“How Are You Feeling?” Is a Harder Question Than It Sounds

I often tell cancer patients that our healthcare providers don’t have any magic Star Trek wands that they can wave over us to determine where it hurts, what caused it, and how to fix it.

They can’t determine how we slept last night, whether we have been eating, if we are anxious or depressed, whether we have been taking our medications, or what has changed since our last appointment.

There are usually solutions, but we don’t walk into a provider’s office with a specific set of instructions or a rolling history.

Our healthcare providers depend on information. And a significant amount of that information has to come from us as patients.

That makes a seemingly simple question incredibly important: “How are you feeling?”

The problem is that it is also an incredibly difficult question to answer.

A Lot to Cover in a Short Visit

Cancer diagnosis and treatment asks a great deal of both patients and healthcare professionals. In a relatively short encounter, a provider may need to review laboratory results, medications, imaging, treatment response, side effects, new symptoms, previous concerns, and the next steps in treatment. Time pressure is real enough that the Agency for Healthcare Research and Quality (AHRQ) specifically teaches clear-communication and teach-back strategies that can be used within a 15-minute visit.

Meanwhile, the patient may be trying to explain weeks or months of life.

Where does it hurt? When did it start? Is it getting worse? How tired have you been? Are you sleeping? Eating? Exercising? Have you missed medication doses? Are you experiencing neuropathy? Nausea? Dizziness? Anxiety? Depression?

Then there are factors that may never appear on a lab report.

Can you afford your medication? Do you have transportation to your appointments? Is healthy food available where you live? Do you have someone helping you at home? Are you working? Are you worried about losing your job? Can you understand the instructions you were given?

These are examples of social determinants of health and related social needs. The National Cancer Institute  (NCI)identifies factors such as income, employment, housing, transportation, education, access to healthy food, and access to healthcare as conditions that can affect health, well-being, quality of life, and health outcomes. NCI also notes that food, housing, and transportation insecurity can create barriers to cancer care and contribute to poorer health-related outcomes. 

That is a lot of information to communicate, understand, and act upon during a short conversation.

Communication Goes Both Ways

We sometimes talk about patient self-advocacy as though the responsibility belongs entirely to the patient. It does not.

Patients need to learn how to describe what they are experiencing, ask questions, and communicate what has changed. But healthcare providers also have to translate extraordinarily complicated medical information into language that a patient can understand and use, in a short amount of time.

That becomes particularly difficult when health literacy is limited, or when a healthcare system communicates in a way that is unnecessarily difficult to understand. AHRQ recommends a “universal precautions” approach to health literacy: simplify communication, confirm understanding, make healthcare easier to navigate, and support patients of all health-literacy levels.

A patient may not know the medical terminology for what they are experiencing. They may not know which symptom is important. They may misunderstand instructions or be embarrassed to admit that they do not understand them. AHRQ specifically cautions that asking “Do you understand?” is not enough; teach-back asks patients to explain the plan in their own words so the clinician can confirm that the explanation was clear.

On the other side of the conversation, healthcare professionals spend years learning a specialized language. Communicating that information accurately without relying on jargon is a different skill. AHRQ recommends plain language, active listening, open-ended questions, qualified interpreters when needed, and teach-back to improve understanding.

Both people may be trying their best and still leave the room without fully understanding one another.

That is why patience matters. And it is why time matters.

“Fine” Doesn’t Tell the Whole Story

Personally, I’ve lived with and adapted to multiple myeloma for more than a decade. If someone asks me how I’m doing, my instinct is often to say, “Great!”

Usually, I mean it! Life is full!

But “great!”, or even “pretty well” can coexist with fatigue, neuropathy, pain, poor sleep, treatment side effects, anxiety, changes in appetite, or a noticeable decline in what I am physically able to do.

A patient can truthfully say, “I’m doing fine,” while leaving out half the information necessary to describe how they are actually doing.

There is another problem: memory.

If my oncology appointments occur every four weeks, I am trying to summarize 27 days of life when I answer that question. What I feel on appointment day can influence how I remember the previous three weeks.

That is a difficult burden to place on memory.

Asking Better Questions

This is one reason patient-reported outcomes can be useful.

The U.S. Food and Drug Administration defines a patient-reported outcome (PRO) as a measurement that comes directly from the patient about the status of the patient’s health, without interpretation by a clinician or anyone else. The FDA notes that symptoms known most directly by the patient, such as pain severity or nausea, are appropriately captured through patient-reported measures.

Rather than relying exclusively on a broad question like “How are you feeling?”, validated patient-reported outcome measures can ask patients consistent, structured questions about particular aspects of their experience. FDA oncology guidance recognizes PRO measures as a way to collect patient-experience information, including how patients feel and function. 

CAPP is designed to incorporate established instruments that can help patients track areas such as symptoms, physical function, anxiety, depression, and quality of life over time.

But the purpose is not to replace conversation. It is to make the conversation better.

A questionnaire cannot understand a patient the way another human being can. It cannot replace clinical judgment, empathy, context, or the relationship between a patient and healthcare provider.

What it can potentially do is help both people arrive at the conversation with better information.

Instead of: “I’ve been pretty tired lately.”

A patient may be able to say: “I still have noticeable fatigue several days after treatment. My sleep also declined, and I stopped exercising for about a week. It improved somewhat before the next treatment cycle, but it never returned to where it was before.”

That’s a tough conversation.

Giving Patients a Better Voice

One of the reasons Cancer Active is building the Cancer Active Patient Portal is to help patients become better observers and communicators of their own experience.

CAPP cannot diagnose cancer. It cannot replace an oncologist. And it certainly is not a magic Star Trek wand.

What we hope it can become is a tool that helps patients collect important information while they are living it, recognize patterns over time, and communicate those patterns more clearly to the people helping care for them.

Good healthcare depends upon good information. And some of the most important information in cancer care exists only in the experience of the person living with cancer.

We have to give patients better tools to communicate and teach them to use them.

Kenny

Sources

1. Agency for Healthcare Research and Quality. Use the Teach-Back Method: Tool 5, Health Literacy Universal Precautions Toolkit, 3rd Edition. https://www.ahrq.gov/health-literacy/improve/precautions/tool5.html
2. National Cancer Institute. Definition of Social Determinants of Health. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/social-determinants-of-health
3. National Cancer Institute, Healthcare Delivery Research Program. Addressing Social Risks in Cancer Care. https://healthcaredelivery.cancer.gov/social-risks/
4. Agency for Healthcare Research and Quality. Health Literacy Universal Precautions Toolkit, 3rd Edition. https://www.ahrq.gov/health-literacy/improve/precautions/index.html
5. Agency for Healthcare Research and Quality. Communicate Clearly: Tool 4. https://www.ahrq.gov/health-literacy/improve/precautions/tool4.html
6. U.S. Food and Drug Administration. Project Patient Voice. https://www.fda.gov/about-fda/oncology-center-excellence/project-patient-voice
7. U.S. Food and Drug Administration. Core Patient-Reported Outcomes in Cancer Clinical Trials: Guidance for Industry. October 2024. https://www.fda.gov/regulatory-information/search-fda-guidance-documents/core-patient-reported-outcomes-cancer-clinical-trials