MD. Pain. In: Carrieri-Kohlman V, Lindsy AM, West CM, eds. Pathophysiological phenomena in nursing. Philadelphia: W.B. Saunders, Melzack R, Katz J. The McGill pain questionnaire: appraisal and current status. In: Turk DC,

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