Delirium, Dementia, and Considerations of Medical Consent. Melissa Sisco, MA & Gabriel Araujo, MA Agenda Consent Altered States of Awareness Differential Diagnosis Key items to diagnosis (delirium v. dementia) Neuropsychological Case Study Legal & Ethical Considerations Medical Decision Makers (Illinois State Law) Documentation of Rationale Considerations of Undue Influence Quick Facts 10-15% of hospitalizations result from delirium (Arnold, 2004) 13.9% of adults age 71+ have some form of dementia in the US (Plassman et al, 2007). Delirium is often a sign of an emerging illness (Jackson et al, 2004) and is often misdiagnosed as dementia (Rahkonen et al, 2000) Delirium increased the risk of dementia 323% (Rockwood, 1999) Delirium increased mortality rates 195% and institutionalization rates by 241% (Witlox, 2010) CONSENT "Decisional capacity" means the ability to understand and appreciate the nature and consequences of a decision regarding medical treatment or forgoing life sustaining treatment and the ability to reach and communicate an informed decision in the matter as determined by the attending physician. (755 ILCS 40/25) Decision Making Capacity Understanding Comprehension, learning, and remembering information about diagnosis and treatment Appreciation Insight and judgment about treatment in consideration of ones health and values Reasoning Analysis and appropriate decision making among treatment options Expressing a Choice Communicating clearly; free of duress *Additional Considerations: Familial views, previously expressed values, opinions of medical staff, societal values ( Buchanan, 2004) Considerations with the Elderly Understanding- Use memory aids and reasonable information chunks; assessing consent is not a memory test Appreciation- Be cautious of acquiescence to medical staff Reasoning- Recognize the likelihood of minimization of problems Expressing a Choice- E.g., survivors of WWII and the Great Depression are less likely to complain or view medical risk as severe (Moye et al, 2004) COMPROMISED STATE OF AWARENESS DeliriumDementia PathologyDiffuse cortical dysfunction or impairment in susceptible areas of the cortex Varied per dementia type (Alzheimers, Parkinsons, ALS, HIV, ongoing cardiovascular insults) OnsetMoments to daysSeveral weeks or months TriggersInfection, dehydration, constipation, drug interaction, poor diet, insomnia, pain, toxins, stress, metabolic changes *Worsened by pain meds, sedatives, & SSRIs Biological disease, stroke, long-term alcohol abuse, vitamin deficiency Hallmark Signs Fluctuation, severe attention problems and disorientation. Chronic, may worsen in Evenings, memory problems Delirium First Delirium overshadows dementia when present. Delirious symptoms are the same with or without underlying dementia (Meagher, 2010) Delirium, if resolved, should return the client to baseline functioning Delirium if not resolve may lead to dementia (Rockwood, 1999) Delirium & Consent Use collateral sources to determine if the persons stated wishes are commensurate with that of: Previous medical records Family and loved ones Mental Capacity Act (2005) Capacity is assumed unless disproven Capacity should be supported in as many domains as possible Individuals must retain the right to eccentric or unwise decisions *If capacity to consent is raised, it must be evaluated and considered. Dementia & Consent People with dementia represent the largest single group of adults affected by incapacity. Sample: 88 mild to moderately demented elderly compared to 88 controls (Moye et al, 2004) Maintenance of Ability to: Mild DementiaModerate Dementia Understanding78-89%33-49% Appreciation78%51% Reasoning83-87%70-76% Expressing Choice89%82% NEUROPSYCHOLOGICAL TESTING Neuropsychological Assessment Role of neuropsychological assessment: Assisting with differential diagnosis Clarifying areas of cognitive strength and weakness Assisting in determination of capacity Treatment recommendations Delirium vs. Dementia Overlapping features complicate differential diagnosis Temporal course and reversibility Delirium inattention; Dementia memory disturbance Spatial span forward (basic attention) differentiated dementia from delirium (Meagher et al., 2011) Determining Capacity Evaluation of reasoning and understanding Only 56% judgment agreement among physicians assessing capacity based on clinical interview alone (Moye et al., 2003) Decision-making capacity: understanding, appreciation, reasoning, and expression of choice Determining Capacity Evaluation of reasoning and understanding Multiple self- and informant-report measures to assess capacity, independence, etc. However, self-report data may over- or under- estimate abilities; informants may be unable to determine, or lack observation (Barbas et al., 2001) Determining Capacity Neuropsychological testing: provides objective data on general cognitive impairment and cognitive strengths and weaknesses to bolster judgments NP performance predicted decisional abilities serving capacity in patients with mild to moderate dementia (Gurrera et al., 2006) Measures of global impairment less useful than measures of basic attention (Bassett et al., 1999) Determining Capacity Initial decisional abilities: problems in understanding and reasoning; subsequent declines: further decrements in reasoning (Moye et al., 2005) Baseline naming and Trails B best classified impaired decisional capacity at 9 month follow-up Case Presentation Ms. X 