Patient experience in emergency medicine (Graham 2019)

I recently wrote a post lamenting our lack of attention to distress in adult patients. There is so much we can do to improve the emergency department experience. I am tempted to say that we should treat our patients as we would want to be treated – a variation on the golden rule – but I fear that is a bit paternalistic. We are all different and we all want different things. Physicians in particular are an unusual group of humans, with cultural backgrounds that often vary significantly from our patients. Instead of the golden rule, a better approach is to treat our patients as they want to be treated. How do our patients want to be treated? It’s probably best to ask the individual in front of you, but for a scientific overview, let’s look at a paper on patient experience. 

The paper

Graham B, Endacott R, Smith JE, Latour JM. ‘They do not care how much you know until they know how much you care’: a qualitative meta-synthesis of patient experience in the emergency department. Emergency medicine journal. 2019; 36(6):355-363. PMID: 31003992

The Methods

This is a systematic review and meta-synthesis of qualitative studies looking at the patient experience of adult emergency medicine patients. Any method of qualitative data collection was included (such as interviews, focus groups, observation and open-ended questionnaires.) Rather than just using the conclusions of the original papers, the authors collected data, including author summaries and direct quotations, from the original studies, and then performed their own qualitative analysis. 

The Results

They found 22 studies, which included 677 patients from 33 different emergency departments. The EDs ranged from small rural departments to large tertiary academic centres. 

They identify 5 main themes relating to patient experience:

• Communication needs
• Emotional needs
• Competent care needs
• Waiting needs
• Physical and environmental needs

Communication needs

Patients report two major needs when it comes to communication. The first is interpersonal connection, with desired qualities including clinicians actively listening to patient concerns, maintaining eye contact, and using a calm tone of voice. Calm communication was noted to help alleviate anxiety and remain calm during procedures. 

The other major communication need is informational. Patients need information that is clear, accurate, and free from jargon. Patients with language differences or sensory deficits are at an especially high risk for communication difficulties. Interestingly, despite the big push to give every patient written discharge instructions, the use of pamphlets was specifically challenged as lacking warmth and compassion, and undermining the clinician’s knowledge. (Would love to hear people’s thoughts on that.)

One major frustration was the need to repeat the same story multiple times. This is not an easy fix, as history is an important part of triage and nursing assessments that will often happen before the physician is available. I would be interested in hearing people’s suggestions for addressing this. Personally, I think part of the problem is that we ask too much of our triage nurses, and they are forced to take far more history than is actually needed for the triage process. We can also alleviate some of this frustration by simply setting expectations. “I am going to ask you some questions, but you are going to have to repeat yourself for the doctor. It’s really important that they hear your story directly from you.” We can also probably do a better job sharing information, so patients have to repeat themselves less.

One key point that we overlook: there is a phase of the patient’s care between the initial assessment and receiving test results when they feel uninvolved or out of the loop, which contributes to increased anxiety. I try to alleviate this by clearly telling the patient at the outset what tests I am ordering, what I am looking for, and about how long the results usually take. If you have time, quick check-ins reassure the patient that you haven’t forgotten them, and can also help identify hidden issues that often arise only at the moment of discharge.

Emotional Needs

The emotional requirements of patients were captured in three major subthemes: “coping with uncertainty”, “recognition of suffering”, and “empowerment”.

A lack of information results in a lot of anxiety for our patients. Patients assumed that the longer they waited for test results, the more likely that something is wrong. This led to increasing anxiety the longer they had to wait. I think this is a really important insight, because we are often rushing to the bedside of patients with abnormal tests, while letting patients with normal test results wait. However, patients don’t know that, and assume the long delay is because something is wrong. A very quick visit to say that the results are back and don’t look concerning, but that you need to manage a few critical patients before fully discussing the results might help. Empowering nurses to pass that information along can also work. Another thing to consider: it is often a good idea for the flow of the department to discharge these patients as soon as possible rather than making them wait, even if they are less critical.

