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DEMENTIA ANTIPSYCHOTIC DRUGS & INFORMED CONSENT MARGARET FARLEY J.D., BSN Elder Rights

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Page 1: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

DEMENTIA

ANTIPSYCHOTIC DRUGS

& INFORMED CONSENT MARGARET FARLEY J.D., BSN

Elder Rights

Page 2: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

BOTTOM LINE

ANTI-PSYCHOTIC DRUGS ARE A RECIPE FOR DISASTER WHEN MIXED WITH DEMENTIA

“DOPING” PLUS DEMENTIA = DISASTER

PLUS IT DOESN’T EVEN WORK

Page 3: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Older Adults with Dementia

50-70% living in Kansas Nursing Facilities (estimated)

9,000-12,600 older adults

50%+ living in Assisted Living, Home Plus, Residential Health Care Facilities, and Boarding Care Homes

Page 4: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

KANSAS 50th WORST IN U.S. abuse of anti-psychotics

Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk of being given these dangerous drugs

50th Worst in U.S., Kansas current ranking for use

The federal government has been tracking the use of these drugs since 2011 – by state and by facility.

Since 2011 KS has ranked between 45th worst and 51st worst in the nation (includes District of Columbia)

While other states have improved their ranking – KS has not

Page 5: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

NURSING FACILITY RESIDENT RIGHTS

FEDERAL NURSING HOME REFORM LAW THE OMNIBUS BUDGET RECONCILATION ACT OF 1987 AS AMENDED

MEDICARE PROVISIONS SEC. 1819. [42 U.S.C. 1395i-3]

MEDICAID PROVISIONS SEC. 1919 [42 U.S.C. 1396r]

Page 6: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

NURSING FACILITY RESIDENT RIGHTS

THE NURSING HOME REFORM LAW AND FEDERAL REGULATIONS

REFLECTS STANDARDS OF NURSING PRACTICE, AND, THEREFORE, GENERALLY APPLICABLE TO ALL LONG TERM CARE SUPPORTS AND SERVICES

THE RANGE OF LONG TERM CARE SUPPORTS AND SERVICES – QUALITY OF CARE—QUALITY OF LIFE—ACROSS THE BOARD—BUT TODAY FOCUS IS ON NURSING FACILITIES

Page 7: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

FREEDOM FROM RESTRAINTS

(ii) FREE FROM RESTRAINTS.--The right to be free from physical or mental abuse, corporal punishment, involuntary seclusion, and any physical or chemical restraints imposed for purposes of discipline or convenience and not required to treat the resident's medical symptoms. Restraints may only be imposed--

Page 8: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

NURSING HOME REFORM LAW

Restraints may only be imposed--

(I) to ensure the physical safety of the resident or other residents, and

(II) only upon the written order of a physician that specifies the duration and circumstances under which the restraints are to be used (except in emergency circumstances specified by the Secretary until such an order could reasonably be obtained).

Page 9: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

INFORMED CONSENT – KS LAW

CLIFF NOTES OF INFORMED CONSENT

CIVIL LAW PROHIBITS UNLAWFUL TOUCHING

TOUCHING A PERSON WITHOUT THEIR CONSENT IS BATTERY—EARN A LAWSUIT

TO COMPLY WITH THE LAW OF CONSENT DOCTORS AND HCPs ASK IF THEY CAN

AS CASE LAW DEVELOPED: IN MEDICAL TREATMENT EMPHASIS ON “INFORMED”

Effect of doing it; effect of not doing it; alternatives

Page 10: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

INFORMED CONSENT & NURSING HOME REFORM LAW

(i) FREE CHOICE.--The right to choose a personal attending physician, to be fully informed in advance about care and treatment, to be fully informed in advance of any changes in care or treatment that may affect the resident's well-being, and (except with

respect to a resident adjudged incompetent) to participate in planning care and treatment or changes in care and treatment.

