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Informed Refusals
We are doing them wrong
Objectives
Define competence, capacity,
cognitionDefine
Discuss principles of consentDiscuss
Discuss building a better refusal
processDiscuss
Discuss special consent situationsDiscuss
Disclaimer
How I got
here….
Riddle me this...
● How many of your calls are refusals?
○ Some agencies approx. 10% ($$$$)
○ ACP: Approx. 36%
● Are refusals are some of the most “risky” activities we
do in EMS?
○ Risky to who?
● Who tends to be “lead” on refusals?
● Who usually writes the chart on a Refusal?
● How long do you take to write a Refusal?
Why refusals are problematic
The varied nature of EMS work makes it
difficult to reliably predict “which” refusal
may have a poor outcome. Therefore it is
incumbent that all refusals meet a robust
legal, clinical, and ethical standard
What is an “Robust
Refusal”?
Basic Principles
● Legal
○ Autonomy
○ Competence
○ “Informed”
○ Documented
● Clinical
○ Capacity
○ Documented
● Perceptual/Ethical
○ “Informed”
○ Sniff Test
○ Documented
Autonomy
“The right of the people to be secure in their persons, houses,
papers, and effects, against unreasonable searches and seizures,
shall not be violated, and no warrants shall issue, but upon
probable cause, supported by oath or affirmation, and particularly
describing the place to be searched, and the persons or things to be
seized” - 4th Amendment of the U.S. Constitution
INFORMED
CONSENT
AND
REFUSAL
RISKS
BENIFITS
OPTIONS
NATURE OF
TREATMENT
VOLUNTARY
AND FREE
FROM
RETRIBUTION
OPPORTUNITY
TO ASK
QUESTIONS
Informed?
Consent would be hollow, however, without the
ability to refuse as well. Therefore the concept of
an informed refusal is centered on the larger idea
of informed consent.
● Expressed
● Informed
● Implied
Can a patient accept one treatment and refuse
another?
● In short, yes (within reason)
○ Ex. Accept transport but refuse an IV or cervical collar
○ Ex. Accept a bandage but refuse transport
● Cannot compel providers to do clinically unsound
care….but can withdrawl consent after care is
given (usually)
● WARNING: Be careful you are not prompting the
refusal
Essence of autonomy
Medical decision making is not an all or nothing, either/or
paradigm.
Patients retain the balance of power in the decision
process.
A patient can also make those choices based on any number
or reasons, evidence, beliefs, even if those beliefs are
misconceptions or would result in a poor outcome.
Exception- If those beliefs are an extension of delerium or
other disability
Competence,
Capacity, and
Cognition.
Competence, Capacity, and
Cognition.
• Competence: A legal
determination
• Capacity: A clinical
determination
• Cognition: required for capacity
Competence
• Mental Competence is a legal determination “adjudicated in a court of law”.
• Definition:
• (1) Legal authority, ability, or admissibility
• (2) the quality or state of having sufficient knowledge, judgment, skill, or
strength
• Competence concerns the mental capacity of an individual to participate in legal
proceedings or transactions
Competence
It is a static determination
• All adults are “competent” unless adjucated by a judge in a written court
order.
• Not the same as a PoA/DPoA-HC
Incompetent patients may:
• Become wards of the state
• But not all wards of the state are incompetent
• Have a gaurdian appointed over them
Capacity
Medical decision-
making capacity is the
ability of a patient to
understand the
benefits and risks of,
and the alternatives
to, a proposed
treatment or
intervention (including
no treatment)
Capacity
Fluid
• Clinical Determination based on articulable assessments in the moment.
Capacity is based on:
• Orientation
• Patient's ability to understand the situation
• Ability to have insight into their own conditions and circumstances at that
moment in time
• Patients congnition
Why not alert and oriented?
Drunken Soldier example
Cognition
“...the mental action or process of
acquiring knowledge and understanding
through thought, experience, and the
senses.”
Cognition does not equal capacity, but
you cannot have capacity without
congition.
Should be based on an organized,
articulatable and validated assessment
Assessing Cognition
Folstien MMSE
When is a patient cognizant , but lacks capacity?
Suicidality (Ideation or actions)
Homicidal (Ideation or actions)
Gravely Disabled
“Gravely
Disabled”
Speaks specifically to
“insight”
Examples -
● Hallucinations (Audio
or visual)
● Delusions
Apparent confusion and
inability to care for
oneself
Example
Comment on
Alcohol
Doing it wrong…
● https://www.youtube.com/watch?v=AzgfusrUB5w
Doing it
right...
Enemies of a
good refusal
“This is the way we have always done it…”
Speed
Fatigue
Frustration
Cognitive Bias and assumptions
Poor doocumentation practices
Poor assessment practices
Beware of gateway
phenomina
The provider believes certain
patients or patient types
“don’t need an ER”.
