Introduction

Capacity is a functional assessment regarding a particular decision at a particular point in time.

Capacity is determined:

There is a presumption of capacity by default. Providers only need to document capacity following a formal capacity evaluation, or if the patient has regained capacity following a period of lacking it.

Pillars of Medical Ethics

Throughout this discussion, it is helpful to recall the 4 pillars of medical ethics outlined in the Belmont Report:

  1. Respect for persons (Autonomy)
  2. Beneficence
  3. Nonmaleficence
  4. Justice

Applebaum Criteria for Capacity

Applebaum Criteria are formally assessed to determine capacity using the MacArthur Competence Assessment.

  1. Communicate a Clear and Consistent Choice
  2. Understand Relevant Information
  3. Appreciate Ramifications of Procedure
  4. Reasoning Intact

Patients are assumed to lack capacity until a provider performs a formal evaluation.

i.e., Patients are “guilty until proven innocent” with respect to capacity.

The criteria are in ascending order of difficulty to assess.

1. Communicate a Clear and Consistent Choice

The easiest criteria to assess

A patient lacks capacity if they cannot communicate a clear choice.

e.g., A patient in a coma that cannot speak.

A patient lacks capacity if they change their mind about a treatment without being presented with additional information or explaining a new thought processes.

2. Understand Relevant Information

Patients have capacity to accept or decline a treatment when they can explain the risks, benefits, and alternatives.

Medical providers can often determine this aspect of capacity.

Providers often focus on the patient’s understanding, but this is not sufficient to determine capacity.

Helpful questions:

  • “Why are you in the hospital?”
  • “What did your doctors tell you was going on?”

3. Appreciate Ramifications of Procedure

The patient with capacity appreciates that risks are genuine and that they apply to themselves.

e.g., A patient lacking capacity might say, “Sure the operation is risky, but I would never die during neurosurgery!”

A patient would also lack capacity if they minimize the risk that a treatment may have on their wellbeing.

e.g., A patient lacking capacity might state, “Losing a limb would be fine. I would live the same life I have now.”

Helpful questions:

  • “What are some of the things that could happen if you didn’t have [this intervention]?”
  • “What did your doctors tell you could happen? Do you believe that?”

4. Reasoning Intact

The most difficult criteria to assess

Can they explain why they are making their choice?

Is the patient making a unique decision that someone from their community would never choose?

e.g., A patient with throat cancer was refusing a biopsy and chemotherapy, but accepted radiation because they believed this modality was a magical cure-all.

If something doesn’t feel right, dig further.

Helpful questions:

  • “What makes you prefer [intervention A] over [intervention B]?”
  • “What led you to make this decision?”

e.g., Kidney Donation due to Psychotic Reasoning

A 30 year old female wanted to generously donate her kidney to a child in the neighborhood who was at risk of death from renal failure.

On evaluation, the team learned the patient wanted to donate only her left kidney because she believed there was a demon living within this part of her body.

She believed donation was the only way to exercise the spirit from her body.

This patient lacked capacity because of her psychotic thought process despite a superficially noble act.

Religious Exemption to Intact Reasoning

e.g., Jehovah’s Witness belong to a community that rejects blood products. They have capacity to refuse blood infusions, even if it would prevent their death from blood loss during surgery.

A caveat is the person must hold these values at baseline.

i.e., They cannot have adopted religious values at the moment they have their procedure.

e.g., A manic patient that is refusing IV antibiotics for sepsis due to their religious faith that they adopted that day lacks capacity.

Capacity is Not…

Specific Pathologies do not automatically determine capacity; myriad etiologies can exclude a patient from having capacity.

An capacity evaluation is required for each patient, for each treatment, at each moment it is offered.

Capacity is Not the Absence of Mental Illness

Psychiatric Illness does not mean a patient lacks capacity.

Capacity must be formally evaluated for each procedure at the time it is offered.

e.g., Capacity is difficult to determine for a depressed patient with a terminal illness pursing comfort care as a passive way to end their life.

Capacity is Not Competency

Capacity is a medical definition determined by a physician.

Competency is a legal definition determined by a judge or lawyer.

Capacity is short-term, at a specific moment, while Competency is long-term, for a defined duration.

Timeline for Capacity

If there is an imminent loss of life or limb to the patient, providers may proceed with standard of care to improve a patient’s health.

Hospital policy sometimes requires two physicians to sign if a patient lacks capacity for a high risk treatment, but this is not a legal requirement.

Surrogate Decision Maker: Illinois Health Care Surrogate Act

The State of Illinois has clarified a patient’s surrogate decision maker in the Health Care Surrogate Act (755 ILCS 40/1).

