im residents capacity (10 21-13)

Division of Medical Humanities

Decisional Capacity…and ethical stuff in relation to it

D. Micah Hester, PhDJohn Spollen, MD

(w/stuff stolen from Vy Mui, MD)October 21, 2013


One Way to See the Problem

Does anyone have first hand experience with the [Capacity to Consent to Treatment Instrument—CCTI] either taken by a family member or a friend?

I'm familiar with the MMSE, but not this one. Nursing home recommends this done on [my] dad to determine if he is properly refusing 'treatment' with capacity. (This relates to how he wants to go out by himself despite it being very dangerous).

I'm confused as to what this means if he scores poorly because he scored very well on his MMSE. He scored 30/30 the past two years, and 26/30 this year. It's lower this year, but still high enough to show that he's functioning well mentally. But if he doesn't do well on the CCTI, that means he doesn't have capacity to refuse treatment...

…but yet the MMSE says he's capable...

Anyone encounter anything like this before?

(Aging Parents and Elder Care website discussion forum, http://mikegamble.websitetoolbox.com/post?id=5845424)


Another Way to See the Problem…

• Mr. B– 75yo man– Has diabetes– Severely infected foot ulcer

• Medical team has suggested an amputation, and over 2 days– Initially agreed– then retracted– then agreed– then retracted again

• Cognitive/Conditional Background– 7th grade education– Oriented, except to the exact month and date– He “forgets things sometimes”– No known history of psychiatric condition


…Another Way to See the Problem

• In discussion with him, it is learned:– Knows he has Diabetes or “high sugar,” and that it led to his foot

infection.– Understands that the doctors are giving him medicines but that they

want to “cut off my foot.” Knows he may “get an infection all over and die” if this is not done.

– Understands he can have problems from the surgery and could die from it. Scared “it won’t heal right and they have to keep doing it.” Worried about how he will manage without his foot.

– Sometimes thinks he is willing, but as the time approaches, gets more scared.

– Does not want to die but is not afraid to, either.


DOES MR. B HAVE CAPACITY TO DECIDE ABOUT AND CONSENT TO THE AMPUTATION?

1. Yes2. No3. Unsure


Medical Consent

• Operative Ethical Concept– People with decisional capacity deserve to have their

reflective decisions respected

• Operative Legal Concept– Adults with decisional capacity are their own default

medical decision-makers


Ethically AcceptableInformed Consent

Seven aspects of informed consent:

Threshold Elements (preconditions for valid consent)– Decisional capacity– Voluntariness

Informational Elements– Disclosure– Recommendation– Understanding

Consent Elements– Decision– Authorization

(Beauchamp/Childress, The Principles of Biomedical Ethics, 6th ed. Oxford UP, 2009, 118-21)

http://www.amazon.com/gp/reader/0195335708/ref=sib_dp_pt


Legally RecognizedInformed Consent

• A person’s agreement to allow something to happen (such as surgery) that is based on a full disclosure of facts needed to make the decision intelligently; i.e., knowledge of risks involved, alternatives, etc.

ALSO• …the name for a general principle of law that a physician has

a duty to disclose…so that a patient, exercising ordinary care for his own welfare,… may intelligently exercise his judgment by balancing the probably risks against the probable benefits…

(Black’s Law Dictionary, 6th Edition)


Medical Decision-making:AR Law on General Medical Consent

• General Consent– Durable Power of Attorney for Healthcare (see AR Code 20-13-104…maybe 20-6-1xx)– Any one of the following

• Any adult, for himself or herself; • Any parent, whether an adult or a minor, for his or her minor child or for his or her adult

child of unsound mind … However, the father of an illegitimate child cannot consent for the child solely on the basis of parenthood;

• Any married person, whether an adult or a minor, for himself or herself; • Any female … when given in connection with pregnancy or childbirth, except the unnatural

interruption of a pregnancy; • Any person standing in loco parentis…; • Any emancipated minor, for himself or herself; • Any unemancipated minor of sufficient intelligence to understand and appreciate the

consequences of the proposed surgical or medical treatment…; • Any adult, for his or her minor sibling or his or her adult sibling of unsound mind; • During the absence of a parent so authorized and empowered, any maternal grandparent

and, if the father is so authorized and empowered, any paternal grandparent, for his or her minor grandchild or for his or her adult grandchild of unsound mind;

• Any married person, for a spouse of unsound mind; • Any adult child, for his or her mother or father of unsound mind; and • Any minor incarcerated ….