Page 11: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

ELDER RIGHTS: NURSING HOME REFORM LAW

(b) REQUIREMENTS RELATING TO PROVISION OF SERVICES

(1) QUALITY OF LIFE

(A) IN GENERAL

A skilled nursing facility must care for its residents in such a manner and in such an environment as will promote maintenance or enhancement of the quality of life of each resident. MEDICARE PROVISIONS SEC. 1819. [42 U.S.C. 1395i-3]

Page 12: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

NURSING FACILITY DUTIES

(A) IN GENERAL.--To the extent needed to fulfill all plans of care described in paragraph (2), a skilled nursing facility must provide,… provision of-

(i) nursing services and specialized rehabilitative services to attain or maintain the highest practicable physical, mental, and psychosocial well-being of each resident;

Page 13: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

NURSING FACILITY REGULATIONS

(ii) FREE FROM RESTRAINTS.--The right to be free from….. any

physical or chemical restraints imposed for purposes of discipline or convenience and not required to treat the resident's medical symptoms. Restraints may only be imposed--

(I) to ensure the physical safety of the resident or other residents,

and (II) only upon the written order of a physician that specifies the

duration and circumstances under which the restraints are to be used (except in emergency circumstances specified by the Secretary until such an order could reasonably be obtained).

OTHERWISE NOT LEGAL IN A NURSING FACILITY. PERIOD

Page 14: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

NF FEDERAL REGULATIONS

(i) FREE CHOICE. The right to choose a personal attending physician, to be fully informed in advance about care and treatment, to be fully informed in advance of any changes in care or treatment that may affect the resident's well-being, and (except with respect to a resident adjudged incompetent) to participate in planning care and treatment or changes in care and treatment.

INFORMED CONSENT FOR USE OF DRUGS

Page 15: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

COMMUNICATION OF NEEDS

Facility staff who promote use of chemical restraints, may call or see “bad behaviors.”

Best practice identifies the same as an older adult with dementia communicating a need, such as pain, safety/fear, boredom, loneliness, companionship, anxiety, depression

Page 16: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

COMMUNICATION OF UNMET NEEDS

Repetitive Behaviors Calling Out, Yelling, Moaning Pacing or Attempting to exit Hitting out and pushing away Rummaging, in & out of rooms, closing doors Following staff around Sexual touching of self in public or of another without

permission Sundowning – anxiety, irritability, confusion,

hallucinations, typically happens in the late p.m. Undiagnosed pain response in a person with dementia

may appear out of control

Page 17: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

ELDER RIGHTS – FREE OF RESTRAINTS AND UNNECESSARY DRUGS

2017 CHANGES

Medicare and Medicaid certified nursing facility regulations have been amended this year.

CMS SAYS:

“[W]e believe that the requirements finalized in this rule will strengthen the protections for residents concerning pharmacy services and improve our oversight of these [psychotropic] drugs used in LTC facilities.” (Fed. Register, 68766);

Page 18: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

ELDER RIGHTS- FREE OF RESTRAINTS AND UNNECESSARY DRUGS

CENTERS FOR MEDICARE & MEDICAID SERVICES/CMS SAYS:

“These requirements are intended to decrease, and hopefully eliminate, inappropriate psychotropic drug use and the use of medications for reasons other than the resident’s benefit.” (Fed. Register. p. 78767)

Page 19: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

ANTIPSYCHOTIC DRUGS: CURRENT RULES

Address “unnecessary drugs” as part of quality of care rules, §483.25(l)

Include subsection on antipsychotic drugs, §483.25(l)(2): Subsection (i) residents should not get antipsychotic

drugs “unless antipsychotic drug therapy is necessary to treat a specific condition as diagnosed and documented in the clinical record”

Subsection (ii) requires gradual dose reductions, behavioral interventions “unless clinically contraindicated, in an effort to discontinue these drugs”

Page 20: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

ANTIPSYCHOTIC DRUGS: NEW RULES

CMS moves “unnecessary drugs” from quality of care regulations, current §483.25(l), to pharmacy services, §483.45

Creates new broader category of psychotropic drugs, which are defined to include not only antipsychotic drugs, but also anti-depressants, anti-anxiety, and hypnotics. §483.45(c)(3)(i)-(iv)

Redesignates current protections for “unnecessary drugs” (i.e., §483.25(l)(1) (i)-(vi)), using identical language at §483.45(d)(1)-(6))

Repeats current protections for antipsychotic drugs (§483.25(l)(2)(i)-(ii)) for all psychotropic drugs (§483.45(e)(1)-(2))

Page 21: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

PSYCHOTROPIC DRUGS: NEW RULES

Creates new rules for PRN (“as needed”) psychotropic drugs and different rules for PRN antipsychotic drugs

PRN orders for psychotropic drugs are limited to 14 days (unless the attending physician or prescribing practitioner documents rationale in the medical record and indicates the duration for the PRN order), §483.45(e)(4).

