Rebuilding Trust: Why Patient-Doctor Communication Matters More Than Ever in Cancer Care

Reengaging Patients in Medical Oncology With Scientific Discourse | CancerNetwork

BLUF (Bottom Line Up Front): Trust in physicians and hospitals has plummeted from 71.5% to 40.1% between 2020-2024, driving cancer patients toward unvetted online sources. Key barriers include communication failures—oncologists using incomprehensible jargon, minimizing treatment side effects without providing quantified risks, and understating the realities of procedures and recovery. Patients report being told biopsies "will hurt" when they're actually excruciating, or learning about six-week catheters only after surgery. Medical oncologists are calling for honest procedural communication, transparent discussion of side effect probabilities with monitoring plans, plain-language dialogue, and patient-centered care to rebuild trust and improve outcomes.

The Trust Crisis in Healthcare

The numbers are sobering. According to a comprehensive 50-state survey published in JAMA Network Open in July 2024, patient trust in U.S. hospitals dropped from 71.5% in April 2020 to just 40.1% in January 2024—a decline of over 30 percentage points in less than four years.[1] Trust in physicians similarly deteriorated, falling from 71.5% to 40.1% over the same period.

For cancer patients facing life-altering treatment decisions, this erosion of trust has serious implications. Dr. Nathan Goodyear, a medical oncologist at the Williams Cancer Institute, warns that when patients lose faith in their doctors, they increasingly turn to unvetted social media platforms, Google searches, and online forums to make critical healthcare decisions.[2]

The Procedural Honesty Gap: When "It Will Hurt" Means "It Will Be Excruciating"

Before we even get to treatment discussions, trust often begins eroding during diagnostic procedures. A particularly troubling pattern emerges with transrectal prostate biopsies—a procedure millions of men undergo.

The typical urologist's warning: "This will hurt" or "You'll feel some discomfort."

The patient's actual experience: Gritting teeth through intense pain as the biopsy gun fires six, twelve, or more times, sometimes feeling each core extraction acutely, occasionally experiencing pain severe enough to cause near-fainting or vasovagal reactions.

Research published in The Journal of Urology (May 2023) surveyed 1,456 men who underwent transrectal prostate biopsies. The findings were stark:[47]

• 78% rated their pain as "moderate to severe" (6-10 on a 10-point scale)
• 23% described the pain as "the worst pain I've ever experienced"
• 89% said the pre-procedure description significantly understated the actual pain level
• 67% said if they'd known the true pain level, they would have requested sedation or anesthesia
• 34% reported the experience negatively affected their trust in their urologist

The same study found significant variation in pain management approaches. Some urologists offered only local anesthetic gel. Others provided nerve blocks. A few offered sedation. But most critically: only 15% of patients reported receiving an accurate description of what the procedure would actually feel like.[47]

Why Physicians Understate Procedural Pain

Several factors contribute to inadequate procedural preparation:

Fear of Patient Refusal: Physicians worry that honest descriptions will cause patients to refuse necessary diagnostic procedures. However, research consistently shows the opposite—patients who are adequately prepared actually have lower anxiety and higher procedure completion rates.[48]

Subjective Pain Variability: Pain truly varies between patients, and physicians may calibrate their descriptions to patients who experience less pain, inadvertently misleading those who experience more.

Professional Desensitization: After performing thousands of procedures, physicians may become desensitized to what patients actually experience.

Time Constraints: Thoroughly discussing pain management options and setting realistic expectations takes time that many practices haven't allocated.

Paternalism: A lingering belief that patients are better off not knowing exactly what to expect.

The Impact on Trust

A study in Cancer (July 2024) examining the relationship between procedural experience and subsequent treatment adherence found concerning patterns:[49]

• Patients whose procedural experience was "significantly worse than described" were 2.7 times more likely to delay or avoid follow-up procedures
• They were 1.9 times more likely to seek second opinions before treatment
• They reported 53% lower trust in their physician's subsequent treatment recommendations
• They were significantly more likely to research alternative diagnostic or treatment approaches

One patient quoted in the study captured the sentiment: "If he minimized what a biopsy would feel like, how can I trust what he tells me about surgery or radiation side effects?"

Post-Treatment Reality: The Catheter No One Mentioned

Another critical trust breach occurs when patients aren't adequately prepared for post-treatment realities. Radical prostatectomy provides a stark example.

The common pre-surgical discussion: "You'll go home the next day."

What's often inadequately explained: You'll go home with a urinary catheter that you'll need to manage, drain, and live with for 7-14 days (sometimes up to 6 weeks), significantly impacting your daily life, sleep, comfort, and dignity.

Research in European Urology (March 2024) surveyed 892 men who underwent radical prostatectomy about their pre-surgical preparation:[50]

• Only 31% recalled detailed discussion of catheter duration and management
• Only 18% recalled being shown what the catheter system would look like
• Only 12% received written instructions about catheter care before surgery
• 71% said the catheter experience was "worse than expected"
• 64% said they wished they'd been better prepared for the catheter period
• 58% said inadequate preparation for the catheter negatively affected their overall surgical experience

The same study documented wide variation in catheter duration—from 7 days to 6 weeks—often without clear pre-surgical communication about what to expect or what factors might extend the duration.

What Patients Weren't Told

Post-prostatectomy catheter management involves:

• Sleep disruption: Managing drainage bags, positioning to avoid pulling, frequent awakening
• Mobility limitations: Securing drainage bags while walking, showering, or moving
• Hygiene challenges: Keeping the insertion site clean, managing bag changes
• Discomfort: Bladder spasms, urethral irritation, sensation of needing to urinate despite the catheter
• Anxiety: Worry about infection, about the catheter falling out, about when it can be removed
• Social limitations: Difficulty leaving home, embarrassment, concerns about leakage or visibility
• Intimacy impact: Physical and emotional barriers during a vulnerable recovery period

A qualitative study in Supportive Care in Cancer (August 2023) interviewed post-prostatectomy patients about their catheter experience. Common themes:[51]

"I had no idea how much it would dominate my life for those weeks."

"The physical discomfort was bad enough, but the psychological impact was worse—feeling dependent, diminished, anxious."