(AR Code 20-9-602)


AR Definition of “Unsound Mind”

(a) As used in this subchapter, “of unsound mind” means the inability to perceive all relevant facts related to one's condition and proposed treatment so as to make an intelligent decision based thereon, whether or not the inability is:(1) Only temporary, has existed for an extended period of time, or

occurs or has occurred only intermittently; or(2) Due to natural state, age, shock or anxiety, illness, injury, drugs

or sedation, intoxication, or other cause of whatever nature.(b) An individual shall not be considered to be of unsound mind

based solely upon his or her refusal of medical care or treatment.

(AR Code 20-9-601)


Medical Decision-making:AR Law on Health Care Decision Making

(a) Individual instruction(1) An adult or emancipated minor may give an individual instruction. (2) The instruction may be oral or written. (3) The instruction may be limited to take effect only if a specified condition

arises.

(b) Advance directives(1) An adult or emancipated minor may execute an advance directive for

health care that authorizes the agent to make a healthcare decision that the principal could make if he or she had capacity.

(c) Unless otherwise specified in an advance directive, the authority of an agent becomes effective only upon a determination that the principal lacks capacity, and ceases to be effective upon a determination that the principal has recovered capacity.

(AR Code 20-6-103)


AR Definition of Capacity

(3) "Capacity" means an individual's ability to understand the significant benefits, risks, and alternatives to proposed health care and to make and communicate a healthcare decision

(AR Code 20-6-102)

(d) Capacity determination(1) If necessary, the designated physician shall determine whether a

principal lacks or has recovered capacity, or that another condition exists that affects an individual instruction or the authority of an agent.

(2) In making a determination under subdivision (d)(1) of this section, the designated physician may consult with other persons as he or she deems appropriate.

(AR Code 20-6-103)


Capacity: What it IS

• Ability to make a reasonable healthcare decision– Physician-determined

• Need not be a psychiatrist– (See previous slides for AR legal requirements)

– It is decision-specific• Does the patient at this time have the ability to determine what

to do in regards to the specific question/concern being discussed?

– It admits of degrees• High risk, complex considerations require higher capacity

threshold

(Ganzini L, et al. Ten Myths about Decision-Making Capacity. 2004)


Capacity: What it is NOT

• Competence– Legal determination by a judge

• Follows as the result of a hearing

– Typically comprehensive determination• To be determine to be “incompetent” usually means that patient

cannot make *any* medical decisions(Ganzini L, et al. Ten Myths about Decision-Making Capacity. 2004)

• Orientation– One can be oriented without having capacity

• MMSE does not determine capacity

• “Good” Judgment– One can have capacity and still make bad decisions


First Things First

• Adult patient default– S/he HAS capacity– Physician has burden of proof otherwise

• Disagreement with proposed plan is not, by itself, a reason to question capacity

• Agreement with proposed plan does not always indicate capacity(Ganzini, et al. Ten Myths about Decision-Making Capacity. 2004)

• Child patient default– S/he does NOT have capacity– Patient has burden of proof otherwise

• In AR minor (less than 18yo) must demonstrate “sufficient intelligence” to understand the condition and the consequences of the decision to be made. (AR Code 20-9-602)


Determining Capacity

• Communicate choice*

• Oriented to situation and environment• Understand treatment/intervention*

– Risks– Benefits– Alternatives

• Appreciate conditions and consequences in relation to oneself*

• Rationally manipulate the information*

• Sustainable memory

*(Appelbaum PS, Assessment of Patients’ Competence to Consent to Treatment, JAMA 2007 357(18):1834-1840)


