Photo courtesy Karunashraya
Photo courtesy Karunashraya

Palliative care: Dealing with the end

Bengaluru's Karunashraya helps dying patients deal with loneliness and inevitability

It’s 7.30am and Jeba Lideal is moving quickly to ward number two to replace her colleague who has just completed a night shift. She enters the doorway and cheerfully greets the first patient she sees, Nagaraj, a 32-year-old man suffering from oral cancer, who was admitted just two days ago. 

Nagaraj (name changed to protect identity) was cleaned and given a bath only an hour back. But due to discharge from the wound on his cheek which extends right up to his neck, his mouth needs to be cleansed again and the wound needs another dressing. While she checks his diaper and turns him on his side, Lideal wonders what Nagaraj’s life would have been before he was brought to Karunashraya, a hospice for end-of-life cancer patients in Bengaluru’s Marathahalli neighbourhood. 

It distresses her to think how long he might have suffered the pain of his malignant tumour and the agony of dying alone. Helping these patients pass away with dignity is her mission now.

On a Monday afternoon in September, when I visited the facility, Karunashraya has 53 occupants with four new admissions. That same day three residents passed away.

“On an average, we get 90 new admissions in a month," says Nagesh Simha, a surgeon and palliative care physician who has been serving as the medical director of Karunashraya since it opened in 1995 as a home care centre.

The outflow is as brisk as the influx at this 80-bed hospice. Few residents outlive a fortnight, many die in three or four days. 

Simha explains that most patients reach Karunashraya only when they have passed the curative stage of cancer. Symptoms often don’t show up in the early stages and poor patients rarely have the means to afford treatment since they are diagnosed late. About 75% of the patients who come here cannot afford further medicine and have no one to care for them.

But death and suffering are social levellers and therefore patients from affluent families, when the families lose the ability to cope with the illness, also seek admission at Karunashraya.

World order

The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness". And this is done through the prevention and relief of suffering by means of early identification, meticulous assessment, and the treatment of pain and other associated problems. These collateral conditions are usually, physical, psychosocial and spiritual in nature.

The Indian Association of Palliative Care—an organization that works to further the interest of palliative care in India—modified the definition to include life-limiting conditions as well, says Simha, who retired as its president this February. 

He elaborates that a paraplegic person who is in a life-limiting condition due to restricted movement, is susceptible to internal infections and therefore needs care, counselling and empathy. 

Simha asserts that palliative care is not only for end-of-life patients, but should be offered in conjunction with any medical treatment that a patient may be seeking, right from the time of diagnosis. The starting point in palliative care would be empathetic listening and focus on a patient’s concerns. Often these concerns may have to be gathered from non-verbal cues, he adds.

India ranks abysmally low in palliative care, which is not yet integrated into the health care system of the country. In a report commissioned by The Economist last year, India ranked 67th out of the 80 countries on the Quality of Death Index. 

“Only 1-2% of the Indian population that needs palliative care has access to it," says Simha. The main reasons for this gap are shortage of facilities and palliative care physicians. 

In general, widespread ignorance of end-of-life-care makes India one of the worst countries to die in. Take the case of morphine, an important drug for palliative care. Morphine, critical to pain management, was extremely difficult to procure until the Narcotic Drugs and Psychotropic Substances Act of 1985 was amended two years ago.

Until then, so sluggish was the process of releasing the licence for procurement of morphine that by the time a facility acquired the second licence, the first would expire. Patients, consequently, suffered in pain. Hospitals can now procure and use morphine with a single license. 

“So far, only 14 of the 36 states and union territories have guidelines for palliative care in their health policy, but the numbers are small because the total population of these states is just about 35% of India’s 1.25 billion," says Simha.

Karnataka is ready to announce its own policy on palliative care soon. Yet, the state’s capital Bengaluru, for a population of 8.4 million, has just a handful of facilities for such care: Baptist Hospital, St. John’s Medical College and Hospital, Healthcare Global Enterprises (an oncology hospital), Kidwai Memorial Institute of Oncology and Mazumdar Shaw Cancer Centre at Narayana Health, as well as Snehadan, a hospice for HIV patients.

