Members of the American Geriatrics Society,

We request your participation in a brief online survey about your experiences working with socially isolated and vulnerable elderly patients.


Purpose:  The “AGS Position Statement: Making Medical Treatment Decisions for Unbefriended Older Adults”1 hich proposed policy and practice guidelines for patients who are “unbefriended” or at risk for becoming so.  We want to learn more about your experiences working with such patients and the strategies you have developed.

 

Information about the survey:

  • It’s completely voluntary.
  • Your answers will remain anonymous – no identifying information will be collected about your or your patients.  Your IP address will not be collected. 
  • It will take about 15 minutes to complete. 
  • The survey is being distributed to the AGS membership nationwide (approx. 5,000 members).
  • At the end of the survey, if you are interested, you may enter a drawing to win a free iPad.
  • The project has been reviewed and approved by the Research and Institutional Review Board Committees of VA Boston Healthcare System and the Ethics Committee and executive board of the American Geriatrics Society.
  • The project received funding from the Guardianship Policy Institute.

 

We are eager to gain your valuable perspective on these important issues.

 

Sincerely, 

 

Timothy Farrell, M.D., AGSF

University of Utah School of Medicine

VA Salt Lake City Geriatric Research, Education, and Clinical Center

 

Eric Widera, M.D.

University of California, San Francisco

San Francisco VAMC

 

Aanand Naik, M.D.

Baylor College of Medicine

Michael E. DeBakey VAMC

 

Jennifer Moye, Ph.D., ABPP

New England Geriatric Research Education and Clinical Center

Harvard Medical School

 

Casey Catlin, M.A.

Boston VA Research Institute, Inc.

Boston VAMC

 

1Farrell, T., Widera, E., Rosenberg, L., Rubin, C.D., Naik, A.D., Braun, U., Torke, A., Li, I., Vitale, C., Shega, J.; Ethics, Clinical Practice and Models of Care, and Public Policy Committees of the AGS.

AGS Position Statement: Making Medical Treatment Decisions for Unbefriended Older Adults. Journal of the Am Geriatr Soc. 2016 Nov 22; doi: 10.1111/jgs.14586. PMID:27874181.



We will use the following definitions from the AGS position statement.  Some find these problematic – we’ll ask you more about this later.


DEFINITIONS:


An "unbefriended older adult" is a person who: 

(a) lacks decisional capacity to provide informed consent;

(b) has not executed an advance directive;

(c) lacks a legal surrogate (e.g., is without a family / friends - isolated, estranged, bereaved - and there is not a professional acting in that role)

 

An "adult orphan" is an older adult at risk of becoming unbefriended who: 

     (a) currently retains decisional capacity;

     (b) has not executed an advance directive;

     (c) lacks a legal surrogate (e.g. is without a family / friends - isolated, estranged, bereaved - and there is not a professional acting in that role)


Therefore, both a person considered "unbefriended" and an "adult orphan" are isolated and lack advance directives.  The difference is that the term "unbefriended" is used to describe a person who currently lacks capacity, whereas an "adult orphan" retains capacity.



What is the clinical setting you work in most often?
df2b367a1ae24426b435da1656cf14d5 Outpatient - home or clinic based 
df2b367a1ae24426b435da1656cf14d5 Outpatient - other 
df2b367a1ae24426b435da1656cf14d5 Inpatient - acute care 
df2b367a1ae24426b435da1656cf14d5 Inpatient - rehab / subacute 
df2b367a1ae24426b435da1656cf14d5 Inpatient - long term care 
df2b367a1ae24426b435da1656cf14d5 Inpatient - other 
What is your panel size (outpatient) or average daily census (inpatient)?

If your primary work setting is INPATIENT, please answer the questions below, #3 - #12.

If your primary work setting is OUTPATIENT or LONG TERM CARE, please skip to question #13.  

If you work in both INPATIENT and OUTPATIENT or LONG TERM CARE, you may answer all questions if you wish.

