Ethics and Capacity Issues - Module 11

Ethics and Capacity Issues - Module 11

MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Ethics and Capacity Issues MODULE 11 U.S. Department of Health and Human Services Health Resources and Services Administration December 2018 The U.S. Department of Health and Human Services, Health Resources and Services Administration developed this module under a contract. Some of the views expressed in this presentation module are solely the opinions of the author(s) and do not necessarily reflect the official policies of the U.S. Department of Health and Human Services or the Health Resources and Services Administration, nor does mention of the department or agency names imply endorsement by the U.S. Government. MODULE

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Copyright Language We purchased the images for Modules 1-12 from istock by Getty. We accessed the images for Modules 13-16 using Google Find Free-to-Use Images. 2 MODULE 1 2

3 4 5 6 7 8 9 10 11 12 13 14 15 16 Photo Man talking to senior couple 3 MODULE 1 2 3 4 5 6 7

8 9 10 11 12 13 14 15 16 Outline Overview Legal and financial considerations Capacity considerations Ethical considerations Elder abuse 4 MODULE 1 2 3 4 5 6 7

8 9 10 11 12 13 14 15 16 Learning Objectives After reviewing this module, the learner will be able to: List legal and financial considerations to discuss with a patient and appropriate care partner(s) upon a diagnosis of dementia. Identify domains that are included in a capacity assessment for a person living with dementia. Identify ethical issues related to participation in dementia research. Recognize signs of elder abuse. 5 MODULE 1 2 3 4 5 6 7 8

9 10 11 12 13 14 15 16 Key Take-Home Messages Have a high level of suspicion for elder abuse or neglect. Do not underestimate the ability of PLwD to express opinions about their care. Older people have the right to take informed risks. Primary care providers (PCPs) have an important role in determining a persons decision-making capacity. 6 MODULE 1 2 3 4 5 6 7 8 9 10

11 12 13 14 15 16 Photo Senior man leading business meeting 7 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

16 Outline Overview Legal and financial considerations Capacity considerations Ethical considerations Elder abuse 8 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

16 Overview Person living with dementia (PLwD), care partner(s), and families face many decisions after receiving a diagnosis of dementia: o Legal o Financial o Medical o Ethical 9 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

16 Roles and Responsibilities of Primary and Health Care Providers Treatment team: Recommend that PLwD and care partners seek professional help to navigate legal and financial decisions. Primary care providers (PCPs): Assess PLwD for capacity (if appropriate); competence determined by judge (Dastidar & Odden, 2011). PCPs and other health care providers (HCPs): Have a global understanding of issues facing PLwD and care partners; recommend professional assistance to help address these issues. PCPs and other HCPs: Recognize signs and symptoms of elder abuse and report accordingly. 10 MODULE 1 2 3 4 5 6 7 8 9 10 11 12

13 14 15 16 Photo Senior woman with advisor 11 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Outline (2)l Legal and

Overview Legal and financial considerations Capacity considerations Ethical considerations Elder abuse 12 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Legal and Financial Planning: Overview

Recommend to begin planning for future as soon as possible so PLwD can participate in decision-making process (Fisk et al., 2007; Grossberg et al., 2010). o Communicate health care wishes. o Make long-term care arrangements. o Make plans for finances and property. Identify proxy to take over decision-making when PLwD no longer have capacity to make decisions (Kim et al., 2011). 13 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16

Photo Senior couple with advisor 14 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Identifying Nonmedical Professionals for the Dementia Team Elder law attorney Accountant and/or financial planner

Geriatric care manager Other 15 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Financial Burdens Associated With Dementia Diagnosis Direct costs of medications and doctor visits (for dementia and

comorbidities) Potential future costs (Hurd et al., 2013) o Future need for home and community-based services o Safety-related expenses o Personal care supplies o Costs associated with assisted living or nursing home care Costs associated with specialty teams (lawyers, accountants, case manager) Many PLwD do not have the financial resources to cover these costs. 16 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Financial Considerations: Medicaid

Average costs for long-term care services in U.S. are substantial; many PLwD are unable to afford costs without financial assistance (Genworth, 2015; Alzheimers Association, n.d.). Medicare coverage is for acute, not chronic, needs. PLwD may need to apply for Medicaid (medical assistance) benefits to cover costs; need to understand state-specific rules (Healthcare.gov, n.d.). 17 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Photo Couple and young son with advisor

