A better death is as important as a good life, say the founders of two of the city’s newest palliative and end-of-life care centres.
Nobody thought he would be able to play the piano again. But before he died towards the end of last year, this elderly musician, who lived on Marine Drive and was suffering from spinal cancer, briefly rediscovered the joy of music, and his poignant notes lingered in the salty air at his home.
“Later on, since he would have problems sleeping at night, he would want recommendations on shows to watch. One day, he called me and said he could sense his time was up. But he wanted me to continue recommending shows to other people. He thought they were very good. In the end, he died a peaceful death,” says Devaunshi Mehta.
Mehta is a psychologist at Palcare, which, along with Romila Palliative Care, is among the most recent addition to the city that treats people with terminal illnesses, primarily cancer. Behind both Palcare and Romila are stories of personal loss.
“The medical system here is geared towards looking for cures. But sometimes you have to let go,” says Pheroza Bilimoria who lost her husband Jimmy, a top Tata executive, to lung cancer in 2013. “Back then, I, too, hoped that he would be cured, and since money was not a constraint, we rushed from one hospital to another. It didn’t matter – Jimmy died a difficult death.”
Bilimoria, a former publishing professional, set up Parel-based Palcare, which provides home-based care to patients, in December 2015, with help from the Tata Trusts and industrialist Anand Mahindra. She says that people always want to die at home, surrounded by their loved ones and not “hooked to hundreds of tubes in a hospital”.
But Mumbai — and the entire country, with the exception of Kerala — has too few palliative care centres. “About seven and a half lakh people (according to the National Institute of Cancer Prevention and Research) are diagnosed with cancer each year in India, and the mortality rate is between 70 to 80 per cent. But we still don’t talk about death as much as we should.” (According to social entrepreneur network Ashoka, India has about 50 lakh people who require palliative care, but only two percent get it.)
Palliative care is not only about the management of pain — with opioid medications such as morphine — and symptom management, but it is also about resolving issues such as guilt, resentment and spiritual torment in patients. “There’s a lot of anger in people — this thing about ‘why me?” — and many believe they are afflicted with the disease because of something they have done,” says Mehta. Plus, it is also about helping families come to terms with the grief and loss. “Several of them don’t know how to deal with a patient who is dying of advanced cancer, or a similarly life-limiting disease. The poor come to us more readily, because they have no choice; the rich keep looking for cures before getting in touch,” says Bilimoria, whose team of about 15, including doctors and nurses, is at present treating 251 patients at their homes.
India has around 269 palliative care centres. About 169 of these are in Kerala, and 25 years before we had a National Program for Palliative Care, Dr M R Rajagopal founded the Pain and Palliative Care Society in Kozhikode in a single room at the city’s Government Medical College. Today, he heads the Thiruvananthapuram-headquartered Pallium India that runs over 100 palliative care centres in Kerala and several more outside the state.
“The greatest resistance to palliative care comes from medical professionals themselves, and it is still not taught as a subject unlike in the West,” says Rajagopal. Palliative care, says Rajagopal, first took root in Kerala as a communitydriven movement funded by donations from laypeople and supported by volunteers. But the government was quick to support it by relaxing narcotics regulations to permit use of morphine. “Kerala was also the first state to draft a Palliative Care Policy, in 2008. Today both Karnataka and Maharashtra, too, have palliative care policies, but what matters is the implementation.”
Kerala was the first state to focus on palliative care, because it had already tackled issues that still plague other parts of the country such as infant mortality, says Dr Armida Fernandez, the former dean of Lokmanya Tilak General Hospital and Medical College.
Fernandez’s Romila Palliative Care, named after her daughter who succumbed to cancer in 2013, is a sixmonth-old voluntary palliative care facility in Bandra that has so far looked after 40 patients from various strata of society. “It’s not just end-of-life care, we provide treatment and psychological support to patients with life-limiting diseases right from the diagnosis.” While a massive void still exists in palliative care in the country, Fernandez says that it is slowly becoming a priority area, and the change is being led by individuals. “That’s how it started in Kerala, too, and the state will join in. India started with battling infectious diseases, and maternal and infant mortality, and the focus is now shifting to lethal, non-communicable diseases. Sooner or later, palliative care, too, will become, I hope, a priority. When you’ve managed to take care of the living, you have time for the dying.”
And a better death is as important as living a good life, says Devaunshi Mehta. Studies have shown that the dying often have big regrets, but Mehta says that the little things we can do for them also make a huge difference. Like it was with Sushma Walke, a kirana shop owner who passed away at the beginning of this year. Walke, who had breast cancer, and was also suffering from brain metastasis, was bed-ridden for months. “She had nothing to do, she was agitated. So we got her a wheelchair, and that made her happy. And when we asked her what else she wanted to do, she said she simply wanted to have long chats with her neighbour, just like in the old days. A few weeks after that, she divided her assets between her children and passed away.”
Dear Friends @ Zoroastrians Net,
You may watch few minutes of the film here:
Tata Trusts, a charitable organisation of Tata Group founders, is changing its approach of giving grants to non-government organisations for social causes. Instead, it will get directly involved in implementing welfare programmes in adherence to guidelines outlined by chairman Ratan Tata last year.
Tata Trusts, which owns two thirds of group holding company Tata Sons, will set up programme management units in new geographies that it enters and establish strategic partnerships with government and corporates as part of its new approach to philanthropy, an official said.
“The process of building a right partner is time consuming. You need teams to be put in place on the ground. Especially, in a new geography where you need to move faster,” said Prabhat Pani, head of technology and partnerships at Tata Trusts.