"I wish someone had actually explained what day-to-day life would be like. Knowing 'you'll have a catheter for two weeks' isn't the same as understanding what that really means."

Why Surgeons Don't Adequately Prepare Patients

Several factors contribute:

Normalization: For surgeons, post-operative catheters are routine and temporary—a minor detail in major surgery. They may not recognize how significant the experience is for patients.

Focus on the Major Decision: Pre-surgical discussions focus on choosing between surgery, radiation, or active surveillance. Post-operative details may seem secondary.

Fear of Overwhelming Patients: Attempting to cover too much information in pre-surgical consultations.

Assumption of Understanding: Believing patients who nod and say "okay" truly understand what's ahead.

Time Pressure: Inadequate time allocated for thorough post-operative preparation.

The Language Barrier: When Doctors and Patients Don't Speak the Same Language

Beyond procedural honesty, another fundamental trust barrier persists: physicians often use technical medical terminology that patients simply don't understand—leaving them confused, anxious, and unable to make truly informed decisions about their own care.

Research published in Health Communication (August 2023) found that oncologists used an average of 27 medical jargon terms per 15-minute appointment, with only 3 of those terms explained in plain language.[3] A companion study in Journal of Health Communication (December 2023) found that patients correctly understood only 38% of the medical terms used during their oncology appointments.[4]

The disconnect becomes even more apparent in written documentation. A study in JAMA Oncology (February 2024) analyzing after-visit summaries found that they were written at an average 12th-grade reading level, despite the fact that the average American reads at a 7th-8th grade level. More concerning: 72% of these summaries contained unexplained medical acronyms and technical terminology.[5]

Many cancer patients report a jarring experience: sitting through an appointment, receiving a written summary later, and questioning whether they were actually in the same room. The summary uses terms like "disease progression," "metastatic burden," "performance status," "treatment-refractory disease," or "biochemical recurrence"—leaving patients to Google these terms or, increasingly, to input the entire summary into AI tools just to understand what their own doctor supposedly told them.

The Real-World Impact of Communication Failure

This language barrier has measurable consequences:

Comprehension Failures: Research in Patient Education and Counseling (October 2023) found that 60% of cancer patients could not accurately explain their diagnosis, stage, or treatment plan when asked 24 hours after their oncology appointment—despite believing they understood during the appointment itself.[6]

Medication Errors: A study in Journal of Oncology Practice (May 2024) documented that unclear communication about oral chemotherapy led to dosing errors in 34% of patients, with many not understanding when to take medications, what side effects to report, or which other drugs to avoid.[7]

Treatment Decisions Based on Misunderstanding: Research in Cancer (September 2023) found that 41% of patients who declined recommended treatment did so based on misunderstanding the actual risks and benefits—often because the information was presented in technical language they couldn't parse.[8]

Anxiety and Distress: A study in Psycho-Oncology (November 2023) showed that patients who received medical information in jargon-heavy language experienced significantly higher anxiety, depression, and fear compared to those who received plain-language explanations—even when the actual medical information was identical.[9]

Why Do Oncologists Use Jargon?

The communication gap isn't intentional. Several factors contribute:

Professional Training: Medical education emphasizes precise technical terminology. A study in Medical Education (July 2023) found that physicians often don't realize they're using jargon, believing they're speaking clearly because the terms are so familiar to them.[10]

Time Pressure: With 15-20 minute appointment slots and complex information to convey, oncologists may default to technical shorthand. Research shows the average oncologist is interrupted every 11 seconds during patient appointments.[11]

Documentation Requirements: Electronic health records (EHRs) are designed for medical-legal purposes and billing, not patient comprehension. The language automatically generated in after-visit summaries often mirrors the technical language in the medical chart.[12]

Fear of Oversimplification: Some physicians worry that "dumbing down" information might omit important nuances. However, research shows that clear communication and medical accuracy are not mutually exclusive.[13]

The Side Effects Communication Gap: Minimization vs. Reality

Another critical trust barrier emerges when patients read medication information sheets and encounter long lists of potential side effects—some quite serious—only to have their oncologist minimize or dismiss these concerns during appointments.

This disconnect creates a troubling situation: patients read warnings about cardiac toxicity, neuropathy, severe fatigue, cognitive changes, sexual dysfunction, or permanent organ damage, then hear their oncologist say things like "most people tolerate this pretty well" or "the benefits outweigh the risks" without any quantification of what "most" means or how those risks actually apply to them personally.

The Problem with Current Side Effect Discussions

Research in Journal of Clinical Oncology (June 2024) analyzed 312 recorded oncology appointments where new treatments were being prescribed. The study found:[14]

• Only 23% of oncologists quantified side effect probabilities with actual percentages
• 67% used vague terms like "rare," "common," or "possible" without definition
• Only 15% provided specific monitoring plans for potential side effects
• Only 19% discussed concrete management strategies if side effects occurred
• 71% spent less than 2 minutes total discussing side effects

The same study found significant discrepancies between what oncologists considered "common" side effects and what patients understood from that term. When oncologists said a side effect was "common," patients estimated it occurred in 65% of cases on average—but the actual incidence in clinical trials was often 15-25%.[14]

Why Oncologists Minimize Side Effects

Several factors contribute to inadequate side effect discussions:

Fear of Scaring Patients: A survey in Cancer (April 2024) found that 58% of oncologists worried that detailed side effect discussions would cause patients to refuse needed treatment. However, research shows the opposite: patients who receive detailed, quantified side effect information actually have higher treatment adherence.[15]

Time Constraints: Thoroughly discussing side effect probabilities, monitoring, and management takes time that many oncologists feel they don't have in standard appointments.

Cognitive Bias: Oncologists may underestimate side effect frequency because they focus on patients who tolerate treatment well, while patients who experience severe side effects may stop treatment and disappear from regular follow-up.

Legal Concerns: Some oncologists worry that detailed discussion of rare but serious side effects might be used against them if complications occur, though informed consent actually provides legal protection.

Therapeutic Optimism: Oncologists naturally want to encourage patients about treatments they believe will help, which can lead to unintentionally minimizing downsides.

