A friend frantically texted me recently to ask for a doctor’s perspective on an issue she had encountered. She told me about a relative who had recently been diagnosed with cancer; their family members started their treatment but without informing the patient. The patient fainted while receiving the first dose of chemotherapy and had to be admitted to the ward. Shocked after learning her diagnosis from the other patients admitted there, they decided to discontinue further care.
My friend wanted to know if it is ethical and legal to hide a cancer diagnosis and start treatment without the patient’s consent.
According to Dr. Jenifer Jeba, a palliative medicine consultant at the Christian Medical College (CMC), Vellore, this situation is actually common. Most of her patients’ relatives request that she not reveal the diagnosis to the patient. In medical terms, this is called collusion: whereby the relatives request the physicians to collude with them and withhold information from the patient.
In Western countries, the concept of patient autonomy dictates that a physician must offer every patient the information regarding their diagnosis and the treatment options available to them. This allows the patient to make informed treatment decisions. But South and Southeast Asian countries, including China and India, practise collective autonomy: where the patient’s family plays a vital role in treatment decisions.
“The relatives request collusion with good intentions for the patient,” Dr. Dheeraj K., a senior psychiatrist at CMC Vellore, said. “Their primary aim in these scenarios is to protect the patient from the truth and a feeling of hopelessness.”
According to him, the relatives anticipate that a patient will struggle to cope with the information, worry, and sometimes even avoid treatment. “Some relatives also worry about their ability to provide comfort to the patient in these scenarios [and] may also do this due to the widespread notion in the public that a cancer diagnosis spells poor quality of life and often death,” he added. But cancer these days is not the death sentence it used to be.
However, studies at many cancer care centres, including in Southeast Asian countries, have found that most patients want to know their diagnosis. According to these studies, both physicians and relatives regularly underestimate patients’ willingness to learn their diagnoses to a large extent. Many who were kept in the dark were also able to guess on their own – in a process that they have described as painful and demoralising.
According to Dr. Arnab Mukherjee, a psycho-oncologist at the Tata Medical Centre, Kolkata, patients who don’t know their diagnoses have a tougher time. They expect to feel better with treatment and become disappointed when they don’t. Then they slowly lose trust in the treatment team and the process.
If indeed they have a poor life expectancy, they spend the last few days of their lives trying to figure out what is happening rather than seeking the sort of care and support that could help them.Knowing the diagnosis and the disease outcome also gives patients an opportunity to plan what they will do with their days: meet people, tie up loose ends, ask for (or give) forgiveness – all leading to a peaceful and dignified death.
Of course, breaking bad news is not easy. Physicians use techniques such as SPIKES (short for ‘Setting, Perception, Invitation, Knowledge, Empathy, and Summary’) to share bad news with their patients. However, patients’ relatives and bystanders may not have the requisite skills. It is important to provide information to the patient in a manner that they will like and understand.
Dr. J.V. Punitha, an internal medicine consultant at Apollo Hospital, Trichy, often uses metaphors when talking to patients’ relatives to explain the importance of revealing the diagnosis. She compares not revealing it to taking a person who is afraid of heights, blindfolded, to the top of a very high elevator.
“Lying to a person on an elevator, telling them that they are standing on the ground, only serves to fill them with doubt, as they most likely can sense that something is wrong,” she said. “The person is bound to figure out the truth sooner or later by picking up on signs like relatives having emotional outbursts or requesting to talk to doctors alone. This then prevents them from believing much of what is told to them both by the doctors and relatives.”
Patients often prefer knowing the diagnosis along with their family members, not after the family has already been told. They also expect to be offered some form of hope and to have all the treatment options explained to them. However, there may be a small subset of patients who don’t want to know their diagnosis. So it is crucial to first check with a patient – if they wish to know – and then figure out a way to communicate the information.
The Constitution of India gives patients the legal autonomy to make decisions related to their treatment. A doctor who treats a patient without valid consent is criminally liable. However, to the authors’ knowledge, no incident of a doctor being incriminated in this way has been reported thus far in India. In the realm of medical ethics, the doctor bears the responsibility of informing a patient about their diagnosis and providing the necessary support.
Therefore, doctors should, based on their assessment of the patient, reveal the diagnosis in an empathetic manner and involve them in decision-making to the extent possible.
Dr. Christianez Ratna Kiruba is passionate about medical ethics and patient advocacy, and is currently doing MD in General Medicine at Christian Medical College, Vellore.
Dr. Parth Sharma is an aspiring preventive and supportive oncologist who is currently doing MD in Community Medicine from Maulana Azad Medical College, Delhi, and is the founder of Nivarana, a digital public health information platform.