80 year old Right Handed African American female 11 Years of education Retired (formerly occupied as a maid and factory worker) Right frontal menigioma diagnosed in 2008 Reason for Referral Concerns that tumor may be negatively affecting her ability to make informed decisions Recognize dangerous situations Identify when she is being taken advantage of Take her medication Tend to personal hygiene Present Concerns Ms. Xs living situation Family members (grandchildren, great grandchildren) engaging in illegal activities (fighting, drug use) and stealing in her home Money being taken by or used for occupants Police action not permitted by Ms. X Concern that her grandchildren will be arrested Background Information Right frontal meningioma diagnosed in 2008 gamma knife therapy and steroids ( dizzy spells) Periodic MRI scans MRI August 2010: diffuse cortical atrophy, white matter changes, sub acute lacunar infarct in left basal ganglia Anosmia Medications: allopurinol, omeprazole, metroprolol, prednisone, aspirin, dipyridamole, captropril, and Dilantin Medical History High blood pressure No alcohol use last 10 years No significant psychiatric history Family history: Hypertension (mom), Alzheimers Disease (sister) Cognitive Symptoms Ms. X: Unable to describe reason for undergoing evaluation or information about medical history or medications Was able to answer yes/no questions Reported memory impairment; denied difficulties in other cognitive domains Ms. Xs son: memory problems, irritability, difficulty planning or organizing, and forgetful of names, conversations, appointments, and time and date Behavioral Observations Eye glasses, difficulty hearing No abnormalities in gait and posture, conversational speech, affect, or mood Paraphasias only on confrontation naming Alert and attentive oriented to the city, day of week, and season, but not to the purpose of the evaluation, date, year, month, or place Premorbid Abilities Estimated low average to average range (Barona FSIQ SS = 91) Word reading and knowledge lower (WRAT-4 Reading SS= 71) likely due to educational attainment General Cognitive Function Moderately impaired on cognitive screening measure (MMSE = 16/30) DRS-2: Some cognitive domains impaired (i.e., visuospatial, memory) but low average to average language, construction and basic attention Overall performance below expectation given estimated premorbid abilities Attention and Processing Speed Variable Basic attention (e.g., digit span, visual search) at expected levels However, impaired and below expectation on tasks with greater demands on working memory (digit span) and speeded processing (Trails A) Learning and Memory Consistently impaired performance in learning, spontaneous recall, and recognition Four and 12 item word list Four visual signs Two sentences Executive Functioning Variable Unable to complete a test of switching (Trails B) Perhaps reflective of educational attainment Low average performance on another test of strategy and switching (WCST) 1 of 6 categories, but consistent with expectation relative to others her age Language Intact conversational skills and social comportment with fluent speech and normal volume and prosody However, considerable difficulty on tests of expressive and receptive language and retrieval of information from semantic memory Borderline to severely impaired on COWA, NAB Naming, PPVT-IV Visuospatial Intact visuospatial abilities Low average performance on a test of visual construction (DRS-2) Functional Abilities and Emotion Mild depression (GDS = 9/30) Given measure of practical knowledge to articulate solutions to everyday problems Adequate practical problem solving, but lack of experience or detail in responses impaired overall performance Given measure of judgment related to safety, medical, social, and finance issues Practical solutions on some but vague/insufficient responses on other items impaired overall performance Functional Abilities and Emotion Patient and her son completed questionnaires rating her competency and ADLs Ms. X: No difficulties in self-care activities Some decrease in household chores Complete capacity with the exception of controlling her temper Patients son: Decrease in self-care and household chores Financial irresponsibility Considerable competency problems Unawareness of difficulties Summary Low average intellectual abilities Prominent cognitive impairment in memory functioning Impaired performance on measures of learning, retaining, and retrieving information Preserved basic attention, alertness, and practical reasoning Adequate basic attention and practical problem solving abilities, but difficulty with more complex executive tasks Adequate practical judgment despite lower scores on tests Summary Pattern of performance consistent with a dementia of mild severity characterized by prominent memory impairment Adequate reasoning abilities for making decisions and determinations Concerns regarding her safety and being taken advantage of by those in her home are likely complicated by personal and psychological factors Reluctance to proactively protect herself not due to inability to recognize threats and articulate wishes, but rather disinclination due to potential interference in her relations with grandchildren Recommendations Due to memory impairment, recommended that Ms. X continue to receive assistance with daily medications, cooking, finances, and traveling outside of the home Recommended that