Developmental Disability and Informed Consent
Objectives
1. Outline ethical and legal considerations when obtaining informed consent from adults with developmental disabilities
2. Differentiate between decision-making capacity and legal competency to consent
3. Address health care scenarios where a patient’s capacity to consent and legal competency to consent do not align
1
Developmental Disabilities
Definition of Developmental Disabilities
Chronic conditions beginning during developmental period (up to age 22; usually last throughout lifetime)
Impairment in physical, learning, language, or behavior areas 1
Access to dental care context
Often have difficulty finding dentist willing/able to treat Dental care routinely involves procedures surgical in nature
Americans with Disabilities Act
We have a duty to provide care to people with disabilities
1. https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html
Common Examples of DDs
Intellectual Disability (ID)
Impairment in intellectual and adaptive functions 2
Down syndrome
Part of syndrome involves intellectual disability (often mild)
Cerebral palsy
Motor disorder, approx. 1/3 to 1/2 have co-occurring ID
Autism
Increased risk for intellectual disability 3
2. American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Arlington, Virginia: American Psychiatric Publishing.
3. Trends in the Prevalence of Autism Spectrum Disorder, Cerebral Palsy, Hearing Loss, Intellectual Disability, and Vision Impairment, Metropolitan Atlanta, 1991–2010. Kim Van Naarden Braun ,Deborah Christensen, Nancy Doernberg, Laura Schieve, Catherine Rice, Lisa Wiggins, Diana Schendel, Marshalyn Yeargin-Allsopp. 2015. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0124120
3
Case #1
40 year old male
Autism and intellectual disability
Seeking informed consent for extraction tooth #18
Case #1
40 year old male
Age of consent
Autism and intellectual disability
Diagnosis alone does not tell us if can give informed consent
Seeking informed consent for extraction tooth #18
5
What does age tell us?
Age of consent typically at age 18
For most health care decisions
Age of consent often varies by type of procedure Washington State: 4
Emergency Medical Services (Implied Consent) STD Testing (14+)
Birth Control, Abortion, Pre-Natal Care (Any Age) Outpatient/Inpatient Mental Health (13+) Outpatient/Inpatient Substance Abuse Treatment
(13+, additional regulations)
4. https://www.doh.wa.gov/YouandYourFamily/SexualandReproductiveHealth/StateLaws State Laws Related to Sexual and Reproductive Health. Washington State Department of Health.
What does age tell us?
Mature Minor Doctrine (varies by State) 5
Age-specificity Evaluation of maturity
Capacity to understand/appreciate treatment Living w/o parents, homeless, married, graduated HS
Consistent with living will
Try parents first, limitations on informed refusal When in best interests not to notify parents Serious health hazard if they don’t do procedure
5. School House Connection. State Laws on Minor Consent for Routine Medical Care
May 3, 2021. https://schoolhouseconnection.org/state-laws-on-minor-consent-for-routine-medical-care/
7
When is Age Not Enough?
In order to give informed consent must have:
1. Legal competence to consent AND
2. Decision-making capacity for the procedure
If they don’t have legal competence or decision-making capacity, we can’t obtain informed consent
What about Assent?
Legal Competency
Assent to Care Decision
Making Capacity
Being agreeable to the proposed
treatment.
Even if minors or adults with legal guardians aren’t
able to give informed consent, we can still assess if
they assent.
9
Capacity vs Competency
Disability
Capacity vs Competency
Terms not used consistently, so let’s define them
If they person has a legal guardian (full/of the person), they aren’t legally competent
to make their own health care decisions 6
Competency
Legal determination Global determination
6. https://www.ncbi.nlm.nih.gov/books/NBK532862/ Competency and Capacity. State Pearls.
Christopher Libby; Amanda Wojahn; Joseph R. Nicolini; Gary Gillette.
Capacity vs Competency
Disability
Capacity vs Competency
Terms not used consistently, so let’s define them
Do they have the ability to understand their condition, the risks, benefits, alternatives
to care, to rationalize their options, and to make a determination on which option they want to select? 6 In other words, can they truly
give INFORMED consent
Capacity
Medical determination Procedure-specific
6. https://www.ncbi.nlm.nih.gov/books/NBK532862/ Competency and Capacity. State Pearls.