One point that I found interesting was that patients with chronic illness disliked when clinicians expressed diagnostic uncertainty, because it seems like the clinician is not listening or taking their perspective into account. For example, if a patient with gastroparesis presents with vomiting and abdominal pain, but has a negative workup, they would prefer a final diagnosis of “gastroparesis” to “abdominal pain NYD”. We are normally taught to do the opposite, primarily for legal purposes (in case we are wrong). However, good communication can probably account for both perspectives. “I did not find a dangerous cause of your abdominal pain today. This is likely your chronic pain from gastroparesis, however, as you know, there is no way to be sure, and there are many other causes of abdominal pain. If the pain changes, or you develop new symptoms or concerns, come back so we can check you again”. (See this post for more discussion about communicating diagnostic uncertainty.)

Patients feel empowered when they are given the opportunity to express themselves, tell their own story, and feel like they were taken seriously. Other simple factors that made patients feel empowered were checking on them frequently, showing diligence, and involving patients in decision making.

Care needs

Competence is a bare minimum, but patients notice some technical aspects of care that you might not expect. For example, one patient said that she felt safer because she witnessed a trauma team working in an organized and predetermined manner. 

Probably the most important point is that although patients recognize that good care has both technical and relational aspects, they are critical if the technical aspects are perceived to take precedence over the relational. 

Unfortunately, patients want a “definitive diagnosis”, which we know is rarely possible in emergency medicine. We need to be aware of that expectation and address it with patients. 

Waiting needs

Long waits are obviously a problem, but more specifically, patients are concerned about crowding and comfort while waiting. A lack of privacy in waiting rooms was also a concern.

Patients generally say that they can understand the need to wait in an emergency department, and understand that sicker patients need to be seen first. However, waiting room anxiety is increased significantly by the lack of information available. Timely and accurate information mitigates against the problem of waiting. 

For a non-medical look at the science of waiting, see this excellent podcast from 99% invisible. There are definitely some concepts in there that we should adopt for emergency medicine.

Physical environment needs

The emergency room, unsurprisingly, was described as unfamiliar and uncomfortable. There are many distressing aspects of the environment, including noise, lack of privacy, isolation (difficulty reaching the call bell or communicating with staff), and unfamiliarity with the environment. Patients also see it as very important that the ED provide for basic physical needs, such as water, toilets, food, blankets, clothing, and a comfortable bed. 

My thoughts

There are limits when trying to extrapolate from qualitative data. Qualitative data lacks many of the controls for bias that we are used to with quantitative data. Sampling is often selective, limiting external validity. Without any numbers, minority opinions can be over-represented. However, there are also many benefits of working with qualitative data. Qualitative methodology is inductive, meaning that it allows for insights that aren’t possible when research requires an a priori hypothesis. We are presented with a richer description of the world than is possible with means and medians. Furthermore, although they may be overweighed, minority opinions can be voiced, where they might be lost to statistical measures. 

There are some great insights in this paper, including some things that surprised me. Of course, the results of this paper shouldn’t be taken as universal truths. I expect that patient desires in the real world are more complex and varied than can possibly be represented in a single research paper or blog post. However, I think any emergency clinician who takes the time to read this paper and reflect upon the results will end up discovering ways to improve the experience of the patients in their emergency department.

Bottom line

Emergency departments are horrible places to be patients. Although our primary concern in emergency medicine is keeping our patients safe and healthy, I think we have a responsibility to improve patient experience as much as we can. A good guide is to treat patients not just as we would want to be treated, but as they want to be treated.

References

Graham B, Endacott R, Smith JE, Latour JM. ‘They do not care how much you know until they know how much you care’: a qualitative meta-synthesis of patient experience in the emergency department. Emergency medicine journal. 2019; 36(6):355-363. PMID: 31003992

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Title photo by Hailey Kean on Unsplash