The Term “Patient” May Describe Me … But It Does Not Define Me

 

 

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Editor’s Note: Recently, I had the privilege of being part of a very stimulating email thread on the Society of Participatory Medicine’s member-only list about the meaning of the word “patient” and what it implied for the field of Participatory Medicine. I invited several of the participants in this “conversation” to submit their ideas to the Journal to be published in the Commentary section. This excellent piece on whether we should consider changing the term “patient” is the first one I have received. I appreciate Mr. Scott’s perspective. I view the patient care arena a little like a battlefield, which the doctor and patient need to approach with their senses activated to give the encounter their best effort. Sometimes, though, we need “wakeup calls” like the slap in the face Mr Scott gave his cardiovascular surgeon at 3 AM before he was to undergo heart surgery. This is a good example of an activated, engaged patient, and one of the countless examples of how patients can participate in a way that improves their own health care outcomes. –CWS

Abstract

Summary: Although some individuals prefer to describe themselves as e-patients, em-patients, consumers, clients, etc., the historic term “patient” is, in fact, a sufficient and effective descriptor of “a person seeking or needing the services of a health care professional.” However, if we are to achieve a US-based or a global health care system which embraces the concept of participatory medicine, some significant behavioral changes will be needed to ensure appropriate interactions between the users and consumers of health care services and the persons who manage and provide those services.
Keywords: Patient, e-patient, em-patient, client, consumer, terminology, mindset.
Citation: Scott EMD. The term “patient” may describe me…but it does not define me. J Participat Med. 2010 Dec 29; 2:e22.
Published: December 29, 2010.
Competing Interests: The author has declared that no competing interests exist.

What’s in a Name?

Changing what we call things can be important–even liberating.

A colleague of mine changed his surname recently, from Smith to something less common.

Why? Because almost every time he went through an airport, he was called out of line, manually searched, further interrogated, etc. He was fed up with it. Then he learned he had the same name as (and some other similarities to) someone on the US government’s No Fly List. My colleague decided something needed to be done. It took time and money–but it worked. The change in name radically altered how he was treated as a frequent flyer. He now feels much happier.

Some people believe we need to replace the term “patient”–the term we use to describe a person seeking or needing the services of a health care professional. Such people argue that, “The word patient has negative connotations.” They believe, with some justification, that the term “patient” carries implications of passivity. They think (or hope) that changing the term will change the way “patients” are treated. They make note of its historic and etymological associations with the concepts of patience and suffering.

Redefining the Provider-Patient Relationship

A few years ago I sat on a gurney in the emergency department of my local community hospital. It was about 3:30 AM on a Sunday morning. I had had a distinctly unexpected heart attack. The cardiovascular surgeon had just walked into the room and was about to give me the once-over. Others were running in and out. I was very much awake and very aware that I was lucky to be alive.

The surgeon was not very awake at all. I looked at the name on his coat.

“Hi Dr. _____,” I said. “Sorry to get you out of bed at this time in the morning. Will you be operating on me?”

“Yes,” he mumbled, looking at the printout from the EKG.

“Good,” I said, with a big grin. “So please don’t f*** it up. Otherwise I’ll have to call Eric Topol from beyond the grave.”

The good doctor was immediately wide awake. I now had his complete attention.

“You know Professor Topol?” he asked.

Yes, I did know Dr. Topol, and yes I did indeed use the “F” word.

There are times when the wise patient is passive (and long-suffering). I know little about cardiovascular medicine. I had no intention of trying to discuss the details of my emergency surgery with the doctor who was about to carry it out. I was a prisoner of circumstance: very much a traditional “patient” with a severe problem in a hospital emergency department in the middle of the night.

However, I do know that a surgeon who is less than fully awake and who is “going through the motions” is not what I need when I am about to have an emergency cardiovascular procedure. I used information available to me to get the good doctor’s absolute attention and change myself in his eyes from “just another blocked artery” into an identifiable individual entitled to his full range of technical capabilities.

Compare this story to the former one. In the first story the change in name made a definable and measurable difference to the actions and behaviors of others. My colleague was apparently no longer on the No Fly List. In the second case, it didn’t matter what I was called. I was very definitely “a person seeking or needing the services of a health care professional”–a “patient.” What mattered was how the surgeon saw and related to me, not what I was called.

