Gilberto Lopes, Chief of Division of Medical Oncology at Sylvester Comprehensive Cancer Center, shared on LinkedIn:
“Psychological Safety Is Part of Cancer Treatment
Allison Sweet Grant recently wrote in The New York Times about something many physicians probably recognize but do not discuss enough: patients sometimes try to become the ‘perfect patient.’
They apologize for pain. They minimize symptoms. They say they are doing fine when they are not. They avoid disagreement because they worry that being demanding, skeptical or difficult may somehow affect the care they receive.
Her essay should be required reading for oncologists and oncology trainees.
Cancer care depends on information we cannot obtain from scans, genomic tests or pathology reports: what a person living with cancer is actually experiencing. A CT scan may tell me whether a tumor is shrinking. A blood test may tell me whether treatment is affecting the liver or bone marrow. Genomic testing may tell me what is driving the cancer.
None of those tells me whether a patient is spending most of the day in bed, whether nausea is making it impossible to eat, whether pain is becoming intolerable, whether treatment is preventing someone from working or caring for a child, or whether the patient has quietly decided that another month of therapy is no longer worth its burden.
For those things, I need the patient to tell me.
And I need the patient to believe that telling me the truth will not jeopardize our relationship. That is why psychological safety in medicine is more than kindness. It is a requirement for good clinical care.
Minimizing symptoms can have very concrete consequences. If someone tells me that neuropathy is ‘not too bad’ because they do not want to complain, I may continue a drug at a dose that ultimately causes permanent nerve damage. If severe fatigue becomes
I’m a little tired,
I may underestimate how profoundly treatment is affecting daily life. If a patient is afraid to say,
I don’t want this treatment anymore,
we can end up pursuing an approach that no longer reflects that person’s goals.
Disagreement itself is clinically valuable. Patients sometimes notice patterns we miss. They question assumptions. They remember what happened after the last infusion. They know their own tolerance for uncertainty and toxicity better than we possibly can.
A patient who says,
I don’t think this is working for me,
is not being difficult. That statement is information.
Medicine necessarily contains an imbalance of knowledge and power. Patients come to us at extraordinarily vulnerable moments. In oncology, they may have just been told that they have a life-threatening illness. The physician understands the terminology, the probabilities and the treatment pathways. The patient often does not.
That asymmetry is unavoidable. What should not be unavoidable is the belief that access to good care depends on being agreeable.If patients believe they need to be liked to receive good care, we have distorted the therapeutic relationship.The physician’s job is not to reward compliance with affection. It is to help patients make the best possible decisions under conditions that are often frightening and uncertain.
That requires creating explicit permission to disagree. I sometimes tell patients that if they disagree with me, I want to know. Questions are welcome. Second opinions are welcome. Changing one’s mind is allowed.Those assurances may sound unnecessary to physicians. They are not necessarily unnecessary to patients.
Cancer medicine has, in many ways, become more patient-centered. Patients increasingly help shape clinical trials and research priorities. Cancer centers work with community advisory boards. Patient-reported outcomes have become increasingly important in research and practice. Shared decision-making is now part of the language of modern oncology.
These are meaningful advances. But none matters enough if, in the examination room, the patient still believes there is a correct answer to the question,
How are you doing?
The correct answer has to be the true one. That matters even more because modern oncology increasingly involves choices rather than single obvious paths.
- Should we intensify treatment to maximize the chance of disease control at the cost of greater toxicity?
- Should we accept more uncertainty in exchange for better quality of life?
- How much risk is worth taking for a possibility of benefit?
- When should we stop?
Those are not questions genomic sequencing can answer for us. They require medicine to incorporate values as well as biology.
Precision medicine makes listening more important, not less.
The paradox of modern oncology is that the more technologically sophisticated our field becomes, the more important individual patient experience becomes. We increasingly divide diseases once called simply ‘lung cancer’ or ‘breast cancer’ into molecularly defined subsets. Treatments are becoming more precise. Some patient populations in clinical trials are becoming smaller.
That makes each patient’s experience more informative, not less. We need to know not only whether a drug works, but what living with that treatment is actually like.Patient-reported outcomes help systematically capture that information. But even the best questionnaire cannot substitute completely for a clinical relationship in which someone feels comfortable saying:
- ‘This hurts.’
- ‘I am scared.’
- ‘I don’t understand.’
- ‘I disagree.’
- ‘I don’t want to do this anymore.’
We cannot eliminate the vulnerability inherent in serious illness. But we can reduce the unnecessary power imbalance surrounding it.
That starts with small things. Ask open questions rather than questions that imply the desired answer. Do not dismiss symptoms because objective tests look reassuring. Treat disagreement as useful information rather than resistance. Invite family members and caregivers into the conversation when the patient wants them there. Normalize second opinions.
And occasionally ask a question physicians perhaps do not ask often enough:
Is there anything you have been reluctant to tell me?
Most importantly, patients should know that being frustrated, frightened, skeptical or unhappy will not make us care for them less.Cancer care has become extraordinarily sophisticated. We can sequence tumors, detect circulating tumor DNA, characterize immune signatures and increasingly predict which treatments are most likely to work.
Yet one of the most important diagnostic instruments in oncology remains remarkably old-fashioned: a patient who feels safe enough to tell the physician the truth.
Grant’s essay is ultimately about the fear that patients must perform a role in order to receive good care.They should not have to.Our responsibility is to create a clinical environment in which the patient does not need to be the perfect patient.
They only need to be honest. And we need to listen.”
This Is Why Women Are Scared to Tell Their Doctors the Truth
Other articles from Gilberto Lopes on OncoDaily.