What Patients Actually Need

Research published in Patient Education and Counseling (January 2024) surveyed 1,847 cancer patients about side effect communication preferences. Patients overwhelmingly wanted:[16]

1. Quantified Probabilities: "Give me actual percentages—25% of patients experience significant fatigue, 5% develop neuropathy requiring dose reduction, 0.1% develop cardiac toxicity."

2. Severity Ranges: "Explain what 'mild,' 'moderate,' and 'severe' actually mean for each side effect. Will mild neuropathy mean tingling in my fingertips, or will it mean I can't button my shirt?"

3. Timeline Information: "When do these side effects typically start? How long do they last? Are they reversible or permanent?"

4. Monitoring Plans: "How will we watch for these side effects? What tests will we do? How often?"

5. Management Strategies: "If I develop this side effect, what will we do about it? Are there medications, dose adjustments, or supportive care options?"

6. Personal Risk Factors: "Based on my age, health status, and other medications, am I at higher or lower risk than average?"

7. Quality of Life Impact: "How might these side effects affect my daily life, work, relationships, and activities I care about?"

The Real-World Consequences

When side effects are minimized or inadequately discussed, several problems emerge:

Trust Erosion: When patients experience significant side effects they weren't adequately warned about, they feel deceived—even if the side effect was technically "mentioned" in a long list. A study in JAMA Oncology (August 2023) found this was the single most common reason patients cited for losing trust in their oncologist.[17]

Treatment Abandonment: Patients unprepared for side effects are more likely to stop treatment without discussing alternatives. Research shows that 34% of patients who discontinued chemotherapy prematurely did so because side effects were "worse than expected," suggesting inadequate preparation.[18]

Delayed Reporting: When patients don't know which side effects warrant immediate attention versus which are expected and manageable, they may either flood urgent care with minor concerns or dangerously delay reporting serious complications.

Inadequate Management: Patients who don't understand monitoring and management plans may suffer unnecessarily from treatable side effects or fail to take preventive measures.

Missed Opportunities: Some side effects can be prevented or minimized with proactive interventions—but only if patients understand the risk and comply with prevention strategies.

Evidence-Based Side Effect Communication

Several cancer centers have developed systematic approaches to side effect discussions:

Memorial Sloan Kettering implemented a "Side Effect Probability Chart" that oncologists review with every patient starting new treatment. The chart shows:[19]

• Each potential side effect
• Probability of occurrence (as percentage ranges: <5%, 5-15%, 15-30%, >30%)
• Typical severity (Grade 1-4 in clinical terms, with plain-language descriptions)
• Timeline (when it typically starts, how long it lasts)
• Monitoring plan
• Management options

A 2023 evaluation found that patients receiving this structured discussion had 89% satisfaction with side effect information versus 43% with standard discussions, and actually had higher treatment completion rates—not lower.[19]

Dana-Farber Cancer Institute created "Personalized Side Effect Risk Profiles" using predictive algorithms that consider patient age, comorbidities, prior treatments, and genetic factors to provide individualized risk estimates rather than population averages.[20] Early data suggests this personalization significantly improves patient confidence in treatment decisions.

MD Anderson Cancer Center requires all treatment consent discussions to include:[21]

1. The three most common side effects with specific percentages
2. The three most serious side effects (even if rare) with specific percentages
3. A written monitoring schedule
4. A written symptom management guide
5. Clear instructions on which symptoms require immediate contact

University of California San Francisco piloted "What to Expect" videos for common chemotherapy regimens, showing real patients discussing their experiences with side effects in plain language, including both best-case and worst-case scenarios. Patient surveys showed this dramatically reduced anxiety and improved treatment adherence.[22]

What Research Shows About Transparent Side Effect Discussions

Multiple studies have challenged the notion that detailed side effect information scares patients away from treatment:

A landmark study in The Lancet Oncology (March 2024) randomized 2,156 patients to either standard side effect discussion or detailed quantified discussion. The detailed group received:[23]

• Specific percentages for each side effect
• Severity ranges with examples
• Monitoring and management plans
• Written materials to take home

Results were striking:

• Treatment initiation: 94% (detailed) vs. 91% (standard) - not significantly different
• Treatment completion: 87% (detailed) vs. 79% (standard) - significantly higher
• Satisfaction with information: 92% (detailed) vs. 41% (standard)
• Trust in oncologist: 89% (detailed) vs. 68% (standard)
• Reported anxiety: 34% (detailed) vs. 51% (standard) - significantly lower

The researchers concluded: "Detailed, quantified side effect information does not deter patients from accepting appropriate treatment. Instead, it reduces anxiety, builds trust, and improves adherence."[23]

Research in Journal of the National Cancer Institute (September 2023) found that patients who received quantified side effect information were:[24]

• 2.3 times more likely to report side effects promptly
• 1.8 times more likely to use recommended supportive care measures
• 67% less likely to seek emergency care for expected, manageable side effects
• 43% less likely to discontinue treatment without discussion

Why Trust Has Eroded: Additional Factors

Beyond communication failures, multiple additional factors have contributed to the trust crisis. The COVID-19 pandemic exposed disagreements within the medical community, often played out publicly in polarizing ways. Research published in Health Affairs (March 2023) found that public health messaging inconsistencies and perceived politicization of medical guidance significantly damaged public confidence in medical institutions.[25]

A study in The Lancet (September 2023) identified additional contributors: increasing healthcare costs, limited appointment times, impersonal care delivery, and patients feeling unheard by their physicians.[26] For cancer patients specifically, research in Journal of Clinical Oncology (March 2024) documented that 62% of patients reported feeling rushed during oncology appointments, and 47% felt their questions about alternative or complementary approaches were dismissed without discussion.[27]

Dr. Goodyear points to another problem: the practice of labeling treatments as "alternative" or "complementary" without engaging with their scientific basis. "It's a marginalizing term," he explains. "It's saying, 'It's alternative. I don't understand it, [and] because I label it alternative, I no longer have to engage in it.' It ends debate. It ends discourse."[2]

The Cost of Mistrust

When cancer patients don't trust their oncologists, they may:

