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Underrecognition and Undertreatment of Pain and Behavioral Symptoms in End-Stage Dementia

American Journal of Hospice & Palliative Medicine® 1-5 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114559069 ajhpm.sagepub.com

David B. Brecher, MD, FAAFP, FAAHPM1 and Tasheba L. West, PharmD, BCPS, MS2

Abstract End-stage dementia, a terminal condition, is associated with a high prevalence of physical pain and behavioral symptoms. As these patients often have a decreased ability to express their symptoms, they are often underrecognized and undertreated. This article proposes opportunities to improve patient care. The article underscores the role of assessment scales to optimize behavioral management for patients with dementia and discusses the value of pain management to improve behavioral symptoms. Additionally, a collaborative interdisciplinary team, including palliative medicine, pharmacy services, and spiritual support can optimize patient care and develop a plan of care. Keywords end-stage dementia, pain management, behavioral symptoms, assessment scales, palliative care, interdisciplinary team

Introduction Palliative medicine providers are often consulted to assist with symptom management in patients with end-stage diseases, including dementia. Dementia, which is commonly associated with advanced age, has a high prevalence of pain (12%-76% of patients with dementia).1 Patients with advanced dementia often have decreased ability to verbally communicate their symptoms. With this limitation, it is often difficult to understand the cause of aggressive or agitated behavior, but an etiology and assessment of pain and behavioral symptoms should be considered in the differential diagnosis. Refractory behavioral challenges make the diagnostic process even more challenging. As there is still an ongoing debate as to whether dementia is a ‘‘terminal’’ disease,2,3 the role of opioids for comfort measures has been questioned. With longer life expectancy, age is the number one risk factor for dementia, and appropriate treatment guidelines to improve behavioral symptoms would be valuable during hospitalization. We present a patient with advanced dementia admitted to a psychiatric unit for intractable behavioral symptoms. Working to establish goals of care, validating the use of behavioral observation scales, and assessment of unaddressed and undertreated pain and behavioral symptoms are the focus of our discussion.4

Patient Story A 76-year-old male was admitted to a Geropsychiatric unit after assaulting a staff member at the assisted living facility

where he was residing. His psychiatric history included advanced dementia with agitation. A recent decrease in oral intake and pocketing of food was noted upon admission. Physical examination revealed minimal muscular rigidity but he remained ambulatory. He was nonverbal and after clinical review determined not to have decision-making capacity. Laboratory examination including blood count (CBC), metabolic panel (BMP), urinalysis, vitamin B12, and thyroidstimulating hormone level were within normal range, and imaging results showed no acute abnormalities. Admitting diagnosis by the psychiatrist included dementia with behavioral disturbance. The patient did not have a Physician Orders for Life-Sustaining Treatment but did have an advance directive indicating ‘‘do not resuscitate’’ and naming his daughter as his health care surrogate. Upon admission, he was noted to be wandering the hospital ward and incontinent of urine. Speech therapy evaluation noted dysphasia. His Montreal Cognitive Assessment score was 0 of 30 (less than 10

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Adult Palliative Medicine Service, MultiCare Health System, Tacoma General Hospital, Tacoma, WA, USA 2 Department of Pharmacy, Pharmacy Specialist, Tacoma General Hospital, Tacoma, Washington, WA, USA Corresponding Author: David B. Brecher, MD, FAAFP, FAAHPM, Adult Palliative Medicine Service, MultiCare Health System, Tacoma General Hospital, 315 Martin Luther King Jr Way, MS 315-C4-FCC, Tacoma, WA 98405, USA. Email: [email protected]

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American Journal of Hospice & Palliative Medicine®

2 Table 1. Commonly Used Behavioral Scales in Dementia.

Table 2. Commonly Used Pain Scales for Patients With Dementia.