“The earlier approach was to give grants. If we need to be part of scalable programmes we need to go directly.” The move is likely to impact several non-governmental organisations (NGOs) given that NGOs and institutional partners have cornered 85% of Rs 3,000 crore in grants made by the Trusts between financial years 2012 and 2016, as per data collated by ET.
Tata Trusts has already set up a programme management unit in Odisha to deal with the issue of malnutrition, and it has formed similar units in Andhra Pradesh, north Karnataka and Uttar Pradesh in the past 12 months, Pani said. This is in line with the vision of Trusts chairman Ratan Tata.
“We wanted to change the form of our philanthropy from one that was predominantly executed by NGOs to one where we would manage some of the projects ourselves,” Tata had said in an interview published in the group’s in-house magazine Tata Review in January.
Click Here for the full story from Economic Times
Tata Trusts today signed a pact with Tirumala Tirupati Devasthanams (TTD) for setting up a cancer centre in Tirupati to address increasing cases in the region.
“Given the rising cancer burden in the region, Tata Trusts has joined hands with TTD to address this concern by bringing affordable cancer care closer home to the people of the region,” Tata Trusts and TTD said in a joint statement.
The centre will strive to provide care to the patients without denying it to those with financial constraints, it added. It will be constructed on 25 acres of land provided by the TTD, the statement said.
As per the MoU, Tata Trusts will set up a project management vehicle that will be responsible for all aspects of construction, execution and operationalisation of the facility.
The Trusts will also rope in a team of experts from Tata Medical Center, Kolkata and Tata Memorial Hospital, Mumbai to provide technical assistance to the project, it added.
Tata Trusts Managing Trustee R Venkataramanan said: “Our aim is to ensure the provision of equitable, affordable, high quality cancer care for the masses. We are positive that this centre will be a landmark institution in this part of the country”.
The centre to begin with will address the increasing numbers of cancer cases in the region and will evolve to become a centre of excellence in oncology education and research as well, the statement said.
“Today is another important milestone where the Tata Group and primarily the Tata Trusts are embarking on another important project a charitable state-of-the-art cancer hospital, which will help patients in Tirupati and outside”, Tata Sons Chairman N Chandrasekaran said.
“We have worked together with them to make the pilgrim experience better through technology,” he added.
The proposed facility will be a comprehensive centre, with in and out-patient facilities, diagnostics, therapeutics, rehabilitation and other such support services. AKT SA
An appeal for Medical Assistance for Er. Sohrab R. Bharucha, Panthaky of Poonjiaji Parsi Agiyari, Nargol 396 135
Er. Sohrab Bharucha, (40) Panthaky Saheb of Poonjiaji Parsi Agiyari, Opp Tata Wadia High School, At & Post: Nargol 396 135 met with a serious accident during the twilight hours on April 24, 2017 when the two wheeler that he was riding crashed headlong due to darkness and poor visibility into a water buffalo sitting on the road.
Er. Sohrab Bharucha has suffered brain injuries, and has been brought to Mumbai where he has been admitted to the ICU of Saifee Hospital, Charni Road, Mumbai.
Er. Sohrab is presently in a coma; his recovery is expected to be a very long drawn out affair that will necessitate heavy expenditure that the family of this young Mobed can ill afford.
Whilst we along with some others have provided financial support for immediate use by the family, the requirement of funds is going to be substantial as the hospitalisation is going to be for a minimum of at least 2 months, perhaps more, and thereafter recuperation.
Mrs. Dilnavaz S. Bharucha, wife of Er. Sohrab Bharucha has written to us requesting us to assist the family, towards meeting the medical expenses by raising funds through a ‘Public Appeal’ in community media and other avenues.
A young Mobed and his family are currently passing through an acute crisis. It is recommended that community members contribute generously towards supporting Er. Sohrab Bharucha and his family during this very difficult period when they will be saddled, with substantial medical expenses way beyond their modest means.
Individuals and institutions that wish to extend support towards meeting the medical expenses of this young Mobed, may send their donations by way of cheques / drafts made out in the name of – The World Zoroastrian Organisation Trust – to:
The World Zoroastrian Organisation Trust,
C-1, Hermes House, 3rd floor,
Mama Parmanand Marg,
Mumbai 400 004.
a) Donors from India are requested to note that their names, address and PAN should be mentioned in the covering letters. Donations to the Trust are eligible for claiming exemption u/s 80G (vi) of The Income Tax Act., 1961.
b) Donors from overseas may note that The World Zoroastrian Organisation Trust is permitted to receive donations from overseas as per The Foreign Contribution Regulation Act (FCRA) 2010.
Dinshaw K. Tamboly;
Enactus Reading is a society looking at tackling problems through entrepreneurship. Our project Co-Create is based in the Spiti Valley where we aim to help reduce the waste plastic bottles posing a threat to the eco-system.
We plan to take these bottles and turn them into solar lights which will be sold and used in the town and villages nearby. This not just helps with the problem of waste but it also provides a renewable source of power and also helps provide employment to the locals whom the project will employ to make these lights.
To raise money to support this, my team and I are living on a budget of 5 GBP a week from the 27th of Feb until the 3rd of March.
Please donate and help start our project.
To see what the area is like please watch this slideshow of Spiti:
Thank you everyone for your generous contributions. I am on the second day of the challenge. It is hard but when I think of the immense good that the project will bring I don’t mind the hunger. Please check my facebook page to keep up to date with my progress and to see that I am eating daily 🙂
Click Here to Donate