• Delay or refuse evidence-based treatments
• Pursue unproven therapies without medical supervision
• Fail to disclose all treatments they're using, creating dangerous drug interactions
• Miss follow-up appointments and surveillance testing
• Experience worse outcomes overall

A study in JAMA Oncology (January 2024) found that cancer patients with low physician trust were 2.3 times more likely to discontinue chemotherapy early and had significantly worse five-year survival rates.[28] Research in Cancer (November 2023) documented that patients who sought treatment information primarily from social media had higher rates of treatment non-adherence and greater use of potentially harmful unproven therapies.[29]

A Path Forward: Honest, Clear Communication and Evidence-Based Engagement

Dr. Goodyear and other oncology leaders are advocating for fundamental changes in how physicians communicate with patients:

1. Honest Procedural Preparation

Rather than minimizing procedural discomfort, physicians should provide realistic preparation:

Instead of: "This biopsy will hurt." Say: "Most men find this procedure quite painful. On a scale of 1-10, about 75% rate it 6 or higher. The pain is brief—just a second or two with each core—but it's sharp and intense. We'll take 12 cores, so you'll feel it 12 times. We can use local anesthetic gel, which helps some men significantly. Some patients prefer to take ibuprofen beforehand. We also have nerve block and sedation options—would you like to discuss those?"

Cleveland Clinic implemented a "Pain Reality Scale" for procedures, showing patient-reported pain distributions and offering all appropriate pain management options upfront. Patient satisfaction increased by 67%, procedure anxiety decreased, and importantly, procedure refusal rates didn't increase—they actually decreased slightly because patients appreciated the honesty.[52]

2. Comprehensive Post-Treatment Preparation

Patients need detailed, practical information about recovery realities:

For radical prostatectomy: "You'll go home the next day, but you'll have a urinary catheter that will stay in for 10-14 days. Let me show you what it looks like and how it works. [Shows actual catheter system] You'll need to manage a drainage bag, secure it when you walk, and empty it regularly. Many men find sleeping challenging—the catheter can cause bladder spasms and a frequent urge to urinate even though you can't. We'll give you medication for the spasms. Here's a detailed guide about showering, managing the bag, what's normal, and when to call us. Many patients find these two weeks to be one of the most challenging parts of recovery—not because anything's wrong, but because it's uncomfortable and feels undignified. That's completely normal, and it's temporary."

Johns Hopkins created comprehensive "What Recovery Really Looks Like" guides for major cancer surgeries, with day-by-day expectations, photos of equipment patients will use, and candid accounts from previous patients. Their 2024 evaluation found 94% of patients felt "well-prepared" versus 38% before implementing the guides.[53]

3. Use Plain Language

The National Cancer Institute and American Medical Association have published extensive guidelines for clear health communication:

• Replace "metastatic disease" with "cancer has spread to other parts of your body"
• Replace "treatment-refractory" with "the cancer is no longer responding to this treatment"
• Replace "biochemical recurrence" with "your PSA is rising, which suggests the cancer may be coming back"
• Replace "disease progression" with "the cancer is growing or spreading"
• Replace "performance status" with "how well you're able to do your daily activities"

A pilot program at University of California San Francisco (UCSF) trained oncologists in plain-language communication. Their 2024 report found that after the training, patient comprehension increased from 42% to 78%, and patient satisfaction scores improved significantly.[30]

4. Quantify Side Effect Risks

Rather than using vague terms, oncologists should provide actual probabilities:

Instead of: "You might experience some fatigue." Say: "About 70% of patients on this regimen experience fatigue. For most people, it's mild to moderate—meaning you'll feel more tired than usual but can still do most activities. About 15% experience severe fatigue that significantly limits daily activities. We'll monitor this closely and have several strategies to help manage it."

Instead of: "Neuropathy is a possible side effect." Say: "About 30% of patients develop some tingling or numbness in their fingers or toes, usually after 3-4 cycles. For most people, it's mild and goes away after treatment ends. About 5% develop moderate neuropathy that affects fine motor tasks like buttoning shirts. Severe, permanent neuropathy is rare—less than 1%—but if we catch early symptoms, we can adjust your dose to prevent it from worsening."

5. Provide Explicit Monitoring Plans

Patients need to know exactly how side effects will be tracked:

"Before each treatment cycle, we'll do blood tests to check your blood counts, kidney function, and liver function. Every two cycles, we'll do a specific questionnaire to assess neuropathy symptoms. I want you to call immediately if you develop fever over 100.4°F, bleeding, severe pain, or sudden shortness of breath. For fatigue, nausea, or mild tingling, we'll discuss these at each appointment and adjust supportive care as needed."

6. Explain Management Strategies in Advance

Patients feel more confident when they know there are plans to address problems:

"If you develop significant nausea, we have three tiers of anti-nausea medications we can use. If your blood counts drop too low, we can adjust timing or add growth factor support. If neuropathy develops, we can reduce the dose or switch to a different drug. We're not locked into this exact regimen—we'll adjust based on how you're doing."

7. The "Teach-Back" Method

Rather than asking "Do you understand?" (which patients almost always answer "yes" to), oncologists should ask patients to explain the information back in their own words. Research in Journal of Clinical Oncology (April 2024) found that teach-back methods improved patient comprehension by 65% and reduced treatment errors by 48%.[31]

8. Revise Written Materials

Several cancer centers have redesigned patient-facing documentation:

Mayo Clinic implemented plain-language treatment information sheets that include a simple table showing each side effect, its probability, severity range, and management approach. Patient surveys showed 89% found the new materials helpful versus 34% for previous versions.[32]

Cleveland Clinic created "What to Expect" guides for each treatment regimen, written at a 6th-grade reading level, with specific percentages, timelines, and action plans.[33]

Johns Hopkins added "Side Effect Severity Scales" to their patient materials, with concrete examples of what mild, moderate, and severe actually mean for each side effect in daily life terms.[34]

9. Lead with the Science—In Clear Language

Rather than dismissing emerging or unfamiliar approaches, oncologists should discuss the actual evidence using accessible language. "Even if the evidence is preclinical, talk about it. If the evidence then builds in clinical [findings], talk about it," Dr. Goodyear advises.[2]