This attitude will often invert
the decision-making process
for the provider, forcing them
to look for reasons not to
transport instead of searching
for reasons to transport.
-Tom Bouthillet
“No patient found” trap
• “No Patient found”
syndrome is a tendency
for providers to under
document a response,
usually to decrease
workload.
Crystal Galloway was a “no patient found”
for firefighters. She later died of a stroke.
Ask “why”?
Why does the patient
want to refuse? Is it
something you can fix?
Strategy: Ask “Why”
Three layers deep.
Your not a doctor, make
sure they know that...
Advising the patient of the
limitations of a prehospital field
assessment
Is there a responsible adult who
will be able to assist the patient
and prevent further illness or
injury, such as a fall, after EMS
departs? Do they have the ability to
call for help via cell phone or
medical alert? Were they advised
to follow up with their physician
Ask “What
next”?
Can you make the patient safer
than he/she was when you
arrived?
Is someone with the patient who
can (and will) call 911 if needed,
and how will they do so?
Can you decrease the chance the
patient will need EMS again?
Clearly offer
transport!
Perception is
important
After refusal is signed…
offer to call the doctor's office to facilitate
an appointment the next business day?
call ahead” to facilitate care?
Place phone near the patient to call for
help?
Call a neighbor or family to be with the
patient?
When EMs providers “go the extra
mile”, a refusal of transport by the
patient does not look like a refusal to
care.
Special Sitituations
Cameras
Minors
Intoxication
Prisoners
Is this a “life safety” event?
Is this a “security issue”?
Is there a “court order”?
Otherwise, remove the “prison”
context and approach the
situation as any other refusal.
Dementia
Street tip:
• Dementia is never sudden onset.
“Acute” or sudden onset of dementia
is a red flag and other medical or
traumatic causes should be strongly
considered.
Alternative Destination?
Questions?

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2020 informed refusal best practices

  • 1. Informed Refusals We are doing them wrong
  • 2. Objectives Define competence, capacity, cognitionDefine Discuss principles of consentDiscuss Discuss building a better refusal processDiscuss Discuss special consent situationsDiscuss
  • 5. Riddle me this... ● How many of your calls are refusals? ○ Some agencies approx. 10% ($$$$) ○ ACP: Approx. 36% ● Are refusals are some of the most “risky” activities we do in EMS? ○ Risky to who? ● Who tends to be “lead” on refusals? ● Who usually writes the chart on a Refusal? ● How long do you take to write a Refusal?
  • 6. Why refusals are problematic The varied nature of EMS work makes it difficult to reliably predict “which” refusal may have a poor outcome. Therefore it is incumbent that all refusals meet a robust legal, clinical, and ethical standard
  • 7. What is an “Robust Refusal”?
  • 8. Basic Principles ● Legal ○ Autonomy ○ Competence ○ “Informed” ○ Documented ● Clinical ○ Capacity ○ Documented ● Perceptual/Ethical ○ “Informed” ○ Sniff Test ○ Documented
  • 9. Autonomy “The right of the people to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures, shall not be violated, and no warrants shall issue, but upon probable cause, supported by oath or affirmation, and particularly describing the place to be searched, and the persons or things to be seized” - 4th Amendment of the U.S. Constitution
  • 11. Informed? Consent would be hollow, however, without the ability to refuse as well. Therefore the concept of an informed refusal is centered on the larger idea of informed consent. ● Expressed ● Informed ● Implied
  • 12. Can a patient accept one treatment and refuse another? ● In short, yes (within reason) ○ Ex. Accept transport but refuse an IV or cervical collar ○ Ex. Accept a bandage but refuse transport ● Cannot compel providers to do clinically unsound care….but can withdrawl consent after care is given (usually) ● WARNING: Be careful you are not prompting the refusal
  • 13. Essence of autonomy Medical decision making is not an all or nothing, either/or paradigm. Patients retain the balance of power in the decision process. A patient can also make those choices based on any number or reasons, evidence, beliefs, even if those beliefs are misconceptions or would result in a poor outcome. Exception- If those beliefs are an extension of delerium or other disability
  • 15. Competence, Capacity, and Cognition. • Competence: A legal determination • Capacity: A clinical determination • Cognition: required for capacity
  • 16. Competence • Mental Competence is a legal determination “adjudicated in a court of law”. • Definition: • (1) Legal authority, ability, or admissibility • (2) the quality or state of having sufficient knowledge, judgment, skill, or strength • Competence concerns the mental capacity of an individual to participate in legal proceedings or transactions
  • 17. Competence It is a static determination • All adults are “competent” unless adjucated by a judge in a written court order. • Not the same as a PoA/DPoA-HC Incompetent patients may: • Become wards of the state • But not all wards of the state are incompetent • Have a gaurdian appointed over them
  • 18. Capacity Medical decision- making capacity is the ability of a patient to understand the benefits and risks of, and the alternatives to, a proposed treatment or intervention (including no treatment)
  • 19. Capacity Fluid • Clinical Determination based on articulable assessments in the moment. Capacity is based on: • Orientation • Patient's ability to understand the situation • Ability to have insight into their own conditions and circumstances at that moment in time • Patients congnition
  • 20. Why not alert and oriented? Drunken Soldier example
  • 21. Cognition “...the mental action or process of acquiring knowledge and understanding through thought, experience, and the senses.” Cognition does not equal capacity, but you cannot have capacity without congition. Should be based on an organized, articulatable and validated assessment
  • 23.