Commonly Used Behavioral Scales for Patients With Dementia

Commonly Used Pain Scales for Patients With Dementia

Mini-Mental State Examination (MMSE) Montreal Cognitive Assessment (MCA) Neuropsychiatric inventory Behavioral Pathology in Alzheimer Disease Rating Scale (BEHAVE-AD) Brief Agitation Rating Scale Overt Agitation Severity Scale

Assessment of Discomfort in Dementia Protocol (ADD) Discomfort in Dementia of the Alzheimer’s Type (DS-DAR) Pain Assessment in Advanced Dementia Scale (PAINAD) Face, Legs, Activity, Cry, Consolable (FLACC) Scale Bodies In Pain Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC)

described as advanced dementia; Table 1). Initial medication therapy prescribed by the psychiatrist included continuation of quetiapine 150 mg orally daily and added risperidone 0.5 mg orally twice daily. After 1 week of hospitalization with minimal improvement in agitation or oral intake, risperidone was discontinued and oral lorazepam 0.5 mg every 6 hours as needed was prescribed for acute agitation. On the 10th day of hospitalization, quetiapine was increased to 75 mg 3 times a day and 150 mg at bedtime. Two days later, and without clinical improvement, his daughter asked the medical team to consider a transition of the goals of care from active medical treatment to one of comfort and to allow a natural death. This request was honored and all antipsychotics were discontinued. In this opioid-naive patient, a regimen of both immediate-release oral morphine 0.5 mg and oral lorazepam 0.5 mg were prescribed every 6 hours by the psychiatrist. After 2 days, the psychiatrist increased the lorazepam to 1 mg orally every 6 hours and increased morphine to 10 mg orally every 4 hours as needed for ‘‘agitation.’’ There was no formal assessment or documentation of pain nor was it clear from the medical record what the rationale was for the opioid dose adjustment. Quetiapine 25 mg 3 times daily was added due to ongoing aggressive behavior, which included ripping off and defecating into his clothes. The patient had a respectful death 1 week later with no further escalation of medications.

Assessing Behavioral Symptoms in Patients With Dementia Agitation, irritability, restlessness, confusion, combativeness, and changes in appetite are behaviors that may indicate pain in patients with dementia.5 Lack of ability for patients with severe dementia to verbally communicate often makes it difficult to ascertain the etiology of the agitation or aggression. For these reasons, pain often goes unrecognized and untreated.6 Patients with dementia having pain and presenting with agitation are frequently treated with psychotropic medications and restraints instead of performing a thorough behavioral and pain assessment.6,7 Constipation, infection, pressure ulcers, and procedures may be acute causes of behavioral changes. Guarding, moaning, crying, and grimacing are also behaviors often seen in end-stage dementia that should merit medical assessment. Medical providers should engage with patients having dementia and assess whether aggressive behavior is caused

by pain or psychiatric symptoms. The use of behavior pain assessment tools may be valuable in these patients, especially in those who are nonverbal. Multiple assessment tools for patients with dementia are available (Tables 1 and 2). These scales are helpful tools to screen for pain and behavioral symptoms in older adults with cognitive impairment and limited ability to communicate.8 Agitation may be measured and monitored using the Cohen-Mansfield Agitation Inventory (CMAI) to determine the impact of treatment on agitation. The Mini-Suffering State Examination (MSSE) was recommended by Aminoff and Adunsky as a valid clinical tool to evaluate the patient’s condition and level of suffering in endstage dementia.9 The MSSE might be useful in determining which patients with dementia may benefit from a palliative medicine consultation. Including the palliative care team earlier on in hospitalizations may assist in a thorough clinical evaluation of patients including pain management and establishing goals of care.

