- A 52-year old schizophrenic with chest pain who declines admission for ACS work-up because she is afraid of getting a lethal infection by staying in the hospital?
- A 73-year old male with a history of dementia who is refusing blood draws because, “I don’t like doctors”?
- A 90-year old female refusing antibiotics for her pneumonia because, “I’m ready to die.”
The answer for all of them is that we need more information. Capacity determination is difficult and time consuming, but because these cases exist at the nexus of good medical care, civil rights and legal liability, it is essential that it be performed properly. This article reviews the process of evaluating a patient’s medical decision making capacity and explores some of the unique challenges that EPs face in making an accurate assessment.
Decisional capacity refers to the ability of an individual to make medical decisions on their own behalf. Underlying this concept is the idea that such decisions can only be considered valid when made by an individual with 1) a basic understanding of their medical condition; 2) the options for treatment; 3) the ability to rationally consider these options as they apply to the patient themselves; and 4) the ability to communicate their decision[i]. A patient cannot fall short on any of these and still have capacity.
Additionally, it is important that the values and goals behind the patient’s decisions have some stability over time. If what the patient is expressing in the ED is a radical divergence from their previous values, we must consider the possibility of acute psychological impairment and we would question their role in the decision-making process.
Although the criteria described above are not complicated, the process of determining capacity can be, especially as it unfolds in the ED. The first issue is that patients almost never engage in the capacity assessment in a way that gives us certainty that their understanding is thorough, rational and consistent. Questions meant to elucidate their thought process are often met with terse answers, such as “I’m fine” and, “I just don’t want it.” For some patients this indicates a lack of understanding. For others it is a result of the frustration many ED patients have even before the conversation begins.
Unlike patients seen in a medical office, who find their visit too short, ED patients are often eager to leave. They have little interest in a lengthy discussion or in providing you with any reassurances about their thought process after you have, in their eyes, spent the last few hours ignoring their needs. Their reticence makes determining whether their decision matches their core values a challenge, more so since you have often never met them before.
The conversation is further impeded by patients’ limited understanding of their disease process. We know from our studies of patients discharged from the ED that they often leave with little understanding of what was wrong with them. Unlike patients who have been seeing a doctor for months or years with a clear diagnosis, ED patients may either lack a clear diagnosis or haven’t had much time to learn about them.
Finally, there are EP factors which impede the evaluation. We are often pressed for time. None of the steps described above: creating a rapport from whole cloth; educating the patient; assessing their thought process; and piecing together a sense of how consistent all this is with the person they have been before they came to your emergency department, work well if rushed.
Additionally, we may harbor our own personal feelings toward patients. Patients who are rude or demanding can provoke anger and resentment in the physician, leading us to accept a lower standard of apparent capacity, just so that we can discharge them. On the other hand, fear of a lawsuit or anxiety about how we will appear in our colleagues eyes can all lead us away from privileging the patients’ interests primarily, leading us to an unreasonably high standard for capacity.
Overcoming the obstacles to quality care
First, understand that your role is not to coerce the patient to follow your advice. Your role is to partner with them in making a decision that serves them medically and is in line with their goals and values. A calm, informal manner will serve you best here. The more you let them know you care about their doing what is right for them, the more likely you are to 1) get them to listen to what you have to say and 2) get the answers that reassure you that they understand what’s going on.
Another important part of the process is involving family. Family can tell you whether the decision you are hearing is coming from the person they have known for years or whether something seems off. Family can also help the patients think through the decisions when their own reasoning abilities might not be at their best. Fear, anger, and pain all suppress the activity of the frontal cortex, where our reasoning takes place. It is rare that patients in the ED are not experiencing one, if not all of these. Having a family member involved can help calm the patients to allow more rational thought and provide a sounding board for patients to sort out their own ideas. Involving family is so important that I will often ask the patients to call their family members, if none are immediately present.
Perhaps the most challenging part of the process is gaining a clear sense of the patients’ comprehension of their illness. The difficulty lies in structuring the conversation to maximize the possibility that patients will feel at liberty to talk about what they understand and want. As noted above this requires setting the gentle, accepting tone. Also, it is important to keep our expectations reasonable. We have to bear in mind that patients have a layman’s vocabulary and are not trained in medical thinking. However, if we accept a reasonable layperson’s understanding as our standard, we can often get a satisfactory sense of their thoughts and feelings.
