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Dr. Praveen Kammar

MS, MRCS, MCH

Surgical Oncologist

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Cancer Blogs | 24 January 2022, Monday

Are The Relatives Right In Asking Not To Disclose Diagnosis Of Cancer To The Patient?

It was a regular evening where I was seeing my OPD patients and I asked my secretary to usher the next patient in. A young chap comes inside quietly and tells me that the patient is his father and requests me not to disclose that he has cancer. I reassure the son that I will handle the situation in a sensitive manner. The consultation went on smoothly where I avoided using the words “ cancer” , “ chemotherapy” , “ stage” – some of the red flagged words I have come to recognize that are to be avoided in sensitive consultations.

I have often wondered, what’s the reason for a family to hide a diagnosis from a patient? Does the patient have any idea about the condition he is suffering from? Will he ever come to know about it and how?

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Ethical issues: The dilemma a treating doctor faces.

What has been taught to us in medical school is that a doctor’s sole obligation is towards his patient and the patient has the right to know about his disease and care pattern. Family and friends are not the first priority.

This uni-dimensional teaching of western medicine is based on western philosophy of prioritizing a person’s individuality over family values. However when we actually think a little deeper it is would become clear that Indian society still values family over the individual. Similarly in many other countries – Japan, China, Greece, Arab countries and several Islamic countries have similar family values.

This creates a dilemma in the mind of the treating doctor when faced with a request not to disclose the diagnosis. While his training and teaching expects him to be most forthcoming to the patient, the family and social structure expects him to act differently.

Imagine a scenario- where a patient is accompanied by several relatives inside an oncology OPD and every member has a question and an opinion about the medical condition while the patient is completely sidelined?

Should a doctor honor the family’s concerns? Or honor his oath and talk to the patient directly brushing aside the concerned family members?

There are no rights and wrongs in ethical issues. The ultimate goal should be “patient’s wellbeing”. And in this regard the family and the doctor are on the same page. How, they perceive, it could be achieved may be completely different.

Is it necessary to have a full disclosure? Why family plays an important part?

Full disclosure to patient implies that the patient will be able understand the medical condition and treatment options he has. It is easier to disclose that a patient has a hernia which needs a surgical procedure that is well established. The likelihood that he will be cured is very very high. Why such a disclosure is possible in case of a Hernia? It is purely because many would have heard about hernia and know that it may need one surgery to take care of.

However breaking the news of a cancer is a different ball game due to the myths, misconceptions and stigma attached to it. The diagnosis of cancer is still considered a death sentence by many in India, even when it is in a curable stage. Hence, It takes considerable time to discuss the diagnosis and treatment options. Just breaking the diagnosis itself will have a devastating effect on a person’s psyche. How a person will take this news cannot be gauged by the doctor in the first few interactions. In such a case, family is better placed to take the news because they are not the ones suffering from cancer and they know the patient better than the doctor.

Full disclosure to the patient also implies that he can take care of himself or be in charge of the treatment. This also means that there is an established system to provide care to him. In the absence of these factors a full disclosure may be counterproductive. Most of the times the cancer treatment in India happens in segments. Surgery in one centre, chemotherapy in another and radiation in another different center. There is no common string tying these treatments together except the family and friends.

Full disclosure also means that the doctor has to have sufficient time to explain things to the patient and give time and space for emotional responses. In the Indian setting, most of the doctors have neither time nor space for this. Hence relying on the family for initial discussion plays like a bridge.

The stage of the disease is also something that plays an important part in disclosing the cancer to the patient. If the cancer is in early stage and has a good chance of cure, I am more confident that the patient and family will take it better compared to an advanced stage cancer. Why I feel it is important to discuss the details in early stage cancer is, compliance to treatment is very important to have good results in cancer. And an informed patient is more likely to be compliant.

Education and a strong support system also have a greater impact in cancer management . An educated person is more likely to understand the diagnosis and outcomes. Not because he is emotionally different than the one who is not educated. But purely because he has the ability to acquire and understand information about his disease.

What good disclosing a terminal illness to a patient do?

This is a very valid question. But it would be wise to remember that you can hide the truth but cannot change it.

To a certain extent the family is right in requesting to hide the diagnosis from a family member with terminal cancer. But eventually all patients come to know what they are suffering from. Slowly but surely they are losing weight, losing energy and drive , confined to bed, need more and more assistance, more and more medications to keep the pain away. All these are tell tale signs of an incurable disease.

Frequent trips to chemotherapy centers, hush-hush discussion among family members repeatedly remind them of their disease.

What the relatives must understand?

There was a time when the diagnosis of a cancer was almost like a death sentence. Some of the fear about cancer still comes from this notion that the options of treatment and cure are extremely limited. But the science of cancer care has made tremendous progress and many cancers that were considered terminal a few decades ago, now have high cure rates with latest cancer treatments.

The doctor has an obligation to disclose the diagnosis to the patient. He is bound by professional oath and he can’t withhold the truth if the patient asks him directly.

Though the family has the best interest of the patient in mind, it is ultimately the patient who has to consent for the all the tests and treatment. Every major test and invasive procedure and treatment needs a written informed consent from the patient ( guardian in case of minor). So it is practically impossible to proceed with the treatment without informing the patient what he is suffering from and taking a consent to proceed further.

Regardless of the family’s wishes the patient may have a different opinion and view point about his disease. He/she may not wish to pursue treatment at all. Such views and decisions can be discussed only when all the information is shared with the patient. It’s patient right to “refuse or accept treatment”.