18 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Understanding the Necessary Legal Documents Standard will Living trust

Advance medical directive Living will (Mayo Clinic, 2014) Durable powers of attorney Research advance directives (Muthappen et al., 2005) POLST (physician or provider orders for life-sustaining treatment) or MOLST (medical orders for life-sustaining treatment) 19 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Guardianship

Not a common occurrence In absence of power of attorney, courts appoint guardian (or conservator) if person no longer capable of making own decisions (Karlawish, 2008) An alternative to guardianship: supported decision-making o The PLwD receives help to make decisions o Supported Decision-Making Pilot Project 20 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Outline (3)

Overview Legal and financial considerations Capacity considerations Ethical considerations Elder abuse 21 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Capacity: Overview, Issues

Assessment of decision-making capacity is needed when a person living with dementia is required to make decisions involving risks. Capacity laws differ by state. Capacity is functional assessment of 4 abilities: understanding, appreciation, expressing a choice, and rationalization (Dastidar & Odden, 2011; Karlawish, 2008; Lai et al., 2008; Woods & Pratt, 2005). 22 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Capacity Considerations in Dementia

PCPs are able to make clinical determinations of capacity (Dastidar & Odden, 2011; Karlawish, 2008). o Competency is a legal determination (Dastidar & Odden, 2011). Memory impairments may influence capacity, which is not static (Mitty, 2009). PLwD who lack insight have impaired decision-making capacity (Cosentino et al., 2011). Consider capacity to receive a diagnosis (Dastidar & Odden, 2011), and document if PLwD lack capacity (Grossberg et al., 2010). 23 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16

When To Assess Capacity Assess for capacity if any provider or care partner questions the PLwDs decision-making capacity. Send for formal assessment by a psychologist or a psychiatrist if capacity is not clear. Talk to the PLwD about capacity issues during the course of the illness. 24 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16

Tools to Assess for Medical Decision-Making Capacity Numerous clinical tools can be used to assess medical decision-making capacity (Dastidar & Odden, 2011): o McArthur Competence Assessment Tools for Treatment (MacCAT-T) (Grisso et al., 1997) o Capacity toC onsent to Treatment Instrument (CCTI) (Marson et al., 1995) o Hopemont Capacity Assessment Interview (HCAI) (Edelstein, 1999; Pruchno et al., 1995) 25 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16

Photo Senior man with healthcare worker 26 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Outline (4) Overview Legal and financial considerations Capacity considerations

Ethical considerations Elder abuse 27 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Ethical Considerations Ethics: human values, what constitutes good and moral life (Whitehouse, 2000) 4 primary considerations with regard to decisions concerning PLwD (Strech et al., 2013; Whitehouse, 2000): o Beneficence

o Nonmaleficence o Respect for autonomy o Privacy and confidentiality 28 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Specific Ethical Concerns in Dementia Care Ethical issues arise across all stages of dementia (Whitehouse, 2000). o Safety, tracking/monitoring devices, medications Care partners face many ethical challenges, particularly dilemma of caring for persons living with dementia versus meeting own needs (Hughes et al., 2002). 29

MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Sexual Consent Sexual consent issues are typically of greatest concern in long-term care facilities and may also be pertinent to persons living at home. Ability to consent to sexual activities is defined by states; it must be continuously reassessed as the person progresses through dementia (Wilkins, 2015). 30 MODULE

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Photo Woman consoles senior man 31 MODULE 1 2 3 4 5

6 7 8 9 10 11 12 13 14 15 16 Ability to Consent to Enroll in Research Some PLwD (and their care partners) are willing to participate in clinical studies or trials. It is important to discuss the pros and cons of the research and to ensure that the PLwD has the capacity to provide consent. A proxy may provide consentbut it should be consistent with the PLwDs desires (Muthappan et al., 2005) and any legal arrangements. 32 MODULE 1 2 3 4 5

6 7 8 9 10 11 12 13 14 15 16 Outline (5) Overview Legal and financial considerations Capacity considerations Ethical considerations Elder abuse 33 MODULE 1 2 3 4 5