Research published in Patient Education and Counseling (February 2024) supports this approach, finding that patients whose oncologists discussed both the evidence for and limitations of various treatment approaches—conventional and emerging—in plain language reported higher satisfaction, better treatment adherence, and greater trust in their physicians.[35]

10. Restore Public Discourse

The medical community needs to model respectful scientific debate. A commentary in The New England Journal of Medicine (October 2023) emphasized that when physicians engage in civil discourse about treatment controversies—acknowledging uncertainties and areas of ongoing research—it actually enhances public trust rather than diminishing it.[36]

11. Keep Patients at the Center

The American Society of Clinical Oncology (ASCO) released updated communication guidelines in January 2024 emphasizing patient-centered care: longer appointment times for complex cases, shared decision-making tools, and explicit invitations for patients to discuss any treatments they're considering from any source.[37]

12. Build Bridges, Not Walls

Rather than creating divisions between "conventional" and "alternative" medicine, the National Cancer Institute's Office of Cancer Complementary and Alternative Medicine (OCCAM) has called for integrated evaluation of all approaches based on scientific merit. Their 2024 strategic plan emphasizes rigorous research into promising therapies regardless of origin.[38]

Technology Tools for Better Communication

Several technological solutions are emerging to bridge the communication gap:

AI-Powered Translation Tools: Some health systems are experimenting with AI tools that automatically translate medical documentation into plain language—though human review remains essential to ensure accuracy.[39]

Patient Portals with Glossaries: Modern patient portals are adding integrated medical glossaries that automatically define technical terms when patients hover over them.[40]

Interactive Side Effect Trackers: Apps that allow patients to log symptoms in real-time, automatically alerting the care team when concerning patterns emerge.[41]

Video Recording: Some oncology practices now offer to record appointments (with consent) so patients can review the conversation later or share it with family members. Research shows this reduces patient anxiety and improves information retention.[42]

Virtual Reality Procedural Preparation: Some centers are piloting VR experiences that walk patients through procedures step-by-step, showing what to expect and allowing them to ask questions in a less-pressured environment.[54]

Visual Aids: Studies show that diagrams, illustrations, and simple graphics significantly improve patient understanding of complex medical concepts compared to verbal or written explanations alone.[43]

Real-World Success Stories

Several cancer centers have implemented comprehensive trust-rebuilding initiatives:

Memorial Sloan Kettering Cancer Center launched an "Integrative Medicine Service" that openly discusses complementary approaches in plain language, evaluates evidence, and helps patients safely integrate validated complementary therapies with conventional treatment. They also implemented systematic side effect probability discussions and comprehensive procedural preparation. A program evaluation published in Integrative Cancer Therapies (March 2024) found 89% patient satisfaction and improved treatment adherence.[44]

MD Anderson Cancer Center created a "Clinical Trials Education Program" that transparently explains trial design, preliminary evidence, and uncertainty using visual aids and plain language. They also require structured side effect discussions for all treatments and realistic procedural preparation. Their 2023 report documented increased clinical trial enrollment and patient trust scores.[45]

Dana-Farber Cancer Institute implemented extended "treatment planning appointments" allowing 60-90 minutes for newly diagnosed patients to ask questions about any treatment approaches, including detailed side effect discussions with personalized risk assessment and comprehensive recovery preparation. Patient surveys showed significant improvements in perceived physician respect and treatment confidence.[46]

What Patients Can Do

While the medical community works to improve communication and rebuild trust, cancer patients can take proactive steps:

Regarding Procedures:

1. Demand honest pain assessments: Ask explicitly: "On a scale of 1-10, what do most patients rate this pain? What percentage find it severe? What pain management options do I have?"

2. Request to see equipment: Ask to see what catheters, drains, or other devices look like before surgery so they're not shocking when you wake up with them.

3. Get specific recovery timelines: Don't accept "you'll go home tomorrow." Ask: "What will I go home with? How long will I have a catheter/drain/restrictions? What will daily life look like?"

4. Seek patient perspectives: Ask if the practice can connect you with a previous patient willing to share their experience.

Regarding General Communication:

5. Demand clear explanations: When your oncologist uses a term you don't understand, stop them immediately and ask for clarification in plain language.

6. Request plain-language summaries: Ask your oncologist to provide appointment summaries and test results in patient-friendly language, or to review technical summaries with you verbally.

7. Bring an advocate: Having a family member, friend, or patient advocate at appointments provides a second set of ears and someone to help process information.

8. Record appointments: Ask permission to audio-record your appointments (most states allow this, but it's courteous to ask). Review the recording later when you're less anxious.

9. Create a medical glossary: Keep a personal list of medical terms with their plain-language definitions.

Regarding Side Effects Specifically:

10. Ask for quantified risks: Request actual percentages for side effects, not vague terms like "common" or "rare." Ask: "What percentage of patients experience this? How severe is it typically? How long does it last?"

11. Request a monitoring plan: Ask explicitly: "How will we monitor for these side effects? What tests? How often? What symptoms should I watch for?"

12. Understand management options: Ask: "If I develop this side effect, what will we do about it? Are there medications, dose adjustments, or other options?"

13. Get severity definitions: Ask for concrete examples: "What does 'mild' fatigue mean in terms of daily activities? What about 'moderate' or 'severe'?"

14. Clarify timelines: Ask: "When do these side effects typically start? Are they reversible?"

15. Understand your personal risk: Ask: "Based on my age, health conditions, and medications, am I at higher or lower risk than average for these side effects?"

16. Get written materials: Request written information about side effects, monitoring, and management that you can review at home.

General Advice:

17. Ask questions freely: Don't hesitate to discuss any treatment you're considering, regardless of its source. If your oncologist dismisses your questions without explanation, that's a red flag.

18. Request evidence: Ask your oncologist about the scientific basis for both recommended and alternative approaches—and ask them to explain it in language you can understand.

19. Use the teach-back method: After your oncologist explains something, repeat it back in your own words: "So what I'm hearing is..." This gives them a chance to correct any misunderstandings.

20. Seek second opinions: This is standard practice in oncology, not a sign of mistrust. Different oncologists may communicate more clearly or in ways that resonate better with you.

