Serving the Unbefriended Elder Population

1. Serving the Unbefriended Elder Population Trends, Challenges, and Successes 2011 Minnesota Age & Disabilities Odyssey Mayo Civic Center • Rochester, MN • June 21, 2011

2. Outline of Presentation • Meet the presenter • Introduction to Unbefriended Elders • National Picture / Demographic Change • Local Models • Conclusion / Discussion

3. Presenter • Douglas Silverman, MPH • State Program Administrator Principal, MN DHS - Aging and Adult Services Division • Background

4. Introduction • Who is an Unbefriended Elder? • Senior without advocates • Lack of available friends, family, traditional supports • Often socially isolated • Do not frequently seek out help on their own • May function okay, may suffer from mental illness or chronic conditions • Lack of comprehensive research data on this population

5. Unbefriended Elders • Can pose social, medical and ethical dilemmas • No one to advocate for them • Aging and chronic health problems • Complex decisions pertaining to medical care • Health care directives • Lack capacity to make decisions

6. The National Issue • Legal framework for making treatment decisions mostly insufficient • Unbefriended may be at risk • Overtreatment • Under-treatment • Treatment decisions don’t reflect values • Frequently socially isolated • Can suffer multiple chronic conditions

7. Overtreatment • Aggressive treatment as medical imperative • Some MDs philosophically believe they can treat, so should treat • Perverse economic incentives to treat • Fear of regulators • Fear of civil liability

8. Under-treatment • Refusal to treat without informed consent • Can lead to: • Wait for emergency • Unnecessary delay • Added illness • Longer period of discomfort and indignity • Increased chance of morbidity, even if eventually treated

9. Health Care Decision-Making • MN Commission on End of Life Care • January 2002 report • "45% of next of kin listed couldn’t be reached for participation in resuscitation status” (Fader et al., 1989) • “47% of LTC residents lacked decision-making capacity and 26% had only partial capacity” (Miller & Cugliari, 1990) MN Coalition on End of Life Care: http://mnhpc.org/wp-content/uploads/2010/04/final-format.pdf

10. What happens in the Real World? • Often informal & ad hoc process • Often no clear statutory authority • “Flying below the radar screen” • Physicians decide; physicians as ad hoc guardians • Stretch exceptions to consent rule

11. Lack of Data/Research • Karp and Wood, 2003 • ABA Commission on Law and Aging • Examines legal and ethical dilemmas • Institutionalized populations • Recommended further study Naomi Karp and Erica Wood, Incapacitated and Alone: Health Care Decision-Making for the Unbefriended Elderly. American Bar Association Commission on Law and Aging, 2003.

12. Estimates of Unbefriended Elders • Again, lack of concrete data • Report cites studies - estimate 3% of NH residents (Karp and Wood, 2003) • Survey of medical directors – 3-4% • Hastings Center – “substantial # of NH residents” – upwards of 30% • Consensus that problem is significant

13. ABA Consensus Statement – Health Care Decisions for Unbefriended • Appropriately assess decisional capacity • Diligently search for existing surrogates • Identify those at risk • Intervene with education • Advance directives • Identification of values • Well-designed system • Judicial remedies as last resort

14. More Recent Research • BIFOCAL Magazine – Newsletter of ABA Commission on Law & Aging • Some issues identify state advance directive statutes through surveys • BIFOCAL April 2006 • BIFOCAL Nov/Dec 2009 http://www.americanbar.org/publications/bifocal_home.html

15. Other Resources Aging Today – American Society on Aging Newsletter May/June 2006 • “‘Unbefriended’ Elders Receive Court Protection in California” Lisa Nerenberg. Aging Today, May-June 2006, Vol. XXVII, No. 3. www.agingtoday.org

16. Other Research • Policy brief by The National Consumer Voice for Quality Long-Term Care (Brill-Ortiz, 2010) • National Ombudsman Resource Center (NORC) • Addressed variation in how states assist Unbefriended populations • Highlighted promising practices

17. NORC Report, cont’d • Existing Mechanisms and Practice • Legislative mechanisms to health care decision-making • Institutional practice • Hierarchy Laws • Promising Practices • Strategies and Ideas for Ombudsmen • http://www.ltcombudsman.org/sites/default/files/ombudsmen-support/training/Informational-Brief-on-Unbefriended-Elders_0.pdf

18. National Aging Trends • 2008 Census Data • Population > 65 y.o. = 12% or 38 million • MN population > 65 y.o. = 12.7 • By 2030, 1 in 5 Americans will be over 65 • 71 million • By 2050, the population over 65 will be 88.5 million • Also more diverse overall

19. Projected Population Increase: 65+

20. Projected % of Population Increase: 65+

21. The Boomers are Coming! • MN DHS Transform 2010 Boomer Survey • Of all respondents, 14 percent reported that they live alone • The majority of unmarried/partnered respondents live alone (64%) • Respondents who indicated fair/poor health or chronic condition were twice as likely to live alone

22. Aging Demographics

23. Living Alone • In 2003, 63% of those aged 65-74 lived with a spouse and 23% lived alone • For those aged 85+, 27% lived with a spouse while 48% lived alone • At ages 65 and over, women were 3 times more likely to be widowed (44.3% to 14.3%) • For 75+, 59.2% (women) versus 21.6% (men) “65+ in the United States” U.S. Census Bureau, 2005

24. Living Alone, cont’d • In 2000, 28% of people aged 65+ lived alone • In 2003, 10.5 million people aged 65+ lived alone • 75% of those were women • % of older men living alone grew from 15.7% to 18.8% (betw 1990 – 2003) • In 2003, 13.6% of older men and 20.4% of older women living alone lived in poverty “65+ in the United States” U.S. Census Bureau, 2005

