elder rights - kansas advocates for better care (kabc) · kansas 50 th worst in u.s. abuse of...
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DEMENTIA
ANTIPSYCHOTIC DRUGS
& INFORMED CONSENT MARGARET FARLEY J.D., BSN
Elder Rights
BOTTOM LINE
ANTI-PSYCHOTIC DRUGS ARE A RECIPE FOR DISASTER WHEN MIXED WITH DEMENTIA
“DOPING” PLUS DEMENTIA = DISASTER
PLUS IT DOESN’T EVEN WORK
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
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
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]
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
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--
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).
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
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.
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]
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;
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
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
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
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
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);
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)
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”
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))
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)
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
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
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)
SIDE EFFECTS
Drowsiness Dizziness
Restlessness Weight gain
Dry mouth Constipation
Vomiting Blurred vision
Low blood pressure Nausea
Seizures
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.
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
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.
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.
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
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
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
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
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.
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 .
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 .
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
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
THE BASICS OF
INFORMED CONSENT
AND
SUPPORTED DECISION MAKING
MITZI MCFATRICH, MDIV, BS, NTS
EMPOWERING OLDER ADULTS & DECISION MAKING
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
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
Decision Making Models
Medical Authority
Medical Professionals Know Best
Let the Doctor Decide
Older Adults May Be Generationally More Comfortable with this Choice
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.
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
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
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
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
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
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
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
SUPPORTED DECISION MAKING
COMMUNITY continued
Residential Setting Supported housing or group home
Senior residential building
Assisted living or nursing home
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
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
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
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
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