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Journalism of Courage
End-of-life scenarios inevitably tend to focus on death. But they are as much about life and continuity, something that helps terminal patients live their last moments with dignity and guides their families to make peace with the inevitable and move on. Ask Seema Mehta,* sister of Nitin*, who passed away at 21 because of bone cancer, just when he had completed his engineering degree and was hoping to secure a future with his start-up.
“While she was very much a part of her brother’s palliative care, she needed long-term grief counselling after his death to get back on her feet,” says a counsellor at the Gujarat Cancer & Research Institute (GCRI) in Ahmedabad.
A partly government-run institution, it provides palliative care, which is holistic therapy and disease management aimed at optimising quality of life among people with serious, complex and often terminal illnesses. But what sets it apart from most institutions is that it sends a specialist team for home care and in terminal cases, offers bereavement counselling to family members. Set up in 2010, it also provides OPD and hospice services at a community centre, breaking the barrier of accessibility and giving patients agency in end-of-life scenarios.
End-Of-Life Care & Beyond
Once doctors told Nitin that his case was terminal and he should, therefore, consider palliative treatment, he opted for home care in September 2022. Ten months later, he succumbed to cancer but not before he and his family had been thoroughly counselled on what to expect as he was nearing the end of his life and encouraged to make the most of his good days with therapy. A team of doctors and nurses would visit him once every 15 days and would be on call for emergency situations. Nitin also had periodic consultations with a dietician and counsellor, the diet being readjusted to what and how much he could eat per meal. Seema was 18 when Nitin passed away and being the primary caregiver, was taught how to feed and turn her bedridden brother to avoid bed sores. Says the nurse who cared for Nitin, “He had a strained relationship with his father and until his last breath, he only worried about his sister, regretting that he could not do enough. We counselled his sister to hold herself up before him to ease his anxieties. But when he did pass away, Seema couldn’t contain her emotions. She was very attached to him and no matter how much we prepare the kin, processing death when it happens is tough. We counselled her for months. Our responsibility doesn’t end with death till we help those living to reconcile to a life without their favourite person.”
Keeping a tab on patients’ kin is something that Dr Priti Sanghavi, HOD and deputy director at GCRI, does meticulously. “We were tracking the wife of a patient who passed away at home. A school teacher, we kept checking on her intermittently, as we do with relatives of all our deceased patients. Six months after her husband’s death, she confided that she had stopped working and was suffering from severe depression. Realising she had not processed her pain and was hiding it, we immediately sent her a bereavement counsellor,” she says.
Breaking The News
Dr Sanghavi also deals with guilt-tripping. “We had a three-year old girl from Uttar Pradesh whose parents kept blaming themselves for her condition. The elderly often require repeated counselling and a multidisciplinary team. Denial is the dominant emotion with patients searching for a cure. Acceptance takes a long time,” she says.
Pain Management & Relief
Having palliative specialists at your doorstep also means a doctor can administer narcotics, including opioids like morphine, at your bedside. Patients like Shankardas, whose cancer has reached an advanced stage after radiotherapy and chemotherapy of two years, need them. He signed up for palliative care in February 2022, became bedridden in April this year but with opioids, has been able to tide over pain and prolong his life.
That palliative care is now finding acceptance is evident. As Dr Sanghavi says, “In 2011, we used to have half-day OPDs, which became full-day by 2015. From 10 patients a day in 2011, we now see almost 80-100 patients a day. All that we need to prioritise are the many moments of life before that one moment of death,” says Dr Sanghavi.
(*Names changed to protect privacy)
