Doctordenky's Blog

My Dilemna

I have a personal bias towards telling…..telling the patient of the truth about his diagnosis. This is what I was taught in school.

Initially, I went around in circles when talking to patients that they sometimes perhaps wondered what I was really saying. But practice makes perfect. I learned the skill. Got rid of my own discomfort and became quite confident and proud that I can swing it.

Oops! Wrong Mistake!

However, I also noticed that telling the truth is not as simple as I thought it would be. What I have read in the books about the relationship being strictly between patient and doctor were only half as true.

When faced with an actual patient, I never dealt with a single person but almost always an entire community or entire family at the very least. I realized that if I insist on what I learned in school, I will be met with resistance in many different points. This resistance will swell-up and eventually explode into a war not between the doctor and the cancer but between the doctor and the family. The patient will never win in this kind of war. The doctor will never be therapeutic but a constant source of irritation and anger for the family. The doctor will only add to the already tense and anxious situation pervading the patient and family.

The Lesson: Respecting Variability is Key

I have learned that there are patients who want and patients who don’t want to know.

I have learned that there are families who are amenable to open discussion with the patient and there are families who must first be made to realize and convinced of its importance and there are families that who will insist on their wishes.

I have learned that I need to convince the relatives that we are allies, that we are on the same boat and that we have the same goals.

I have learned that the approach will never be one size fits all but must be customized for each patient.

Strategy: How To Tell Or Not To Tell

So, when faced with a patient, I often do not go directly to the patient. I discuss with relatives first and win them over to allow me to evaluate the readiness of the patient to discuss. The relatives also need to be assured that the amount of news to be delivered is only up to how much the patient wants, needs and can tolerate. I remind them that I am a friend and as such I will not impose harm on the patient. When I already have their go signal, I proceed to the next stage.

The next stage involves meeting the patient. When we are face to face, I determine first what the patient already knows. I listen intently and be sensitive for cues. In this way, I avoid the shock of delivering a bomb. Making the patient talk first somehow softens the impact because events are brought up to her consciousness at her own pace.

It is never easy to say when the right time has come. Given the weight of the news, there is never truly a right time. Often, we need to warm up to the patient. It might take a number of encounters before I can deliver. What is certain, however, is that when the patients asks for the truth, even when I have promised the relatives not to tell, it is a very clear sign that the promise has to be broken and the patient needs to know. There is no question about that.

The concept of witholding a cancer diagnosis from the patient is a universal phenomenon. It is not only a dilemna of Filipino doctors and those from conservative societies but even of doctors from progressive and liberal societies.

Many studies have been done to investigate patients’ preferences about being told the truth about their diagnosis. Surprisingly, a significant proportion of patients wanted to be told the truth about their diagnosis. Studies have been done among Asian, European, Middle Eastern and American patients showing similar results.

It is the practice in Japan that the diagnosis is almost never told directly to the patient but to the family. However, a study conducted by Ruhnke GW, et al. among Japanese patients found that even in this conservative society, 42% of the patients agreed that they should be told of the diagnosis and should be asked whether the family should be told.

A study done by Al-Amri AM among patients in Saudi Arabia showed that 99% of the patients wanted to know their diagnosis.

In the Philippines, a study was done by Ngelangel, CA, et al found that 97% of patients indicated that they should be told directly of the cancer diagnosis.

Despite having found that many patients would like to be told the truth, we must realize that there exists a population of patients who do not want to be told and therefore, we cannot barge into a patient’s room insisting that the patient be told right away.

We must remember this: There are patients who want to know and there are patients who do not want to know.

So how do we go about it?………

The nurse told me that a new patient was referred to me. The biopsy result confirming a diagnosis of cancer came out only yesterday. I went over the patient’s record then asked the nurse “Does the patient already know?”.

When I was a student, we were taught that it is unethical to discuss a patient’s diagnosis with anyone other than with the patient himself. Doctors are expected to be straightforward with the patient. It was considered unacceptable to discuss the diagnosis first with the relatives.

When I became a doctor, I noticed exactly the opposite. Relatives often do not want the doctor to disclose the diagnosis to the patient. Relatives do not discuss the situation with nor around the patient. Health care workers are instructed to keep silent about the diagnosis. Everybody knows except the patient. So goes the conspiracy of silence.

What the relatives say

The most common reasons why relatives don’t want patients to know is because they are afraid that the patient will worry, become sad or depressed and they fear that this will contribute to hastening the patient’s deterioration or demise.

This reaction is very common not only in the Philippines but in every culture. This is more prominent, however, among Asians especially the Chinese and Japanese.

Factors That Influence Truth Telling

I have also observed that the degree of education plays some role. More educated patients tend to be more open about being told the truth and would demand such to give them the opportunity to prepare and participate in decision-making.

Other factors include family conflicts and our own inability to come to terms with the situation. A diagnosis of a life-changing illness affects not only the patient but the entire family. Family members also go through emotions such as denial, fear, anxiety and all sorts of emotions that patients go through. Sometimes, patients unknowingly project these emotions into the patient and we fail to distinguish our own thoughts and emotions from those of the patient.
(These are not meant to cast judgement but to simply point out my observations)

And of course, socio-cultural factors play a very crucial role. The family is seen as a cohesive unit that is charged with the authority to take care of the needs of its members.

A Doctor’s Perspective

In my experience, I have not encountered a patient whose condition literally deteriorated because of having been told his diagnosis and prognosis. It’s true that some patients tend to worry, become sad and others go into depression but these are normal emotions for patients to go through upon knowing that they are diagnosed with a potentially life-changing condition. These are normal human reactions to disease. Admittedly, there are patients who may get into severe depression but these cases are rare and can be managed.

Stages for Growth

There are stages of growth in being diagnosed with an illness. Patients must be allowed some time to be sad, to think, to worry, to be anxious. We must not deprive them of this opportunity because this is possibly a springboard to becoming stronger and a better human being.

We are like glass. Glass has to go through intense heat to be molded into a beautiful piece of art. Not allowing the patient to experience these emotions is like leaving the glass alone because we do not want it to go through the heat. Not allowing the patient to go through these emotions may hinder the patient from learning and thus growing in the process.