 

Definition Reminder.  An "unbefriended older adult"

> No decisional capacity

> No advanced directive

> No legal surrogate (family or professional)


Before this survey, had you heard of the term "unbefriended"?

df2b367a1ae24426b435da1656cf14d5 Yes 
df2b367a1ae24426b435da1656cf14d5 No 
In the past year, how often have you cared for an "unbefriended" older adult?
df2b367a1ae24426b435da1656cf14d5 Weekly (>1 time per week) 
df2b367a1ae24426b435da1656cf14d5 Monthly (1-3 times per month) 
df2b367a1ae24426b435da1656cf14d5 Quarterly (3-4 times per year) 
df2b367a1ae24426b435da1656cf14d5 Annually (1 time per year) 
df2b367a1ae24426b435da1656cf14d5 Never 
Have your unbefriended patients/ your team faced any of these problems?
NeverRarelySometimesFrequently
Prolonged hospital stay, past a medically necessary point
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Delay in treatment or surgery
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Delay in appropriately transitioning the patient to hospice or end of life care
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Unable to provide the patient something that may improve quality of life
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Delay in authorizing charges/coverage for care
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Loss of rehabilitation ability/potential in patient
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
We had to continue with what seemed like medically non-beneficial care
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
I experienced personal distress because of an inability to act in my professional role
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
The patient was in physical or psychological distress
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Other: describe below
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
If Other, please describe - also any additional comments?

Please briefly describe a recent example of a situation you encountered with an unbefriended older adult. What was challenging about working with this patient? How did you proceed?

For example:  “An adult with dementia and without known family or friends  lacked consent capacity.  Nursing home placement was recommended to facilitate rehabilitation from a hip fracture.  The nursing home would not accept the patient without a legal surrogate.  The patient remained in the inpatient setting for 68 days.  It was difficult to manage him on the inpatient setting due to his wandering and other dementia-related behaviors.”
What practices, strategies, or resources have you used to meet the needs of unbefriended older adults in your practice/ institution?

Many find the term “unbefriended” to be stigmatizing, undesirable, or not adequately descriptive. Alternatives are often wordy (e.g., “incapacitated, isolated, and unrepresented”).  Do you have suggestions for a different term to describe an older adult who lacks decisional capacity, lacks advance directives, and lacks a legal surrogate?

Below is a list of possible alternative terms for “unbefriended” (adult who lacks decisional capacity, lacks advance directives, and lacks family or friends able to serve as surrogate).

Please rank your top three choices (1-most desirable) for an alternative term.
Top ChoiceSecond ChoiceThird Choice
      1            2            3      
Unrepresented adult
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Incapacitated and alone
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Vulnerable isolated adult
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Unaccompanied adult
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Solitary adult
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Incapacitated adult without advocates
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Surrogate-less
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Proxy-less
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Proxy Vacans (Latin for "vacant proxy")
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Non Advocatus (Latin for "no advocate")
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Non Surrogatus (Latin for "no surrogate")
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Non Amicum (Latin for "no friend")
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Adultum Solum (Latin for "alone adult")
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
None of these - I prefer the term "unbefriended"
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
What is your highest professional degree?
df2b367a1ae24426b435da1656cf14d5 MD/ DO 
df2b367a1ae24426b435da1656cf14d5 PA  
df2b367a1ae24426b435da1656cf14d5 NP 
df2b367a1ae24426b435da1656cf14d5 RN 
df2b367a1ae24426b435da1656cf14d5 PhD 
df2b367a1ae24426b435da1656cf14d5 PharmD 
df2b367a1ae24426b435da1656cf14d5 MSW 
df2b367a1ae24426b435da1656cf14d5 Other 
What U.S. state do you practice in?
Optional: If you would be interested in participating in a future focus group or interview to discuss these topics in greater depth, please leave your name and contact information (email address or phone number) so we may follow up with you.

OUTPATIENT & LONG TERM CARE survey begins here



 

Definition Reminder.  An "unbefriended older adult"

> No decisional capacity

> No advanced directive

> No legal surrogate (family or professional)


Before this survey, had you heard of the term "unbefriended"?
df2b367a1ae24426b435da1656cf14d5 Yes 
df2b367a1ae24426b435da1656cf14d5 No 
In the past year, how often have you cared for an "unbefriended" older adult?
df2b367a1ae24426b435da1656cf14d5 Weekly (>1 time per week) 
df2b367a1ae24426b435da1656cf14d5 Monthly (1-3 times per month) 
df2b367a1ae24426b435da1656cf14d5 Quarterly (3-4 times per year) 
df2b367a1ae24426b435da1656cf14d5 Annually (1 time per year) 
df2b367a1ae24426b435da1656cf14d5 Never 
Which clinical situations have brought a patient’s unbefriended status to your attention?
RarelySometimesFrequentlyN/A
Consent for medical procedure
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Concern re: medication self-management
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Concern re: safety
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Concern re: driving
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Elder Abuse/ Adult Protective issue
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Advance care planning process
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Other: please describe below
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
If other, please describe - also any additional comments?
Please briefly describe a recent example of a situation you encountered with an unbefriended older adult. What was challenging about working with this patient? How did you proceed? (Note: do not include any identifying information).
For example:  “An adult with dementia and without known family or friends lacked consent capacity.  Nursing home placement was recommended to facilitate rehabilitation from a hip fracture.  The nursing home would not accept the patient without a legal surrogate.  The patient remained in the inpatient setting for 68 days.  It was difficult to manage him on the inpatient setting due to his wandering and other dementia-related behaviors.”

