Many aspects of prehospital medicine fall squarely into the category of science. Providers use evidence-based data to make the best choice regarding treatment, or base patient management on established theories in pathology and physiology. These concepts are taught in textbooks and promulgated in peer-reviewed journals. They’re by definition reproducible under similar conditions. Science is the foundation of the practice of prehospital patient care.
However, everyday care is also guided by the art of the profession. This art can’t be taught in a classroom; it’s gained by the sweat of past patient encounters and the collective knowledge passed from provider to provider. These past patient care experiences hone our ability to tell sick from not sick, injured from uninjured, and a safe scene from an unsafe scene. The art of our practice guides patient care when we encounter variables that can’t be accounted for with scientific knowledge alone.
One area of care that’s often challenging is patient refusals. Refusal of care straddles the intersection of ethical, legal and scientific domains of prehospital practice.
There’s great local and regional variability in the laws that govern providers. Consequently, there’s great variation in the patient care guidelines by which they abide. It’s of the utmost importance providers understand these laws and treatment guidelines as they apply to their service area. This article will address the core concepts related to informed decision-making. These concepts should only be applied as they relate to the practitioner’s current local established laws and procedures.
An ambulance is called for a 72-year-old male who’s having chest pain. The calling party states her father called her because he wasn’t feeling well—she’s not on scene. You arrive and find an elderly male in some distress. He’s ill-appearing and clutching his chest. He appears awake and alert, tracking you with his eyes as you approach.
The patient states he had a sudden worsening of his daily chest pain and feels nauseous. This all started about three hours prior to your arrival. On assessment the patient has a pulse of 80, blood pressure of 102/68 and a pulse oximeter reading of 92% on room air. You perform a 12-lead ECG, which shows clear ST segment elevation in lead II, III and AVF, with some ST depression in AVL. The top of the ECG indicates acute myocardial infarction. (See Figure 1 below.)
Figure 1: ECG showing ST segment elevation in leads II, III and AVF
The patient tells you he already took his 325 mg aspirin today when you try to give him one. He also took three sublingual nitroglycerin tablets.
His daughter arrives and is understandably concerned about her ill-appearing father. You advise the patient it looks like he’s having a heart attack. He says, “The heart doctor told me this might happen. He also said that I needed bypass surgery. I told them they aren’t going to saw me in two and crack my chest open.”
You ask the patient if he’d like to go to the hospital to be evaluated and he declines. At this point his daughter steps in and says, “I’m his power of attorney; I want him to go to the hospital.” She then produces official-looking paperwork. This situation brings up two important considerations when taking a patient refusal: Who’s able to refuse and how does healthcare power of attorney relate to a refusal?
Ethics & Legality
Informed consent is an ethical and legal concept that relates to medical decision-making. It’s a generally accepted duty of the care provider, and right of the patient, to obtain informed consent. It can be defined as the process by which the care provider seeks the affirmative allowance of the patient to provide healthcare after apprising the patient of the benefits and risks of the proposed treatment. In this way, the provider respects the autonomy of the patient and their right to determine what happens to them in accordance with their personal values, health beliefs and goals. Ridley describes the concept, “Maximization of respect for patient autonomy and bodily integrity—rather than the imposition of the doctor’s professional values—is what application of the doctrine of informed consent should endeavor to achieve.”1
Informed refusal applies the concepts of informed consent to refusal of care. It’s similar in that informed refusal seeks to best respect the decisions of the patient while balancing the provider’s duty to care for the patient. Both of these ethical theories are complex and not completely agreed upon by experts in their overall application. For instance, it’s advocated by some that since informed decision-making is a two-part patient right, one or both parts can be waived by the patient at their prerogative.1 Accordingly, the patient may refuse to be informed about their medical condition and make a decision. An example would be the statement, “I don’t want to hear anything from you. I’m not going to the hospital.” They may be informed and then refuse to make a decision. “Wow, that sounds bad either way. Do what you think is best.” Or they may refuse both parts. “My daughter is a paramedic. Talk to her about it.”