  • 24. When is a patient cognizant , but lacks capacity? Suicidality (Ideation or actions) Homicidal (Ideation or actions) Gravely Disabled
  • 25. “Gravely Disabled” Speaks specifically to “insight” Examples - ● Hallucinations (Audio or visual) ● Delusions Apparent confusion and inability to care for oneself
  • 28. Doing it wrong… ● https://www.youtube.com/watch?v=AzgfusrUB5w
  • 30. Enemies of a good refusal “This is the way we have always done it…” Speed Fatigue Frustration Cognitive Bias and assumptions Poor doocumentation practices Poor assessment practices
  • 31. Beware of gateway phenomina The provider believes certain patients or patient types “don’t need an ER”. This attitude will often invert the decision-making process for the provider, forcing them to look for reasons not to transport instead of searching for reasons to transport. -Tom Bouthillet
  • 32. “No patient found” trap • “No Patient found” syndrome is a tendency for providers to under document a response, usually to decrease workload. Crystal Galloway was a “no patient found” for firefighters. She later died of a stroke.
  • 33. Ask “why”? Why does the patient want to refuse? Is it something you can fix? Strategy: Ask “Why” Three layers deep.
  • 34. Your not a doctor, make sure they know that... Advising the patient of the limitations of a prehospital field assessment Is there a responsible adult who will be able to assist the patient and prevent further illness or injury, such as a fall, after EMS departs? Do they have the ability to call for help via cell phone or medical alert? Were they advised to follow up with their physician
  • 35. Ask “What next”? Can you make the patient safer than he/she was when you arrived? Is someone with the patient who can (and will) call 911 if needed, and how will they do so? Can you decrease the chance the patient will need EMS again?
  • 37. Perception is important After refusal is signed… offer to call the doctor's office to facilitate an appointment the next business day? call ahead” to facilitate care? Place phone near the patient to call for help? Call a neighbor or family to be with the patient?
  • 38. When EMs providers “go the extra mile”, a refusal of transport by the patient does not look like a refusal to care.
  • 43. Prisoners Is this a “life safety” event? Is this a “security issue”? Is there a “court order”? Otherwise, remove the “prison” context and approach the situation as any other refusal.
  • 45. Street tip: • Dementia is never sudden onset. “Acute” or sudden onset of dementia is a red flag and other medical or traumatic causes should be strongly considered.

Editor's Notes

  1. What you are wanting to do… The risks of refusal The benefits of treatment Any other options for treatment, transport or care Must make clear that refusal of care will not prejudice health care providers against the patient. If a patient feels coerced into refusal, or fears it may deprive them of access to services in the future, then it is not truly voluntary.
  2. Sadly, Capacity and competence are oft confused and poorly understood in healthcare, particularly in EMS. Paradoxically, very few healthcare settings deal with issues of capacity or competence either as frequently, or as independently and without oversight, as EMS providers do. The ability to determine the capacity to make an informed decision is central to the refusal process, yet it is often clouded by inadequate education on the matter and persistent dogma reinforced on the streets.
  3. Medical decision-making capacity is the ability of a patient to understand the benefits and risks of, and the alternatives to, a proposed treatment or intervention (including no treatment). Capacity is the basis of informed consent. Patients have medical decision-making capacity if they can demonstrate understanding of the situation, appreciation of the consequences of their decision, and reasoning in their thought process, and if they can communicate their wishes. Capacity is assessed intuitively at every medical encounter and is usually readily apparent. However, a more formal capacity evaluation should be considered if there is reason to question a patient's decision-making abilities. Such reasons include an acute change in mental status, refusal of a clearly beneficial recommended treatment, risk factors for impaired decision making, or readily agreeing to an invasive or risky procedure without adequately considering the risks and benefits. Any physician can evaluate capacity, and a structured approach is best. Several formal assessment tools are available to help with the capacity evaluation. Consultation with a psychiatrist may be helpful in some cases, but the final determination on capacity is made by the treating physician. If a patient is found not to have capacity, a surrogate decision maker should be identified and consulted. If the patient is unable to give consent and identifying a surrogate decision maker will result in a delay that might increase the risk of death or serious harm, physicians can provide emergency care without formal consent.