“for patients who lack decisional capacity and have a qualifying condition, medical treatment decisions including whether to forgo life-sustaining treatment on behalf of the patient may be made without court order or judicial involvement in the following order of priority:

  1. the patient’s guardian of the person;
  2. the patient’s spouse;
  3. any adult son or daughter of the patient;
  4. either parent of the patient;
  5. any adult brother or sister of the patient;
  6. any adult grandchild of the patient;
  7. a close friend of the patient;
  8. the patient’s guardian of the estate;
  9. the patient’s temporary custodian appointed…”

Note, if multiple family members are involved, ask the group to identify one person to make medical decision makers and liaison communication between the group and the providers.

Exceptions to Surrogate Decision Maker

Futility of Treatment

e.g., Surrogate decision maker says to do CPR, but the patient is already dead

Sterilization

Parents cannot force their children to be sterilized against their will.

Substituted Judgement

Medical decision makers must do their best to make choices based on their familiarity with the patient’s judgement.

Ethically, decision makers should do their best to substitute the patient’s judgement for their own when making decisions on behalf of a patient lacking capacity.

A new surrogate should be identified if the existing medical decision maker is unable to substitute the patient’s judgement for their own.

The surrogate decision maker is not legally required to use substituted judgement; if this is the case:

e.g., Jehovah’s Witness Wife of Surgery Patient

The wife of an obtunded patient was Jehovah’s Witness, but the patient was Presbyterian.

The wife insisted her unconscious husband not receive blood products during his life-saving operation, but she could not explain that the patient would have wanted this using his own judgement.

She repeatedly demanded the providers not give her spouse blood products of any kind.

It appeared to the providers that she may have been unable to substitute the patient’s judgement for her own by refusing blood products for the patient.

Eventually, the surgeons opted to conserve blood during the operation and were able to successfully complete the surgery without blood products.

When the patient returned to consciousness, he explained that he had promised the wife he would never receive blood products, and they would be conditionally divorced if he ever violated this agreement.

The decision maker was using substituted judgement, but she was unable to explain her rationale to the providers.

“Best Interest” Model

When there is no decision maker, consulting providers may act in the best interest of the patient.

Treating physicians may act in a way that they deem reasonable.

Providers are unable to use substituted judgement in the “Best Interest” model because the providers are unfamiliar with the patient’s values.

This option is less ideal for making treatment decisions on behalf of the patient.

Therefore, it is reserved for cases where patient’s lack a medical decision maker.

Threshold for Capacity

Providers must balance the risk of a treatment with the benefit it would provide the patient.

Sliding Scale

A patient may have capacity to accept a treatment at a given snapshot in time, while lacking capacity to refuse the same treatment.

e.g., IV Fluids for Rhabdomyolysis

Punnet Square of Risks and Benefits

High Risk Low Risk
High Benefit Clinical Judgement IV Fluids for Rhabdomyolysis
Low Benefit Palliative Chemotherapy Clinical Judgement

After Capacity is Determined

What’s next after evaluating whether a patient has or lacks capacity?

Patients with Capacity

Do not provide treatments to patients that are found to have capacity and are refusing.

Document using the MacArthur Criteria.

Patients Lacking Capacity

Emergency treatments may be performed without determining capacity by acting on good faith.

Nonemergent treatments:

  • Help the patient regain capacity

    e.g., let a patient on lorazepam metabolize the drug before offering high-risk, low benefit treatment

  • Defer to an Advance Directive that may provide instruction of the patient’s wishes at an earlier time when they had capacity.

  • Defer to a Power of Attorney or other medical decision maker

Unbefriended patients lack someone who knows them and could serve as their medical decision maker:

  • Call an Ethics Committee to make a decision
  • Defer to the courts, although this is rare

Ethical and Logistical Consequences of Involuntary Treatment

A patient lacking capacity that is refusing life-saving treatments may be unable to receive the intervention due to logistic or ethical hurtles.

e.g., Forced Chemotherapy

A cancer patient refusing chemotherapy would require restraints, incarceration, and sedation to receive treatment.

Balance risks against potential benefits

Consider the trauma and additional cost of forced chemotherapy versus 5 months of longer life

e.g., Surgery Follow-Up without Compliance

A patient lacking capacity should not undergo surgery that requires long term follow-up; avoid painful consequences if they are not expected to cooperate with longitudinal care.

A psychotic patient cut off their finger because they believed it was cursed.

The surgeons had the finger and were confident they could reattach it.

But successful reattachment would require the patient to adhere to regular dressing changes and physical therapy.

The patient told the providers that if they reattached it he would sever it again promptly.

The surgeons opted not to reattach the finger due to logistical challenges despite that the patient lacked capacity.

Other Types of Capacity

Testamentary capacity is when clients are writing a will, they must be of “sound mind”

Maternal capacity by mothers to make decisions for their children

References


This material is for informational purposes only. It does not replace the advice or counsel of a doctor or healthcare professional. The authors of this website make every effort to provide information that is accurate and timely, but makes no guarantee in this regard. You should consult with, and rely only on the advice of, your physician or health care professional.