August 2017 Newsletter
“If I had a choice, I would opt to walk again. But it is also true that my life in a wheelchair for the last few years has been more worthwhile than that of the 28 years when I could walk”, said Ashla Rani, addressing a public meeting at Kochi last year.
That “worthwhile work” as volunteer with Pallium India made Ashla one of the winners of Kerala Youth Commission’s Youth Icon award 2017. Ashla has been selected under the category “Social Service”.
Ashla Rani joined Pallium India in 2014 as executive assistant to Pallium India’s Chairman. Currently she also works for Pallium India’s educational support program for children of poor patients, and provides emotional support and counselling to people who are in the throes of depression and loneliness. She also leads a campaign to make Trivandrum city wheelchair friendly.
The youth icon award will be presented to Ashla Rani and the winners of other categories by the Chief Minister Pinarayi Vijayan at Trivandrum on August 1.
Congratulations, dear Ashla, and thank you for everything you do.
In 2015, The Economist Intelligence Unit published the Quality of Death Index in which, out of 80 countries studied, India had ranked one of the worst 15 countries to die in.
Now, in a new study published by The Economist Intelligence Unit on Global Access to Healthcare, India finds itself among the worst 10 in equity of access to health care.
This report looks into how healthcare systems across 60 countries are working to offer solutions to the most pressing healthcare needs of their populations.
The key findings are:
- Political will and a social compact are prerequisites for both access and sustainable health systems.
- Public investment underpins good access and demonstrates the commitment of governments to ensuring the health of their populations
- Universal coverage does not mean universal access, but extending universal health coverage (UHC) can be a crucial part of improving access.
Two very important aspects of elder care are coming into focus in UN Working Group on Ageing. They are the mutually related areas of “palliative care” and “autonomy and independence”.
Thank you, Katherine Pettus, for bringing this to our attention.
“Hippocratic: 18 Experiments in Gently Shaking the World” featuring Dr M. R. Rajagopal will be released on World Palliative Care Day, Oct 14, 2017.
Hippocratic is a feature-length film exploring the life story of this acclaimed Indian pain & palliative care physician, Dr M. R. Rajagopal. This is a must-see documentary for all those interested in the power of the human spirit, human rights and social justice. It is essential viewing for anyone working in health care, medicine, nursing and public health.
Thank you, Mike Hill, Sue Collins and Moonshine Agency, for this wonderful tribute to our Founder-Chairman and for bringing the course of palliative care in India to the eyes of the world.
In response to Pallium India’s newsletter of July 2017, Prof. June L. Dahl, Professor Emerita of Neuroscience, University of Wisconsin School of Medicine & Public Health, Madison, Wisconsin, writes to us:
I know it is common to refer to short-acting opioids as immediate release opioids. I believe drug companies coined the term ‘immediate release’ to distinguish the older (short-acting) drugs from the opioids that are specially formulated to provide a long duration of effect. The opioid is slowly released from those oral formulations. But short-acting opioids are not immediately released – it takes 45 minutes to an hour to achieve analgesic blood levels after ingestion of morphine sulfate, hydrocodone, hydromorphone or oxycodone tablets. That is not indicative of immediate release of these opioids. There are oral transmucosal delivery formulations of fentanyl that do provide more immediate release of fentanyl and a shorter duration of action than is characteristic of morphine, hydromorphone, hydrocodone or oxycodone tablets.
Knowledge of the pharmacokinetics of opioids is essential to the wise use of these drugs. I am wondering what clinicians expect from so-called immediate release formulations of opioid analgesics? Surely they can’t expect quick onset of action. Why can’t one use the accurate term to describe the short-acting drugs?
Thank you, Prof June Dahl, for pointing out to us that the use of the term ‘immediate release’ can be misleading.
Sajan Antony, Social Worker at Pallium India writes:
“Music is the mediator between the spiritual and sensual life” – Beethoven
On World Music Day, 21 June 2017, Pallium India conducted a program for the residents of our inpatient centre – live music to ease suffering.
We are grateful to Raji Vishwanathan, who volunteered to perform for our patients and their families. The keerthanam she rendered enthralled her audience. She was met with requests for encore, while others sang light music and keerthanams. My colleague Reshma and I joined them. Reshma, though not a trained singer, delighted us with her rendering of a beautiful keerthanam. Everyone smiled and swayed to the music, forgetting their troubles for a while. What a wonderful way to relieve pain and suffering!
Thank you Raji Vishwanathan, for taking the initiative. We look forward to starting more such activities.
“I ride a tricycle. When I seek help, people either ignore it or make nasty comments. It is a painful experience. I once had to hire head load workers to carry me down from an auto rickshaw while visiting a government hospital. Even the pension for the disabled is not given on time.”
These are the words of Aji, a differently-abled person who makes a living by making handicrafts from recycled materials and working as a cobbler. Aji was one of the ten people on wheelchairs who had put up their products for sale at the Saphalyam Complex, Trivandrum on July 7, 8, 9. The program was inaugurated by G. Shankar, Director of Habitat Group. Read the report in The New Indian Express.
Ninsy Mariam Mondly, an artist on a wheelchair, enthralled visitors with her paintings. Preetha, who makes beautiful jewellery, Sindhu, who creates paper bags and lotions, Ambika who makes pillow covers, table clothes and towels, and Mohanan who makes knives, were some of the others whose products were on sale at the event.