Lone worker

However, Karunashraya is the only stand-alone hospice in Bengaluru that provides a comprehensive set of services including in-hospice and home care while also running a six-month course to train nursing aides. 

So far, it has touched the lives of over 11,000 patients, of whom almost 8,000 have passed away.

Karunashraya was born over 20 years ago with a small thought that became a big idea. Kishore Rao, chairman of the Indian Cancer Society, had noticed the helplessness of terminally ill cancer patients repatriated from Bengaluru’s Kidwai Memorial Institute of Oncology. 

“After having a team of doctors and paramedics to look after them for months, they felt completely lost to be left on their own… and wait for death," he says of patients. 

A majority of the patients, he noticed, were from rural areas with little knowledge and no money to carry on. “Hospitals did not make the effort to tell them what to do next and there was no other facility in the city to look after such patients back in the 1990s," he recalls. 

With little experience but a lot of research, with help from the Holy Cross Sisters and independent funders, Karunashraya started home care services for advanced-stage cancer patients in March 1995.

Each morning, Sister Josemary, along with counsellor Usha Shinde, took off in an auto rickshaw from their shared office space at Bangalore Medical Services Trust to offer any relief to advanced-stage cancer patients. The people they visited were destitute, with no electricity, little food and water in their homes. 

On account of the unbearable pain, they remained unwashed and hungry and often alone. Josemary and Shinde did everything to mitigate such patients in their homes until Karunshraya opened its doors on 11 April 1999.

“Our aim is to provide peace and dignity in the life and death of such patients," says Rao.

A lot of thought went behind designing the building, which is the winner of the JK Cements Architect Of The Year Award in 2000. Rao had seen India’s first hospice, Shanti Avedna Sadan in Mumbai, which overlooks the Arabian Sea, and was certain he wanted a water body within for its therapeutic effects. The wards were planned around a quiet pool for tranquility. They face eastwards to take in the rising sun. 

Wards have Dutch doors that also work as windows and reflect glimpses of water on the ceiling as the patients lie on their beds. While each ward has 12 patients, curtains can be drawn around each bed for privacy. In case of any death, the door behind each bed becomes the way out, barring visibility to other patients.

Patients often spend their afternoons and evenings on the benches around the pool in the midst of the greenery. This is also where sometimes counsellors sit with them and make them mindful of their condition, which is arguably the most challenging task for a Karunashraya counsellor.

“Patients are in different stages of awareness when they arrive," says Maria Sonia Louis, a counsellor, now also working as research assistant at Karunashraya. “We let them settle in for the first 1-2 days before initiating any conversations about their condition."

“The first and most important step is to make the patients comfortable by mitigating their pain," says Louis adding that when they arrive, some patients also need a good hygienic scrub and clean clothes.

Coming to terms

Once they feel a little better, the counsellors broach the subject of their disease. “Do you know why you’re here" they usually ask. “The closest that the patients come to accepting their condition is when they say ninge gadde idde, 'they said I have a tumour'". 

The word cancer is taboo, and is rarely used. Sometimes they also say “doctor nange current kottru" (doctor gave me chemotherapy). “This implies that they know they have cancer and it is a cue for us to tell them about their impending death," she says.

Even if they know, the finality of hearing it from someone else makes it painful. Louis says some cry for two or three days, during which time the counsellors and staff members support them in every possible way without asking any questions. 

“Once they accept, we tell them about our willingness to help in every possible way. Some are just happy if we can keep their pain under control, others like to talk about their problems," she says.

Louis points out that while the elderly don’t find it as difficult to accept their condition, it’s a challenge for younger patients and their families. They keep going back and forth between the “denial" and “why me?" phases. 

Louis has seen many parents who don’t let their sick children sleep when they are given sedation for pain relief. “They always have this fear that their child might not wake up at all," she explains.

“Patients’ desires vary from food cravings to listening to devotional music or even meeting celebrities," Louis says. But many patients only want to reconnect with their estranged family—relationships that keep troubling them until the end, as if they are looking for closure.

Louis talks about Ajay (name changed to protect his identity), a 55-year-old retired army man who was with Karunashraya during his last days. “He had not slept well in days, not just due to the pain in his throat, but also because he left his family years ago on a whim," she recalls. 