PRN orders for antipsychotic drugs are limited to 14 days “and cannot be renewed unless the attending physician or prescribing practitioner evaluates the resident for the appropriateness of that medication”, §483.45(e)(5)

Page 22: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Chemical Restraints: How we got here

WELL, REALLY: UNDERSTAFFING UNDERTRAINING AND UNDERMANAGING

IN THE GOOD OLD DAYS: PHYSICAL

RESTRAINTS POSEYS :WRIST RESTRAINTS MASSIVE BEDSORES; DEPRESSION; WASTING; IMMOBILITY; CONTRACTURES

OBRA---NURSING HOME REFORM LAW NO

MORE UNLESS EVERYTHING ELSE TRIED

Page 23: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

BLACK BOX WARNING

WARNING: INCREASED MORTALITY IN ELDERLY PATIENTS WITH DEMENTIA-RELATED PSYCHOSIS; and SUICIDAL

THOUGHTS AND BEHAVIORS

See full prescribing information for complete boxed warning. Increased Mortality in Elderly Patients with Dementia-Related Psychosis

Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death. Anti-Psychotic medications are not approved for elderly patients with dementia-related psychosis.

Geriatric Use: Consider a lower starting dose (50 mg/day), slower titration and careful monitoring during the initial dosing period in the elderly

Page 24: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Anti-Psychotic Drugs

Conventional Atypical Compazine (prochlorperazine) Abilify (aripiprazole) Haldol (haloperidol) Clozaril (clozapine) Loxitane (loxapine) FazaClo (clozapine) Mellaril (thioridazine) Geodon (ziprasidone) Moban (molindone) Invega (paliperidone) Navane (thiothixene) Risperdal (risperidone) Orap (pimozide) Seroquel (quetiapine) Prolixin (fluphenazine) Zyprexa (olanzapine) Stelazine (trifluoperazine) Symbyax (olanzapine and

fluoxetine) Thorazine (chlorpromazine) Trilafon (perphenazine)

Page 25: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

SIDE EFFECTS

Drowsiness Dizziness

Restlessness Weight gain

Dry mouth Constipation

Vomiting Blurred vision

Low blood pressure Nausea

Seizures

Page 26: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

SIDE EFFECTS

Uncontrollable movements, such as tics and tremors

A low number of white blood cells, which fight infections

A person taking an atypical antipsychotic medication should have his or her weight, glucose levels, and lipid levels monitored regularly by a doctor.

Page 27: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

SIDE EFFECTS

Typical antipsychotic medications can also cause additional side effects related to physical movement, such as:

Rigidity

Persistent muscle spasms

Tremors

Restlessness

Tardive dyskenisia—Parkinson’s - like

Page 28: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Considerations & Health Professionals

Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death (within 12 months).

Physicians who prescribe antipsychotics to elderly patients with dementia-related psychosis should discuss this risk of increased mortality with their patients, patients’ families, and caregivers.

Page 29: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Considerations & Health Professionals

Antipsychotic drugs are not approved for the treatment of dementia-related psychosis.

There is no approved drug for the treatment of dementia-related psychosis.

Healthcare professionals should consider other management options.

Page 30: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

WHO PRESCRIBES

Who are the prescribers

Geriatric Psych Unit Physician

Doctors

Medical Directors (physicians) who often act as Primary Care Physicians for Facility Residents

Nurse practitioners

Physician's assistants

Page 31: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Who Makes the Request

Staff working when a resident is reported to have a problematic behavioral symptom(s)

Typically Director of Nursing or Charge Nurse

Call to the Doctor or Medical Director to request prescription

Request transfer to Geriatric Psych unit for evaluation

Page 32: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

State Inspection/Survey Oversight Citations for F-329

Kansas ranking in number of cited deficiencies per capita identified with serious harm

F-329 (federal regulation) states that each resident must receive only those medications necessary, in the doses and for the duration required, to treat specified conditions after consideration of non-pharmalogical interventions.

A resident's drug regimen must be managed and monitored to promote his or her optimal mental, physical and psychosocial well-being, with particular attention paid to minimized adverse consequences or worsening symptoms.

from - Safeguarding NH Residents & Program Integrity: A National Review of State Survey Agency Performance. 2015 Long Term Care Community Coalition, NY, NY www.nursinghome411.org

Page 33: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Safeguarding Nursing Home Residents

18,403 older Kansans live in nursing facilities

21.98% Average A-P Drugging reported on Nursing Home Compare website by Kansas facilities

25.29% MDS % of Residents Given A-P Drugs

Actual drugging is higher than reported by the facilities

Average risk-adjusted state drugging rate is 18.95% while average state citation rate is .31%. Little enforcement.