I have argued for years–quietly, and usually politely–that replacing the word “patient” with another term will do little or nothing to change the relationships between health care professionals and those who seek or need their services.

For interesting historical reasons, in the UK, surgeons are called “Mister” (or “Ms.”), not “Doctor.” It doesn’t matter. Everyone understands they are still doctors. Calling surgeons “Mister” is just a term of art that is peculiar to the British medical system.

Equally, “patient” is a term of art. The term itself is not inherently important. What are important are the implications of the term to the nature of the relationships between each individual patient and the health care professional whose services are being sought out or required.

I am a patient, a patient advocate, a patient educator, and a professional health care communications specialist. There are days when I am all of these things at different times during a single 24-hour period. There is no one term that encompasses all these different functions. They are distinct. They may be interrelated, but they are not the same thing at all.

The thing that they have in common, when seen from my point of view, is a perspective: every patient is an individual who is entitled to the respect and full attention of health care professionals. Whether the patient is active or passive, the health care professional should act–first and foremost–in the best interests of that patient. Sometimes that can be ethically, morally, and even personally challenging, but the obligation on the health care professional remains the same. From that point of view, the term “patient” is actually helpful. It assists the health care professional to remember that obligation–under all circumstances.

Derived from Latin and Old French, the English noun “patient,” when used in its medical sense, is at least 628 years old, having been used by Chaucer in 1382.[1] If some individuals want to redefine themselves as “e-patients,” “em-patients,” or “clients,” rather than “patients,” that’s fine. However, the likelihood of successfully forcing such a wholesale change on even the 300-year-young US health care system is miniscule. What is necessary is a (gradual) shift in mindsets, not a sudden change in terminology.
Here is a brief list of mindsets commonly observed in health care settings that probably drive most readers of this journal to distraction:

  • The physician’s office receptionist who behaves as though his or her primary goal is to protect Doctor (yes, with a capital D) from actually having to see or talk to patients – at almost all costs.
  • The patient in the emergency department who believes that everyone needs to drop everything else because he or she needs attention now – for his hang-nail, while there is a child with a severe gunshot wound in the next exam room.
  • The autocratic nurse who walks you into an exam room, never attempts to use your name, and simply says, “Take off your clothes and put this on. Doctor will see you soon,” while tossing you one of those socially demeaning examination gowns.

The mindsets are the problem, not the terms “patient,” “doctor,” and “nurse.” The self-empowered patient has learned ways to deal with the types of mindset exemplified above. The passive patient who needs help to become empowered will gain the first steps along that path when he or she is treated with respect and tact. The wise healthcare professional has learned ways to deal with the patient who thinks of no one but him- or herself.

Change Mindsets, Not Terminology

Effective participatory medicine requires mutual respect and acknowledgment of the rights of the various participants. It is not about how smart or dumb the “patient” is. It’s not about whether the doctor has a PhD as well as an MD after his name. It’s not even about whether one is a wise user of Internet-based services. It’s all about how people interact with each other. If the doctor isn’t listening to me describe my symptoms, I will know. If I am not listening to the doctor when he or she is telling me I need stop smoking, he or she will know. But if I am listening to the doctor as he or she tells me I need to stop smoking, and I then say, “I hear you, but I don’t know if I can manage to do that,” then we have the beginnings of an understanding.

I appreciate why some people want to discard the term “patient” and replace it with something else, but I would respectfully suggest that the term of art is not the problem. Participatory medicine is going to require a societal shift in how we interact with each other if we are to achieve definable goals.

To achieve that shift, we shall need some other societal shifts too. It’s going to be a slow process. Medicine does not encourage sudden change–and for good reasons. This process may take 100 years to reach fruition. My interest is in getting it off to a good start–by willingly accepting some things that really just don’t need to change and fighting like Achilles about the things that really, really do.

We who believe in participatory medicine (and those among us who actually practice it, from whatever viewpoint) have the opportunity to redefine and transform the meaning of the word “patient” so as to eliminate any inherent idea of passivity and being long-suffering, just as the word “consumer” has been redefined and transformed from its initial meaning of one who acquires and “consumes” food.