Christopher Libby; Amanda Wojahn; Joseph R. Nicolini; Gary Gillette.
11
Legal Guardianship
Decision-Making Authority Determined by the Court System
“significant risk of personal harm based upon a demonstrated inability to adequately provide for nutrition, health, housing, or
physical safety.” 7
“…a legal not a medical decision, based upon a demonstration of management insufficiencies over time in the area of person or estate.
Age, eccentricity, poverty, or medical diagnosis alone shall not be sufficient to justify a finding of incapacity.” 7
7. https://apps.leg.wa.gov/rcw/default.aspx?cite=11.88.010 RCW 11.88.010
Authority to appoint guardians—Definitions—Venue—Nomination by principal. (Effective until January 1, 2022.)
What Rights Are Lost?
Disability
Person Estate
Consent to/refuse certain medical treatment Decide who will provide care and assistance Make certain decisions about social aspects of life Marriage, divorce, state-registered domestic partnership Hold a drivers license, enter into contracts, create wills, designate POA
Buy, sell, own, mortgage or lease property Sue or be sued other than through a guardian 8
Full Limited
8. Guardianship in Washington State: An Overview. Washington State Council on Aging
https://www.dshs.wa.gov/sites/default/files/ALTSA/stakeholders/documents/SCOA/Guardianship%20in%20Washington%20State.pdf
13
Case #1
40 year old male
Above age of consent
Does the person have legal competency?
When should we ask about this?
Autism and intellectual disability
Diagnosis alone does not tell us if can give informed consent Individuals with DDs more likely to have a legal guardian than those
without; however, how do we avoid assuming incompetence?
Seeking informed consent for extraction tooth #18
How and when should we assess decision-making capacity?
Assessing Legal Competence
Option 1: Ask about legal guardianship
Universal vs Case Specific __Yes __No I make my own health care decisions
__Yes __No I have a legal guardian who helps me make health care decisions
__Yes __No I have someone else that helps me make health care decisions
Option 2: Respond to red flags
How do we avoid being discriminatory?
How do we make sure we get the information we need?
15
Case #1
40 year old male and does not have legal guardian
He is legally competent to make own decisions
Autism and intellectual disability
Diagnosis alone does not tell us if can give informed consent Individuals with DDs more likely to have a legal guardian than those
without; however, how do we avoid assuming incapacity?
Seeking informed consent for extraction tooth #18
How and when should we assess decision-making capacity?
Capacity Assessment 9
Understand
Understand information about specific condition/options.
Appreciate
Appreciate how the condition/options could affect them.
Reason/Rationalize
Use reasoning to decide amongst the options.
Decide
Come to a decision and communicate that decision.
9. How Do I Determine if My Patient has Decision-Making Capacity? The Hospitalist. 2011 August;2011(8). Joyeeta G. Dastidar, MD Andy Odden, MD Department OF
17
Understand
Understanding in Capacity Assessment
Understand the condition, proposed treatment, alternatives
Complexity of Condition/Options
Dental cleaning vs mandibular resection for oral cancer under GA
Impairment in Ability to Understand
Can be increased risk with developmental disabilities, especially intellectual disability
Variation by Circumstances
Stress, setting, support
Assessing Ability to Understand
Often it will be clear if they understand their condition and treatment options
Some questions to ask if unclear
Can you tell me what you understand so far about…
…your health condition?
…this option?
…your alternatives?
Challenges w/ Communication Disorders
People with developmental disabilities often have communication disorders affecting expressive and receptive communication
19
Appreciate
Appreciation in Capacity Assessment
Identify their condition as affecting them personally Identify treatment options as affecting them personally Identify likely outcomes as things that will affect them personally
Some questions to ask if unclear
Can you tell me what you understand so far about…
…how this condition might affect your [ability to eat, smile, etc.]?
…how this option is most likely to affect your [future risk of cavities]?
…how these alternatives might affect your [risk for tooth fracture]?
Reason/Rationalize
Reason in Capacity Assessment
Weigh risks, benefits, alternatives, including no treatment
Come to a conclusion in keeping with their goals and best interests, as defined by their personal set of values and circumstances
Some questions to ask if unclear
Can you tell me…
…what made you choose [this option]?
…why you think [this option] is better than [this other option]?
