Evaluating Patients’ Decision-Making Capacity

EMS is called to a local drinking establishment for a report of a bar fight with injuries. After arriving on scene and checking in with the police, the crew is directed to a 22-year-old male standing outside, holding a bloody bar towel to the upper left quadrant of his abdomen. “I’ve been stabbed in the gut!” he shouts. The attending paramedic finds a strong radial pulse of 124 and directs the man to start walking toward the ambulance. “I’m not going to the hospital, and you can’t kidnap me!” he shouts even louder. The paramedic calls medical direction, which asks, “Is he sober and competent?”

EMS providers are regularly challenged with ethical issues during the course of their work. Ethical dilemmas are situations that present with no clear right answer and where more than one course of action can be defended. In the case above, there is a patient with penetrating trauma to the abdomen. In any EMS system, this is a priority patient. But wait: He is objecting to treatment and transport. The ethical dilemma is created due to our value of patient autonomy and shared decision-making between provider and patient. However, many would argue this patient is at high risk for a bad outcome if he doesn’t seek medical care.

I started thinking about these issues long after I started working in EMS in the 1980s. I’m an active paramedic field instructor for an urban EMS system, but I’m also a clinical psychologist in an academic medical center. As a psychologist, I am regularly called upon to assess the decision-making capacity of patients who refuse lifesaving care.

After several years of this, I was invited to sit on the hospital’s ethics committee, where many issues are similar to the case above: Someone refuses care or cannot voice their wishes, and others make decisions for them. What struck me most was how many EMS providers face the same ethical dilemmas as physicians, but without the support often found in hospitals (such as on-call specialists like psychologists, an ethics committee, risk managers, legal department, etc.). This article is intended to help guide EMS providers through an ethical dilemma they encounter often: the patient who needs treatment but declines help.

The Shared Decision-Making Model

EMS providers and physicians share many parallels. Both meet their patients and ascertain a chief complaint, then form a clinical impression after taking a history and performing a physical exam and using other diagnostics. Options are discussed, and a treatment plan is decided upon. This model, “shared decision-making” (SDM), came about in the early 1990s and honors the patient’s right to autonomy over their own body.¹ This is the bedrock of informed consent. The patient is given options, risks and benefits are explained, and the patient makes an informed choice. Conflict arises when the provider and patient are unable to reach a decision together about the best course of action, typically when the patient decides differently than what the clinician believes to be the best.

EMS providers regularly meet patients who decline ambulance transport. For example, there are individuals who are injured in motor vehicle collisions, but not sufficiently that they believe they need prehospital care and transport. Similarly, diabetics who have become hypoglycemic and recovered after the administration of glucose often decline transport. In most EMS systems, the patient and provider complete paperwork documenting the patient’s decision not to be transported by ambulance. Often this paperwork documents the risks to declining care and that the patient has been informed of such risks in deciding against transport.

Less common but far more risky are the patients who would likely benefit from transport and treatment who decide against it. In some instances these patient may be making decisions that will lead to death or disability. It’s a fine line for the paramedic or EMT to walk: Respect the patient’s right to autonomy to refuse care, while knowing such a decision may lead to that patient’s death. In these instances, most EMS systems require the EMT or paramedic to assess the patient’s capacity to decline transport and make contact with medical control. The case at the beginning is an extreme one, but exploring it can help frame how to approach such situations.

Evaluating Capacity

While the word competent is often used when discussing decision-making ability, such a term is typically reserved for use only by judges making legal decisions.² Our discussion concerns medical decision-making ability (as opposed to the capacity to make other decisions, such as financial ones). The physician’s question, “Is he sober and competent?” speaks directly to this. It means, “Are there features about this patient that impair his ability to make decisions?” including intoxication. It’s important that EMS providers are able to evaluate medical decision-making capacity.

There are several different approaches to assessing decision-making capacity. I am partial to this one and use a modified version of it when working as a paramedic and or assessing patients as a psychologist.³

1. Is the patient an adult without a guardian? In the prehospital arena, children may not refuse transport. Some adults also have guardians who make their decisions. In these instances the EMS providers deal with the patient’s parent or guardian.

