Chitra, 12, wanted to catch up on the latest flick and spend some time on the beach. Dressed up in new clothes and pretty baubles, she took an ambulance to reach the movie theatre. That evening, after the movie and some ice cream, Chitra sat on Marina beach in Chennai, enjoyed the cool sea breeze and dug into a scrumptious dinner. A week later, she was dead. Her knee, afflicted by a sarcoma, was way past recovery and could not be amputated. Chitra was one of the many patients under the care of the Chennai-based Dean Foundation run by Deepa Muthaiya.
An acronym for ‘Dignify and Empower the Ailing and the Needy’, the NGO was established in 1998 and offers hospice and palliative care to those with incurable progressive diseases. Muthaiya, now 46, realised that the first step to palliative care is to accept the inevitability of death. Her thought processes were kindled when she was looking after her father-in-law who had surgery in 1992. She was in the hospital when her friend gave her the bookThe Tibetan Book of Living and Dying to read. This left a lasting impression and gave her a new purpose of living.
May I be a protector to those without protection;
A leader for those who journey,
And a boat, a bridge, a passage;
For those desiring the further shore.
May the pain of every living creature;
Be completely cleared away.
May I be the doctor and the medicine; And may I be the nurse
For all sick beings in the world;
Until everyone is healed.
These simple lines of comfort written by Rampoche(translated by Shantideva) egged her on to look around her and do something for those requiring the healing touch when medical science appears inadequate.
Muthaiya roped in two family friends, Rotarian and former district governor, K V Srinivasan of UNIPRO and K Aravindan, Engineering Services Manager of Container Terminal Chennai, who helped her to set up base. The three set up the Dean Foundation in March 1998 with a big vision but little funds. The Foundation had a clear list of things to do: focus on those with terminal illness, aim at pain control and relief, provide counselling and emotional support to the dying patient and their family, establish a bereavement befriending centre and offer a database on allied health services in the city through networking and referrals. A hospice, explains Muthaiya, is not merely a brick and mortar building but a philosophy of care that is practised in four settings—in-patient care, outpatient care, day care, and home care.
She managed to build a trust with personal funds and donations from people who believed in the cause. Nothing happened for a year. Meanwhile she went to a nursing college the same year she started DEAN, recruited nurses through campus interviews who were later trained at the WHO Palliative Care Training Centre in Calicut, Kerala. Muthaiya also went to London and met the pioneer of the modern hospice movement, Dame Cecily Saunders and spent time in St Christopher’s Hospice and three other hospices in Vienna to gain hands-on experience. Unfortunately, Srinivasan, who had initially accompanied her to London and later to the USA, died there after a massive heart attack. On her return to India, she invited Dr B Biswakumar, a neurophysician who had lost his wife to breast cancer, to become a trustee. Biswakumar gave his medical services free and Aravindan, 50, helped fund DEAN’s activities with his own monthly income. Ironically, after helping to care for 750 terminal patients, Aravindan died of leukaemia.
Today, in a rented house in Kilpauk in Chennai, DEAN runs as a free outpatient and homecare service. Two full-time and a part-time doctor, three nurses and administrative personnel, and three full-time volunteers run the show. Thirty other volunteers lend their free time and a handful of specialists give free consultations to patients. It was a nightmare trying to get funds. “We had an idea that needed to grow but no staff, no infrastructure,” recalls Muthaiya. When they knocked on different doors, the reply was the same, “Come back when you are running a proper organisation.” It was the proverbial query; what comes first—the chicken or the egg?
The in-patient service requires premises to admit patients. The patients are mostly incurable cancer patients. Ten patients with AIDS are being treated. “No hired accommodation would allow us to admit patients because of the stigma of death that gets associated with the building. By the time doctors refer cases to us it is nearly always too late. If we could get the referrals at an early stage, we can deal with psychological problems like motivating the patients. To do more we need space to build a proper hospice,” she appeals.
Simple gestures go a long way with terminally ill patients. “If somebody is lying down, we try to make him walk. If they are unable to walk, then they are encouraged to sit up and perform simple tasks like cutting vegetables or to teach their children. As long as they have a purpose to live and a sense of well-being, they are ready to accept their condition with dignity,” she explains.
Palliative care does not make for great photo-ops on healthcare services. These are no ‘sunshine and roses’ pictures of smiling patients taken care of by pretty nurses in starched uniforms. The medical understanding—any form of medical care or treatment that focuses on reducing the severity of the symptoms of a disease, or slows the disease’s progress instead of providing a cure—leads one to face some horrifying truths of human life. These are case studies of men and women who have been reduced to putrefying flesh and bones while doctors and caregivers stand alongside with gloved hands and masked faces trying to treat ailments with no or little cure. “People come to us not just to die but also for help that has been eluding them so far. Some come to seek advice in other circumstances as well like home care or nursing assistance. All our services are free,” says Muthaiya and flips open a photo album of her patients.
Sitamma for instance, looks shrunk and leans next to a staircase in front of a damp wall with peeling plaster. “She had cervical cancer and needed regular care to contain the oozing wounds and help her from soiling her clothes. She was living in her own house but her sons and daughters-in-law could not cope with the care. They had placed her in a little room under the staircase on a bench propped up with bricks. The Dean nurses visited her regularly to take care of her,” recalls Mauthaiya. She was later admitted to Jeevodaya, an institution that only admits cancer patients.
The care given by the foundation does not impose any medication on a patient. Sometimes, they only help with dressing and daily hygiene routines. The centre is open to all kinds of alternate and complementary therapies of repute, provided it brings comfort to their patients. The two Home Carer teams travel several kilometers to provide care all over Tamil Nadu. The treatment is continued through verbal instructions given to the primary medical carer of the patient. There is a desperate need for more teams and vehicles. Dean Foundation has been in service since 1998 and has treated 1012 patients. “We have expanded our services and offer an outreach palliative care clinic to serve 22 villages in and around Karamadai near Mettupalayam, Tamil Nadu,” states Muthaiya. The patients are pouring in but funds have been merely a trickle.
The Dean Foundation played a positive role in influencing the Tamil Nadu government to pass an order amending the narcotics rule and helped to make available oral morphine to medical institutions to control pain in terminally ill patients. It is the first Indian organisation to be awarded in 2003, the Children’s Hospice International’s Elisabeth Kübler-Ross award for Outstanding Contribution, for understanding the unique circumstances involved with the treatment and care of children.
Muthaiya is working towards fulfilling her dream of many years: to open a hospice to admit patients who have no place to go. Dean Foundation has a long way to go before she can turn her dream into reality. “We are not prolonging life, nor are we hastening the end. We are trying to give dignity to the dying,” says Muthaiya before she puts the album back inside the folder containing brochures and fliers about the foundation. She switches off her laptop and is ready to go and knock on a few more doors of those who might care.
DEAN FOUNDATION Tel: 044-2645 4949; 044-2660 2112 Email: firstname.lastname@example.org
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