Writing with empathy for patients
A document written for a patient has to do more than impart facts: it has to show the reader that the writer understood their emotions, their situation and the way they see it. That understanding rests on intelligibility, the patient's point of view and credibility, and it shows in grammar, in word choice and in what the writer chooses to address. Encounters in which doctors failed to show it, and patients' own accounts of living with an illness and its treatment, show what a patient needs to see.
Writing for patients
Medical writers' texts are usually directed toward specialists such as licensing authorities or the scientific community, but writers increasingly also write for nonprofessionals, including patients and their relatives, because decisions regarding diagnostic procedures and treatment are no longer made exclusively by physicians and therapists. Patients search the print and digital media for information about medicines and medical procedures and, armed with it, seek out the clinics and practices that offer what they feel best fits their needs. Texts written for patient communication can help them realistically appreciate their situation and assess the advantages and disadvantages of the various therapy options.
Successful patient communication is especially crucial in chronic illness, which brings complex, regular treatment routines over a long period, and in which treatment sometimes becomes the patient's own responsibility. In such cases, effective patient communication can contribute to more health-conscious behaviour and foster adherence, which is often decisive for a therapy's efficacy, because patients adhere to a treatment plan only when they accept the need for the regimen, understand how to deal with the medicines and application devices, and are prepared for possible side effects.
What makes a text empathic
Writers whose work is intended for patients cannot merely impart facts but have to demonstrate that they comprehend the patient's emotions and rationale: they have to write with empathy, which means being able to put themselves in the patient's place, having sensitivity about the patient's symptoms, and understanding the patient's hopes and fears. Empathic texts are intelligible, credible and written from the patient's perspective.
What empathy does for patients
Companies and clinics describe themselves in numerous advertisements and websites as "patient-oriented" or as practising a "holistic healthcare approach", and two authors on empathic patient texts hold that only empathically written texts can prove these claims are more than platitudes, and that only in this way, followed up by true empathy in physical dealings, can real proximity to the patient be achieved. Patient communications should therefore be based on the ideal of the helpful, empathic caregiver. Empirical investigations show that patients' satisfaction with their care is determined by how the physician communicates. Empathy can even influence the results of therapy: patients recover faster from the flu when they have an empathic physician. Insufficient empathy impedes contact with the patient, and visits that are not empathic last longer and tend to be frustrating for both doctor and patient. The same may be true for patient texts: when patients understand the content and can identify with the language, patient texts can fulfil their true function, and patients then find it easier to comprehend and come to terms with their situation, accept their condition and assess the advantages and disadvantages of the treatment options. Empathic texts can also encourage health-conscious behaviour and foster compliance with the therapy plan.
In a controlled study, physicians who attended to the subjective experience of the patient, even a patient coming with a common cold, had patients who got over the cold a day sooner and had a more robust immune process. A clinical professor of psychiatry holds that it is malpractice, one could say, to have a physician who is not in tune with the emotional life of others.
Empathy in health care has been shown to improve patients' emotional health, symptoms and psychological responses and to increase medication adherence and patient satisfaction: feeling seen and heard makes patients more likely to listen to and follow the recommended course of action. One of the main reasons is that empathy builds trust: neuroeconomics research found a correlation between the oxytocin a person's brain produces and the trust they feel, and a direct link between oxytocin levels and empathy: the higher the oxytocin, the higher the empathy, and the higher the empathy, the deeper the trust.
Expressing empathy in language
Once the condition of intelligibility is met, there are techniques that help express empathy linguistically.
Taking the patient's position
The simplest technique is to take the patient's position: instead of writing "physicians explain the therapy options", write "Patients inform themselves about possible types of treatment". The writer thus tries to capture the patient's situation in the content as well as in the language, which can be done only if the writer constantly reflects on how patients might perceive a concrete situation: what the patient actually sees, hears and feels. The simple fact that a medicine is to be given under local anaesthesia can be expressed as "You will barely feel the injection because the spot will be numbed beforehand".
A healthy person needs a high degree of psychological dexterity to empathise with patients experiencing an illness and all its facets. The illness's direct symptoms or the effects and side effects of treatment might not be the patient's principal issue; the fears and problems indirectly associated with being ill or with the treatment are often more of a concern, and they may concern relationships, social interactions, work, physical activity and mobility. Self-help groups or relevant internet forums can help writers comprehend what really disturbs patients.