2. Can the patient communicate a choice about his or her care? For obvious reasons, if the patient cannot communicate their wishes, decisions have to be made by someone else. I also believe patients who refuse to cooperate with an evaluation regarding their decision-making capacity fall into this category. By refusing to communicate with me, these patients are deemed as lacking decision-making capacity. Steps 3 and 4 are incumbent on the patient being able to process information. Inherent in these steps is whether the patient is free from an altered mental status and not under the influence of an intoxicating substance. I also worry about patients with possible head injuries or other disease processes known to impair cognition (such as hypoglycemia, seizure/postictal phase, dementia, CVA, etc.). Be very careful about leaving patients behind who have central nervous system impairment and who you believe would otherwise benefit from ambulance transport. EMS providers need to be able to perform a thorough mental status exam (beyond “alert and oriented”) and be aware of different signs of intoxication.

3. Does the patient have a factual understanding of their medical condition? It need only be a layperson’s level of understanding, as evidenced by statements like, “You’re worried a blood vessel in my heart is blocked,” or “This pain in my stomach might mean I have internal bleeding after my car accident,” or “Since I’m taking a blood thinner, there might be bleeding in my brain after I fell.” Can the patient understand the risks and benefits of ambulance transport? Can they describe the risks of not being transported? Have the patient articulate them. Common risks are a condition that worsens and there’s no provider to intervene or that without intervention they are likely to die. There are no risks to ambulance transport. (Getting into a crash is not a risk; medical risks are things like bleeding during an operation, not that the hospital might catch fire.)

4. Can the patient reason and come to a decision with a certain degree of logic? Perhaps the patient can talk about a medical condition and its possible consequences, but is still making an illogical decision—e.g., “I know you’re worried I’m going to bleed to death, but bad things don’t happen to me, so I don’t need to go.” This is an illogical conclusion. Finally, does the patient’s decision present as rational and stable across time? This may be the hardest for a field provider to assess, but when it comes to whether the decision is rational, I ask, “What makes you decide this way?” When the rationale for the decision is odd—like “I’m not going to the doctor because the mind control beams tell me not to!”—question whether it’s a rational decision.

In a hospital setting, the more serious the decision being made, the more scrutiny is placed on the process that leads to that decision. For example, a patient making a decision that might lead to their death has to demonstrate an extraordinary capacity for making such decisions. In the field, there may not be time to perform a thorough decision-making capacity evaluation that rises to this level. Further, many EMS providers may not feel comfortable documenting that they let a person die instead of transporting because they documented the patient had sufficient capacity to make such a decision.

EMS systems do not typically have ethics committees or attorneys on speed dial because in an emergency, there is considerable leeway given to simply doing what seems to be in the patient’s best interest. If the EMS provider believes the patient has impaired decision-making capacity and a bad outcome will happen if that patient is not transported, most EMS systems will permit an intervention over the patient’s objections. That is, the patient’s autonomy takes second place to intervening in a life- or limb-threatening emergency.

A patient with impaired decision-making capacity and a serious medical condition needs a capable person to start making decisions on their behalf. That may be the EMS provider or a family member in conjunction with the EMT or paramedic. This should never be seen as “kidnapping.” While some patients are transported over their objections, this is a medical intervention to go the hospital. Ransom demands aren’t made, and there is no ill intent. In the case of the person stabbed in the abdomen, it is unlikely he has enough decision-making capacity to let him decline care.

Conclusion

In summary, I believe patients have a right to make informed decisions I don’t necessarily agree with. As EMS providers, we have to be careful about thoroughly assessing decision-making capacity and mental status, following protocols for patients who refuse transport, and documenting every encounter. Many systems also mandate discussing such cases with online medical control. Savvy EMTs and paramedics develop methods for resolving patients’ concerns about being transported. Sometimes it’s as easy as making sure a pet will be cared for or a loved one is contacted.

References

1. Brock DW. The idea of shared decision making between physicians and patients. Kennedy Inst Ethics J, 1991; 1(1): 28–47.

2. Lo, B. Assessing decision-making capacity. J of Law Med & Ethics, 1990; 18(3): 193–201.

3. Jones RC, Holden T. A guide to assessing decision-making capacity. Cleve Clin J Med, 2004; 71(12): 971–5.

Thom Dunn, NRP, PhD, is an assistant professor of psychological sciences at the University of Northern Colorado. Additionally he is a clinical psychologist at Denver Health Medical Center. Thom has been involved in EMS for nearly 30 years and is a part-time paramedic field instructor for the Denver Health Medical Center Paramedic Division. Reach him at thomas.dunn@unco.edu.