Assessing Capacity: Conditions

• Presence of capacity confounders– Illnesses, diseases, traumas/injuries

• Level of complexity and risk in the decision– Higher risk, higher threshold for capacity

• Environmental considerations– ICU, long-term nursing home


Assessing Capacity: Questions to Ask…

• Can you tell me about your medical condition?• What do you understand will happen with this

illness?• What are your doctors wanting to do?• What is your understanding of that treatment or

process?– In what way could it help you?– What kinds of risks are there?– What would happen if you decided not to do this

treatment?


…Assessing Capacity: Questions to Ask

• What other options are there?– What is your understanding of them?

• Which option are you inclined to choose?– What things helped you make that decision?

• Might you reconsider if the option you chose were not working?– What kind of things would help you decide it was time to

reconsider?


Selected Capacity-Determining Tools

• MacArthur Competence Assessment Tool (MacAC-T)– 3 areas of assessment using semi-structured interviews

• Capacity to Consent to Treatment Instrument (CCTI)– 5 areas of assessment using vignettes

• Aid to Capacity Evaluation (ACE)– 8 question assessment

• Hopkins Competency Assessment Test (HCAT)– Reading/understanding-level assessment and 6 questions

• Understanding Treatment Disclosure Test (UTD)– 5-paragraph understanding assessment given twice

(Dunn LB, et al., Assessing Decisional Capacity for Clinical Research or Treatment: A Review of Instruments Am J Psychiatry 2006, 163:1323-1334); Sturman ED, The capacity to consent to treatment and research: A review of standardized assessment tools. Clinical Psychology Review. 2005,

25(7):954–974)


Proceed with Caution

• Aging persons often lose capacity by degrees and over time

(Edelstein B. Challenges in the assessment of decision-making capacity Journal of Aging Studies, 2000, 14(4):423-437)

• Instruments are developed for generic, not specific, patients

(Kapp MB, Mossman D, Measuring decisional capacity: Cautions on the construction of a "capacimeter." Psychology, Public Policy, and Law, 1996, 2(1):73-95)

• Appearing competent does not always mean having capacity(Misak CJ. The Critical Care Experience, American Journal of Respiratory and Critical Care Medicine,

2004, 170(4):357-359)


Capacity’s Relationship toInformed Consent

• Elements of Informed Consent– Threshold elements

• Capacity• Voluntariness

– Informational elements• Disclosure• Recommendation• Understanding

– Consent elements• Decision• Authorization

• Elements of Decisional Capacity– Communicate choice– Understand

treatment/intervention• Risks• Benefits• Alternatives

– Appreciate situation and consequences

– Rationally manipulate this information


What If the Patient Does Not HaveDecisional Capacity?

• Decide if this is holistic of decision-specific– If holistic, get a competency determination for a

judge– If decision-specific, evaluate on an “as needed” basis

• Check for the presence of advance directives– Living will is a treatment directive– Designated agent/DPAHC is a proxy directive

• Identify an agent or surrogate– If none available, get a state-appointed guardian


Patient Inclusion When Incapacitated

• To the extent possible– Make the patient aware of what is and will be

happening– Discuss patient’s interests in relation to his/her

care and care-options– Elicit assent


One More Thing…

Mental illness Incapacity

Schizo-phrenia

Depression

Angina Comparison

Understanding

28.0 5.4 7.3 2.4

Reasoning 24.0 7.6 0.0 2.0

Appreciation 22.7 12.0 4.9 N/A

Any 52.0 23.9 12.2 4.0

% Subjects with scores less than 2 SD’s below total mean

(Grisso, Appelbaum. Am J Psych 152: 1033-1037, 1995)


