Communicating With Patients About Difficult Diagnoses

AUGUST 14, 2019
Heidi Moawad, MD
Taking care of patients who have a bad prognosis is one of the factors that contribute to physician burnout. Doctors are always disappointed when a patient has to deal with a difficult medical situation and communicating with patients about unfavorable circumstances is never simple.

As a physician, you have your own personality attributes. And bringing your individuality to your in-person patient communication is valuable for you and for your patients. Nevertheless, there are several communication strategies that can make it easier for patients and physicians to cope with, and discuss a difficult diagnosis. practice management communication disease challenging difficult diagnosis

Incurable Illness 

Most incurable illnesses, like Parkinson’s disease, are manageable. However, it can be difficult for patients to accept the idea of a lifelong condition, and people living with chronic illnesses are often faced with claims of miracle cures that range from costly over-the-counter compounds to dietary programs. When these seemingly harmless solutions are contrasted with chronic, side effect-inducing prescription medications several times per day, communication can be challenging. 

The most important aspect of communicating with patients who have a chronic disease is respect. In fact, many patients who have chronic conditions will live to see new developments in their disease management over the years. As their physician, acknowledging and responding to patients’ suggestions regarding unusual treatments builds trust and leaves the door open to trying new approaches and objectively assessing their effects over time. 

Short Survival Expectancy 

Diagnosing patients with a terminal illness is emotionally difficult for most doctors. Patients and their families are likely to go through the stages of grief. Each family will face the concept of death differently based on past experiences, relationships with each other, and cultural backgrounds and expectations. 

Therefore, planning is an important part of communicating with patients who have terminal diagnoses. Not just planning for death—patients can also be given direction in planning for grief support, organization of their medical treatment, and an arrangement for professional support if a question or concern arises. Terminal illness makes people feel that they have lost control, and tools for planning what to do in future situations can help restore some of that control. 

Unknown Diagnosis 

Many doctors deal with patients who have distressing symptoms without a definitive diagnosis. This is frustrating for patients. Symptom management can range in its effectiveness, but uncertainty about the cause of symptoms can be unsettling. Often, patients with unclear diagnoses seek second or even third opinions as they try to get answers about their illness, prognosis, and possible treatments. 

Honesty and transparency are the key components to effectively communicating with patients who do not have a clear diagnosis. Suggesting that your patients access their charts online (if your system has a patient portal) can help build trust.

Pointing patients to support groups and helpful references can help them learn more about their condition. And for patients who may think you are holding back—the more information they gain, the more likely they are to know that you aren’t hiding anything when to comes to their medical care and diagnostic options. 

Complications 

One of the most stressful things to discuss with patients is a complication that occurred as a result of medical treatment or procedure. No physician ever wants to see a bad outcome, and this is not just because of liability issues—it is because doctors went into medicine to reduce human suffering and never want to add to it. 

Patients may feel betrayed when they experience a complication of medical treatment. Some patients and their families become angry or feel that they were not given adequate care and consideration. 

Dealing with errors by working with patients to reduce discomfort and improve outcomes is the natural response. Unfortunately, members of the medical team can become distracted from the care of the patient, turning on each other and pointing fingers to avoid personal blame. This can make patients feel as if they are helpless pawns in a competition. 

The real solution for communicating with patients who have suffered from an iatrogenic complication lies in staying focused on the solution to give the patient the best chance at a good outcome as possible. 

Genetic Conditions

For physicians, diagnosing a genetic condition is among the saddest moments in patient care. When parents learn that they may have passed on a medical condition to their children they can feel overwhelmed with guilt. And patients who have not had children may wonder if they could—or should—pass on a terrible disease to future offspring. 

Patients who are worried about future generations in their own family can benefit from learning that there is hope. Patients need reassurance that they are not to blame for passing in a genetic illness. It often helps to discuss emerging research, especially if the genetic condition is serious.
Genetic testing is becoming a more effective tool that can be used to identify hereditary genetic traits prior to conception, and this information can be used to guide future family planning. 

Takeaway

Communicating about difficult diagnoses poses a challenge for all physicians. Patients’ comfort and sense of control can be augmented with communication approaches that address the most distressing aspect of a difficult diagnosis.


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