May 2019, Volume XXXIiI, No 2
Surviving a stroke
Lessons learned from being a patient
ach of us heard these words from an emergency room physician earlier this year, coincidentally about a month apart. Shocking? Life-changing? Perspective-offering? Reminding us of the importance of gratitude? Yes. We are friends and coworkers (a clinical psychologist and a nurse practitioner, respectively) in a family medicine residency clinic. We’ve each had over 20 years of experience caring for patients with a wide array of physical and mental health problems, but getting a serious diagnosis and being admitted to the hospital were uncharted territories. The experience was humbling, frightening, confusing, and overwhelming. Fortunately, we both have no residual damage from our strokes and are extremely grateful for great prognoses, excellent health care teams, and supportive families, friends, and coworkers.
As we both spend much of our professional careers teaching resident physicians and trainees from other allied health disciplines, we often reflect upon teaching opportunities. Having a stroke, spending time in the hospital, and having mandatory time off work for recovery involved unique experiences and time for reflection. In attempting to make meaning of the journey, we have contemplated our experience as patients, including what was especially helpful and what was difficult in interacting with the health care team. We want to use our experiences to shape our teaching—and, hopefully, invite others to consider our lessons learned from the other side of the hospital bed.
Reflecting on our experiences as patients in the emergency room and hospital floor, we humbly offer the following recommendations for health care professionals:
Be aware of how much information I can digest, especially shortly after a major medical event. One of us was visited bedside by a specialist three hours after the stroke. He stood at the end of the bed at 6 a.m. and gave a one-hour, highly detailed neurological overview of strokes and treatment options. Although I wanted information, I simply couldn’t assimilate this level of detail; hearing all this information and trying to absorb it was stressful. A simple, short explanation right away, followed by more details later, would have been more helpful.
Sit down. Balance computer work with meaningful patient interaction. Although sitting down next to the patient is possibly a common-sense suggestion, we learned it is not a consistent practice by the providers in both our emergency departments and patient rooms. We both had a few physicians sit down in chairs by our beds, which allowed for more comfortable communication. However, many providers stood quite a ways away at the end of the bed, seeming to tower over us. We understand that documentation in the computer (oftentimes on standing platforms) is necessary, but some providers asked questions and documented information while looking primarily at the computer. Instead, start the interaction by sitting down at our level, and make eye contact whenever possible.
Observing conflict among health care team members is distressing.
Please use simple language and avoid acronyms. Even as seasoned health care professionals, we felt overwhelmed after our strokes. We were unsure of the cause of our strokes, and we asked ourselves what we might have done (or not done) that led to this medical event. We worried if the immediate post-stroke symptoms (e.g., headaches, dizziness) would go away. We wondered when we could return to work. We were afraid of having another stroke, and wondered what we could do to prevent a recurrence. While dealing with these questions and trying to cope with the shock of the diagnosis, we struggled to process new information. Providers’ use of technical terms, jargon, and acronyms made comprehension more difficult. Instead, offer concise explanations, repeat them, use layperson language, and elicit questions from the patient.
Please be consistent in the terminology of medications. It’s confusing when health care team members alternate between generic (lisinopril) and brand (Prinivil) names ... and sometimes use drug class names (e.g., “ACE,” for “angiotensin-converting-enzyme inhibitor”) or even abbreviations (do you want your “dil”—for diltiazem).
Drawings or written information are helpful, but check on patients’ preferences. In the hospital, we were each given detailed booklets on strokes that included key terms, risk factors, and treatment options. However, immediately after a major medical event, even opening such a book can feel overwhelming and daunting. We never thought that a book called “Life after stroke” would be relevant for us. We appreciated physicians who walked through key parts of the book and drew some basic pictures for us.
Too much detailed information and too many visuals can be frightening, so please consider balance. One of us will never forget the pictures of the white spots in her brain, real proof of the damage done by the stroke. It would be helpful to ask patients if they want to see the picture rather than just showing them.
It would also be very helpful if patients could have a small notebook in which to write down their questions and the doctors’ responses.
Seeing you consult with your colleagues is comforting, but observing conflict among health care team members is distressing. Patients appreciate when team members work together to define treatment options and understand there may be differences of opinion. However, watching you disagree in front of us and seeing you badmouth your colleagues is upsetting. Please address disagreements outside of the patient’s room.
Words of encouragement are extremely helpful. As patients, we have not been through the routine “stroke protocol” and don’t know what to expect. Receiving reassurance and hope for recovery can feel very good. One us has had a good friend (who was incidentally also a physician) visit her on the first day after her stroke. His words —“you’ll only get better from here” (referring to the sequelae of this stroke)—were incredibly comforting and bolstered her spirits immensely.
Avoid terms of endearment. Although we definitely appreciate kindness and compassion, we are still your patients and ask that you maintain professional boundaries. Although we know you’re trying to be kind when you refer to us as “honey,” “sweetie,” or “dear,” we are none of those things to you; such terms can feel patronizing. Instead, ask us what we like to be called and then address us by our preferred name.
Being in the hospital can be boring, and we spend a lot of time waiting for doctors. We know you’re very busy and have many patients on your service. However, any indication of when you’ll be available or stopping by is very helpful (e.g., “I tend to round in the morning”).
Being in a hospital bed can make you feel like a caged animal at times.
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