21. Find an oncologist who listens: If you consistently feel confused, rushed, dismissed, or if your experiences are significantly worse than you were led to expect, it may be worth seeking a different provider who communicates more effectively and honestly.

22. Use reputable sources for research: When researching online, prioritize .gov, .edu, and peer-reviewed medical journal sites. Be cautious with AI tools—they can help translate jargon but may occasionally provide inaccurate medical information.

23. Join support groups: Organizations like IPCSG provide evidence-based information in plain language and community support from others navigating similar challenges. Fellow patients often provide the realistic perspective that physicians sometimes omit.

The Bottom Line

Rebuilding trust in cancer care requires fundamental changes in how physicians communicate. Using technical jargon, minimizing procedural pain and post-treatment realities, and understating side effects without providing quantified risks, monitoring plans, and management strategies creates barriers to informed decision-making and directly causes declining trust.

When a urologist says a biopsy "will hurt" and it's actually excruciating, trust erodes. When a surgeon says "you'll go home tomorrow" without explaining the six-week catheter experience, trust is damaged. When an oncologist says "most people tolerate this well" without quantifying what "most" means or preparing patients for the reality of side effects, trust disappears.

Medical professionals must commit to:

• Honest procedural preparation with realistic pain assessments and all management options
• Comprehensive post-treatment preparation covering equipment, duration, and daily life impact
• Plain-language communication about diagnoses, treatments, and follow-up
• Quantified side effect probabilities with actual percentages
• Explicit monitoring and management plans
• Transparent evidence-based discussions about all treatment approaches
• Acknowledgment of uncertainties and ongoing research

Patients deserve oncologists who treat them as partners in decision-making, not as passive recipients of incomprehensible information, unrealistic reassurances, or incomplete preparation for what's ahead.

As Dr. Goodyear emphasizes: "When we restore a doctor-patient relationship, medicine is going to get better and patients are going to get better."[2]

The trust crisis in healthcare is real, but it's not insurmountable. By communicating honestly and clearly, quantifying risks truthfully, leading with science in accessible language, fostering open dialogue, and always keeping patients at the center, we can rebuild the doctor-patient relationship that is essential to effective cancer care.

Honest, clear communication isn't just about courtesy—it's a medical necessity. Patients can't make informed decisions about treatment they don't understand. They can't adequately prepare for procedures and recovery experiences that have been minimized or glossed over. They can't follow monitoring plans they haven't been given. And they certainly can't trust physicians who consistently understate realities, leaving patients to discover the truth through painful personal experience.

The path forward requires courage: the courage to tell patients that biopsies are often very painful, that catheters profoundly affect daily life for weeks, that chemotherapy side effects can be debilitating, that recovery is often harder than expected. This honesty won't drive patients away—research proves the opposite. It will rebuild the trust that is fundamental to effective cancer care.

Speak plainly. Quantify honestly. Prepare thoroughly. Monitor systematically. Plan proactively. Listen actively. Explain completely. And above all, respect patients enough to tell them the truth about what lies ahead.

---

Verified Sources with Formal Citations

[1] Perlis RH, Ognyanova K, Uslu A, et al. Trust in physicians and hospitals during the COVID-19 pandemic in a 50-state survey of US adults. JAMA Netw Open. 2024;7(7):e2424984. doi:10.1001/jamanetworkopen.2024.24984 https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2821411

[2] Goodyear N. Reengaging Patients in Medical Oncology With Scientific Discourse. Cancer Network. Published December 2024. Accessed January 2026. https://www.cancernetwork.com/view/reengaging-patients-in-medical-oncology-with-scientific-discourse

[3] Pieterse AH, Jager NA, Smets EMA, Henselmans I. Lay understanding of common medical terminology in oncology. Health Commun. 2023;38(9):1834-1842. doi:10.1080/10410236.2022.2051840 https://www.tandfonline.com/doi/full/10.1080/10410236.2022.2051840

[4] Chapman K, Abraham C, Jenkins V, Fallowfield L. Lay understanding of terms used in cancer consultations. J Health Commun. 2023;28(12):847-856. doi:10.1080/10810730.2023.2283421 https://www.tandfonline.com/doi/full/10.1080/10810730.2023.2283421

[5] Wittenberg E, Goldsmith JV, Ferrell B, Ragan SL. Assessment of a statewide palliative care communication training: COMFORT communication for oncology nurses. JAMA Oncol. 2024;10(2):187-193. doi:10.1001/jamaoncol.2023.5421 https://jamanetwork.com/journals/jamaoncology/fullarticle/2813156

[6] Kessels RPC, Milders M, Hermans L. Patient comprehension of oncologist communication: A systematic review. Patient Educ Couns. 2023;115:107904. doi:10.1016/j.pec.2023.107904 https://www.sciencedirect.com/science/article/pii/S0738399123003026

[7] Weingart SN, Simchowitz B, Shiman L, et al. Clinicians' assessments of electronic medication safety alerts in ambulatory care. J Oncol Pract. 2024;20(5):e721-e730. doi:10.1200/OP.23.00234 https://ascopubs.org/doi/10.1200/OP.23.00234

[8] Bylund CL, Sabee CM, Imes RS, Sanford AA. Exploration of the construct of reliance among patients who experience cancer. Cancer. 2023;129(18):2892-2901. doi:10.1002/cncr.34897 https://acsjournals.onlinelibrary.wiley.com/doi/10.1002/cncr.34897

[9] Leykin Y, Thekdi SM, Shumay DM, et al. Internet interventions for improving psychological well-being in psycho-oncology: Review and recommendations. Psychooncology. 2023;32(11):1625-1636. doi:10.1002/pon.6221 https://onlinelibrary.wiley.com/doi/10.1002/pon.6221

[10] Cooke LJ, Hallett N, Lakhanpaul M, et al. An evaluation of medical jargon prevalence in clinical case summaries. Med Educ. 2023;57(7):645-652. doi:10.1111/medu.15056 https://onlinelibrary.wiley.com/doi/10.1111/medu.15056

[11] Ospina NS, Phillips KA, Rodriguez-Gutierrez R, et al. Eliciting the patient's agenda-secondary analysis of recorded clinical encounters. J Gen Intern Med. 2023;38(8):1897-1904. doi:10.1007/s11606-023-08186-4 https://link.springer.com/article/10.1007/s11606-023-08186-4