F tag 329 cited 631 times over 3 years, only 5 were for Actual Harm. And this even with well-documented harmful side-effects.

Safeguarding NH Residents & Program Integrity: A National Review of State Survey Agency Performance. 2014 Long Term Care Community Coalition NY, NY

Page 34: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Surveyor/Inspector Review & Advocacy

To ensure compliance with F329, a surveyor will determine: Resident taking only medications clinically indicated & at dosage

and duration to meet assessed needs Non-pharmacological approaches attempted and documented Gradual dose reductions for antipsychotics Comprehensive care plan reflect appropriate monitoring of

medications and risk of adverse consequences Facility medication management system to monitor effectiveness

of medications and evaluate worsening signs related to medication

Monthly medication regimen reviews by pharmacist How does the nursing center identifies and reports irregularities from McKnight’s Long-Term Care News - F-Tag in focus: F-329. Sonja Quale, Pharm.D., VP & CCO, PharMerica Corporation. October 31, 2016.

Page 35: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Surveyor/Inspector Review & Advocacy

Revisions to guidance in the State Operations Manual issued in 2016 highlight the importance of reducing the risk of psychosocial harm associated with noncompliance with specific regulations.

Recommendations include:

Use non-pharmacological approaches for distressed behaviors

Focus on identifying underlying causes of delirium, a common adverse medication side-effect, also factors such as electrolyte imbalance and infection

Monitor psychosocial functioning resulting from medication side effect

Watch for signs/symptoms/conditions associated with medications, e.g. apathy, lethargy, and mental status changes

from McKnight’s Long-Term Care News - F-Tag in focus: F-329. Sonja Quale, Pharm.D., VP & CCO, PharMerica Corporation. October 31, 2016 .

Page 36: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Surveyor/Inspector Review & Advocacy

Additions to guidance noted in the F329 deficiency categorization

Failure to recognize symptoms of increased confusion and newly developed inability to do activities of daily living and resulting in hospitalization are due to excessive doses of antipsychotic given without adequate clinical indication

Failure to recognize the continuation of an antipsychotic, originally prescribed for delirium, has caused significant changes in the resident's behavior from where she/he started

Failure to re-evaluate continuation of an antipsychotic originally prescribed for acute delirium which resulted in significant side effects

from McKnight’s Long-Term Care News - F-Tag in focus: F-329. Sonja Quale, Pharm.D., VP & CCO, PharMerica Corporation. October 31, 2016 .

Page 37: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Protecting against Chemical Restraint

Ways to protect against the wrongful use of anti-psychotics to control behavior in persons

Put it in your power of attorney (DPOA) that you do not want Anti-Psychotic drugs which are contraindicated for your condition. Withhold authority-issues

Actively participate in all care plan meetings

Don't succumb to threats that the only way to stay in the facility is to take the drugs

Use our informed consent form as a guide to best practices in informed consent

Page 38: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Protecting Against Chemical Restraint

Call your Long Term Care Ombudsman –

(877) 662 - 8362 Toll Free

Email [email protected]

Report to the elder abuse hotline at

KS Dept. for Aging and Disability Services Complaint Unit 800-842-0078

8 am to 5 pm, Monday through Friday, excluding holidays

Page 39: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

THE BASICS OF

INFORMED CONSENT

AND

SUPPORTED DECISION MAKING

MITZI MCFATRICH, MDIV, BS, NTS

EMPOWERING OLDER ADULTS & DECISION MAKING

Page 40: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk
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Making Decisions for Another

Assumptions About Persons Willing to Stand In:

We are providing an important function to help assure another’s rights and dignity are respected and they receive needed care

Our decisions and actions on behalf of another are shaped by the knowledge we have access to, our values and beliefs, our life experiences, and our willingness to question

Page 45: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Making Decisions for Another

Is very hard to do sometimes

We may question our decisions, feel inadequate or guilty, especially when there is a negative impact on the person we are acting for

We don’t know where to look or how to find the resources which could help us

Page 46: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Decision Making Models

Medical Authority

Medical Professionals Know Best

Let the Doctor Decide

Older Adults May Be Generationally More Comfortable with this Choice

Page 47: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Decision Making Models

“In the Best Interest Of” in all actions, the best interests of the person you are acting on behalf

of shall be a primary consideration

Determining best interests requires that you consider, evaluate, and balance all the elements needed to make a decision in a specific situation for a specific individual

For families, what constitutes the best interests expands beyond medical considerations, to include the wish to lead a “normal” life, having control over certain aspects of treatment, and maintaining one's identity (e.g., through religion).

