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Submitted by PatientsEngage on 16 March 2016

Breaking bad news to patients can be daunting and difficult, especially for caregivers.  Maya Ramachandran narrates her experience when she and her husband were caught in such a catch-22 situation.  

My husband’s close relative was experiencing sudden onset of bleeding after almost 25 years post-menopause, at the age of 75! Fearing that it could be cancer, she had shied away from meeting doctors. After a whole year of having struggled with this almost alone, she decided to share with me. My husband and I took charge of the situation as she came to live with us. Our immediate action was to take her to our family physician for an opinion. She agreed reluctantly and upon physical examination, the doctor advised further tests such as MRI, ultrasound and blood tests for a confirmed diagnosis. 

It was a struggle from start to finish. There was resistance of the most severe form.  According to her, the ‘C’ word was the most terrifying, dirty word that existed and she was convinced that it was incurable. She did everything in her might to deny and fight against it. It was apparent to me that she was overcome by extreme fear. Therefore, she was unwilling to submit to tests and scans for fear of having to confront the truth, and, deal with possibly an uncertain future.  

Somehow, all her tests were completed. To our dismay, the term “endometrial carcinoma” stared at us (me and my husband) from her MRI scan report. Biopsy was recommended to confirm the diagnosis. The words “stage 1A” offered some comfort in an otherwise uncomfortable situation that we found ourselves in. Our family physician who saw the report seemed to think that biopsy was a mere formality; that it was certainly early stage of cancer. In order to clarify this, I fixed up an appointment with my friend’s husband - an oncologist. He took a close look at the scans and reports, and believed that the cancer was in an early stage; however, he felt a biopsy was definitely required as also for surgeons to operate on the basis of a confirmed diagnosis. 

Both doctors advised hysterectomy as she was in an operable stage and for minimising further risk. We were wondering how to reveal this to her as this was what she feared. While we felt that she needed time, the dilemma was that the doctors goaded us to act at the earliest. They said, You never know with cancer......act as early as possible”However, in the days to come, her fears and lack of acceptance were ‘acted out’ in very emotional ways. She would lament about having got cancer, about her belief that she would pass away either after anaesthesia or on the operating table. She sometimes felt that she would have been better off not knowing this diagnosis; that she shouldn’t have agreed for the tests, in the first place! Her husband is a man of faith and he would keep encouraging her to adopt a positive attitude and trust in God’s healing powers. The entire process stressed me and my husband immensely. My blood pressure shot up and I was advised to undergo an ECG test. My husband spent several sleepless nights and his blood sugar levels sky-rocketed. Needless to say, it was traumatic for all concerned. In the end, she opted for surgical intervention, but on the condition that the diagnosis must not be shared with anyone else – not her family, nor her friends. 

This is the kind of dilemma that caregivers experience when disclosing to patients about their diagnosis – to tell or not, when to tell, how to tell, and, how much to tell.  Some patients are resistant about knowing the diagnosis - they have difficulty accepting it, are ashamed of it due to stigma, and/or overcome by fear.

Here are some tips for caregivers:

  • Be available to the patient immediately after disclosure as he/she may want to clarify, discuss and/or share something. 
  • Be a willing listener and offer words of reassurance. We could say, “Have faith”, “Let’s hope for the best”. This is different from providing false reassurances such as, “Everything will be alright”, “You will be cured”.
  • Encourage the patient to seek professional counselling. This might help them deal with their emotions in order to arrive at a rational decision as it is hard for family members to be unemotional and/or objective. Alternately, family members too can seek professional help to deal with this situation.
  • Continue with your regular routine, without letting the diagnosis take over your/patient’s life. For instance, allowing the patient to cook, water the plants, go out and meet friends – without undue stress or strain.

As Elisabeth Lesser says in her book, ‘Broken Open’, “If we repeat what is painful, we find only more pain, but if we embrace what is within us – if we peer fearlessly into the shadows – we stumble upon the light. Asking, “Why is this happening to me?” will lead us to self-pity. Instead, ask, “What can I learn from this?” and this will direct us to a higher maturity. Use adversity for awakening”.

Different countries have adopted specific guidelines to deal with disclosure. However, no such guidelines exist in India.  In my experience working in the HIV/AIDS sector for more than a decade, I have seen similar struggles regarding disclosure. There are guidelines laid down by the National AIDS Control Organisation (NACO) mandating disclosure to the partner by the health care provider, where the patient is unwilling to share. There is of course, a difference between communicable and non-communicable diseases, as in the former the risk of transmission is very real.

You may also want to read this by Maya Ramachandran: Care for the Caregiver

 

 

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