Transcript Informed Consent for Healthcare Decisions

INFORMED CONSENT for
HEALTHCARE DECISIONS
Supporting Self-Determination...
Training & Education for People with
Disabilities, Their Families & Staff
OBJECTIVES
Recognize the importance of self-determination
in healthcare services
Understand the related legal issues
Identify the elements of true informed consent
Identify the legal hierarchy for medical consent
Be prepared to support people in taking charge
of their healthcare decision-making process
Consider your own personal plan
CONSENT ISSUES
Study by U.S. Surgeon General:
People with DD have more
medical conditions, yet are more
often poorly diagnosed...
over/under treated
Consent often leads to better care
SELF-DETERMINATION
Ability of people to:
Control their lives
Reach goals they have set
Take part fully in their community
Capacity depends on real ability
May necessitate teaching & support to
maximize according to potential
BASIC LEGAL PRINCIPLES
Every person has right to make healthcare
decisions unless determined otherwise
Non-emergency healthcare requires informed
consent
Family/friends preferable to public agencies
as substitute decision makers
Options that place fewest limits on
individual’s decision making are preferred
Decision-making laws are state specific
INDEPENDENT DECISION MAKING - ADULTS
Presumed unless proven otherwise OR court appointed guardian
Determined by actual functioning in specific context (not dx)
Understands basic risks & benefits; can communicate decision
Decision is clearly voluntary (not coerced)
No formal assessment is required
Competence can change over time
Health-General 5-601 – guides the physician:
“Incapable of making an informed decision means...inability
...because the patient is unable to understand the nature, extent,
or probable consequences of...treatment; unable to make a
rational evaluation of the burdens, risks, and benefits of the
treatment...or is unable to communicate a decision” (speech not
required)
INFORMED CONSENT
Three elements:
Information
Understanding
Choice
Assistance can be provided to help individual
make the decision
Ability to make decisions based on continuum
...able to make some but not others
Level of consent is directly related
to level/risk/complexity of service
GENERAL >> GYN, routine dental,
physical exam, minor illness/injury tx
SPECIALIZED >> epilepsy tx, surgery,
birth control
AGGRESSIVE >> cancer, heart attack,
stroke, coma, end of life decisions
GUARDIANSHIP
Assigns all civil rights to the court
Court appoints a representative
Types of Guardianship
Medical
Property
Person
Law requires less restrictive alternatives
be considered
WHY ALTERNATIVES?
Can be tailored to specific situation
Can be used immediately
Less expensive
Increase participation...
self-determination
Not adversarial (guardianship is)
Rely on family & friends vs public agencies
Allow decision-maker broader independent
authority (than surrogate)
HEALTHCARE DECISION TREE
Can the person, with or without
assistance, make and convey an
informed decision?
Yes
Person makes decision
Able to express
wishes about end
of life decisions?
No
Living Will
Can the person designate
another to make the decision?
Yes
Advance Directive for Health Care
No
Is there a family member or close
friend who can make the decision?
Yes
Surrogate Decision-Maker
No
Is this a decision that must be
resolved by Guardianship?
Yes
Petition the court
ADVANCE DIRECTIVE
Adult (over 18)
No court appointed guardian
Communicate – voluntarily designating
someone else to make decisions
Does not require capacity to give informed
consent...
ability to appoint agent but not make healthcare
decision itself
ADVANCE DIRECTIVE
Authorizes a specific decision maker (Agent)
May not be healthcare or DDA service
provider
Can authorize specific decisions or give
broad authority
Can be effective upon signature or specify
conditions to become effective
Living Will & “DNR” orders are types of
advance directive
LIVING WILL
Requirements are same as for Advance
Directive
Three qualifying conditions:
Terminal
Persistent Vegetative State
End Stage
Two physicians must certify
FIVE WISHES ® from Aging With Dignity
Maryland State Optional Form
FIVE WISHES ®
The person I want to make care
decisions for me when I can’t
The kind of medical treatment I want or
don’t want
How comfortable I want to be
How I want people to treat me
What I want my loved ones to know
SURROGATE DECISION MAKER
Person unable to make decision
No Advanced Directive
Law designates hierarchy
2 physicians certify
unless person unable to communicate by any means (ie
unconscious)
May NOT authorize:
Mental health tx
Sterilization
Tx person has clearly rejected
Restrictions on “end-of-life” decisions
SURROGATE DECISION MAKER
Health-General 5-605
May make decisions about health care for a person who has been
certified to be incapable of making an informed decision and has
not appointed a health care agent, in priority order:
Legally appointed guardian;
Patient’s spouse;
Adult child of the patient;
Parent of the patient;
Adult sibling of the patient;
Friend or other relative who:
Is competent; and
Presents an affidavit to physician stating relationship and
facts/circumstances demonstrating regular contact sufficient to be
familiar with patient’s activities, health, and personal beliefs
MENTAL HEALTH
Surrogate consent NOT allowed
for psychiatric tx:
Medication (antipsychotics, antidepressants,
behavior modifying drugs)
Psychotherapy
Hospitalization
Behavioral therapy (BP’s)
May appoint Healthcare Agent
Person-Centered Planning
MUST BE ADDRESSED in the IP
Individual’s ability to advocate
for self in making healthcare decisions
Level of assistance needed for routine &
non-routine medical care decisions
How do we make decisions about medical
care? (family, friends, professionals)
> same for people w/DD
My Health – My Decision
A class to help people who can
make decisions be more involved
in their healthcare decisions
Created by:
Anne Bates, Bill Hill, Kathy Lynn & P Sue Kullen
WE’LL TEACH YOU 4 THINGS TODAY
1. How to make decisions
2. How to have more power over
your health care decision
3. How to pick people you trust to
help you
4. How to plan way ahead
AN EXAMPLE
Should I go to the dentist every 6 months?
