Bridging Health and Humanity: Capacity and Consent

OVERVIEW

Decision-making capacity is a key component of patient autonomy. In this episode, host Natalie Hernandez, MD, MPH, and guest Ilene Claudius, MD, discuss potential challenges to assessing capacity and obtaining consent - particularly among the pediatric population.

OBJECTIVES

• Review components of decision-making capacity
• Define consent
• Define assent: Assent is basically the child’s agreement to take part. It is not legally required for treatment in California where I practice. However, we are often required to treat a child over objection.There are some who feel that assent should not be sought if the treatment must occur, and others who feel that we should discuss and apologize for treating over patients’ dissent. Assent is required for research, and the age is typically 7 years and older, unless DD. There are exceptions:
  • Emancipated: 14y+ and married, in armed services, legally emancipated and living independently
  • 15y+ and living independently
  • Mature minor doctrine
  • Situation specific (state dependent, california as example)
    • Pregnancy and contraception, abortion
    • 12y + and STI, including hiv testing and hpv vaccine
    • 12y+ and communicable diseases
    • Rape care; must attempt parental contact (unless perp)
    • 12y+ OP mental health care; parents need to be informed if appt
    • 12y+ drug or alcohol counseling; parents informed if paying
  • Identify situations that make capacity/consent evaluations difficult and discuss strategies to overcome barriers.

References

• Applebaum P, Grisso T. Assessing patients’ capacity to consent to treatment. N Engl J Med. 1988;319:1635-1638.
• Fiscella B, Berberian J. What does it mean for my patient to have decision-making capacity? EM Resident. 2023;50(2):6-9.
• Barstow C, Shahan B, Roberts M. Evaluating Medical Decision-Making Capacity in Practice. Am Fam Physician. 2018;98(1):40-46.

INTRODUCTION
This is Natalie Hernandez, welcoming you to my EMRA*Cast segment called “Bridging Health and Humanity.” Today I’ll be chatting with Dr. Ilene Claudius, Associate Clinical Professor at Harbor-UCLA EM, about addressing challenges in assessing capacity and obtaining consent.

MAIN TALKING POINTS

Informed consent:

1. Consent/Assent
1. (1) the nature of the procedure, (2) the risks and benefits and the procedure, (3) reasonable alternatives, (4) risks and benefits of alternatives, and (5) assessment of the patient's understanding
2. Need capacity to consent for something
3. How do we obtain assent from a pediatric patient? Is there an age for which assent need not be obtained?
2. Review components of decision-making capacity
1. Capacity vs competence: terms that are often used interchangeably. However, competence is a legal term and global assessment of a person’s ability to make decisions- this can only be determined by a judge. In medicine, we use the term capacity when we are assessing a patient’s ability to make a particular decision.
2. What is understanding? Really just that- that the patient understand the nature of the procedure, risks, benefits and alternatives.This understanding can break down if the communication level doesn’t match the patient’s health literacy and, I think it goes without saying, that it needs to be in a language of comfort for the patient. Example. A good way to assess understanding is “teach back.” So something like. I know we’ve gone over a lot and I want to make sure we are on the same page. Let me know how you understand this procedure in the way that you might tell your partner or friend.
3. What is appreciation? Appreciation is the patient understanding how the facts will impact them. So, perhaps the patient needs to understand that they might be at higher risk of a specific complication because of their underlying medical issues
4. What is reasoning? The patients ability to understand the information and apply it to their decision-making. For example, if a patient with good quality of life is told there is a 100% risk of death without the procedure, someone with intact reasoning is going to have that play a strong role in their decision to consent to a procedure.
5. How do we assess a patient’s ability to communicate a choice? Ultimately, a patient will need to communicate a choice in order to demonstrate capacity. But I do think here is where it is important to address cultural issues. For example, a patient might be uncomfortable signing a paper for fear of deportation or may fear disagreeing with the decision of other family members.
3. Pitfalls/challenges
1. Capacity must be assessed with every decision, it is not all-inclusive. It is also dynamic over time. Someone with schizophrenia likely has capacity if well-controlled but may not if they have an episode of severe paranoia
2. How do we assess capacity in a patient experiencing a mental health crisis? Same as anyone above. They must understand the nature of the procedure, the risks and benefits, reasonable alternatives and their risks and benefits as well. We don’t have to agree with the reasoning behind their decision- the age old example being the person who wants to leave with an NSTEMI to feed their cat, but that patient likely has capacity. On the other hand, someone who wants to leave out of concern for aliens invading the operating room lacks the reasoning required for capacity.
1. we still must assess capacity to decline each medical intervention
3. How do we approach patients with a non-English language preference? Interpreter
4. How do we approach patients with poor health literacy? Generally, informed consent should be at no more than an eigth grade reading level, but you need to read the room
5. How do we reduce power differentials: underserved patients may exhibit deference toward the provider and accept treatment even if they do not understand. If the patient feels dependent on the providers medical knowledge, it is difficult to truly make an informed decision other than that of the provider. Empowering patients with sufficient knowledge to actually make a decision is the first step here. And use of plain, as opposed to medical, language also helps to decrease this power differential. Conversely, they might just consent because they really like the provider. It might help to have someone obtain the consent who is not the treating physician and who has no vested interest in the outcome- not benefiting from use of the drug but also not perceived as a friend. I’m pretty blunt when I discuss sensitive topics or consent. I literally say- what you tell me or what you decide has no impact on me- other than I care about you and want you to get good care.
6. How should we approach a patient/parent having a strong emotional reactions to a proposed intervention (e.g. in peds when parents are opposed to IVs, covid swabs, catheterized urine etc)? Good if you can anticipate, but we often have minimal advance notice in EM. Stay calm and remain very consistent and simple with language. Pick your battles, validate their emotional response and try to understand what’s behind the behavior
7. How can we keep our own emotional response in check when patients/parents make a decision we do not agree with? Helps to anticipate and understand what is behind your own behavior. Is it merely burnout or is this patient going through something similar to a loved one? Set realistic goals. Bring a friend. Allow time/ silence if you are overwhelmed. OK to name emotions: I feel frustrated we don’t have more options

TAKE-HOME POINTS

• A patient can have capacity to make one decision, but not another.
• A patient must have capacity to be able to consent.
• It is important to consider the various barriers and biases that can impact capacity evaluation.