…One More Thing

Control Mild Dementia

Mod Dementia

Instruments showing

difference

Understanding

89.9 - 94.3

78.3 - 89.4

33.3 - 63.2

McCAT-T, HCAT, CCTI

Reasoning 90.9 - 96.2

83.3 - 100 70.0 - 86.8

McCAT-T, CCTI

Appreciation 79.5 - 94.9

76.1 - 97.9

48.7 - 94.6

CCTI

% Subjects with scores WNL

(Moye, Karel, Azar, Gurrera. Gerontologist 44: 166-175, 2004)

Dementia Incapacity


Discussion Case #1…

• Ms. P– 68yo woman– end-stage renal disease– had been on dialysis and then stopped going

• Family moved her to be closer to them and want her to restart dialysis

• Cognitive/Conditional Background– Graduated school, no college education– Has TBI from previous auto accident 10 years ago

• Has lived on her own after rehab

– No known psychiatric history• Family says he has always been reserved and a little irritable.

– Mini-mental State Exam score 10/15• pt missed points for orientation, refused to cooperate with remainder of cognitive

questions


…Discussion Case #1

• In discussion with her, it is learned:– Pt knows she has kidney problems and is supposed to be

on dialysis but is clear that she does not want further dialysis.

– Beyond this, she will not discuss anything further with any of the doctors, despite many attempts at coaxing her to talk about the situation.


DOES SHE HAVE THE CAPACITY TO REFUSE FURTHER DIALYSIS?




• Mr. M– 64yo male– pneumonia and severe hypoxia

• needs to be intubated and have IV antibiotics.

– His wife of 40 years and his adult son are present• Cognitive/Conditional Background

– HS education, runs his own roofing business– Knows he is “in the hospital” and the year but refuses other

questions– No known psychiatric history– He is agitated and trying to leave

• Wife and son are trying to talk him into staying.



• In discussion with him– He will not answer questions– Only says “If I don’t get out of here, I’m going to

die.”


DOES HE HAVE THE CAPACITY TO REFUSE FURTHER DIALYSIS?




• Mr. H– 42yo man– in a car accident with multiple injuries– Just extubated that morning– still in the ICU and connected to multiple monitoring

devices, a Foley catheter, and a Dobhoff tube– Getting more and more angry throughout the day and

wants to leave AMA


…Discussion Case #3…

• Cognitive/Conditional Background– College educated– No psychiatric condition.– No known substance abuse and was not

intoxicated during car accident– Fully oriented, with MMSE score = 30/30



• In discussion with him, we learn that he– Knows he had a car accident and can list the injuries.– Understands that his injuries are serious and he can die without

medical care.• Not suicidal.

– Angry but cannot give clear reason.• Says he is just “fed up.”

– Lives by himself at home and has not been in touch with any family or friends who can help care for him.

– Has no plans for how he will care for himself in the meantime.• Is not willing to wait for home services or follow-up to be arranged.


DOES HE HAVE THE CAPACITY TO REFUSE FURTHER DIALYSIS?




• Ms. Y– 53yo woman– Has endometrial cancer

• Hysterectomy and chemotherapy proposed• She refuses

• Cognitive/Conditional Background– College educated– She is a professional masseuse– No known psychiatric history– Mini-mental State Exam score 30/30



• In discussion with her, she– Knows she has cancer and can explain the “textbook” information on

the chemotherapy, less well informed about the hysterectomy– Not suicidal and does not want to die– Is a long-time believer in alternative medicine.

• Wants to go to alternative practitioners to assess the vitamin and metal contents of her blood.

• Plans to take various vitamins and mixtures of fruits/vegetables for 3 months before pursuing any other treatment

– Says she might be willing to consider chemo after this time.

– Does not believe her doctors that the cancer could get worse during the next 3 months.

• Her family is alarmed and does not feel she is making a rational decision


DOES SHE HAVE THE CAPACITY TO REFUSE FURTHER DIALYSIS?


im residents capacity (10 21-13)

Health & Medicine

adult sibling of unsound

father of unsound mind

adult child

minor child

spouse of unsound mind

adultchild of unsound

minor sibling

recognizedinformed consent