Handling intoxicated patients
Let’s look at that group for whom most of us are forced to make a capacity judgement on daily basis, drunk patients. In most cases, drunk = lacks capacity. This common-sense determination is supported by research: drunk ED patients were administered a questionnaire to assess their understanding of research risks. A mere 3.9% of participants were able to answer all the researchers’ questions correctly. Not only that, but 63.4% did not even remember participating in the study once they sobered up.[ii] This does not mean that all drunk patients lack capacity. But we must be sure to apply the standards strictly given the likelihood that these patients are impaired.
There was a recent case which might appear to contradict our notions of drunk patients and capacity.[iii] A few years ago Mr. Kowalski, an adult male, presented to St. Francis ED seeking alcohol detox. Shortly thereafter, he walked out of the ED unannounced and against the advice of the providers. Shortly thereafter he tried to cross a busy highway on foot and was struck by a vehicle, leaving him paralyzed below the neck. The judge ruled that the hospital did not have a responsibility (or even a right) to detain Mr. Kowalski.
Initially some in the emergency medicine community took this to mean we were not burdened with the responsibility of ensuring intoxicated patients’ safety. However, although the judge found in favor of the hospital, the decision was based upon a very narrow legal technicality (the fact that he presented voluntarily for detox) and the applicable law has since been changed. In spite of the dramatic press this case got at the time, it should not change our standard approach to such situations.
To get a further perspective, let us consider the following, not-uncommon scenario. EMS brings in a 30-year old male unresponsive after methadone overdose. They administer naloxone and by the time he arrives he is awake and alert, fully oriented, with stable VS and has no other complaints except that he wants to leave. Medics notify you that this is the third time they have brought the patient in this week.
You discuss with the patient your concern that if he leaves, the Naloxone may wear off before the methadone does, and that he may again stop breathing. In your conversation with him, he demonstrates an understanding of his situation, the medical implications of his various treatment options, and is able to give a reason for choosing to leave that is consistent with what you take to be his core values and worldview. He is has demonstrated all the criteria for capacity. And yet…
Here is where it makes sense to err on the side patient safety over patient autonomy. Medical judgement is never 100% accurate. Because of this, we tend to employ a “sliding scale” approach in deciding capacity. As stated in a report by the President’s Commission for the Study of Ethical Problems in Medicine, “when the consequences for well-being are substantial, there is a greater need to be certain that the patient possesses the necessary level of capacity. When little turns on the decision,… less scrutiny is required about whether the patient possesses even the reduced level of capacity.”[iv] Erring on the side of patient safety in cases with high risk for adverse outcome is advisable. This is especially true in the case of a mental illness that impairs judgement, such as an addiction disorder.
Patients with mental illness
Another group of difficult patients are those with schizophrenia or other psychotic disorders. Such patients can present us with idiosyncratic reasons for making decisions. In these cases it is probably better to involve psychiatry. Psychiatrists’ will be more familiar with psychotic patients’ style of speech and course of illness, making it easier for them to differentiate idiosyncrasy from impairment.
This is a good time to mention that, although many capacity assessments can be made by the EP alone, one should feel at liberty to consult psychiatry for these evaluations at any time. Good reasons to involve psychiatrists include complex cases, especially those with greater potential medical liability, presence of significant mental illness, patient unwillingness to engage in the conversation, and lack of time.
Once you have satisfied your duty to the patient to help them get the care they want, you still need to honor your duty to your administrator. This means charting in a way that adequately reflects the patient’s and your own thinking throughout the process.
The capacity determination is a complex process, but can be simplified if we think of it in discrete steps: eliciting a clear explanation from the patient of their understanding of their condition as well as their goals, working with both patient and family to clarify these when they are obscure, recognizing situation likely to be problematic, and knowing when to call for help. If we are mindful of all of these, good medical care can be not only achieved, but enhanced by our efforts.
[i] Appelbaum, P. and Grisso, T. Assessing Patients’ Capacity to Consent to Treatment. New England Journal of Medicine, 1988. 319(25):1625.
[ii] Martel M. et al. A brief assessment of capacity to consent instrument in acutely intoxicated emergency department patients. American Journal of Emergency Medicine, 2018. 36:18-23.
[iii] Kowalski v. St. Francis Hospital and Health Centers, 21 N.Y. 3d 480 (2013)
[iv] President’s Commission for the Study of Ethical Problems in Medicine, Library of Congress card number 82-600637, U.S. Government Printing Office, Washington, DC 20402