Can’t be based on what we view as a “bad” decision
Going against medical advice is NOT a sign of lack of decision-making capacity
21
Decide
Decision in Capacity Assessment
Express a treatment choice; stability in decision Express why making changes in choices
Changing decision alone is not enough to call capacity into question Communication disorders must be accommodated
Some questions to ask if unclear
Can you tell me…
…why you changed your mind regarding [option 1]?
Can’t be based on what we view as a “bad” decision
Going against medical advice is NOT a sign of lack of decision-making capacity
Case #1
40 year old male and does not have legal guardian Autism and intellectual disability
Seeking informed consent for extraction tooth #18
Urgency?
Non-painful, carious pulp exposure, may become urgent Irreversible?
Extraction is irreversible loss of a body part Alternatives?
Non-restorable, root canal/filling/etc. not an option
23
Case #1
Communication
You ask the patient if he wants to have tooth #18 extracted.
He responds “yes”
You then ask the patient if he wants to keep his tooth He responds “yes”
You then ask again if he wants his tooth out He responds “yes”
He then states
“I want my teeth cleaned so I can have a healthy mouth”
Case #1
Yea-Saying
Learned adaptation
Ex: When I tell people yes, they seem happier, are nicer to me
Assessing for Yea-Saying
Ask opposite questions: Does it hurt? Does it feel okay?
Ask absurd questions: Can I cut off your arm?
Challenges Assessing for Yea-Saying
Sometimes things that seem opposite can both be true Example: Tooth hurts (throbbing pain) and feels okay (smooth)
25
Case #1
Understand
When being presented extraction option, starts talking about cleaning.
Appreciate
Does he know there will be a space in his mouth after tooth is pulled?
That we are talking about something permanent done to his body?
Reason
Is he weighing the pros and cons to fit with his values/circumstances?
Decide
Is he making a final choice, and letting us know his choice?
It is possible he might be yea-saying, as opposed to making a decision.
Case #1
Legal Competency
He has the legal competency to make his own decisions.
Assent
He appears to be assenting so far.
If we started the procedure, would he still be assenting?
Decision-Making Capacity
Most likely has capacity to make decision regarding tooth cleaning.
Unclear if has capacity to make decision regarding extraction.
Legal Competency
Assent to Care Decision
Making Capacity
Next Steps:
1. Provider Communication Supports
2. Supported Decision Making
27
Provider Communication: FRAME 10
Familiarize
What helps him with communication? Expressive and receptive.
Does he have someone to support him with decision making?
Reduce Rate
Slow down
Assist with Communication Mixed Methodologies
Support communication in whatever way the patient needs:
photos/diagrams, support person, etc.
Engage the Patient
Support autonomy and engagement in own decision making
10. Teaching Medical Students Skills for Effective Communication With Patients Who Have Communication Disorders.
Carolyn Baylor, Michael Burns, Karen McDonough, Helen Mach, and Kathryn Yorkstona. Am J Speech Lang Pathol. 2019.
Decision Making Supports
Supported Decision Making 11
Consulting with friends, families for support in decisions Informal or formal; voluntary
Surrogate Decision Making
Someone else makes the decision Guardianship
Power of Attorney Other Surrogate Decision Maker
11. http://www.supporteddecisionmaking.org/states. National Resource Center for Supported Decision-Making. In Your State.
29
Surrogate Decision Making
Durable Power of Attorney
Durable power of attorney selected by the patient themselves DPOA makes decisions if the individual becomes incapacitated
Other Surrogate Decision Makers
Can another individual sign for the patient? Cosign with the patient?
State of WA allows Surrogate Decision Makers for Individuals with:
Developmental disability Mental illness
Senility
Habitual drunkenness Excessive use of drugs Other mental incapacity 12
Other Decision Makers
State of WA has a prioritized list of decision makers for specific scenarios
1. Guardian 5. Adult grandchildren who are familiar with the patient
2. DPOA w/health care decision making authority
6. Adult nieces/nephews who are familiar with patient 3. Adult children 7. Adult aunts/uncles who are
familiar with patient
4. Parents 8. An adult who exhibits special concern, is familiar with values
31
Other Decision Makers
State of WA has a prioritized list of decision makers for specific scenarios
EXLCUSIONS:
Health care provider or employee of health care provider/health care facility where person receives care
Someone paid to care for the patient (e.g. paid caregiver)
Could pose significant conflict of interest Adults w/DD often present w/paid caregiver
12. https://app.leg.wa.gov/rcw/default.aspx?cite=7.70.065 RCW 7.70.065. Informed consent—Persons authorized to provide for patients who are not competent—Priority (as amended by 2019 c 209). (Effective until January 1, 2022.)