Treatment Recommendations Undertreatment of pain is a frequently noted concern in patients with dementia at the end of life.1,10 There are concerns that providers are hesitant to utilize opioids to treat pain in older patients.11 In a study in patients at least 85 years old, Manfredi et al concluded that low-dose, long-acting opioids could lessen agitation in advanced dementia.12 These patients had persistent severe agitation, despite psychotropic medications. A study by Husebo et al also concluded that compared to a control group, individual daily stepwise pharmacologic treatment of pain significantly reduced agitation in residents of nursing homes with moderate to severe dementia.7 A clinical protocol for assessment and management of unmet symptom needs including pain in patients with dementia was also assessed by Kovach et al.13 This protocol included the use of analgesics and resulted in the majority of the treatment group receiving pain medication. With analgesic treatment, this group had significantly less discomfort than the control group and behavioral symptoms returned to baseline. An analgesic trial should be attempted for patients with dementia found to be having pain based on an appropriate assessment tool. Analgesics, including opioids, should be prescribed based on medical history, organ function, and tolerance. Awareness of different routes of administration, including

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Table 3. Pain Assessment in Advanced Dementia Scale (PAINAD).21,a Behavior

0

1

Breathing independent of vocalization

Normal

 Occasional labored breathing  Short period of hyperventilation

Negative vocalization

None

Facial expression

Smiling or inexpressive

Body language

Relaxed

 Occasional moan or groan  Low-level speech with a negative or disapproving quality  Sad  Frightened  Frown  Tense  Distressed pacing  Fidgeting

Consolability

No need to console

 Distracted or reassured by voice or touch

2       

Noisy labored breathing Long period of hyperventilation Cheyne-Stokes respirations Repeated troubled calling out Loud moaning or groaning Crying Facial grimacing

     

Rigid Fists clenched Knees pulled up Pulling or pushing away Striking out Unable to console, distract, or reassure

Score

Total score a Adapted with permission from Warden et al.21 Instructions: Observe the patient for 5 minutes before scoring his or her behaviors. Score the behaviors according to the chart. Definitions of each item are provided in the table. The patient can be observed under different conditions (eg, at rest, during a pleasant activity, during caregiving, and after the administration of pain medication). Scoring: The total score ranges from 0 to 10 points. A possible interpretation of the scores is 1 to 3 ¼ mild pain; 4 to 6 ¼ moderate pain; and 7 to 10 ¼ severe pain. These ranges are based on a standard 0 to 10 scale of pain but have not been substantiated in the literature for this tool.

liquid, parental, rectal, or topical, based on patient physical and/ or mental needs, may improve compliance. In terminal patients with dementia who are opioid naive, a conservative opioid dosage should be considered with plans for close monitoring and titration as needed to reduce pain and thus agitation. Studies have shown that a suboptimal analgesic or opioid regimen is associated with pain and agitation and ultimately a lower quality of life.14 Research has validated other concepts to improve behavioral symptoms in patients with dementia. This includes ensuring patient safety, assessing for delirium in psychiatric morbidities (ie, depression and hallucinations) that are most amenable to pharmacologic treatment and attempting to identify antecedent behaviors that contribute to patient symptomatology.15

Discussion With about 10,000 people signing up for Medicare daily, and 2010 US data revealing life expectancy for men to be 75 and women to be 82, dementia has become a major health issue. Nearly 14 million Americans are expected to have dementia by 2050.16 Pain, agitation, and aggression will pose a major symptom burden that is often difficult to treat, especially in nonverbal patients. The medical community will need to improve the evaluation and treatment of behavioral symptoms and pain in this group. The recent article in Neurology by James et al emphasizing the larger number of deaths from AD reported on death certificates highlights the importance to practitioners that there are great opportunities to improve end-oflife care in this population.17 Palliative medicine providers will