patients son contact the City of Chicago Family and Support Services to request detailed assessment of Ms. Xs living environment to evaluate safety and ability to advocate for herself with members of her family. Conclusions Intact basic attention, understanding, and reasoning consistent with research findings (Bassett et al., 1999; Moye et al., 2005) However, impaired naming and cognitive switching (Trails B) follow-up evaluation may be warranted (Moye et al., 2005) Interventions to maximize understanding and reasoning by supporting naming, memory, and flexibility LEGAL & ETHICAL CONSIDERATIONS 755 ILCS 40/25 Who makes the decision for the client? Health Care Providers must: 1.Find the Health Care Agent (POA or legal guardianship): Exhaustively search the persons personal effects, medical record, and other sources to locate the health care agent and telephone the person within 24 hours of the time the person was found to lack decisional capacity. 2. Select a Surrogate Decision Maker: If there is no health care agent, medical treatment decisions can be made including refraining from life-sustaining treatment without judicial involvement by the following people in order of priority: the patient's guardian, spouse, child, parent, sibling, grandchild, close friend, estate guardian *If multiple, majority consensus makes decision. **This lasts until the person regains capacity or dies. 3. Initiate Civil Proceeding. Court-appointed guardian. How is the decision made? In order of priority: Advance directives of the client Designation of a Health Care Surrogate- "health care proxy" or a "durable power of attorney for health care Living Will Decisions made by surrogate conforming to the patients wishes and values Including advanced directive voided on technicality Logic based on that the client would use to weigh pros & cons If wishes remain unknown after great deliberation, clients best interest. *Independent Mental Capacity Advocate (IMCA) are individuals who advocate to the decision-maker about the clients values or wishes Illinois Care Documentation Advance Directives of the Patient Each health care facility shall maintain any advance directives proffered by the patient or other authorized person, including a do not resuscitate order, a living will, a declaration for mental health treatment, a declaration of a potential surrogate or surrogates should the person become incapacitated or impaired, or a power of attorney for health care, in the patient's medical records. This Act does apply to patients without a qualifying condition. Surrogate Decision Maker Selection What methods were utilized to discover a health agent and the exact time and number used to contact this person if identified. What rationale was used to identify a surrogate decision maker if a health agent was not available. After a surrogate has been identified, the name, address, telephone number, and relationship of that person to the patient shall be recorded in the patient's medical record. Protecting the Altered Client: Financial Undue Influence Susceptible victim Confidential relationship Active perpetrator Monetary gain This concept is defined as follows in Illinois: 750 ILC 60/103 "Exploitation- The illegal, including tortious, use of a high risk adult with disabilities or. the misappropriation of assets or resources of a high risk adult with disabilities by undue influence, by breach of a fiduciary relationship, by fraud, deception, or extortion, or the use of such assets or resources in a manner contrary to law. Protecting the Altered Client: Elder Abuse & Neglect Monitoring and documenting signs of fear or unusual or recurrent illness patterns Recognizing that the person in closest proximity to the client may not be there for the appropriate reason Reporting all suspected cases to Adult Protective Services Protecting the Altered Client: Caring for the Caregiver Dementia care givers reported lower well-being, more depression, and greater guilt than other caregivers (Clip & George, 1993; Rabins et al, 1990) 35% of caregivers reported felt more positive than non-caregivers (Rabins et al, 1990) social support, familial cohesiveness, and strong faith, lessened the caregivers emotional distress Thank You Sources Arnold, E. (2004). Sorting out the 3 Ds. Nursing, 34(6), Bellelli, G. (2010). Diagnosing delirium. JAMA, 304(19), Bellelli, G., Frisoni, G.B., Turco, R., Lucchi, E., Magnifico, F., Trabucchi, M. (2007). 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The association between delirium and cognitive decline: A review of the empirical literature. Neuropsychology Review, 14(2), Laurila, J.V., Pitkala, K.H., Strandberg, T.E., & Tilvis, R.S. (2004). Delirium among patients with and without dementia: Does the diagnosis according to the DSM-IV differ from the previous classifications? International Journal of Geriatric Psychiatry, 19(3), Sources (contd) Meagher, D., Leonard, M., Donnelly, S., Conroy, M., Saunders, J., & Trzepacz, P.T. (2010). A comparison of neuropsychiatric and cognitive profiles in delirium, dementia, comorbid delirium-dementia and cognitively intact controls. Journal of Neurology, Neurosurgery, & Psychiatry, 81(8), Moye, J., Karel, M.J., Azar, A.R., & Gurrera, R.J. (2004). Capacity to consent to treatment: Empirical comparison of three instruments in older adults with and without dementia. The Gerontologist, 44(2), Plassman, B.L. 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