Ethical Issues Related to...

Ethical Issues Related to Self-Neglect Among Older Adults

Georgia J. Anetzberger, PhD, ACSW

Presentation Outline

I. Overview of Self-Neglect

A. Case Study: Esther

1. Labels

2. Context

B. Case Study: #070

1. Definitions

2. Recognition History

©2017 National Association of Social Workers. All Rights Reserved. 3

C. Case Study: Celia

1. Prevalence and Incidence

2. Reporting

D. Case Study: Mary

1. Risk Factors

2. Signs

3. Consequences


ll. Ethical Concerns in Addressing Self-Neglect

A. Distinctly Challenging

B. Etiology of Ethical Questions

1. Self-Neglecter Profile

2. Professional Role

C. Ethical Principles

D. Guidance for Ethical Decision-Making


Overview of Self-Neglect


Case Study

Esther preferred to die rather than

take life-sustaining medications.


Labels: Self-neglect has been given many names.

• Social breakdown in the elderly

• Senile breakdown

• Diogenes syndrome

• Squalor syndrome

• Indirect self-destructive behavior

• Passive suicide


Context: Self-neglect may or may not be seen as an aspect of elder abuse [1].

Levels (An Updated version of Margaret Hudson’s Elder Abuse Definition Taxonomy)

Problem Elder Abuse

Perpetrator Self Trusted other

Stranger or acquaintance

Setting Domestic Institutional

Form Neglect Abuse

Perpetrator motivation

Intentional Unintentional

Locus of harm

Physical Psychological Social Financial Sexual


Case Study

#070 was a 79-year-old widow living alone,

progressively withdrawing, refusing to leave her

apartment, unable to keep up on housework, crying

almost constantly because neighbors and friends

were all dead and no one was available to help, and

resisting eviction by a landlord concerned about her

poor housekeeping.


Definition: Self-Neglect is variously defined.

• National Center on Elder Abuse: Elders neglecting

their own care, which can lead to illness or injury

[2].

• National Adult Protective Services Association:

Involves seniors or adults with disabilities who fail to

meet their own essential physical, psychological or

social needs, which threatens their health, safety

and well-being [3].


Definitions: Self Neglect (con’t)

• Consortium for Research in Elder Self-Neglect of

Texas (CREST): Inability or unwillingness to provide

for oneself the goods and services needed to live

safely and independently [4].


Recognition History: Early concern about self-neglect came from physicians and

social workers. • Medical syndrome/public health issue

– H. Erksine. (1953). Out of this world-A collection of hermits and recluses. New York: Putnam.

– 1960s and 1970s publication of scholarly articles in British and American medical journals

• Social problem

– 1950s dialogues in select urban centers regarding the growth of a vulnerable older adult population

– 1960s and 1970s development and spread of adult protective services (APS)


Case Study

Celia made national news living with 127 dogs.


Prevalence and Incidence: Self-neglect is not rare and sometimes is found in association

with other aspects of elder abuse.

• The prevalence rate is estimated at 9% [5].

• Incidence is low—7 per 1000 older adults annually or fewer [6].

• Self-neglect occurs 3x more often than physical abuse or caregiver neglect [7].

• Among APS cases, 30-40% of older adults experience multiple elder abuse forms, with self-neglect found to increase the likelihood of financial exploitation [8].


Reporting: Self-neglect may be the most reported aspect of elder abuse to APS, but it

is reported less frequently than it occurs.

• At 37.2% self-neglect represents the most common

category of substantiated APS reports [9].

• Only one in five instances of self-neglect is reported

to APS, with friends and neighbors the most

frequent reporters [10].


Case Study

Mary Northern’s situation was considered by the

Tennessee Supreme Court.


Risk Factors: There are multiple risk factors that have been found associated with self -

neglect [6, 11, 12, 13].

• Advanced age

• Physical illness

• Cognitive or mental disorder

• Living alone

• Few social relations

• Lower income/resources

• Hoarding

• Substance abuse

• Functional limitation

• Lack of concern

• Reluctance to seek/accept help


Signs: There are three domains of indictors for self-neglect that are used to measure the

severity of the problem [14].