6 7 8 9 10 11 12 13 14 15 16 Elder Abuse: Overview and Prevalence Elder abuse can occur in any setting. o It includes physical, emotional, sexual abuse, neglect, abandonment, financial exploitation, and fraud (U.S. DoJ, 2015). o Definitions differ by state (NCEA 2015; NIA 2015). o It is common but underreported (Ahmad & Lachs, 2002; Acierno et al., 2010; Lifespan, 2011). According to a recent literature review (Dong et al., 2014): o Psychological abuse is the most common form (62% of the elderly). o Up to 23% of persons with dementia are victims of physical abuse. However, many studies exclude financial abuse from their estimations (Acierno et al., 2009). o Financial exploitation may be the most common form (Acierno et al., 2009). 34 MODULE

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Photo Senior woman turning away from young woman 35 MODULE 1 2 3 4 5

6 7 8 9 10 11 12 13 14 15 16 Risk Factors and Likely Perpetrators of Elder Abuse Risk factors for elder abuse include low income, unemployment/retirement, lack of social support, and needing assistance with activities of daily living (ADL) (Acierno et al., 2009). PLwD are at even greater risk for elder abuse than general population (Cooney et al., 2006; Vande Weerd & Paveza, 2006). o Approximately 1 in 2 PLwD experience elder abuse (Cooper et al., 2009), often by caregiver (Wiglesorth et al., 2010). The majority of perpetrators are family members (Acierno et al., 2009; Cooper et al., 2009; U.S. DoJ, 2009). 36 MODULE 1 2

3 4 5 6 7 8 9 10 11 12 13 14 15 16 Case Study Mr. Marcus was living alone in his own home. He was in the early stages of Alzheimer's disease (MMSE 24), and his daughter was his primary caregiver. They spoke on the phone daily and she saw him about once a week. He also was receiving help from three young women who lived nextdoor to him. He had good retirement benefits and Social Security, yet he reported that he never had any money. His daughter found that his bank account was dwindling, and no one could understand how he was spending his money. Mr. Marcus felt that someone in the bank must be stealing money. After some investigation, it turned out that the "helpful neighbors" were not only helping him get to the supermarket and drug store, but also to the cash machine, several times a week. Mr. Marcus did not recall these episodes (Budson & Solomon, 2016). 37

MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Elder Abuse: Signs and Red Flags All clinicians need to be aware of signs of possible elder physical abuse or neglect (Ahmad & Lach, 2002; Bonnell, 2012; Hoover & Polson, 2014; NCEA, 2013; NIA, 2015). It is difficult to recognize signs of financial abuse. Guidance on abuse recognition and reporting for persons living with

dementia and intellectual disability can be obtained from each states protection and advocacy system (under the Developmental Disabilities Assistance and the Bill of Rights Act of 2000, each state has a protection and advocacy system agency designated by the states governor), as well as from the states developmental disabilities authority (state agency). Establishment of proper guardianship (of some kind) is needed to keep people safe from such harms 38 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Photo Man scolding dejected woman 39

MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Elder Abuse in Diverse Populations Ethnicities and cultural groups may define elder abuse in their own terms. Black/African American elders are most vulnerable to financial exploitation by strangers (Beach et al., 2010; Peterson et al., 2014). Despite few studies on Hispanic/Latino American elders (NCEA, 2016), they are apparently vulnerable to psychological abuse (Deliema et al., 2002) and reluctant to report abuse to authorities (Laumann et al., 2008).

Persons in the LGBT community are at increased risk of elder abuse by a caretaker because of homophobia (Frazer, 2009). Persons living with dementia and intellectual disability are susceptible to various forms of abuse, including financial, sexual, verbal, and physical, which can occur in a variety of care settings (Jokinen et al., 2013). 40 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Elder Abuse: Barriers to Reporting

Patient barriers to reporting involve fear of consequences (Selwood et al., 2007). Care partner and provider barriers involve lack of knowledge of what constitutes abuse (Selwood et al., 2007). Reporting requirements vary by state and include requirements of timely reporting (Ahmad & Lachs, 2002; Hoover & Polson, 2014; NCEA, n.d.; NIA, 2015). State laws govern in large part the reporting conditions and requirements when abuse is suspected or observed in PLwD and intellectual disability (Jokinen et al., 2013). State Protection and Advocacy System agencies in a state also have the authority to investigate abuse and neglect in any setting where a person with intellectual or developmental disability receives services under the Developmental Disabilities Assistance and the Bill of Rights Act of 2000. 41 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

16 Photo Senior woman comforted by young woman 42 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Strategies for Intervening: Elder Abuse Ethical dilemmas: o What is goal of intervention?

o How to balance confidentiality versus patient safety? Strategies depend on need for involving judicial system (Ahmad & Lachs, 2002). 43 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Summary Ethical, legal, and financial considerations are associated with diagnosis of dementia.