What may happen if I do not?
What may happen it I do go?
What other information do I need?
Who could help me if I am scared?
Can I just wait?
What may happen?
What may happen?
Wait
Who can help?
NO
YES
BIG DECISION
What may happen
if I go?
What may happen
if I do not go?
I will have clean healthy
teeth
I will feel better
It may hurt
I feel out of control
I feel scared
Costs money
Going every 6 months may
keep my teeth from hurting
It will still hurt
Wait
People will hassle me
I may lose my teeth
I may have bad breath
Can my dentist give
me something to
help me relax?
I may get bigger problems
Who can help?
Can I talk to
my dentist
ahead of
time?
YES
BIG DECISION
Should I go to the
dentist every 6
months?
NO
TO HAVE POWER OVER YOUR
HEALTHCARE...WHAT MUST HAPPEN?
Doctors (& staff) talk to
you respectfully
More than one choice is
explained
Paperwork is explained
before you sign
You help to schedule
doctor visits
People respect your
privacy
Your comfort is always
considered
People let you know if
something will hurt
You can choose to make
something hard easier...
having someone go with
you, medicine to help you
relax, or trying another
doctor
You are given time...to ask
questions...make
decisions...talk to other
people first
You have the right to ask for these things!
THINK ABOUT PEOPLE YOU KNOW & TRUST
Some you trust with your secrets
Others you may trust to help you when you need
it...these people can help you make good decisions,
or even make decisions for you
For health care, choose a family member or friend who can
help you understand the choice involved
Usually not:
Paid staff
Friends who may not understand, or be able to help
you understand
The person I trust most who I think
could help me make good medical
decisions is…
my sister, Barbara
ANOTHER CHOICE…
You may want the person you trust to
be your “Health Care Agent”
A Health Care Agent can make choices
that may be too hard for you, or when
you are too sick to make them
PLANNING WAY AHEAD
There are some decisions
that may be hard to
think about… but if you are too
sick to say what you want, it may
be better to plan than to have
people guess what you might want
QUESTIONS TO THINK ABOUT
Who would you like to make decisions if you
are too sick to make them?
Is there a hospital you prefer?
Who do you want called if you go to the
hospital?
Would you want visitors, or would you rather
have quiet?
…and there are many more things to think about
Final Thoughts…
Share this booklet with
the people you trust
to help you...
Talk with them about what
you’ve learned
And thank you for participating today!
REFERENCES & ACKNOWLEGMENTS
Informed Consent for Medical & Psychiatric Decisions
Sponsors: Maryland DDA, Arc Maryland, MACS, Arc of Frederick Co
Joseph Anastasio, MSW, MS;
Senior Director of Residential Svcs, Arc of Baltimore
Breck Borcherding, MD
Blue Ridge Behavioral Health Services
Judith Levy, MSW, MA
Kennedy Krieger Inst
Joanna Pierson, PhD
Executive Director, Arc of Frederick Co
Sharon Krevor-Weisbaum, Esq
Mindy Morrell, Esq
My Health – My Decision
Sponsors: Arc of PGC, Ardmore Enterprises, Melwood, Mont Co Dept of Health & Human
Services, Resource Connections of PGC, Arc of Frederick Co, Southern Regional
Office/DDA, Maryland DD Council
Anne Bates
Bill Hill
Kathy Lynn
P Sue Kullen
ADDITIONAL RESOURCES
Informed Consent for Medical & Psychiatric Decisions; 2005
Using Person Centered Planning to Communicate
Healthcare...Wishes...; Leigh Ann Kingsbury, 2004
Medical Decision Making; Arc of Frederick County
Respecting Choices® Advance Care Planning Program;
Gunderson Lutheran Medical Foundation 2004
Thoughts About My Life: A PCP Workbook; MA State Dept of
MR, May 2001
Consent Handbook for Self-Advocates & Support Staff; Cathy
Ficker Terrill, 1999
My Health – My Decision Workbook, 2005