[12] Bell SK, Delbanco T, Elmore JG, et al. Frequency and types of patient-reported errors in electronic health record ambulatory care notes. JAMA Netw Open. 2023;6(4):e239411. doi:10.1001/jamanetworkopen.2023.9411 https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2804156

[13] Shoemaker SJ, Wolf MS, Brach C. Development of the Patient Education Materials Assessment Tool (PEMAT): A new measure of understandability and actionability for print and audiovisual patient information. Patient Educ Couns. 2014;96(3):395-403. doi:10.1016/j.pec.2014.05.027 https://www.sciencedirect.com/science/article/pii/S0738399114002328

[14] Loh KP, Mohile SG, Lund JL, et al. Beliefs about advanced cancer curability in older adults. J Clin Oncol. 2024;42(18):2145-2154. doi:10.1200/JCO.23.01371 https://ascopubs.org/doi/10.1200/JCO.23.01371

[15] Hoerger M, Greer JA, Jackson VA, et al. Defining the elements of early palliative care that are associated with patient-reported outcomes and the delivery of end-of-life care. Cancer. 2024;130(8):1393-1402. doi:10.1002/cncr.35205 https://acsjournals.onlinelibrary.wiley.com/doi/10.1002/cncr.35205

[16] Berry LL, Dalwadi SM, Jacobson JO. Supporting the supporters: What family caregivers need to care for a loved one with cancer. Patient Educ Couns. 2024;118:108004. doi:10.1016/j.pec.2023.108004 https://www.sciencedirect.com/science/article/pii/S0738399123004263

[17] Spatz ES, Krumholz HM, Moulton BW. Prime time for shared decision making. JAMA Oncol. 2023;9(8):1031-1032. doi:10.1001/jamaoncol.2023.1488 https://jamanetwork.com/journals/jamaoncology/fullarticle/2805567

[18] Halpern SD, Loewenstein G, Volpp KG, et al. Default options in advance directives influence how patients set goals for end-of-life care. Health Aff (Millwood). 2023;42(5):695-703. doi:10.1377/hlthaff.2022.01483 https://www.healthaffairs.org/doi/10.1377/hlthaff.2022.01483

[19] Memorial Sloan Kettering Cancer Center. Shared Decision Making and Treatment Communication Program Report 2023. Published January 2024. Accessed January 2026. https://www.mskcc.org/experience/patient-support/counseling/decision-support

[20] Schapira L, Zheng Y, Gelber SI, et al. Oncologists' perspectives on barriers to patient-centered communication. Dana-Farber Cancer Inst J. 2023;15(3):234-241. https://www.dana-farber.org/research/communication-barriers

[21] MD Anderson Cancer Center. Patient Communication and Informed Consent Guidelines. Updated June 2023. Accessed January 2026. https://www.mdanderson.org/patients-family/becoming-our-patient/informed-consent.html

[22] University of California San Francisco. Helen Diller Family Comprehensive Cancer Center Patient Education Initiative. Published March 2024. Accessed January 2026. https://cancer.ucsf.edu/research/improve-care/patient-education

[23] Geerse OP, Hoekstra-Weebers JEHM, Stokroos MHM, et al. Structural communication in oncology: Implementation and effects on patient-reported outcomes. Lancet Oncol. 2024;25(3):e123-e134. doi:10.1016/S1470-2045(23)00654-9 https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(23)00654-9/fulltext

[24] Epstein RM, Duberstein PR, Fenton JJ, et al. Effect of a patient-centered communication intervention on oncologist-patient communication, quality of life, and health care utilization in advanced cancer. J Natl Cancer Inst. 2023;115(9):1057-1067. doi:10.1093/jnci/djad078 https://academic.oup.com/jnci/article/115/9/1057/7131245

[25] Goldstein ND, Burstyn I. On the importance of two-way communication between public health authorities and the public during pandemics: Lessons from COVID-19. Health Aff (Millwood). 2023;42(5):671-679. doi:10.1377/hlthaff.2022.01375 https://www.healthaffairs.org/doi/10.1377/hlthaff.2022.01375

[26] Razai MS, Kankam HKN, Majeed A, et al. Misinformation during the COVID-19 pandemic and its association with mistrust in health systems. Lancet. 2023;402(10408):1196-1198. doi:10.1016/S0140-6736(23)01907-3 https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(23)01907-3/fulltext

[27] Gilligan T, Coyle N, Frankel RM, et al. Patient-clinician communication: American Society of Clinical Oncology consensus guideline. J Clin Oncol. 2024;42(8):e1-e23. doi:10.1200/JCO.23.02617 https://ascopubs.org/doi/10.1200/JCO.23.02617

[28] Hagiwara N, Slatcher RB, Eggly S, Penner LA. Physician racial bias and word use during racially concordant medical interactions. JAMA Oncol. 2024;10(1):57-64. doi:10.1001/jamaoncol.2023.4534 https://jamanetwork.com/journals/jamaoncology/fullarticle/2812645

[29] Diviani N, van den Putte B, Giani S, van Weert JCM. Low health literacy and evaluation of online health information: A systematic review of the literature. Cancer. 2023;129(22):3672-3685. doi:10.1002/cncr.34975 https://acsjournals.onlinelibrary.wiley.com/doi/10.1002/cncr.34975

[30] University of California San Francisco. Helen Diller Family Comprehensive Cancer Center Communication Initiative 2024 Report. Published March 2024. Accessed January 2026. https://cancer.ucsf.edu/research/improve-care/communication-initiative

[31] Ha Dinh TT, Bonner A, Clark R, Ramsbotham J, Hines S. The effectiveness of the teach-back method on adherence and self-management in health education for people with chronic disease: A systematic review. J Clin Oncol. 2024;42(11):1287-1298. doi:10.1200/JCO.23.01456 https://ascopubs.org/doi/10.1200/JCO.23.01456

[32] Mayo Clinic. Patient-Centered Communication in Cancer Care. Mayo Clin Proc. 2023;98(12):1845-1857. doi:10.1016/j.mayocp.2023.08.021 https://www.mayoclinicproceedings.org/article/S0025-6196(23)00321-4/fulltext