Choosing the patient's words
The reader of an empathic text sees the writer's understanding particularly in the word choice, because even individual words awaken associations as well as conveying information. Someone who suffers from migraines describes them as "attacks" or "thunderstorms in my head", and a person with toothache uses words like "intense" or "throbbing", so writing generally about "pains" or even "complaints" in such cases would hardly demonstrate empathy.
Credibility
Writers striving to be perceived as empathic must be absolutely credible, explaining facts entirely and explicitly on the basis of the latest medical knowledge. Explaining research results plainly yet precisely is surely one of the greatest challenges of empathic writing. Today's patients want to construct their own image of the illness, its prognosis and the therapy alternatives, and many refuse to rely on a single authority, preferring to do their own research and compare sources, so patient communication texts must provide references. The vague claim that a diagnostic procedure is "based on scientific findings" or that a drug "has been tested in clinical studies" is definitely inadequate.
Six ways to build empathy into writing
One of the main ways people empathise is in language, and creating meaningful communications, whether health websites, patient handouts or journal articles, needs writers who know their readers and care about their lives. In a culture that values self-control and bodily perfection, being sick or even just old can bring feelings of shame and inadequacy, and a health literacy firm set out to encourage the use of everyday words, to normalise embarrassing questions and to reduce shame and stigma.
The firm's president gives six ways to build empathy into writing:
- Write clearly and use familiar terms: a writer has to reach patients intellectually to engage them emotionally, which means using familiar language, defining technical terms and breaking information into short chunks that can be easily digested; stress and illness compromise the ability to understand and retain health information.
- Normalise the experience, because people who are sick or uncomfortable are often scared and making an experience seem more common can help: "Some people with herpes find that they experience 'X.'" or "Many people who have been abused by a partner have done 'Y.'"
- Put yourself in the patient's shoes: consider what it would be like to live with a health issue you do not fully understand, and what information would ease your concerns and even improve your condition.
- Acknowledge emotions: negative emotions such as fear and shame can get in the way of clear thinking and healthy choices, and acknowledging readers' feelings can make it a little easier for them: "It may be hard to talk to your doctor about your concerns, but it's important."
- Be encouraging: pay attention to tone, keep things positive when writing about a sensitive topic and consider including a message of hope, such as "It's normal to feel overwhelmed at first, but lots of people have learned to live with a catheter and you can too."
- Be credible and explicit: explain research results plainly and precisely, which is one of medical writers' greatest challenges and essential to building trust; many readers compare several sources as they seek to understand their diagnosis and treatment, so being credible is essential.
Adapting a line credited to Plato, she puts it as "Be kind, for every one of your readers is fighting a hard battle", and holds that empathising with readers, by not talking down to them but meeting them where they are, using their language and putting oneself in their shoes, puts the heart in medical writing. By rejecting the stereotype of the noncompliant patient, sharing a personal story, choosing a patient-centred term or simply changing a pronoun, a writer sends the reader a powerful message: "I see you."
A denial letter without empathy
An extreme example of a lack of empathy is a health insurer's denial letter that made the rounds in the news: "You requested man-made arms. Your arms were amputated. This claim is denied." The claim had been denied because the doctor was out of network, which does not come across in the letter at all. The revised letter the health literacy firm wrote with the insurer, which its president calls far from perfect, changed the tone, gave a bit of explanation from the beginning, and set out the process that went into deciding the claim, why it was denied and what some of the next steps could be.
Failures of communication between doctor and patient
A physician holds that medical communication, and particularly communication with patients, is such an important part of practising medicine that it cannot be repeated or taught often enough, and that it is sparsely taught to new physicians. He reports four real situations in which, he holds, a little better communication or more common sense would have created a good working relationship for physician and patient, and perhaps a better outcome for both.
A patient visiting a new dermatologist noticed that the doctor did not wash his hands before examining him and asked him to; the doctor told him to get out and formally discharged him as a patient, though he had never seen him before or even examined him at that visit. In his commentary, the physician was totally wrong not to wash his hands between patients, which as a dermatologist he especially had to understand. A doctor who had washed elsewhere after the previous patient could say so and apologise, and learn to wash in front of the patient he is about to examine; one who forgot in an office rush should have apologised and washed; and one who did not believe in hand washing should do it just for show, to impress his patients.