• Personal hygiene

• Impaired function

• Environmental neglect


Consequences: The effects of self-neglect can be severe for the older adult and costly

for society.

• Older adult

-More self-reported pain [15]

-Nutritional deficiencies [16]

-Greater risk of death in the short term [17]

• Society

-Increased hospitalization and readmissions [18,19]

-Greater emergency department utilization [20]

-Higher risk of nursing home placement [21]


Ethical Concerns in Addressing Self-Neglect


Distinctly Challenging: Perhaps no elder abuse aspect is more subject to ethical

debate than self-neglect.

• M. Blenkner (1974): “…among the risks the professional and his agency must face up to…is not only the risk of doing nothing but the risk of intervening, especially when that intervention entails drastic changes in the client’s way of life…” [22. p. 183]

• W.D. Callender (1982): “The role of the protective services worker is fraught with such conflict. The two most prominent examples are the conflicts between community expectations…and the actual expectation of the job holders; and, two, the conflict between the client as decision-maker and surrogates (such as social workers) as decision-makers.” [23, p. 2]


• D.R. Fabian and E. Rathbone-McCuan (1992):

“[Self-neglect] is fraught with conceptual complexity

and ethical ambiguity.” [24, p. 3]

• C.J. Heisler and Q.D. Bolton (2006); “…a significant

number of self-neglecters are able to understand

their actions and their impact on others. Under rules

of criminal responsibility, they may be held

accountable for effects of the self-neglect. However,

the ability to hold self-neglecters accountable may

not assist in remedial efforts with self-neglecters

likely due to their resistance.” [25, p. 98] ©2017 National Association of Social Workers. All Rights Reserved. 23

Self-Neglecter Profile: The characteristics of self-neglecting older adults raise ethical

questions about intervention [26]. • Living alone: Is society more responsible for protecting those

who have no family or other informal support?(#070)

• Social isolation: Should lifestyle choices take precedence over community standards for housing and the environment? (Celia)

• Mental impairment: What happens when mental impairment is intermittent or relevant only to certain areas of functioning? (Mary)

• Physical health problems: Does failure to comply with traditional medical practice signal the need for protective intervention? (Esther)


• Self-care incapacity: Whose standards of self-

capacity apply? (All)

• Failure to recognize limitation: Should self-

awareness be an individual expectation under all

circumstances? (All)

• Life-threatening incident: Can individuals freely

choose substantial risk? (All)


Professional Role: Every professional role confronts its own ethical questions when

considering the situation of self-neglecting older adults [26].

• Reporter: Should I report the situation when I don’t

believe that reporting will make any positive difference?

• Investigator: How honest am I with the older adult as to

the purpose of my visit?

• Service provider: What separates establishing rapport

with the older adult in an effort to offer services from

cajoling that person into compliance with my service

plan?


• Program administrator: How much in the way of

staffing should be devoted to situations of repeated

self-neglect?

• Community planner: Should community education

on self-neglect be initiated when insufficient

resources exist locally for addressing the problem?


Ethical Principles: Individual situations of self-neglect can confront ethical principles commonly held by service professionals,

like social workers.

• Autonomy Esther

• Beneficence

• Justice Celia

• Privacy

• Universality

• Respect for persons Mary

• Non-maleficence

• Accountability #070

• Fidelity

• Utility


Guidance for Ethical Decision-Making: Direction for trying to resolve ethical

questions regarding self-neglect situations can be found from several sources.

• Consultation with supervisors and colleagues

• Multidisciplinary ethics committees


• Professional/organizational values and principles, e.g.:

National Adult Protective Services Association Ethical Principles [27]

Guiding Value: Every action taken by Adult Protective Services must balance the duty to protect the safety of the vulnerable adult with the adult’s right to self-determination.

