This is a painful message to write. I am writing about one of our colleagues, an American palliative care volunteer from San Jose, California. She has been helping Pallium India for many years in a variety of ways.
She was, in her own words, “absurdly healthy” till about 3 and a half months back. One day, when having a cup of coffee in a restaurant, a heavy lamp fell on the side of her head and her neck was twisted into an awkward position. About half an hour later, a pain started. She had significant stiffness of the neck and severe vertigo. She underwent several investigations, which seemed to have showed no significant anatomical abnormality. The vertigo was so bad that someone suggested a dental device for which she had to undergo an X-ray in an awkward position. The position was very painful for her and in less than a minute, she had a severe worsening of the pain. This happened about a month back and has been steadily getting worse.
When I saw her for the first time after this accident socially about a week back, I could not believe my eyes: she had lost 30 lbs already in 3 months. She was constantly in agonizing pain and was able to tolerate nothing but a supine position without movement. She was hardly able to eat because of constant nausea, her gall bladder seemed to be acting up and one doctor actually suggested gall bladder surgery at this stage, which fortunately she did not undergo.
Very recently she was seen at the Pain Medicine Department at one of the most prestigious medical institutions in USA. They suggested several means of treatment for the pain, including intravenous Lidocaine, local anesthetic injections for the muscles, followed by possibly Botox but all this would be possible only after a psychologist’s evaluation and a physiotherapist’s evaluation from their own team. Unfortunately, they can give her an appointment for these consultations only after three weeks, and it would cost her thousands of dollars from her own pocket. Till then, they cannot prescribe any analgesics for her; that, they say, is their policy. It is for her primary care physician to do it. Though in this case, the primary care physician has prescribed no analgesics. Both she and her husband have not been working for almost four months; they have had to spend a huge amount of money from their pocket and though they have a health insurance, these consultations were not covered by their insurance and that happened to be out of pocket expense.
Last Friday, after one week’s waiting time, she got an appointment with a pain physician in her own locality at 5.30 PM. He said his service mostly takes care of chronic pains, and not this kind of pain, yet was ready to treat her for the time being and gave a prescription. But a little while later, they found that the prescription could not be filled, because some number was missing on the prescription. Her husband rushed back to the doctor to find only that he had left for the weekend. Messages to him have not fetched any response. A return to the pharmacy did not yield any results – without getting the prescription corrected, the medicine would not be given.
Her husband will go back to the pain physician when the establishment reopens on Monday. She will be lucky if she responds to the prescribed medicine in that dose. If not, or if she feels any adverse side-effects, she has been warned that the pain physician may not be available to her for several days, till he can give her another appointment. The whole of the most expensive health care system in the world seems to be failing her and leaving her with no pain management at all.
Back home in Kerala in not-at-all-affluent India, our palliative care unit would take her care up immediately, pending definitive treatment for any problem or treatment by any pain specialist later. We would not be limited by questions like, “does she really come under the definition of palliative care?” For us, the fact that she has disease-related suffering would be enough. But still, just in case the question comes up, I would strongly argue that by any standards, she needs palliative care now, for palliative care by the WHO’s definition “is applicable early in the course of illness, in conjunction with other therapies”. I would point out to any sceptic who may be bound down by the expression “life-threatening illness” in the WHO definition of palliative car that her condition is indeed life threatening. Somebody who has lost 30 lbs in less than 4 months and who is now able to consume just about 100 calories per day is indeed in a life-threatened state.
I am making this appeal to anyone who cares. Can you contact a palliative care unit in San Jose or in the Bay Area in California? Would somebody please help her by treating her symptoms now and by coordinating her care of any basic problem that may be co-existing? You can contact me at firstname.lastname@example.org
Chairman, Pallium India
Director, WHO Collaborating Centre for Training and Policy on Access to Pain Relief
Arumana Hospital, Airport Road
Subash Nagar, Vallakadavu P.O
Thiruvananthapuram – 695 008
Ph: 0471-2451366, 9387296889
Ashley from Care & Share writes to us about the event:
Seattle Saptaswara is a non-profit troupe founded in 2009 with the mission to raise funds for deserving causes through musical events. Ganolsavam is their annual event to support Care & Share’s projects in Kerala. Around 40 people, including musicians and volunteers, worked close to 4 months in planning, practising and marketing for the grand success of Ganolsavam 2014. Combined, its an effort of more than 2000 hours! Being a huge supporter of quality palliative care, Care & Share has decided to spend all the funds raised to support Pallium India’s rehabilitation projects. Kudos to Saptaswara and Seattle crowd, your support and efforts will bring hope and comfort to a number of families. For more details please visit here.
