Decision-Makers of Last Resort Trends in Health Care Surrogacy for Isolated Elders; Public Guardianship Naomi Karp & Erica Wood ABA Commission on Law and Aging October 21, 2004

Incapacitated and Alone “These are the most vulnerable patients because no one cares deeply if they live or die.... We owe these patients the highest level of ethical and medical scrutiny; we owe it to them to protect them from over-treatment and under-treatment;... We owe it to them to help them live better or to die in comfort and not alone.” --Bioethics consultant at major academic medical center.

Overview of Session  How are health care decisions made for “unbefriended” elders? Who are “unbefriended” elders? What usually happens? Statutory and institutional solutions  What is the status of state public guardianship programs? National study underway Overview of 7 states, showing diversity of systems – or none

Unbefriended Population  No decisional capacity to give informed consent  No advance directive  No capacity to execute advance directive  No guardian  No family or friends

Real World – What Happens  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

Statutory & Institutional Solutions  Health care consent statutes with additional category  Judicial remedies  Surrogate decision-making committees  Institutional ethics committees  Public guardianship

Health Care Consent Statutes  Close to 40 states have statutes, but only a few provide for unbefriended  Designation of last resort decision-maker  Physician; physician + other health care provider or ethics committee; clergy  Pros & cons of physicians deciding

Judicial Remedies  Procedure to petition court for a health care decision or designation of decision-maker -- At least 7 states -- Georgia – temporary health care placement  Temporary medical treatment guardian

Surrogate Decision-Making Committees  Proxy decision-makers authorized by law  Administrative hearing process  New York, Iowa, Texas  Would this work for unbefriended elderly?

Ethics Committees  Exist in most hospitals & some nursing homes  Consultative vs. decision- making  Santa Clara County policy  Veterans’ Administration  Pros & cons

Public Guardianship  Definition  History  1980 study – Schmidt et. al.  Study underway Center on Aging, University of KY & ABA Commission on Law and Aging National survey 7-state focus – FL, KY, IL, IN, IA, MO, WI

Is there a state program?  FL, IL, IN, KY, MO have a statewide program  IA & WI – no program

Administrative Structure & Location?  FL – state program housed in Dept on Aging; 16 local programs covering 23 of 67 counties  IL – state program in Guardianship & Advocacy Commission with 8 regional offices; + statewide system of county offices.  KY – state program in Cabinet for Health & Family Services; six guardianship service regions covering entire state  IN – state program in Family & Social Services Admin.; six local offices  MO – statewide system of public administrators serve public guardianship function.

How funded?  FL – for FY , 20% from Statewide Pub. Guard. Program, 80% from other sources (such as county, United Way, donations; formerly filing fees). “Direct support organization” & “Joining Forces” matching grant program, no approp.  IL – state funds and client fees  KY – federal social services block grant, state general funds, Medicaid funds  IN – state funds  MO – county funds and client fees

What services provided?  FL – personal and financial decision-making; monitor, arrange & advocate for services; rep payee  IL – personal and financial decision-making; monitor, arrange and advocate for services; rep. payee  KY – personal and financial decision-making; monitor, arrange, advocate for and directly provide services

Services, cont’d  IN – personal and financial decision-making; monitor, arrange, advocate for and directly provide services; rep. payee  MO- personal and financial decision-making; monitor, arrange, advocate for and directly provide services; financial and health care powers of atty., rep. payee, trustee, personal rep. of estates

How staffed?  FL – Statutory ratio of 1:40; range of paid staff in local programs including lawyers  IL – paid staff; decision-makers have BA or higher, depending on decision  KY – paid staff; decision-makers have BA and one year experience (with a few exceptions)

Staffing, cont’d  IN – paid staff; gen’ly BA with 2 years experience; new legislation creates volunteer pub. guard. program for seniors  MO – elected and paid County Public Administrators; no educational prerequisites

Clients Served?  FL – ages and 65+;majority 65+. Approx 1660 individuals served in  IL – ages and 65+; majority MR/DD; 97% MA or SSI recipients; majority white. Served 5367 in  KY – ages and 65+; no diagnostic data; 95% MA eligible; majority white. Served 2460 individuals in  IN – no statewide information  MO - no statewide information

Key Questions  What is unmet need?  Is staffing sufficient?  Should there be a staff:ward ratio?  What roles do staff play?  What is cost per client?  How are decisions made on clients’ behalf?  What are strengths & weaknesses of programs?  How does public guardianship stack up with other mechanisms of last resort?