AGS Survey one page draft

Javascript must be enabled

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?

Outpatient - home or clinic based

Outpatient - other

Inpatient - acute care

Inpatient - rehab / subacute

Inpatient - long term care

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"?

Yes

In the past year, how often have you cared for an "unbefriended" older adult?

Weekly (>1 time per week)

Monthly (1-3 times per month)

Quarterly (3-4 times per year)

Annually (1 time per year)

Never

Have your unbefriended patients/ your team faced any of these problems?

Matrix row labels are in this column	Never	Rarely	Sometimes	Frequently
Prolonged hospital stay, past a medically necessary point	Value for matrix segment M1, row R1, column C1	Value for matrix segment M1, row R1, column C2	Value for matrix segment M1, row R1, column C3	Value for matrix segment M1, row R1, column C4
Delay in treatment or surgery	Value for matrix segment M1, row R2, column C1	Value for matrix segment M1, row R2, column C2	Value for matrix segment M1, row R2, column C3	Value for matrix segment M1, row R2, column C4
Delay in appropriately transitioning the patient to hospice or end of life care	Value for matrix segment M1, row R3, column C1	Value for matrix segment M1, row R3, column C2	Value for matrix segment M1, row R3, column C3	Value for matrix segment M1, row R3, column C4
Unable to provide the patient something that may improve quality of life	Value for matrix segment M1, row R4, column C1	Value for matrix segment M1, row R4, column C2	Value for matrix segment M1, row R4, column C3	Value for matrix segment M1, row R4, column C4
Delay in authorizing charges/coverage for care	Value for matrix segment M1, row R5, column C1	Value for matrix segment M1, row R5, column C2	Value for matrix segment M1, row R5, column C3	Value for matrix segment M1, row R5, column C4
Loss of rehabilitation ability/potential in patient	Value for matrix segment M1, row R6, column C1	Value for matrix segment M1, row R6, column C2	Value for matrix segment M1, row R6, column C3	Value for matrix segment M1, row R6, column C4
We had to continue with what seemed like medically non-beneficial care	Value for matrix segment M1, row R7, column C1	Value for matrix segment M1, row R7, column C2	Value for matrix segment M1, row R7, column C3	Value for matrix segment M1, row R7, column C4
I experienced personal distress because of an inability to act in my professional role	Value for matrix segment M1, row R8, column C1	Value for matrix segment M1, row R8, column C2	Value for matrix segment M1, row R8, column C3	Value for matrix segment M1, row R8, column C4
The patient was in physical or psychological distress	Value for matrix segment M1, row R9, column C1	Value for matrix segment M1, row R9, column C2	Value for matrix segment M1, row R9, column C3	Value for matrix segment M1, row R9, column C4
Other: describe below	Value for matrix segment M1, row R10, column C1	Value for matrix segment M1, row R10, column C2	Value for matrix segment M1, row R10, column C3	Value for matrix segment M1, row R10, column C4

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.

Unrepresented adult

Incapacitated and alone

Vulnerable isolated adult

Unaccompanied adult

Solitary adult

Incapacitated adult without advocates

Surrogate-less

Proxy-less

Proxy Vacans (Latin for "vacant proxy")

Non Advocatus (Latin for "no advocate")

Non Surrogatus (Latin for "no surrogate")

Non Amicum (Latin for "no friend")

Adultum Solum (Latin for "alone adult")

None of these - I prefer the term "unbefriended"

What is your highest professional degree?

MD/ DO

PhD

PharmD

MSW

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"?

Yes

In the past year, how often have you cared for an "unbefriended" older adult?

Weekly (>1 time per week)

Monthly (1-3 times per month)

Quarterly (3-4 times per year)

Annually (1 time per year)

Never

Which clinical situations have brought a patient’s unbefriended status to your attention?

Matrix row labels are in this column	Rarely	Sometimes	Frequently	N/A
Consent for medical procedure	Value for matrix segment M1, row R1, column C1	Value for matrix segment M1, row R1, column C2	Value for matrix segment M1, row R1, column C3	Value for matrix segment M1, row R1, column C4
Concern re: medication self-management	Value for matrix segment M1, row R2, column C1	Value for matrix segment M1, row R2, column C2	Value for matrix segment M1, row R2, column C3	Value for matrix segment M1, row R2, column C4
Concern re: safety	Value for matrix segment M1, row R3, column C1	Value for matrix segment M1, row R3, column C2	Value for matrix segment M1, row R3, column C3	Value for matrix segment M1, row R3, column C4
Concern re: driving	Value for matrix segment M1, row R4, column C1	Value for matrix segment M1, row R4, column C2	Value for matrix segment M1, row R4, column C3	Value for matrix segment M1, row R4, column C4
Elder Abuse/ Adult Protective issue	Value for matrix segment M1, row R5, column C1	Value for matrix segment M1, row R5, column C2	Value for matrix segment M1, row R5, column C3	Value for matrix segment M1, row R5, column C4
Advance care planning process	Value for matrix segment M1, row R6, column C1	Value for matrix segment M1, row R6, column C2	Value for matrix segment M1, row R6, column C3	Value for matrix segment M1, row R6, column C4
Other: please describe below	Value for matrix segment M1, row R7, column C1	Value for matrix segment M1, row R7, column C2	Value for matrix segment M1, row R7, column C3	Value for matrix segment M1, row R7, column C4

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).

What practices, strategies, or resources have you used to meet the needs of unbefriended older adults in your practice/ institution?

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.

Unrepresented adult

Incapacitated and alone

Vulnerable isolated adult

Unaccompanied adult

Solitary adult

Incapacitated adult without advocates

Surrogate-less

Proxy-less

Proxy Vacans (Latin for “vacant proxy”)

Non Advocatus (Latin for “no advocate”)

Non Surrogatus (Latin for “no surrogate”)

Non Amicum (Latin for “no friend”)

Adultum Solum (Latin for “alone adult”)

None of these – I prefer the term “unbefriended”

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?

Yes

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).

Time

Advance care planning supported by Medicare reimbursement

Care manager

Social worker

Pathway to partner with community or volunteer agency

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.

Elder orphan

Isolated vulnerable adult

Lone elder

Isolated adult at risk

Adult without advocates

Unprotected adult

Companionless

Solitary adult

Solo adult

Proxy Vacans (Latin for “vacant proxy”)

Non Advocatus (Latin for “no advocate”)

Non Surrogatus (Latin for “no surrogate”)

Non Amicum (Latin for “no friend”)

Adultum Solum (Latin for “alone adult”)

None of these – I prefer the term “adult orphan”

What is your highest professional degree?

MD / DO

PhD

PharmD

MSW

Other: specify:

What U.S. state do you practice in?