  4. “Orientation” as it is used in EMS, commonly refers to the patient's relationship to his world. Does he know who he is? Where he is? What time is it? And does he understand the basic situation or events surrounding him at that moment. This is commonly referred to “Alert and Oriented x 4”, and is often used as the sole basis for determining a patient's capacity to make a decision. This is a fallacy, however. Key to this error is a lack of understanding how to assess cognition and capacity. Orientation typically requires only the most rudimentary of cognition and awareness. As a case in point: the stereotypical drunken soldier on leave at a bar “just off post”.
  5. An example populist example of this would be John Nash , the mathematician. In his biographical film (A Beautiful Mind, 2001) he clearly had excellent cognition, but it could be argued that his delusions prevented him from having capacity. Most concerning for the determination of capacity is the disability. Mental disability includes hallucinations, delusions, and “lacking insight into his need for treatment.” It also includes an “inability, by reason of mental illness, to achieve a rudimentary understanding after conscientious efforts at explanation of the purpose, nature, and possible significant risks and benefits of treatment.” Expressed another way mental disability must be so profound they are unable to comprehend the danger of refusing treatment apparently, as assessed by the patient verbally expressing those risks back to the provider. In its most severe state, mental disability is often termed “gravely disabled” in state mental health statutes and is often a criterion for protective custody.
  6. https://www.youtube.com/watch?v=AzgfusrUB5w
  7. Gateway phenomena is another bias to overcome (Bouthillet, 2016). Here, a provider feels an obligation to “reduce waste”. Often the provider believes certain patients or patient types “don’t need an ER”. This attitude will often invert the decision-making process for the provider, forcing them to look for reasons not to transport instead of searching for reasons to transport. There are certainly situations where transport may not be the most efficient, and occasionally there are situations where transport is not indicated or even contraindicated; but these should be rare, evidence-based, and protocol-driven with strong medical director oversight, not informed by a field providers “gut feeling”.
  8. “No Patient found” syndrome is a tendency for providers to under document a response (Fowler, 2007). A provider may make contact, do a rudimentary (or even incomplete assessment) and encourage a patient to seek care via other means, and in the end document the call as “no patient found” or “no patient contact.” This trend is seen to avoid an ever increasing documentation burden with EHR’s, to avoid getting off shift late or simply return to bed due to fatigue.
  9. Advising the patient of the limitations of a prehospital field assessment.
  10. Intoxication may be another challenge. Simply consuming alcohol, contrary to popular dogma, does not relieve a patient of their decision-making capacity (Australian Capital Territory Health, 2016). Autonomy is more resilient and perseveres beyond simple consumption. The determination of intoxication, and by extension lack of capacity, must be made on clearly articulable and observable assessments. It is not enough to simply document an arbitrary amount of alcoholic beverage consumption. One must put it into the context of the situation, apply a timeframe to that consumption, and must document physical effects. The presence of slurred speech, difficulty completing cognition assessments, or inability to ambulate safely are more objective than simply saying the patient was “drunk”.
  11. Prisoners and their autonomy are often misunderstood by EMS providers. The history of tension and conflict between healthcare providers and the officials charged with the care of prisoners and even the prisoners themselves is storied and well documented (Mendelsohn, 2011). There is much misunderstanding by EMS providers when faced with prisoners. EMS providers often assume that representatives of the custodial agency (i.e. law enforcement or corrections) can make medical decisions on behalf of the patient. The supreme court offers a unique perspective, stating that such decisions can only be made when the security and safety needs outweigh the needs of the patient (Stouffer v. Reid; 2008). In all other cases, the courts advise that providers “ must initially remove it [the decision] from the prison context” and consider autonomy in a similar light as if the patient was not a prisoner (Thor v. Superior Court; 1996). In other words, in many cases, prisoners retain their medical decision-making capacity (and refusal to refuse care), even while incarcerated.
  12. Dementia is a diagnosis that occurs over multiple visits showing cognitive impairment over a minimum of 6 months. “Acute” or sudden onset of dementia seldom is dementia, and other medical or traumatic causes should be strongly considered.
  13. Alternative destination vs. patient choice When a patient chooses an alternative method of transportation, they should still be informed of any risks, and the level of documentation should be similar to a traditional refusal. This should not be taken to imply that EMS should not be allowed to facilitate the patient’s choice. Regardless if a patient is transported by EMS, EMS providers have an affirmative responsibility to advocate and seek the patient's best interest. A provider may “call ahead” to the intended ER, call the patient’s private physician to facilitate care or any number of other reasonable actions to ensure