India West, “the largest weekly newspaper providing news from India, Pakistan and the Asian Indian American community in California and the United States”, reports on Pallium India-USA’s recent event:
Click for full size
Since its inception, in addition to supporting Palliative Care development in India, Pallium India-USA has been working to help provide culturally sensitive end of life care for people of Indian origin in the USA.
In this context, the front-page San Jose Mercury News article on a recent survey of Californians’ end-of-life wishes, is particularly relevant.
The overwhelming majority of those polled said they would prefer to die at home, rather than in a hospital. This flies in the face of much conventional medical wisdom, which seeks to extend life through artificial means.
Here are some of the startling facts in the article:
- Nearly 8 in 10 Californians said that if they were seriously ill, they would want to speak with their doctor about end-of-life care. But fewer than 1 in 10 report having had a conversation, including just 13 percent of those 65 or older.
- 82% said that it is important to put their wishes in writing. Less than one-quarter have actually done so. More than half say they have not talked with a loved one about the kind of care they want at the end of life.
- 70% said they would prefer to die at home. But only 32% pass away in their homes, according to the California Department of Public Health.
The poll, conducted by the California Healthcare Foundation, showed that there is a serious gap between what people would like, and what they receive when it comes to their experience of the end of their lives.
The problem is worsened when there is any kind of language barrier between doctors and patients. One of Pallium India-USA‘s goals is to reduce these barriers, giving Indians living in the US a chance to put their wishes in writing, using an Advance Healthcare Directive.
What an amazing initiative!
23 chosen leaders from 11 countries got together at The Institute for Palliative Medicine in San Diego, California, USA with 10 mentors and several coaches, from 5 to 13 February 2012.
The brain child of Dr Kathleen Foley and Ms Mary Callaway of Open Society Foundations, and developed and run by Dr Frank Ferris of San Diego and team, the Leadership Development Initiative (LDI) is a novel two year program.
The leaders do not learn palliative care here; they have had plenty of that already. At San Diego, they develop leadership skills, an obviously essential part of training of any pioneer.
With four leaders and one mentor from India – the Indian flag was prominent!
Dr Frank Ferris (middle) with participants at the course, including Dr Dinesh Goswami, watching Dr Shoba Nair perform Bharatanatyam (right)
Where is San Diego ?
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…
Stories of end-of-life are often poignant, occasionally dramatic, and sometimes humorous.
This week, we spotted an article in the New York Times that encompassed all three.
Comedian Mike DeStefano, who died recently of a heart attack, told a story from his younger years that brought both tears and a smile to our faces.
His wife at the time was HIV+ (as was he) and was living out her final days at a hospice, connected to a morphine drip.
DeStefano himself was still healthy, and bought himself a Harley motorcycle. To his surprise, his wife wanted a ride on his new machine. At first, he hesitated. But when she insisted, he gave in.
[Dying] people, they feel ‘I’m alive.’ They pass away at one moment.
Until that moment, they are alive…
So he put her on the back of the motorcycle, first for a trip around the parking lot, and then onto the road. What happened next couldn’t be imagined.
And then I pass the front door, and all these nurses
are standing out front, and they’re all crying.They’re watching us, and they’re crying.
And I didn’t know why they were crying. I was like, Why are they crying?
I didn’t get what they were seeing. I didn’t know.
Because I was just in it; I was living it.
We won’t spoil the story any further, just go ahead and read it yourself:
The Lives They Lived: Uneasy Rider
- This story originally came from an audio podcast – for those who can tolerate the salty language – click here to listen…