Secondary Value: Older people and people with disabilities who are victims of abuse, exploitation or neglect should be treated with honesty, caring and respect.


Principles

Adults have the right to be safe.

Adults retain all their civil and constitutional rights unless these rights have been restricted by court action.

Adults have the right to make decisions that do not conform to societal norms as long as these decisions do not harm others.

Adults are presumed to have decision-making capacity unless a court adjudicates otherwise.

Adults have the right to accept or refuse services.


• Community dialogue [28] A Community Dialogue Series on Ethics and Elder Abuse: Guidelines for

Decision-Making


Ethical Dilemma: Should health and social service professionals be mandated to report a known or suspected abuse situation?

CLINICAL COMMUNITY

• Report when suspicion of elder abuse exists along with a belief that reporting will produce more good than not reporting for the older adult and family. •Report when suspicion of elder abuse exists and the potential harm caused by reporting is less than the harm caused by the situation in question (See “Principles of Adult Protective Services”).

• Encourage Adult Protective Services to establish quality improvement and inspection systems, including regular opportunity for professionals to assess the agency service delivery system. •Maintain good relations with Adult Protective Services, working with the agency to address problems in report receipt and investigation.


Ethical Dilemma: Should the civil liberties of the abused elder be removed in the interest of providing protection?

CLINICAL COMMUNITY

•Provide comprehensive assessment of mental stability: Understanding the individual in the context of lifestyle and capacity to make life-supporting decisions is essential. Community and Adult Protective Services Social Work input are needed as well as in-patient observations. Mental stability may exist in some areas and not in others. •Insure that primary responsibility is to the client, and not the community (See “Principles of Adult Protective Services”). •Give the benefit of doubt to the client (See “Principles of Adult Protective Services”). •Guard against ageism in responding to this dilemma. •Make change in the older adult’s lifestyle as slowly as possible, measuring the “cost” of intrusion.

•Offer community education focused on self-determination and individual rights.

Questions?


References

1. Anetzberger, G.J. (2012). An update on the nature and scope of

elder abuse. Generations, 36(3), 12-20.

2. National Center on Elder Abuse. (2017, May 1). Frequently asked

questions: What is self-neglect and what are the signs? Retrieved

from https://ncea.acl.gov/faq/#faq3

3. National Adult Protective Services Association. (2017, May 1). Get

informed: What is neglect? Retrieved from https://napsa-

now.org/get-informed/what-is-neglect

4. Poythress, E.L., Burnett, J., Naik, A.D., Pickens, S., & Dyer, C.B.,

(2006). Severe self-neglect: An epidemiological and historical

perspective. Journal of Elder Abuse & Neglect, 18(4), 5-12.


https://ncea.acl.gov/faq/

https://napsa-now.org/get-informed/what-is-neglect









5. Dong, X., Simon, M.A., Mosqueda, L., & Evans, D.A., (2012). The

prevalence of elder self-neglect in a community-dwelling population:

Hoarding, hygiene, and environmental hazards. Journal of Aging

and Health, 24(3), 507-524.

6. Dyer, C.B., & Reyes-Ortz, C.A. (2017). Epidemiology of elder self-

neglect. In X. Dong (Ed.), Elder abuse: Research, practice and

policy. (pp. 125-139). Cham, Switzerland: Springer International

Publishing.

7. Pavlik, V.N., Hyman, D.J., Festa, N.A., & Dyer, C.B. (2001).

Quantifying the problem of abuse and neglect in adults-Analysis of

a statewide database. Journal of the American Geriatrics Society,

49, 45-48.

8. US Department of Justice. (2017, March 5). Elder abuse FAQS.

Retrieved from www.justice.gov/elderjustice/support/faq


http://www.justice.gov/elderjustice/support/faq

9. National Committee for the Prevention of Elder Abuse (NCPEA) & National Adult Protective Services Association. (2005, September). The 2004 survey of state adult protective services abuse of vulnerable adults of all ages. Washington, DC: NCPEA.