be called upon to assist with goals of care conversations as well as providing symptom management in this growing population. Evaluating pain with the use of assessment tools and the role that opioids will play in this population, just as in a population of older patients dying of any other chronic disease, will require further research and education. A general disagreement in the literature over whether or not dementia is a terminal disease is another contributing factor in this treatment discrepancy.3 Conditions causing pain in intact elderly patients would also cause pain in patients with dementia; therefore, conventional pain treatment plans should be applied. Use of appropriate assessment tools will facilitate in the management of patients who have the inability to verbally communicate. This will allow for treatment to be started, if appropriate, in a timely manner. Earlier enrollment in Hospice is associated with an increased likelihood of receiving an opioid (80% vs 43%) and should be considered.18 Hospital systems should consider applying pain and behavioral management protocols to address this problem in an attempt to standardize care and enhance end-of-life treatment. With pain, agitation, and dyspnea being the three most commonly reported symptoms at the end of life in patients with dementia,19 the use of stepwise pharmacologic treatment plans should be strongly considered. The American Geriatric Society recommends acetaminophen as a first-line treatment for pain, preferring scheduled dosing rather than as-needed administration.20 In our patient story, there was a failure to document pain assessment, the initiation of analgesics was delayed despite agitation, and opioids were intermittently used as they were discontinued and reinstituted again with irrational dosing. A pain scale was not identified or documented in the medical record. Evaluating the patient using the Pain Assessment in Advanced Dementia (PAINAD) scale (Table 3) and CMAI

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American Journal of Hospice & Palliative Medicine®

4 would have been revealing for this patient, as it is brief and useful in nonverbal patients.21 In severe dementia, understanding the prognosis of this disease state may facilitate more appropriate goals of care. A medication prescription regimen is consistent with this goal to avoid overtreatment, side effects, and drug interactions while also improving quality of life and patient comfort. Tjia et al discovered that more than half of the patients with advanced dementia received at least one medication of questionable benefit.22 A partial list of medications that are rarely appropriate include acetylcholinesterase inhibitors, lipid-lowering medications, hormone antagonists, and antiplatelets (excluding aspirin). These potentially unnecessary prescriptions increase pill burden, staff workload, adverse medication interactions, and health care cost. Palliative care teams can be vital in determining a patient’s goal and wishes, review medication appropriateness, and direct medical team and family on the risks and benefits of stopping dementia medications in late-stage disease. Consideration of remaining life expectancy, goals of care, and potential benefits of medications in end-stage dementia is necessary. Addressing medications for clinical appropriateness can be time consuming and goal setting may be challenging for patients and family members.

Conclusion Dementia is a life-limiting illness with a reduced survival compared to age-matched controls.1,23,24 Distressing symptoms include pain, agitation, dyspnea, aspiration, and pressure ulcers, all of which increase as the end of life approaches.3 Patients with advanced dementia have a high mortality rate and a distressing symptom burden at the end of life but often fail to receive palliative care or appropriate medications. Advanced dementia has a 6-month mortality rate of 25% and a median survival of 1.3 years with debilitating pain symptoms similar to those with terminal cancer.3 Underrecognition and undertreatment of pain in dementia is a frequent observation that may lead to decreased quality of life and behavioral symptoms.1 Development and consistent use of standardized tools in the population with dementia will hopefully be the focus of hospital workflow and future research. Research supports the need for more palliative care as patients with advanced dementia are often underrecognized as being at high risk of death and pain management.3 Palliative care teams may assist patients by recommending both pharmacologic and nonpharmacologic treatment modalities. The use of music, exercise, therapeutic touch, and pet therapy all have shown value in minimizing behavioral issues.15 An interdisciplinary team including consultation with the palliative medicine service, hospital pharmacist, social worker, and chaplain can help establish goals of care, prescription appropriateness, and symptom management. This collaboration will enhance patient safety while evaluating for acute medical comorbidities. By using pharmacotherapy for amenable psychiatric disease, the

medical team will identify antecedent behaviors that can enhance quality of life in this patient population. Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors received no financial support for the research, authorship, and/or publication of this article.

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Underrecognition and Undertreatment of Pain and Behavioral Symptoms in End-Stage Dementia.

End-stage dementia, a terminal condition, is associated with a high prevalence of physical pain and behavioral symptoms. As these patients often have ...
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