The diagnosis of cancer is a deeply personal issue. Beyond the diagnosis, one must understand that the patient also has to undergo physically challenging treatments, bear health impairment and disability, pain and loss of income. There may be varying degree of permanent change in his health and body. Is it right to decide to subject someone to such a difficult path without full disclosure?

The family members often feel that it is their duty to protect the patient from a sense of hopelessness. But it withholding the truth may have opposite effects. Lack of information can give rise to more anxiety and distress.

To keep the severity of the diagnosis hidden there is a risk of opting for less intensive treatment regimens than more effective ones.

The patient may come to know about the diagnosis from a third party or an unreliable source which can cause total loss of trust between patient and the family.

There are several advantages of disclosing the diagnosis

  1. After disclosure most of the decisions regarding treatment become transparent
  2. There is no fear among the family and caregivers that some third party will spill the beans.
  3. Though the diagnosis has a profound psychological effect on the patient, it gives them a chance to make important decisions of their life- like one may want to make formal will, one may want to complete a bucket list, one may want to meet close friends etc.
  4. Last and the most important, disclosing the diagnosis preserves the dignity of the patient. There have been many instances when we are forced to discuss right in front of the patient about their disease and options, without ever interacting with them directly or taking their opinions on the matter. It’s nothing short of stripping them off of their dignity and this is probably the last thing a patient expects from his doctor.
  5. Cancer treatments are long. The patient and family have to have a trusted relationship with the doctor. And trust can only be built by truthfulness and honesty.

What hiding the diagnosis can do?

Hiding diagnosis can create obstacles at every stage of evaluation and treatment. Cancer treatment is long and may involve several doctors and teams. And it may not be possible to cover all points of interactions with the patient.

Patient will definitely meet more than the treating doctor. He will meet other patients, who can tell about their diagnosis and then it may not be difficult to realize why he is there in the same center undergoing similar treatment.

The nurses and paramedical staff also have to cover the diagnosis and it is nearly impossible to ask everyone to hide the diagnosis.

Imagine a nurse is about to start a chemotherapy infusion and the patient asks an innocent question: what are you giving me?  And nurse gives a subconscious answer – it’s a chemotherapy drug.  What will happen then ? 

What happens when the patient reads the name of the hospital which may involve the word “cancer” or “oncology?”

Hiding the diagnosis alienates the patient. Someone with cancer experiences immense amount of psychological stress. If there was no open discussion about the disease, the patient will never be in a position to discuss the problems he is facing openly. He may even think that his family and friends are more distressed than him. 

What the doctors should understand?

It may have a huge psychological impact if the diagnosis of cancer is shared in one attempt with the patient.

That the family knows the patient better- as to how he/she will take the diagnosis. 

The family may be requesting you not to disclose because probably they do not know how to handle the situation and probably need time to process the information.

The family may be considering a second opinion just to be sure about the diagnosis before breaking it to the patient. 

The family may be evaluating its resources to plan for the cancer treatment.

Is there a middle path?

For the doctor….

Both the family and the treating doctor want what is best for the patient. So it is indeed possible to come to a common ground.

However, each patient is different and has different response to such sad news.

So there is no clear path that can be taken every time.

Rather, a skillful doctor will understand every situation and adjust his response s accordingly.

The treating doctor can consider discussing the diagnosis and treatment in a graded manner. He can talk to the relatives and patient, first to gauge their understanding and wishes. Based on this understanding he can decide how to break the news.

Even if the family has expressed its wish to keep the diagnosis from the patient, as long as the patient is present in the consulting room the doctor must address the patient directly and at least reassure that all the possible steps are being taken to help him/her regain his health.While discussing the diagnosis and treatment in such scenario it is better to avoid words like cancer, stage 4 etc. In some situations it is prudent to avoid the word “chemotherapy” as well in the initial consultations.

If the patient expresses desire to understand the diagnosis (mostly a head of the family or a sole breadwinner of the family in Indian context etc. ) the doctor can start by Asking how much the patient wants to know. It is surprising how different each patient is. While some want to know every detail of the treatment, some wish to know only the broader aspects.

If the family and the patient are not really sure how to go about it then the doctor must decide the steps of action.

Giving information in small chunks, avoiding medical terms, starting at patients’ vocabulary and comprehension, summarizing in the end are good practices that will build trust with the patient and family.

Before the treatment decisions are taken the family and the patient may have further queries. The treating doctor has to be available for further queries.

For the family….

If you want to keep the diagnosis from the patient, it is better to request the doctor to respect your wishes before you end up in the consultation room.

Request for time to discuss things thoroughly. Also request to keep things simple. If the discussion is overwhelming, you can ask the doctor to slow down or request a second sitting if that’s what suits you.

Entering before the patient and staying for long discussion after the patient has left consultation room sends red signals directly.

Asking patients to go out of the OPD so that you can discuss the further plan may look innocent but it dehumanizes the patient completely and strips him/her off of dignity. Hence it should never be done.

Once you are in the process of cancer treatment, it is better to have one –to –one talk to accept the situation. This will ease the stress and you will be able to focus better on recovery.

Conclusion

Request to hide diagnosis is a ethical and moral dilemma for doctors. The doctor and the family can establish a middle path.

Disclosing the diagnosis has several benefits the most important of which is preserving the patient’s dignity and acknowledging that he/she is valued as an individual.

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