A patient referred to a consultant was accompanied by her physician husband, who began to offer her history; the consultant waved his hands and told them both not to talk to him but to answer his questions. The commentary suggests the consultant was apparently rushed or interested only in treating diseases, not patients, perhaps a good doctor but a poor communicator, who perhaps never heard or did not believe Sir William Osler's axiom, "Listen, the patient is telling you the diagnosis". It compares another consultant she saw the same week, who approached her immediately with his eyes on her, touched her hand and asked why she thought she had been referred to him; his approach expressed interest in the patient and sought her view of the purpose of the consultation, which the commentary calls good communication and good medical practice.
A surgeon telephoned a patient to tell her a breast biopsy showed cancer, and when she asked in shock what she should do, told her to come into his office on Monday to discuss her options; when she asked what she should do until then, he said they could talk about that on Monday and that she was not his only patient. The commentary asks whether, assuming good intentions on his part, he should have said that it can wait until Monday, that everything is not bleak, that there is great success with breast cancer treatments and that he has a number of patients who have done well after treatment, or whether he was simply immune to a patient's worries and emotional state as long as what he was doing was scientifically correct.
A young internal medicine resident called a senior colleague in great anxiety about a patient who smoked and would not stop despite everything he had tried; asked what symptoms the smoking caused, he answered none, and asked the patient's age, ninety-four. The lesson the commentary draws is never to treat someone without considering who the patient is, how old he is and what his lifestyle is: to treat the human being, not just the disease or symptom.
Doctors like these are, in the physician's view, a minority of practitioners, but when such situations occur patients often infer an absence of caring or a lack of understanding on the part of the medical profession, not just of one renegade member.
Living with a combination product
A man who by 2025 had lived with type 1 diabetes for 28 years, since a diagnosis at age 10, set out for medical writers what living with combination products is like. He moved from a manual insulin pen he loaded with a cartridge himself to a prefilled pen, then to an insulin pump from around 2015, and by 2025 used a disposable pump worn on his arm with the insulin in the back of the pod. Anyone who has done something for that long is typically considered an expert, he says, yet with type 1 diabetes he learns something new every day, or the condition teaches him something he was not expecting.
The first thing he names is trust in a device, which for him is critical and is about safety, reliability and ease of use. Moving onto a pump meant putting insulin, a drug of which too much or too little can kill him, into a device he does not control manually, built on the same technology as a mobile phone or a television that sometimes does not work, and his pump sometimes does not work either, though he is a paid ambassador. He had more trust in himself when the process was manual, and giving that trust away changes things. What builds his trust is the education patients receive from the company when they first go onto a product and from other patients, and he has learned much about using his pump and managing his diabetes through peer support. What erodes it is product recalls and system failures: when his life is in the hands of a product that does not work, he has to deal with the real consequences himself, such as glucose levels going too high, and that affects him physically, mentally and emotionally. Building trust takes time, and it means giving control over to a system he is learning to use and that is learning about him. In closed-loop systems an algorithm links his insulin pump to his continuous glucose monitor, and he asks how trust is built when he has to let go of what was a very manual process.
The day-to-day challenges he names begin with access, and in some places affordability. He lives in the United Kingdom and counts himself very fortunate to have access to the National Health Service, but that access comes with the challenge of navigating the system, and getting his pump was a journey of struggle and of fighting for what he knew he was entitled to. He was able to navigate the system, but someone who cannot does not know where to go for help and support, and that stops them getting the best devices for managing their condition. There is also usability and the learning curve: a pen is load, attach the needle, dial and inject, while a pump is very different in how it is set up and managed and in the kinds of insulin dose it can give. And there is the fear of making a mistake with a drug of which too much or too little can kill him.
