Patients who are terminally ill or need palliative care garner sympathy, support. But the caregiver, standing right beside them, often gets neglected resulting in their mental health deteriorating
When Sunita* visited Dr Parth Sharma at an urban health center (UHC) in Delhi with a fungal infection, little did he know that Sunita’s major issue would be far from dermatological.Divorced from an abusive husband, she was taking care of her ailing, bedridden, blind mother for 20 years. She was overburdened and just needed a place to vent. “I used to ask her to come in for a weekly visit to check her BP or blood sugar just to give her the space to cry, lighten her load,” said Dr Sharma, a community physician and researcher at Maulana Azad Medical College in Delhi.

Millions like Sunita are taking care of either terminally ill patients or those who need palliative care, but does one know how they are coping? The recent incident of Assam IPS Shiladitya Chetia taking his own life after his wife passed away due to cancer has brought the mental health of caregivers to the fore. Tragic incidents such as these point to the caregiver burden, said Dr Jai Ranjan Ram, psychiatrist, Apollo Gleneagles Hospital, Kolkata, and joint director, Mental Health Foundation.
Support for the support system
In India, family members are the primary sources of support in most cases, and their role is central to the entire process, said Dr Soumitra Shankar Datta, senior consultant psychiatrist working in the department of palliative care and psycho-oncology of Tata Medical Centre.
Dr Datta said that he usually asks about the caregiver’s physical health first. If after they say that they are physically well but spend sleepless nights worrying about the future, then depending on the condition of the patient, he recommends psychiatric help. “Sometimes they may even need medication. In these cases, we also involve another family members (other than the primary caregiver) to have a cordon of care for the patient and the primary caregiver,” he said.
For terminally ill patients, there is an additional element of anticipatory grief. In those cases, family members need not just support but also reaffirm in some cases — that they are doing their utmost. Mental health professionals also need to look for red signals in close family members. “We usually allow them to say how they feel. When we talk to someone who is terminally ill, the conversation about what it means needs to happen. This way the family is not left in the lurch,” added Dr Ram.
We could help too
It is not just the professionals, but even friends and distant family of the patient can help. Talking about happy memories, keeping the patient involved even if they are bedridden and have lost motor skills in cases of ALS or Parkinsons, is also beneficial. Experts suggest that spending some time with the patient, even if you are just sitting with them, helps. Dr Sharma has felt the difference in his own family when his mother was diagnosed with cancer. “We used to sit together and reminisce about good memories — my father would talk about their first date, when my sister was born and so forth. Interestingly, not just my mother but all of us felt better,” he said.
Is it really a battle?
Another issue that gets ignored is the war rhetoric used in the health sector — phrases like ‘battle against cancer’ or ‘war on coronavirus’. But this is detrimental for the very patients we are talking about, said Smriti Rana, head of strategic programmes and partnerships at Pallium India, a Kerala-based NGO that provides pain relief and palliative care for free.” It may have motivational value for some, but for the most part, we internalise the idea that to be at peace with our mortality is not acceptable. We have to throw every intervention and medicine known to humans at this nemesis and do that to the bitter end,” said Rana who is also a trained psychologist.
“How often do we talk about death?” asked Dr Sharma. “We plan our lives so much, but the only thing certain about life is death. But how many of us have a living will (a legal document outlining the type and extent of medical care one desires in situations where they are incapacitated or unable to communicate their preferences)?” he asked.
Dr Sharma agreed and added that there needs to be better literacy about death for society to discuss it and accept that ICU is not the only option. Only then will we be able to cope with the pressure and anticipatory grief better, he said.
(* name changed)