10. National Center on Elder Abuse & Westat, Inc. (1998, September). The national elder abuse incidence study. Washington, DC: American Public Human Services Association.

11. Choi, N.G., Kim, J., & Asseff, J. (2009). Self-neglect and neglect of vulnerable older adults: Re-examination of etiology. Journal of Gerontological Social Work, 52(2), 171-187.

12. Day, M.R., & Leahy-Warren, P. (2008). Self-neglect 1: Recognizing features and risk factors. Nursing Times, 104, 24, 26-27.

13. O’Brien, J.G., Thibault, J.M., Turner, L.C., & Laird-Fick, H.S. (1999). Self-neglect: An overview. Journal of Elder Abuse & Neglect, 11(2), 1-19.


14. Kelly, P.A., Dyer, C.B., Pavlik, V., Dooday, R., & Jogerst, G. (2008). Exploring self-neglect in older adults: Preliminary findings of the self-neglect severity scale and next steps. Journal of the American Geriatrics Society, 56(supplement 2), 253-260.

15. Pickens, S., Burnett, J., Naik, A.D., Holmes, H.M., & Dyer, C.B. (2006). Is pain a significant factor in elder self-neglect? Journal of Elder Abuse & Neglect, 18(4), 51-61.

16. Smith, S.M., et al. (2006). Nutritional status is altered in self-neglecting elderly. Journal of Nutrition, 136, 2534-2541.

17. Dong, X., et al. (2009). Elder self-neglect and abuse and mortality risk in a community-dwelling population. Journal of the American Medical Association, 302(5), 517-526.

18. Dong, X., Simon, M., & Evans, D. (2012). Elder self-neglect and hospitalization: Findings from Chicago Health and Aging Project. Journal of the American Geriatrics Society, 60(2), 202-209.


19. Dong, X., & Simon, M.A. (2015). Elder self-neglect is associated

with an increased rate of 30-day hospital readmission: Findings from

the Chicago Health and Aging Project. Gerontology, 61, 41-50.

20. Dong, X., Simon, M.A., & Evans, D. (2012). Prospective study of the

elder self-neglect and ED use in a community population. American

Journal of Emergency Medicine, 30(4), 553-561.

21. Lachs, M.S., Williams, C.S., O’Brien, S., & Pillemer, K.A. (2002).

Adult protective service use and nursing home placement. The

Gerontologist, 42(6), 734-739.

22. Blenkner, M. (1974). Summary and conclusions. In M. Blenkner, M.

Bloom, M, Nielson, & R. Weber, Final report: Protective services for

older people: Findings from The Benjamin Rose Institute study (pp.

175-185). Cleveland OH: The Benjamin Rose Institute.


23. Callender, W. D., Jr. (1982, September). National law and social

work seminar: Proceedings and prospects (Improving protective

services for older Americans: A national guide series). Portland, ME:

University of Southern Maine, Human Services Development

Institute.

24. Fabian, D.R., & Rathbone-McCuan, E. (1992). Elder self-neglect: A

blurred concept. In E. Rathbone-McCuan & D.R. Fabian (Eds.),

Self-neglecting elders: A clinical dilemma (pp. 3-12). New York:

Auburn House.

25. Heisler, C.J., & Bolton, Q.D. (2006). Self-neglect: Implications for

prosecutors. Journal of Elder Abuse & Neglect, 18(4), 93-102.

26. Anetzberger, G.J. (1999). Ethical issues in personal safety. In T.F.

Johnson (Ed.), Handbook on ethical issues in aging (pp. 187-219).

Westport, CT: Greenwood Press.


27. National Adult Protective Services Association. (2017, May 1). About

NAPSA: NAPSA (or APS) code of ethics. Retrieved from

https://napsa-now.org/about-napsa/code-of-ethics

28. Anetzberger, G.J., Dayton, C., & McMonagle, P. (1997). A

community dialogue series on ethics and elder abuse: Guidelines

for decision-making. Journal of Elder Abuse & Neglect, 9(1), 33-50.











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