On Saturday, January 28, Pallium India-USA and the community of Silicon Valley, California were honored with a special guest.
Pallium India chairman Dr. M.R. Rajagopal gave a talk to a full house at the private home of Dr. Jyoti Lulla, a well known and respected Saratoga physician and community member.
The event, organized by Pallium India-USA, was well attended by many physicians, healthcare workers, Silicon Valley executives and engineers, and others who wished to learn more about the work Pallium is doing in India.
Pallium India-USA Volunteers
Dr. Jerina Kapoor, chair of Pallium India-USA introduced Dr. Rajagopal.
Dr. Rajagopal’s hard hitting and at times emotionally intense talk took on the serious problem of suffering and pain relief in India.
He told two stories: one of a poor woman, Sangeeta, whose mother was dying of cancer. Her own future was foreclosed on as a result of the impoverishment created by the absence of an adequate medical and social system. The second story was of a wealthy man, Mr. Das, who nonetheless was traumatized by his doctors’ insistence he undergo needless life-extending treatments.
Dr. Rajagopal challenged the audience to think about and plan for their own future.
“Most of us won’t have the good fortune of an instant death,” he said. “The majority will have a prolonged decline.”
A lively and passionate discussion followed his presentation. The quality of the talk was a sure sign that positive change is possible when it comes to caring for the seriously ill and dying around the globe.
In all a very successful event.
read more…
Emily and Ronan’s story shows, from an emotional standpoint, why palliative care is such a basic human need and right:
Notes From a Dragon Mom
Santa Fe, New Mexico.
MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.
Emily Rapp and her son, Ronan, who has Tay-Sachs disease.
I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?
Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.
Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.
Where is Santa Fe, New Mexico ?
Rahmath
Sunshine Mugrabi, from California, visited Pallium India’s Trivandrum Institute of Palliative Sciences (TIPS) in early 2011 where she met a patient who touched her heart. Her name was Rahmath and suffered from an advanced incurable illness.
Sadly, Rahmath died recently at TIPS. Rahmath was a humble person, poorest of the poor in material wealth, yet when she died, obituaries came in from many parts of the world! (see the comments here)
Earlier this month Sunshine just gave a talk at the San Francisco End of Life Coalition. As a follow up she was interviewed by the SevenPonds blog, where Sunshine talked about Rahmath. Here are some quotes:
“The thing that was so amazing about her was that she was always smiling. I can’t think of her face without thinking of her smile and her beautiful shining eyes.”
“She was calm, even though it seemed as if she had more hardships that any person should have. She had had a very, very challenging life. And somehow she took it in this spirit.”
“I feel like her smile is with me for the rest of my life. I was incredibly sad, but it was also bittersweet.”
“Death is the most profound experience you’re going to have, besides birth.”
Please read the full interview at SevenPonds:
Where is San Francisco ?
We are glad to report that Pallium India has entered into a new alliance with Child Family Health International (CFHI) for a cultural immersion program.
CFHI was started by Ms Evaleen Jones when she was a young student. It has grown to a very successful organization, and Pallium India is proud to be associated with CFHI, thanks to the introduction by Dr Jerina Kapoor, founder of Pallium India-USA.
Recently, two representatives from CFHI, Mr Steve Schmidbauer and Ms Hema Pandey spent a few days with us in Trivandrum before rushing off on their numerous projects in various parts of India.
They have reported on their visit at the CFHI blog, here’s an excerpt:
A Day in the Life – Implementing Palliative Care in India
Hema and Rajagopal on home visits
As we drove into some of the poorest communities in Southern India, Dr. Raj and his team, a nurse, a social worker, and a driver went about their routine. Patient files are reviewed as we travel in the van. The size of the patient files is notable. After Dr. Raj read the file a bit, he begins to tell us the context of the family we are about to see.
We get a succinct yet thorough description of the family composition and history. The level of detail is impressive and we even had a few questions about the family that Dr. Raj answered from the record. I asked him when he last saw the family and he said that this was his first visit to them.
There are three other teams conducting home visits and so the family has been seen by the other teams in the past. It is amazing to see the level of detail that is recorded from the home visit. From these notes, other services from nutrition, to physical therapy, to social work are provided –all driven initially from the teams’ weekly or fortnightly visits.
Thank you, Steve and Hema!
Pallium India USA members at the training
In the United States today, a quarter to a half of all deaths take place in health care facilities. Numerous studies have documented critical deficits in the medical care of the dying; it has been found to be unnecessarily prolonged, painful, expensive, and emotionally burdensome to both patients and their families. Yet, not enough people make the proper preparations to protect themselves. One easy way is to prepare and Advance Healthcare Directive. This is a legal document that makes your wishes known if you were ever to become incapacitated and unable to make crucial healthcare decisions for yourself.
This month, Pallium India-USA members were trained in how to bring this awareness and knowledge to the community. It was given July 20, by Jeanne Wun, Outreach Director of our partner Hospice of the Valley. In this informative and lively interactive session, we learned how to best talk to the community about this sometimes sensitive issue. Ultimately, it is about each person having a say in perhaps the most important medical decision they might make in his or her life. We now plan a speakers bureau so that we are able to talk in various languages to the community, thus ensuring no one is left unprotected.