Louis could see he was restless, but could not ask him the reason since he had lost his speech. After a few lengthy conversations with his two children—his only family—she learned that Ajay had not met his parents and siblings for as long as his children had known. He wished to see his sisters just once and apologize for his mistakes. 

With some help from the teenage children, she found numbers for his sisters and called them over. Just before sending them in to meet their dying brother, Louis told them a little lie. 

“Ajay had confided in me how much he loved you and how sorry he was for never being in touch," she said. 

What followed was an intimate, tearful meeting among the siblings. They forgave each other for everything and within an hour, Ajay passed away.

It may seem like a script from a Bollywood film, but the staff at Karunashraya has observed that most patients will not move on if something troubles them. “The medicines may stop working, they might give up food and water, but they don’t let go of their last breath if they are waiting for someone or something," Louis says.

The team gets in touch with NGOs and foundations—such as Madhu Mansion Charitable Trust and Mitra Foundation—which help in the rehabilitation of patients’ families after their death.

Most dying young women are worried if their husbands will take care of their children and continue their education—in the event of having other children with the next spouse, Louis says. Husbands are anxious if their wife would be able to take on as the breadwinner. NGOs like Mitra Foundation help the families rehabilitate by offering vocations of interest and getting them employed. 

Community of caregivers

A walk around the facility shows the residences of nurses and nursing aides are located away from the patients’ wards. This was done deliberately so that when the working hands of the hospice rest, they are at peace. 

Girls, some as young as 18, from disadvantaged rural backgrounds, join as nursing aides, armed with just a standard Class X certificate from their village school. Initially, they are just excited to join the six-month training that would turn them into nursing aides and also give them Rs1,000 monthly stipend.

Few can gauge the challenges their job would bring. Louis reveals that the first two months of theory classes go well but the real test begins when they step into the wards. 

“Many get a cultural shock," Louis says. Despite having seen videos of wounds in their theory class, some just faint on meeting the patients, she adds. 

It takes the young nursing aides several months to conquer their fears. But most stick on, not only for the Rs7,500 monthly salary, but because of their motivation to serve the needy.

Global initiatives

Co-founder and director Ellen Goodman started The Conversation Project in the US six years ago. The project encourages talks among family members about what matters to them at the end of life and provides a guide to the rest to honour their wishes. 

During their research, they discovered that “90% of people say that talking with their loved ones about end-of-life care is important but only 27% have actually done so".

Games like My Gift Of Grace are also a great way to initiate such conversations. Death Cafes, where people gather to have tea, cake and talks on death, was a concept that started in London and has now spread across continents. 

The second Saturday of October every year is considered as the World Hospice and Palliative Care Day.

By making dying and suffering a part of the human experience and day-to-day conversation, Simha believes that a lot of taboos around death could disappear. He is working on conducting chai-pe-charcha kind of meets. “All you need to make such conversations a reality is just one voluntary expert and a few interested people," he says. 

The US is already paying its doctors to spend time with patients talking about end-of-life care. India may not be far behind.

Recently, three professional organisations of palliative care, critical care and neurology, together set up a taskforce, ELICIT, to address the many issues of end-of-life care. The ministry of health has drafted a bill. Among other things, the bill recommends that people leave a “medical power of attorney" to take decisions on their behalf when they are not medically fit to do so themselves. 

“If the bill is passed in Parliament, it will create a framework for appropriate and humane end-of-life care, always in the best interest of the person. It will also prevent unnecessary invasive and inappropriate life support interventions and will foster an environment of trust between all stakeholders involved in such care," says Simha. 

Meanwhile, organizations like Karunashraya will soldier on and fulfil the wishes of those who have no one, with help from its varied funders.

From actor Aamir Khan to cricketer Rahul Dravid, a number of celebrities have contributed liberally to the hospice, but a lot of people from underprivileged backgrounds have also taken pains to contribute in their own little way. 

Rao speaks highly of a poor, abandoned painter and lung cancer patient who offered to paint the wards of Karunashraya free of cost after his discharge. He also mentions an individual from Kolar who never forgets to send them his contribution every month—Rs125.

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