Providers can recommend that PLwD and family/care partners seek professional counsel. Objectivity is needed in discussing participation in clinical research. All providers must be alert to possibility of elder abuse. 44 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 Evaluation 1. 2. A person with dementia can designate a person of his/her own choosing to make legal or financial decisions on his/her behalf for the

time when he/she is no longer able to; this person is called a: a. Guardian b. Executor c. Proxy d. Conservator All but which of the following abilities is evaluated in a capacity assessment? a. The ability to understand key facts about a choice b. The ability to appreciate the benefits and risks of a problem c. The ability to make the right decision d. The ability to rationalize or reason 45 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16

Evaluation (continued) 3. Which of the following is not one of the four primary ethical considerations that should guide decision-making regarding participation in dementia research: a. Beneficence (do good) b. Nonmaleficence (do no harm) c. Respect for autonomy d. Respect for cultural beliefs 4. Which of the following might suggest a case of elder abuse? e. Dirty clothing or hair f. Bills not being paid or not paid in a timely manner g. Unexplained weight loss h. All of the above 46 MODULE 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15

16 Acknowledgements This module was prepared for the U.S. Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), by The Bizzell Group, LLC, under contract number HHSH25034002T/HHSH250201400075I. The dementia and education experts who served on the Dementia Expert Workgroup to guide the development of the modules included: Alice Bonner, PhD, RN, FAAN, Secretary Elder Affairs, Massachusetts Executive Office of Elder Affairs, Boston MA; Laurel Coleman, MD, FACP, Kauai Medical Clinic -Hawaii Pacific Health, Lihue, HI; Cyndy B. Cordell, MBA, Director, Healthcare Professional Services, Alzheimer's Association, Chicago, IL; Dolores Gallagher Thompson, PhD, ABPP, Professor of Research, Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford, CA; James Galvin, MD, MPH, Professor of Clinical Biomedical Science and Associate Dean for Clinical Research, Florida Atlantic University, Boca Raton, FL; Mary Guerriero Austrom, PhD, Wesley P Martin Professor of Alzheimer's Disease Education, Department of Psychiatry, Associate Dean for Diversity Affairs, Indiana UniversityPurdue University Indianapolis, Indianapolis, IN; Robert Kane, MD, Professor and Minnesota Chair in Long-term Care & Aging, Health Policy & Management, School of Public Health, University of Minnesota; Jason Karlawish, MD, Professor of Medicine, Perelman School of Medicine, University of Pennsylvania; Helen M. Matheny, MS, APR, Director of the Alzheimer's Disease Outreach Program, Blanchette Rockefeller Neuroscience Institute, Morgantown, WV; Darby Morhardt, PhD, LCSW, Associate Professor, Cognitive Neurology and Alzheimer's Disease Center and Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Northwestern University, Chicago, IL; Cecilia Rokusek, EdD, MSc, RDN, Assistant Dean of Research and Innovation, Professor of Family Medicine, Public Health, Nutrition, and Disaster and Emergency Preparedness, College of Osteopathic Medicine, Nova Southeastern University, Fort Lauderdale, FL. Additional expertise in the development of the modules was provided by Meg Kabat, LCSW-C, CCM; Eleanor S. McConnell, PhD, MSN, RN, GCNS, BC; Linda O. Nichols, PhD, MA, BA; Todd Semla, MS, PharmD, BCPS, FCCP, AGSF; Kenneth Shay, DDS, MS, from the U.S. Department of Veterans Affairs and Seth Keller, MD and Matthew P. Janicki, PhD, National Task Group on Intellectual Disabilities and Dementia Practices. 47 MODULE 1 2 3 4 5 6 7 8 9

10 11 12 13 14 15 16 Brought to you by the U.S. Department of Health and Human Services, Health Resources and Services Administration 48

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