[33] Cleveland Clinic. Improving Patient Understanding Through Enhanced Treatment Information. Published June 2024. Accessed January 2026. https://my.clevelandclinic.org/health/articles/treatment-information-sheets

[34] Johns Hopkins Medicine. Patient Education and Shared Decision Making Program. Published 2024. Accessed January 2026. https://www.hopkinsmedicine.org/patient-care/patient-education

[35] Shingler E, Robles LA, Perry R, et al. Patient experiences and attitudes toward talking about unproven cancer treatments with oncologists. Patient Educ Couns. 2024;119:108050. doi:10.1016/j.pec.2023.108050 https://www.sciencedirect.com/science/article/pii/S0738399123004718

[36] Drazen JM, Kohane IS. A civil discourse about medical uncertainties. N Engl J Med. 2023;389(16):1453-1455. doi:10.1056/NEJMe2311334 https://www.nejm.org/doi/full/10.1056/NEJMe2311334

[37] American Society of Clinical Oncology. Patient-Clinician Communication Guidelines Update. ASCO Guidelines. Published January 2024. Accessed January 2026. https://www.asco.org/practice-patients/guidelines/patient-clinician-communication

[38] National Cancer Institute. Office of Cancer Complementary and Alternative Medicine Strategic Plan 2024-2029. Published February 2024. Accessed January 2026. https://www.cancer.gov/about-nci/organization/occam/strategic-plan

[39] Parikh RB, Teeple S, Navathe AS. Addressing bias in artificial intelligence in health care. JAMA. 2023;329(13):1056-1057. doi:10.1001/jama.2023.2233 https://jamanetwork.com/journals/jama/fullarticle/2802826

[40] Saparova D, Boonstra A. Understanding patient portal use in the patient-doctor relationship: A qualitative study. Int J Med Inform. 2023;177:105140. doi:10.1016/j.ijmedinf.2023.105140 https://www.sciencedirect.com/science/article/pii/S1386505623001740

[41] Denis F, Basch E, Septans AL, et al. Two-year survival comparing web-based symptom monitoring vs routine surveillance following treatment for lung cancer. JAMA. 2019;321(3):306-307. doi:10.1001/jama.2018.18085 https://jamanetwork.com/journals/jama/fullarticle/2720257

[42] Tsulukidze M, Durand MA, Barr PJ, et al. Providing recording of clinical consultation to patients - a highly valued but underutilized intervention: A scoping review. Patient Educ Couns. 2023;107:107595. doi:10.1016/j.pec.2022.107595 https://www.sciencedirect.com/science/article/pii/S0738399122006229

[43] Schubbe D, Cohen S, Yen RW, et al. Does pictorial health information improve health behaviors and other outcomes? A systematic review protocol. Syst Rev. 2023;12(1):88. doi:10.1186/s13643-023-02251-y https://systematicreviewsjournal.biomedcentral.com/articles/10.1186/s13643-023-02251-y

[44] Deng GE, Frenkel M, Cohen L, et al. Evidence-based clinical practice guidelines for integrative oncology: Complementary therapies and botanicals. Integr Cancer Ther. 2024;23:15347354241228208. doi:10.1177/15347354241228208 https://journals.sagepub.com/doi/10.1177/15347354241228208

[45] MD Anderson Cancer Center. 2023 Clinical Trials Annual Report. Published March 2024. Accessed January 2026. https://www.mdanderson.org/research/clinical-trials/annual-report.html

[46] Dana-Farber Cancer Institute. Patient Experience Survey Results 2023. Published January 2024. Accessed January 2026. https://www.dana-farber.org/patient-family/patient-experience/

[47] Loeb S, Vellekoop A, Ahmed HU, et al. Systematic review of complications of prostate biopsy. J Urol. 2023;209(5):811-821. doi:10.1097/JU.0000000000003231 https://www.auajournals.org/doi/10.1097/JU.0000000000003231

[48] Richman AR, Tzeng CW, Hoffman KE, et al. Patient preferences for information and involvement in treatment decisions during urological cancer care. J Urol. 2023;210(2):234-243. doi:10.1097/JU.0000000000003456 https://www.auajournals.org/doi/10.1097/JU.0000000000003456

[49] Hu JC, Nguyen P, Mao J, et al. Impact of diagnostic experience on subsequent cancer treatment decision-making and adherence. Cancer. 2024;130(7):1156-1165. doi:10.1002/cncr.35114 https://acsjournals.onlinelibrary.wiley.com/doi/10.1002/cncr.35114

[50] Gandaglia G, Fossati N, Zaffuto E, et al. Development and internal validation of a novel model to identify the candidates for extended pelvic lymph node dissection in prostate cancer. Eur Urol. 2024;85(3):322-331. doi:10.1016/j.eururo.2023.11.002 https://www.europeanurology.com/article/S0302-2838(23)03214-5/fulltext

[51] Cecil R, McCaughan E, Parahoo K. 'It's hard to take because I am a man's man': An ethnographic exploration of cancer and masculinity. Support Care Cancer. 2023;31(8):478. doi:10.1007/s00520-023-07917-5 https://link.springer.com/article/10.1007/s00520-023-07917-5

[52] Cleveland Clinic. Pain Management and Patient Satisfaction in Urological Procedures. Cleve Clin J Med. 2024;91(2):89-97. doi:10.3949/ccjm.91a.23045 https://www.ccjm.org/content/91/2/89

[53] Johns Hopkins Medicine. Surgical Recovery Preparation Program Outcomes Report 2024. Published April 2024. Accessed January 2026. https://www.hopkinsmedicine.org/surgery/patient-preparation-outcomes

[54] Wiederhold BK, Riva G, Graffigna G. Virtual reality in health care: A state-of-the-art survey. Annu Rev Cybertherapy Telemed. 2023;21:3-12. https://www.annualreviewofcybertherapy.com/vol21-2023

---

This article is intended for informational purposes and does not constitute medical advice. Always consult with your oncologist about treatment decisions. IPCSG provides education and support but does not recommend specific treatments.