Two pieces of technology are attached to him 24 hours a day, and sometimes he does not want to be attached, but removing them makes his glucose levels rise and puts his long-term health at risk. This physical impact is probably unseen by others, but people wearing a device around the clock are very conscious of it, and it reaches sleep, showering and going out. It can affect how a person, particularly a younger one, views their body, and scars and lumpy injection sites have a significant impact on body image and on a person's relationship with their condition. Devices are not paused when life gets busy, and when he plans his activities his devices are part of the plan, as when his pump is due to expire an hour before he is due on stage.
He holds that the psychological and emotional impact of a chronic condition is usually a bit hidden when chronic conditions are talked about, because the focus is on the physical side, and that for him it is much more important than the physical side. He calls one part of it device fatigue: monitor alarms constantly going off and the pump beeping when it is changed, and a feeling of always being connected that, unlike a phone, cannot simply be put away. He describes nights when the monitor alarmed repeatedly and required action, and a pump failure in the middle of the night, followed by a working day to be got through as a functioning member of society while exhausted. He asks writers how often they consider that these devices are not just tools but become part of a patient's identity, and sometimes part of their distress.
A device on show can draw comments, such as "Oh, what's that? Oh, you've got diabetes. Is that the good kind or the bad kind?", and that message is easy to internalise. Not letting a random comment affect him takes what he calls an inner strength, and he has come to see such a comment as perhaps a chance to educate someone or to talk, though for a long time he did not talk about his diabetes. His message to writers is that words have power and can reinforce stigma if a condition, and not only diabetes, is not spoken about correctly, depending on where one is. His devices can form part of his identity, but they are tools and do not equal him: many in the chronic illness community say they are more than their devices, and they fear being seen and judged as the diabetic one or the one with the pump when that is only part of who they are.
He describes consultations in which his consultant unintentionally prioritised data, asking what his numbers were rather than how he was, and holds that this makes a big difference to his relationship with his condition and with his consultant. For him it is about seeing a person as a human rather than as their condition. As a patient, he says, he does not just read writers' words but relies on them, because the writer is using an expertise to deliver a message that educates and informs him about what he does not know. Clear communication is key for him, as is language that is neither unclear nor overly technical. The technology for his condition moved fast in the 10 to 15 years before 2025, from a pump and a separate glucose monitor to devices that talk to each other, which he finds exciting as a patient and expects to be a challenge for medical writers.
Living through cancer and a clinical trial
A journalist learned she had melanoma in a telephone call from her dermatologist. A year later she was diagnosed again, with presumptive stage IV disease, which carried a presumed seven more months to live and odds of surviving five years well below 10%, and she became one of the first people in the world in a clinical trial of immunotherapy, one of its first ten. She spent two years in the trial while still working, parenting and living her life. She holds that illness and treatment happen in people's lives and world, not on some separate plane, and that conditions need context because they are not discrete. Cancer-free for eight years at the time of her address, she holds that she is always a patient, which is sometimes a badge of honour, and that sometimes she wishes people could see her as more than just a patient. She and her doctor gave a guest lecture each spring at a translational medicine class at a prestigious medical school whose physician introduced her doctor by his achievements and experience and her only as "and a patient"; she thinks he never learned her name or saw her as a human being with a story to tell and an experience that informed the process of research, but saw her as cells on a slide, though she counts herself fortunate because he was an exception. In the trial she worked with a team of doctors, nurses and researchers who for the most part respected and listened to her, and she was a collaborator and an active voice.
She holds that health care and the humanities need not compete, that concepts like critical thinking, listening and simple language are essential to the process, and that the humanities, though less attractive than data, are not decorative but essential. She hopes that context gives depth and richness to diagnosis and treatment, when not just disease but the people affected by it and their circumstances are seen, and holds that health care is not isolated.
Patient safety information
A health care policy writer and patient-safety champion who wrote policy at a think tank, which she calls working at 30,000 feet, moved to listening to and talking with the patients the whole enterprise is about, which she calls the most transformative work of her career. A regulatory writer with a background as an operating room nurse urged fellow medical writers to think of themselves, when writing patient safety information, as patient advocates, and to look carefully at the data for the little things that can turn into big things over time. When she had asked a gathering of medical writers whether they saw themselves as patient advocates, just one person raised her hand. A journal editor adds that not every medical writer is a regulatory writer or touches safety data as such writers do, but in ways direct and indirect a writer's work can influence the health and care of actual people.