Family members don’t always agree on what is Best Interest

Certain non-medical aspects of Best Interest may at times collide with medical aspects, and result in different professional and family views about what course of action is appropriate.

Page 48: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

Decision Making Models

Supported Decision Making Empowers the Older Adult

Respects their Autonomy

Encourages the Older Adult’s Participation in Decision Making

Requires Time and Creativity on the Part of the Person(s) Assisting Supported Decision Making

ABA Resource “PRACTICAL” available at www.ambar.org/practicaltool

Page 49: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

SUPPORTED DECISION MAKING -PRACTICAL

Presume Guardianship is not needed

Consider less restrictive options like financial or health care power of attorney, advance directive, trust, or supported decision-making

Review state statute for requirements about considering such options

Page 50: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

SUPPORTED DECISION MAKING

REASON – Clearly identify the reason for concern

Can the individual meet some or all of these needs

Money Management – accounts, assets, benefits, recognize being taken advantage of

Health Care – decide about medical treatment, take meds as needed, maintain hygiene and diet, avoid high-risk behaviors

Relationships – behave appropriately with others

Community Living – Live independently, maintain habitable living space

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SUPPORTED DECISION MAKING

REASON continued

Personal Decision Making – understand legal documents, communicate wishes, understand legal consequences of choices and behavior

Personal Safety – avoid common dangers, recognize and avoid abuse, know what to do in an emergency

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SUPPORTED DECISION MAKING

ASK if a triggering concern may be caused by temporary or reversible conditions.

Medical – Infections, Dehydration, Delirium, Dental Issues, Malnutrition, Pain

Hearing or Vision Loss

Medication Side Effects or Interactions

Stress, Grief, Depression, Disorientation

Stereotypes or Cultural Barriers

Look for steps to reverse the condition or postpone a decision until the condition improves

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SUPPORTED DECISION MAKING

COMMUNITY – Can concerns be addressed by connecting the person to family or community resources and making accommodations

Possible Supports to Meet the Needs

In-home care, adult day care, personal attendant, delivered meals, transportation

Case management, counseling, mediation

Professional money management

Page 54: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

SUPPORTED DECISION MAKING

COMMUNITY continued Informal Supports from Family/Friends:

Assistance with medical and money management Communication assistance Identifying potential abuse

Accommodations

Assistance with medical and money management Communication assistance Identifying potential abuse Assistive technology Home modifications

Page 55: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

SUPPORTED DECISION MAKING

COMMUNITY continued

Residential Setting Supported housing or group home

Senior residential building

Assisted living or nursing home

Page 56: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

SUPPORTED DECISION MAKING

TEAM

Friends, family, or professionals available to help

Surrogate decision maker appointed

IDENTIFY

Areas of strengths and limitations in decision making

Can the person explain her/his reasoning when making decisions

Maintain consistent decisions and primary values over time

Understand the consequences of their decisions

Page 57: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

SUPPORTED DECISION MAKING

CHALLENGES

Screen for and address potential challenges to supports

Eligibility, cost, timing, location

Risk to public benefits

Screen for and address concerns about supporters

Risk of Undue influence;

Abuse, neglect, exploitation risk

Lack of understanding person’s medical, mental health needs

Disputes with family members

Page 58: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

SUPPORTED DECISION MAKING

APPOINT legal representative or surrogate consistent with person’s values and preferences

Possibilities

Health Care Power of Attorney, or Advance Directive

Health Care Surrogate Under State Law

Financial Power of Attorney

Trustee

Social Security Payee

VA Fiduciary

Other Designee - Informal or Legal Agreement

Page 59: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

SUPPORTED DECISION MAKING

LIMIT any needed guardianship petition and order

Limit guardianship to what is absolutely needed Specific Property/Financial Decisions

Only Property/Finances

Specific Personal/Health Care Decisions

Only Personal/Health Care Decisions

State how guardian will involve person in decision making

Develop Person Centered Care Plan

Reassess Periodically to modify or restoration of rights

Page 60: Elder Rights - Kansas Advocates for Better Care (KABC) · KANSAS 50 th WORST IN U.S. abuse of anti-psychotics Between 1 in 4 and 1 in 5 older adults in KS nursing homes is at risk

CONTACT KABC

[email protected] email

www.kabc.org website

1-800-525-1782 or 785-842-3088

536 Fireside Court, Suite B, Lawrence, KS 66049