Reference

  1. [1] Compact Edition of the Oxford English Dictionary. Oxford: Oxford University Press; 1971.

Copyright: © 2010 E. Michael D. Scott. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.

Comments

7 Responses to “The Term “Patient” May Describe Me … But It Does Not Define Me”

  1. Anne Lawlor says:

    A round of applause please…and what struck me immediately was that this is something that is not confined to participatory medicine, society needs this seismic shift in relation to everything. my particular interest is in people with disabilities and how they are referred to and treated. I know in the US it is only recently that the word ‘retarded’ has been dropped (there are still cases where terminology actually does need to be changed) here (Ireland) we use Intellectual disability. I have long campaigned for the term ‘disabled child’ to be changed to ‘child with a disability’. Always always person first, whether they be a patient, disabled,or otherwise is secondary. Person-centred approaches are needed all round and for everyone to get off these little power trips that they’re on. As Michael D. Scott said “It’s all about how people interact with each other”. The amount of mothers of children with 22q Deletion syndrome I know of who have been derided for daring to suggest that there’s something more wrong with their children is unbelievable, and the thing is, they’re always proved right in the end. Mothers are experts too.

  2. Jackie Fox says:

    This is excellent!!! It should be required reading for everyone weighing in on this debate. I so agree with you that perhaps the terms are not at fault, but rather the way we treat each other. (I will admit I’ve gotten a little caught up in the “terms” part of the debate myself as I don’t mind calling myself a patient and don’t like using “consumer” because of the transactional nature it implies.) I think you captured the heart of this matter better than anything else I’ve read. I know, some will say language leads but look how caught up we’re getting in what to call ourselves instead of how to act.

    Bravo.

  3. I agree with the need for a change in mindset. However I disagree with the need for “empowerment”. As long as the relationship between doctor and patient is viewed as one based on power instead of one based on love and compassion the problems that we are all aware of will continue.

  4. The points made in this article hit the nail on the head. The word “patient” is not what does or doesn’t earn respect. I would like to elaborate on your points about development of a positive relationship between patient-health care provider. Just as health care providers are accused of possessing an edge of arrogance, patients sometimes possess the same; it’s a two-way street. Often, if the patient takes initiative to makes some adjustments, the relationship with the health care provider will become more salient, cordial and productive. So what does the patient need to do? In most cases, the patient is seeing the health care provider due to a non-emergency medical problem. This means there is time to prepare for the medical appointment. Write down specific symptoms and health problems you want to discuss; prioritize them. Write down questions. Bring pen and paper to take notes. When necessary, say to the doctor, “I’m not following you. Will you please re-explain what you just said and talk a little slower for me? Can you draw me a quick diagram to help me understand my problem? Where can I learn more about my diagnosis?” Stay on track with your appointment “agenda,” which indicates to the doctor that you are respectful of his time. Additionally, be pro-active in your health care treatment plan; for example, find out, in advance, if test results got from Primary Care Doctor A to Specialist Doctor B. And, to the health care worker who tells you to undress yet fails to introduce himself, you, the patient, can use a little humor: “I don’t usually undress for people I’ve just met! What is your name and what is your job in this office? Will you be coming back in?” And remember, in whatever you say or do, there is a fine line between being assertive and being aggressive.

    Sheryl Kurlando
    Orlando Patient Advocates

  5. Dr. Arpaia raises an interesting point. However, the terms “empower” and “empowerment” are also commonly used in the sense of “increasing a person’s confidence and capacity for self-reliance.”

    My use of the term “empowerment” in the commentary above was intended to have the implication of “increasing a patient’s understanding that he or she is entitled to have an active role in his or her medical care.” It was not intended to imply “power” per se.

    It should be noted however, that the behaviors of at least some health care professionals and more than some “patients” (in my reasonably extansive experience) can and do involve a “power-based” relationship which we might summarize as, “Here’s what I need you to do.” I would also respectfully point out that “love and compassion” were not what I needed from the cardiovascular surgeon at 3:30 am in the morning. What I needed were his technical skill and his attention to detail.

 

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