25. Living Alone, cont’d • Marketwatch article: • “Living alone can be dangerous to your health” (11/30/10) • Can bring independence • But also brings higher risk for chronic conditions

26. Isolated Elders • 18% of seniors who live alone have no family to support them if they need help for a few days • 28% if needing help for a few weeks • Seniors in poverty: • 1 in 3 don’t see friends or neighbors for 2 weeks • 1 in 5 don’t have phone contact Aging Alone, The Commonwealth Fund

27. Doug’s Master’s Project • Qualitative study of discharge problems in 2007 • Two safety net hospitals in Metro area • Discharge Planners, Social Workers, Administrators • Estimated 1-2% problematic discharges of Unbefriended population • Explored other options for decision-making

28. Minnesota Initiatives • “Adult Orphans and Unbefriended Elders in MN” • Study by Andrea Palumbo (2008) • Elder Justice Scholar, William Mitchell College of Law • Examined state court rulings on medical decision making • Common Law • Informed consent • Right to privacy

29. Palumbo, cont’d • Minnesota statutes • Competence • Living Will Act • Health Care Directive Act • Incompetence • Uniform Guardianship and Protective Proceedings Act • Survey of MN Nursing Facilities

30. MN Nursing Facility Survey • Distribute to NFs to determine if estimates were applicable to MN • Administered by VOA-MN and Center for Elder Justice and Policy • Capture demographic info • “Adult Orphans” & Unbefriended

31. Survey Results • 387 NFs • 109 Metro • 278 Greater MN • 32.3% Statewide response rate • 31.7% Metro (33 out of 104) • 32.5% Greater MN (91 out of 280) • 85.4% Capacity • 81.4% Metro (3,365 out of 4,136) • 88.1% Greater MN (5,564 out of 6,317)

32. Survey Results, cont’d • Adult Orphans • 2.9% (257) • 4.9% Metro (166) • 1.6% Greater MN (91) • Unbefriended • 1.2% (103) • 1.8% Metro (62) • 0.7% Greater MN (43)

33. Survey Estimates • Extrapolate from survey data • Statewide • 825 Adult Orphans • 325 Unbefriended • Metro • 518 Adult Orphans • 193 Unbefriended • Greater MN • 299 Adult Orphans • 135 Unbefriended

34. Conclusions • Estimates slightly lower than Karp and Wood • Survey didn’t look at non-institutionalized population • Given State policies, numbers may increase in community • Gaps exist in Advance Directive, Guardianship statutes

35. Volunteers of America-MN • Unbefriended Elders: Matching Values with Decisions • DHS CS/SD Grant & Stevens Square Foundation • Develop protocols to identify, locate, support family or decision-makers • Create systems change

36. VOA-MN, cont’d • Project Partners • VOA National Facilities • VOA-MN Senior Services • Evercare Health Systems • Little Brothers Friends of the Elderly • Anoka County • U of MN Med School • Wilder Research

37. VOA-MN, cont’d • Client Criteria • Selected Metro County Resident • 65+ • No emergency contact known • One or more of following: • No Health Care Directive • No verbal health care instructions • At risk of guardianship

38. VOA-MN, cont’d • Project Goals • Avoid unwanted medical care • Increase communication • Identify/sustain support systems • Increase capacity by providers • Increase public awareness

39. UE-MVD, cont’d • Objectives • Complete Health Care Directives • Ensure copies to appropriate places • Train professionals from participating orgs • Develop and share protocols • Identify surrogate decision-makers

40. VOA-MN, cont’d • Findings • Trained over 800 professionals • Served nearly 100 individuals • 63% completed HCDs • 80% of those named agent • 78% had follow-up conversation with MD

41. VOA-MN, cont’d • Location • Nursing home 32.8% • Rents home 31.3% • Assisted living 15.6% • Owns home 10.9% • Foster care 3.1% • Hospital 1.6% • Other 4.7%

42. Wilder Evaluation • Conclusions • Potential feasibility for future programs • Diverse group of organizations can work together to support program’s goals • HCD can be successfully completed • Surrogates can often be found • Need for future training • Opportunities for HCD dialogue and support

43. Wilder Evaluation • Challenges • Resource Intensive • Often difficult to determine mental capacity • Cultural issues would need further attention • Funding shortfalls

44. MN Programs • Live Well At Home: www.mnLiveWellAtHome.org • Veteran Directed Home & Community Based Services • Caregiver supports • Memory care programs and supports • Falls prevention • Linkage Lines: www.MinnesotaHelp.info • Senior Linkage Line: 1-800-333-2433 • Disability Linkage Line: 1-866-333-2466

45. Local Resources • MN Association for Guardianship and Conservatorship (MAGiC): http://www.minnesotaguardianship.org • Volunteers of America – Minnesota: www.voamn.org • Little Brothers Friends of the Elderly: http://littlebrothersmn.org/ • ElderCareRights Alliance: http://www.eldercarerights.org • Vital Aging Network: http://www.vital-aging-network.org

46. Conclusion • Unbefriended Elders are a growing concern • Demographic Shift – Baby Boomers • Health costs • MN and Nationally • Study/Research is becoming more prevalent • Awareness is increasing • Professionals • Public

47. Discussion • Are you familiar with UnbefriendedElders in your workplaceor community? • What are some of the “best practices” that you as professionals, organizations, or individuals use to help this population? • How can Minnesota (U.S.) most effectively meet the needs of this population through its human services, outreach, education, and legislative avenues? • How can these services best be coordinated across the state (nationally)? • Do advance directives and medical decision-making play a role when serving the needs of this population?

48. Contact Info Douglas Silverman State Program Administrator Aging & Adult Services Division MN DHS douglas.silverman@state.mn.us 651-431-5627

49. Thanks for your time and interest!