What practices, strategies, or resources have you used to meet the needs of unbefriended older adults in your practice/ institution?
Many find the term “unbefriended” to be stigmatizing, undesirable, or not adequately descriptive. Alternatives are often wordy (e.g., “incapacitated, isolated, and unrepresented”). Do you have suggestions for a different term to describe an older adult who lacks decisional capacity, lacks advance directives, and lacks a legal surrogate? 
 
Below is a list of possible alternative terms for “unbefriended” to describe an older adult who lacks decisional capacity, lacks advance directives, and lacks family or friends able to serve as surrogate.

Please rank your top three choices (1-most desirable) for an alternative term.
Top ChoiceSecond ChoiceThird Choice
      1            2            3      
Unrepresented adult
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Incapacitated and alone
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Vulnerable isolated adult
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Unaccompanied adult
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Solitary adult
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Incapacitated adult without advocates
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Surrogate-less
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Proxy-less
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Proxy Vacans (Latin for “vacant proxy”)
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Non Advocatus (Latin for “no advocate”)
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Non Surrogatus (Latin for “no surrogate”)
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Non Amicum (Latin for “no friend”)
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Adultum Solum (Latin for “alone adult”)
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
None of these – I prefer the term “unbefriended”
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5

ADULT ORPHANS:


These final questions seek your input on ways to prevent “adult orphans” from becoming unbefriended. 

 
 

Definition Reminder.  An "adult orphan"

> Has decisional capacity

> No advanced directive

> No legal surrogate (family or professional)


Are there things you do to identify adult orphans in your practice / institution?
df2b367a1ae24426b435da1656cf14d5 Yes 
df2b367a1ae24426b435da1656cf14d5 No 
df2b367a1ae24426b435da1656cf14d5 Unsure 
If you have instituted or could envision a process, please describe:
What would your practice need in order to better identify adult orphans and prevent them from becoming unbefriended? Check all that apply (if any).
1d3fc4bac4d54575acd2a2af5b4aa422 Time 
1d3fc4bac4d54575acd2a2af5b4aa422 Advance care planning supported by Medicare reimbursement 
1d3fc4bac4d54575acd2a2af5b4aa422 Care manager 
1d3fc4bac4d54575acd2a2af5b4aa422 Social worker 
1d3fc4bac4d54575acd2a2af5b4aa422 Pathway to partner with community or volunteer agency 
1d3fc4bac4d54575acd2a2af5b4aa422 Other 
Many find the term “adult orphan” to be stigmatizing, undesirable, or not adequately descriptive. Do you have suggestions for a different term to describe an older adult who retains decisional capacity, has not executed an advance directive, and lacks a legal surrogate?
Below is a list of possible alternative terms for “adult orphan” to describe an older adult who retains decisional capacity, has not executed an advance directive, and lacks a legal surrogate. Please rank your top three choices (1-most desirable) for an alternative term.
Top ChoiceSecond ChoiceThird Choice
      1            2            3      
Elder orphan
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Isolated vulnerable adult
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Lone elder
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Isolated adult at risk
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Adult without advocates
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Unprotected adult
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Companionless
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Solitary adult
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Solo adult
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Proxy Vacans (Latin for “vacant proxy”)
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Non Advocatus (Latin for “no advocate”)
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Non Surrogatus (Latin for “no surrogate”)
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Non Amicum (Latin for “no friend”)
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
Adultum Solum (Latin for “alone adult”)
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
None of these – I prefer the term “adult orphan”
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
df2b367a1ae24426b435da1656cf14d5
What is your highest professional degree?
df2b367a1ae24426b435da1656cf14d5 MD / DO 
df2b367a1ae24426b435da1656cf14d5 NP 
df2b367a1ae24426b435da1656cf14d5 PA 
df2b367a1ae24426b435da1656cf14d5 RN 
df2b367a1ae24426b435da1656cf14d5 PhD 
df2b367a1ae24426b435da1656cf14d5 PharmD 
df2b367a1ae24426b435da1656cf14d5 MSW 
df2b367a1ae24426b435da1656cf14d5 Other: specify: 
What U.S. state do you practice in?
Optional: If you would be interested in participating in a future focus group or interview to discuss these topics in greater depth, please leave your name and contact information (email address or phone number) so we may follow up with you.