However, the right to refuse doesn’t exist in an ethical or legal vacuum; it’s found with the duty to provide care. In this light, some states have legislated that patients be transported if they aren’t able, or refuse, to make an informed decision and are suspected to have an emergent condition. For instance, New Mexico statute states, “Any person may be transported to an appropriate health care facility by an emergency medical technician, under medical direction, when the emergency medical technician makes a good faith judgment that the person is incapable of making an informed decision about his own safety or need for medical attention and is reasonably likely to suffer disability or death without the medical intervention available at such a facility.”2
And, Magauran writes, “Courts have recognized that patients who do not acknowledge their illness (often referred to as ‘lack of insight’) cannot make valid decisions about treatment.”3
Finally, Adams states, “If the physician determines that the patient lacks decision-making capacity, the patient can be denied the right to make meaningful decisions regarding his or her medical care.”4 These differences in ethical and legal opinions further illustrate the need to understand local guidelines.
There are five basic tenants that are accepted as the foundation of informed consent. To quote Lu and Adams:
1. The patient must have sufficient information about his or her medical condition.
2. The patient must understand the risks and benefits of available options, including the option not to act.
3. The patient must have the ability to use the above information to make a decision in keeping with his or her personal values.
4. The patient must be able to communicate his or her choices.
5. The patient must have the freedom of will to act without undue influence from other parties, including family and friends.5
These aspects of informed consent can be applied to refusals in order to best mitigate the conflict between the care provider’s duty to treat and to respect patient autonomy.
The first step in the process of informed refusal is to establish if the patient is their own medical decision-maker. This relates to competence. Competence is a legal definition and is determined by a judge. Individuals with guardians have been deemed by the court unable to represent themselves and thus have a surrogate decision-maker. This could be the case with adults with dementia or other cognitive impairment, and minors. This may also apply to those in law enforcement custody. In these cases, the wishes of the guardian should be followed. If the guardian is unable to be contacted, the patient should be transported. The patient should go to an appropriate medical facility where a screening exam can be performed to determine if an emergency medical condition exists. Special attention must be paid to legal exceptions that allow minors to make healthcare decisions. In certain cases, like suspected abuse, transport should be pursued despite the objection of guardians.
Once decision-maker status has been established, capacity must be determined. Unlike competence, capacity isn’t a permeant state. Capacity is a patient’s ability to understand their medical situation and make an informed decision about care after being advised of the risks and benefits of a particular course of action. Its existence or lack of existence can be variable. Capacity goes beyond just being alert and oriented. However, a patient who isn’t alert and oriented can’t have capacity. Nor can a patient who is psychotic, suicidal, or homicidal have capacity.
Capacity can be altered by a medical condition. For instance, a patient with an apparent head injury and Glasgow Coma Scale of 12 doesn’t have capacity. In a similar manner, a patient with a breath blood alcohol level of 0.41, an extremely unsteady gait and slurred speech, has impaired capacity to make medical decisions. Once the patient metabolizes the alcohol, they’ll regain capacity, but it’s intoxication and not mere consumption of alcohol that makes the patient incapable of medical decision-making.
Given their specialty equipment and training, it’s reasonable to ask law enforcement to assist in determining sobriety if providers are unsure on scene. In these instances, Lu and Adams state, “If providers believe in their medical judgment that the patient in question lacks decision-making capacity (as opposed to competence, which is a legal judgment), actions should be undertaken to ensure the patient’s best interest.”5 As noted above, a patient’s lack of insight into their medical condition can show a lack of capacity.
Establishing capacity is an integral part of making sure that a patient is informed. This could be information about the suspected medical condition, or the inability of conventional EMS to rule out emergent conditions in the field. The patient should also be advised of the risk and benefits of the proposed treatment and transport, as well as the alternatives, including doing nothing. The patient should be counseled in plain language that they can understand without any undue attempt to influence the choice. Then, the patient should be asked to recount in their own words what they’ve been advised. At this point, any misunderstandings can be addressed. A patient who’s unable to repeat back the risks you’ve advised them of is providing clear evidence that they don’t understand their medical situation.