Possible Outcomes Case #1
Decision Making Capacity:
Obtain consent from patient No Decision Making Capacity:
Obtain consent from WA State list of surrogate decision makers (Cosigner may be an alternative)
Unclear Capacity:
Additional communication supports and supported decision
making (such as an involved family member).
The goal is to have it become more clear.
Legal Competency
Assent to Care Decision
Making Capacity
33
Ethical/Legal Considerations
Ethical/Legal Considerations
This scenario is typically straightforward. We obtain consent from the guardian and the patient is agreeable to care.
Legal Competency
Assent to Care Decision
Making Capacity
35
Ethical/Legal Considerations
Legal Competency
Assent to Care Decision
Making Capacity
Fairly straightforward in terms of consent. They are agreeable with
the treatment. We will obtain consent from the guardian.
We might ask ourselves why they have a restrictive guardianship
if they are able to make health care decisions?
Is there some way we can better advocate for their rights? Are we
missing something regarding safety concerns?
Ethical/Legal Considerations
Legal Competency
Assent to Care Decision
Making Capacity
Accepting when people decline care; supporting autonomy;
avoiding assumptions about
“bad” decisions
Correct in capacity assessment or missing red flags about
informed refusal?
Would we have assent if we explained better/had supported
decision making?
37
Ethical/Legal Considerations
Legal Competency
Assent to Care Decision
Making Capacity
Assumptions about disability/
communication disorder?
Will communication supports/
supported decision making be enough?
When should we decide to use a surrogate decision maker or co- signer? Are we taking away rights
by doing this?
When should we recommend guardianship (restrictive)?
Ethical/Legal Considerations
Legal Competency
Assent to Care Decision
Making Capacity
Are they actually making an informed refusal and we can’t see
that because of our assumptions about their disability or communication disorder?
When do we accept they are declining care vs advocate for
care when they can’t give informed refusal?
The stakes are higher if we decide to use a surrogate decision maker
39
Ethical/Legal Considerations
Surrogate Decision Making
When do I as the provider decide to take away rights?
Is there clear lack of capacity?
Am I making assumptions about capacity based on my values?
Is there clear lack of ability to give informed refusal?
What is the urgency?
Is consideration of guardianship more appropriate?
Is caregiver calling the shots?
Could supported decision making be enough?
Ethical/Legal Considerations
Why might someone lacking capacity for health care decisions not have a guardian?
They may not need guardianship
The individual might have some decision making capacity and not be at significant risk to themselves
in a way that would require guardianship.
Less restrictive alternatives may be sufficient
The individual may be better served by a surrogate decision maker from the State of WA list, or a previously competent individual might
have given someone their power of attorney.
41
Ethical/Legal Considerations
Why might someone lacking capacity for health care decisions not have a guardian?
Guardianship is expensive
They may not know about guardianship options Guardianship process is long/complicated
Transition from pediatric care takes time
Ethical/Legal Considerations
Why might someone lacking capacity for health care decisions not have a guardian?
Need for guardianship may have changed over time
In some cases a person who was previously able to make their own treatment decisions is no longer able to do so
43
Ethical/Legal Considerations
Be cautious about recommending guardianship
Limits autonomy: Limits the individual’s agency over how to live and from who to receive supports to carry out that choice
Transfers rights: Transfers the individual’s rights of autonomy to another individual or entity
Stigmatizing: Many individuals with intellectual and developmental disabilities experience guardianship as stigmatizing and inconsistent
with their exercise of adult roles and responsibilities 13 Guardianship is supposed to be limited to when there is significant risk of personal harm based upon the individual’s
demonstrated inability to adequately provide for their own nutrition, health, housing, or physical safety
13. Arc of United States. Position Statements: Autonomy, Decision-Making Supports, and Guardianship. https://thearc.org/position- statements/autonomy-decision-making-supports-guardianship/
