December 11, 2019

The Capacity to Understand Capacity

The following case is based on a true patient encounter:

Case:

You are working the evening shift in your emergency department (ED). Your next patient, Mr. Stevens, is an 86 year-old male who is brought to the ED by his adult granddaughter, Jessica, who is concerned for a worsening cough and shortness of breath. Jessica says that Mr. Stevens, who suffers from moderate dementia, is normally cared for by her mother, Mr. Stevens's daughter. Currently, however, his daughter is out of town on a business trip. Consequently, Jessica has been asked to look in on her grandfather. She has noticed over the past day a worsening cough as well as the appearance he is breathing more quickly.

As you look to Mr. Stevens, you notice he is not connected to the cardiac monitor, remains fully clothed and is sitting on the edge of the bed with his arms crossed. Before your nurse is able to explain how he has refused his triage evaluation and vital signs, Mr. Stevens declares, "This is ridiculous, I feel fine. I'm leaving!"

Caring for older adults with neurocognitive disorders such as dementia can be very challenging. It is often difficult to discern if a patient’s mental status, in the setting of a possible acute illness, is reflective of a chronic cognitive disorder, an acute insult or a combination of both. These challenges can be further compounded when a patient is declining treatment or otherwise not participating with his or her care.  In these situation, it is imperative for the emergency medicine provider (EMP) to be able to rapidly assess and determine a patient's decision-making capacity. 

Case continued:

Fortunately, Jessica is able to, calm her grandfather so you can obtain some additional history. As nursing gets vital signs, you learn that Mr. Stevens has been living with his daughter for 2 years, since his wife died. He was diagnosed with Alzheimer’s disease 4 years ago and has progressively declined in his ability to care for himself. At present, he is able to complete most ADLs but requires reminders with respect to self-hygiene. His daughter completes all of his IADLs. The patient still recognizes his family and close friends. He enjoys tending to his garden which he is still able to do fairly well despite his Alzheimer’s Disease. He has no advanced directives.

Nursing reports the patient’s vitals as a heart rate of 120 beats per minute, respiratory rate of 28 breaths per minute, temperature of 101.4° F, oxygenation of 91% on room air and a blood pressure of 140/88 mmHg. The patient allows you to listen to his lungs only and you note crackles throughout the right lung field.

The patient aggressively declines nursing’s attempt to place an IV and again says, “You can’t keep me here, this isn’t jail. I’m leaving!” Your frustrated bedside nurse asks if you can discharge the patient against medical advice.

The ability to determine decision-making capacity is within the scope of practice of all EMPs. Although general orientation to person, place, time and event may be a helpful in assessing a patient’s cognitive status, these questions are insufficient when it comes to assessing overall decision-making abilities. There are four domains to consider when evaluating capacity. These include: ability to communicate a choice, understanding, appreciation and reasoning (table 1)1.


Decision-making ability

Definition

Communication of choice

Ability to communicate a choice when presented with options.

Understanding

Ability to state meaning of relevant information and why a clinician may be making certain recommendations.

Appreciation

Ability to explain how information applies specifically to oneself.

Reasoning

Ability to infer consequences of choices such as accepting or declining a recommended treatment.


Decision-making capacity is specific to a question at hand. A medical capacity assessment is not “all or none” 2,3. This is important to keep in mind, especially when caring for older adults with cognitive impairments. Many of these patients retain the decision-making capacity for simple and routine health care questions but may not be able to address more complex questions about their care.

Case continued:

You begin to gauge the patient’s understanding and appreciation of his current medical condition. You review his vital sign abnormalities, how it is important to get further tests and why he will likely need antibiotic treatment. To evaluate his understanding and appreciation, you ask, “what is your understanding of your condition” and “why do you think I’m recommending you get more tests and receive antibiotics”?

The patient responds, “I think you want to poison me and take my money. I’m not sick at all!”

Based on this assessment, you determine the patient does not have the capacity to make medical decisions with respect to his likely pneumonia workup and treatment. You do feel, however, that further questions, especially in the absence of formal advanced directives and no health care agent having been named, are warranted. You ask Mr. Stevens that, if he were to get sick and not be able to speak for himself, is there someone he would like to name as his spokesperson?

“My granddaughter here, Jessica, she knows what I want,” he responds.

To make sure he has good understanding, appreciation and reasoning for picking his granddaughter, you probe slightly further, “And why do you want her to be your spokesperson if you can’t speak for yourself?”

“What kind of crazy question is that? Because she’s my flesh and blood, we look out for each other. Plus, her mother is out of town right now so she’s the only family I have around”, he answers.

You update his medical record to list his granddaughter as his health care agent.

The other members of your team, seeing you have determined that patient does not have capacity with respect to his pneumonia workup and treatment, ask how you would like to sedate the patient to help facilitate labs, a chest xray and antibiotics?

In considering the four well accepted, basic principles of medical ethics, autonomy, justice, beneficence and particularly, non-maleficence, it is important to recognize the consequences of restraints or sedation in older adults. These include numerous complications such as falls, aggression, delirium and pressure sores 4,5.

The potential complications of sedating an older adult with an acute infectious illness can be serious so contemplating alternative approaches, such as negotiating with the patient and leveraging relationships with family members or others, like a patient’s primary care provider, are key.

Case continued:

You enlist the help of the patient’s granddaughter who accompanies him over to radiology where she is able to convince him to get a chest xray showing a multi-lobar infiltrate consistent with pneumonia.

The patient requests to speak with his daughter, who is out of town. After her encouragement to allow your team to start an IV and give antibiotics, with the goal of getting Mr. Stevens home soon, the patient is agreeable. You are able to start him on appropriate pneumonia coverage and admit him to the hospital where his vital signs normalize, his cooperation with medical interventions improve and he is discharged home a few days later.


References:

  1. Appelbaum PS. Clinical practice. Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007. 357(18):1834-40.
  2. Buchanan AE, Brock DW. Deciding for others: the ethics of surrogate decision making. Cambridge: Cambridge University Press, 1989.
  3. Grisso T, Appelbaum PS. Assessing competence to consent to treatment: a guide for physicians and other health professionals. New York: Oxford University Press; 1998.
  4. Hamers JP, Huizing AR. Why do we use physical restrains in the elderly? Z Gerontol Geriatr. 2005. 38(1):19-25.
  5. Gillon R. Medical ethics: four principles plus attention to scope. BMJ. 1994. 309(6948):184-8.

Prepared by Phil Magidson, MD