Finally, the patient should be asked about their decision and the reasoning behind it. Through this process, the patient shows that they’re informed, have insight into their health state, have used reasoning to come to a decision and have communicated as much to the provider. The focus is on how the decision is made, not on the outcome.2 In fact, patients are allowed to make decisions that lead to their harm. As Maggiore writes, “Patients have the right to make medical treatment decisions that may result in deterioration and even death.”6
Do not resuscitate (DNR) orders, power of attorney and living wills can also influence or inform patient refusals. DNR orders are specific instructions regarding CPR, defibrillation and intubation. The provider should be sure to confirm that the order is valid before resuscitative efforts are withheld. If there’s concern regarding validity or applicability of the DNR order, it’s reasonable and appropriate to initiate resuscitation. Lu and Adams write, “When doubt exists regarding a DNR request, EMS personnel are encouraged to act under the principle of beneficence and proceed with full treatment and resuscitation.”5
Power of attorney papers identify a decision-maker when the patient is no longer able to make a decision. This privilege can be subdivided into legal and medical realms. Often, local laws designate a decision-maker if the patient hasn’t done so. For instance, a husband is usually the default decision-maker for his wife. By definition, the power of attorney doesn’t apply until the patient can’t make decisions. As with DNRs, EMS providers must verify the validity and applicability of the proxy decision-maker. In cases where a proxy decision-maker is refusing care on behalf of the patient, the decision-maker should be informed just as one would inform the patient.
Living wills are documents that make a patient’s wishes known if they’re unable to express them. They’re often broad in scope and vary in their specificity. Living wills help to guide decision-makers but are rarely, if ever, binding documents on their own.
It’s often much more work to preform and document an informed refusal than to just take the patient to the hospital. EMS providers have a dual obligation to provide care and to respect a patient’s right to self-determination. It’s important to follow local guidelines, keeping in mind the concepts of informed decision-making and capacity. Every effort should be made to negotiate an encounter outcome that’s agreeable to everyone involved. This could be seeing the patient’s primary care provider later, or going to the hospital with a friend or relative by private vehicle.
Patients are allowed to refuse care as long as they understand their particular medical situation and the potential risk and benefit they’re assuming. The reason for the refusal is not as important as the process by which the decision to refuse is made. Put simply, patients are allowed to make decisions caregivers think are poor, provided the patient understands the decision. Complicated refusals will often require and benefit from the involvement of online medical control. However, there’s no substitute for the educated judgment of the provider at the bedside. And like all things, care of the whole patient should come first.
You calmly explain to the patient’s daughter that you need to ask her dad some more questions to see if he has capacity to make a medical decision. Power of attorney only applies if her dad isn’t able to decide for himself. You ask the patient what he understands is happening right now. He replies, “You told me you think I’m having a heart attack.” You confirm and explain you want him to go to the hospital because if he doesn’t he risks death, permanent disability or a prolonged treatment course. You then ask the patient to tell you the risks, or consequences of refusing to go to the hospital in his own words. The patient replies, “I might die from this heart attack.”
You then ask the patient why he doesn’t want to go to the hospital. He says, “I don’t want surgery. The heart doctor told me that’s all there is to do at this point. I can’t even walk to the bathroom without getting some chest pain these days.” You reply that you respect his wish not to have surgery, but the hospital can do more than just surgery. Most importantly, they can determine the best way to keep him comfortable and treat his symptoms, even if it only means pain medication.
Meanwhile, your partner has called the ED to discuss the patient with online medical control. You notify the doctor that the patient appears to have an acute ST elevation myocardial infarction but that he also appears to have capacity and is refusing transport because he doesn’t want surgery. After reassurance from the doctor that he won’t have surgery forced on him, the patient agrees to transport.
If the patient continued to refuse, the course of action would depend on local guidelines. In some places, the patient would be allowed to stay home, and in others he would be legally compelled to go to the ED. In almost every instance, if the patient suffered cardiac arrest, or was otherwise unable to make decisions, the wishes of his power of attorney would need to be followed.
1. Ridley DT. Informed consent, informed refusal, informed choice—What is it that makes a patient’s medical treatment decisions informed? Med Law. 2001;20(2):205–214.
2. Emergency Medical Services Act, N.M. S., 24-10B-9.1.
3. Magauran BG Jr. Risk management for the emergency physician: Competency and decision-making capacity, informed consent, and refusal of care against medical advice. Emerg Med Clin North Am. 2009;27(4):605–614.
4. Heller DB: Informed consent and assessing decision-making capacity in the emergency department. In JG Adams (Ed.), Emergency Medicine, second edition. Saunders: Philadelphia, pp. 1749–1752, 2008.
5. Lu DW, Adams JG: Ethical issues. In RR Bass (Ed.), Medical oversight of EMS. Kendall/Hunt Publishing Company: Dubuque, Iowa, pp.117–124, 2009.
6. Maggiore WA: Legal issues. In RR Bass (Ed.), Medical oversight of EMS. Kendall/Hunt Publishing Company: Dubuque, Iowa, pp. 69–94, 2009.