A big Thank You to Care and Share, to Seattle Saptaswara and to the Seattle Malayali community!
Walk or Run 5K/10K /Half Marathon or Yoga 27/54/108 Sun Salutations in spirit of Seva on Sunday 22th June 2014, from 6:30am onwards at Baylands Park, Sunnyvale, CA.
Pallium India-USA is participating in this event and invites you all to join and contribute to the cause. To participate in the Sevathon Walkathon 2014, register here: Pallium India USA – Registration. If you are unable to participate in the walk or run, you can support Pallium India-USA’s work by going to:http://palliumindia.org/donate
Under the direction of Dr. VJ Periyakoil, Clinical Associate Professor of Medicine and Director, Stanford Palliative Care Education & Training, and Director, Stanford Hospice & Palliative Medicine Fellowship Program, the Program included a full day of training on July 26, 2013 in Successful Aging and End-of-Life Care. It also included training in ethnogeriatrics focused on Asian Indian and Chinese Americans.
“We knew that everyone would be creative, but we had never realized the extent to which they would do so,” said Dr. Periyakoil in her address to the graduating class. “It was wonderful seeing people reach into their own community and serve.”
The program culminated with mini-dissertation projects to build awareness among older adults of South Asian descent on healthy aging. These community-based projects included presentations on Bollywood dance, computer skills for seniors, effective communication with one’s physician, fall prevention, Indian Meals on Wheels, pet companionship, and Advance Health Care Directives to ensure end-of-life care wishes are respected.
Stanford’s Successful Aging Mini-Fellowship Program is a dynamic collaboration of educators and individuals committed to making a difference in our community, and a wonderful complement to the work of Pallium India-USA on issues of healthy aging and end-of-life care.
“This was an exemplary display of talent, skill and enthusiasm by our team members, and it demonstrated that much can be achieved by joint effort to serve the needs of our aging Indian community in a culturally sensitive manner,” said Pallium India-USA Founder and President Dr. Jerina Kapoor. “Thank you Dr. Periyakoil for inviting us. We learned a lot and hope to connect with our community with this knowledge.”
Congratulations to the 32 Pallium India-USA members receiving their Mini-Fellowship: Indira Anupindi, Asha Bajaj, Dinesh Bajaj, Abhay Bhushan, Cybele Bhushan, Ranjita Chakravarty, Kersi Daruwalla, Shilaja Deshpande, Sharvari Dixit, Gopi Godhwani, Lakhjinder Jauhal, Chandrika Kapadia, Jerina Kapoor, Anandi Krishnamurthy, Hema Kundargi, Sulochina Lulla, Meera Madan, Matra Majmundar, James Maloney, Rosaline Maloney, Rekha Marathe, Bhupen Mehta, Anoo Nathan, Radhika Padmanabhan, Zed Palkin, Smita Patel, Surjeet Patel, Sangita Seshadri, Alpana Sharma, Hetal Sheth, Priti Singh, Pushpa Sreeharsha.
Click HERE to view an album of the photos taken at the event.
– Written by: Pallium India-USA volunteers Smita Patel and Jay Maloney
The meeting celebrated the award of a mini–fellowship by Stanford University on Successful Aging and End of Life Care, a proud achievement for Pallium!
The meeting also developed goals and strategy for 2014 for Pallium India – USA. Pallium India – USA’s mission statement now reads ‘Healthy Aging and a life with Compassionate Care and Dignity for the South Asian community living with serious or advanced illnesses, whether in USA or India’.
Participants had a wonderful opportunity to listen to a motivational talk by Swami Prasannatmanandaji on the subject of ‘Aging and Spirituality’. He shared some inspiring thoughts and there was good dialogue. Swamiji said “Don’t believe that you are serving others, you are privileged that they are giving you the opportunity to serve”