We thank TRIDA executives and Pallium India’s staff, volunteers and well-wishers for making this program a huge success.
If you are interested in purchasing any of the products mentioned above, please write to us: firstname.lastname@example.org
Video of the Month: A touching video from WION: don’t miss it.
Manju has cancer. She and her husband have moved from their faraway village to Delhi for treatment. Manju talks about her concerns: small children, their education; their future. The husband adds that the dad and mom and the younger brother are all ill. He will have to get through Manju’s treatment, and go back to the village and sort it all out. He adds with a faint smile, “All I can say is, let us keep smiling. Try to be happy. The happier you are, the more effective the treatment”.
How can you help getting inspired by the simple wisdom of that man! Or from the laughing children with cancer!
Watch Priyanka Verma’s show above or on WION – http://www.wionews.com/videos/changing-india-ep-14-palliative-care-in-india-4077
Ours being a democratic country, each one of us is responsible for the sorry state of needless suffering in the country due to lack palliative care services.
Addressing Emotional and Spiritual Suffering
Alex Pierce, one of the three visitors Pallium India had for a month of palliative care training through Child Family Health International (CFHI), spoke about his experience, towards the end of the program.
“Last week at home visits, Dr Annamma sat down with a patient, held his hand and talked to him as a person before she started a physical examination.
During the consultation, the man mentioned his loneliness. Dr Annamma joined the man in prayer. These are not things that I am used to seeing in healthcare.
There is cancer in my family. It is good and reassuring to see there is a healthcare system that addresses emotional and spiritual suffering like this. On a personal level, I shall remember to listen more when there is illness in the family.”
The WHPCA has announced the theme of this year’s World Hospice and Palliative Care Day:
“Universal Health Coverage and Palliative Care: Don’t leave those suffering behind”!
It falls on 14 October 2017 (2nd Saturday of October).
Please see the WHPCA website for more information:
Children’s education program – you can help!
Pallium India supports the education of children from families ravaged by disease. Many of them were on the verge of dropping out of school owing to financial difficulties. This year, Pallium India supports the education of 300 students (upto +2). The average fee (including tuition & transport) is estimated to be ₹7,500 per child, this year. We need your assistance to meet the expense.
Can you help?
Our target is to raise ₹5,00,000 by July 15th, 2017.
Whatever you donate, however small an amount it may seem, would go a long way in reaching our goal.
You can donate online, or through NEFT, or via demand draft. Let us know that your donation is for “Children’s Education Program”. Please visit this link for details: http://palliumindia.org/donate/
In case of queries, please contact us: email@example.com / 9746745497
(Image: Kuttikkoottam Summer Camp for children, April 2017)
The money you give will pay for essential free medicines for the poor, for their travel to the clinic or for schooling of their children, or other forms of care. Please give whatever you can. No amount is too small.
To donate, please visit: palliumindia.org/donate
Write to us: firstname.lastname@example.org / 9746745497
How to deal with death at home
By Jean Jacob
“What should I do after he passes away? I mean…the practicalities. How do I deal with the dead body at home?”
It was this question, put to me by the son of a patient whose home we were visiting in Hyderabad, India, that inspired me to write this article. The patient was an elderly gentleman with a terminal medical condition. We were there to offer the patient and the family, palliative care.
One of the services provided by palliative care, a medical specialty that deals with life-limiting and terminal illnesses, is to plan for a good death. This involves providing supportive care to the patient and relief from pain and other symptoms (at home or in the hospital, as per the patient’s choice), and also providing support to the family during the last days of the patient’s life and beyond death, to assist the family with the practical arrangements that need to be made and to provide bereavement care.
If a patient’s last wish is to die at home, then we want to support the family through that process with the necessary information and guidance.
As our palliative care service is based in Hyderabad, I can tell you how it works here. The first thing you need to do is to get a doctor that lives nearby (or call for one from a hospital nearby) to come and confirm the death. It would be a good idea to find this doctor beforehand and inform them that you have a dying relative at home. Request the doctor to provide you with a written record of the time and date of death (and probable cause if it is a known life-limiting illness like cancer, heart disease etc.) on their official letterhead. Next, you need to decide whether you are going to move the body right away or whether you need to wait for relatives to come. In the latter case, you can rent a freezer box to preserve the body at home till you are ready to transport it to the cremation or burial ground. This will cost around ₹3000 per day, and you can find the contact for dead body freezer box rentals on Google. You can also contact our palliative care society for details on freezer box and hearse services.
When you are ready to move the body from home, you need to make contact with the nearest cremation or burial ground, as per the religious beliefs of the deceased. For Hindus, there are Smashana Vatikas that will take care of cremation (electric or wooden) at a cost of around ₹4000. Additional puja services can cost between ₹10,000 to 20,000. For Muslims, contact the nearest Kabristan. The burial will cost around ₹4000, which is labor charge for the grave diggers. Christians will have church memberships that include right of burial on church grounds, and for those who don’t have such a membership, certain churches may allow for funeral services at a cost of around ₹3000. Call and inform the facility beforehand so arrangements can be made.
Carry the Aadhaar card or other identity proof of the deceased and the doctor’s death declaration with you and at the end of the funeral service collect a receipt of cremation or burial from the facility. This receipt, the doctor’s declaration, and copy of the identity proof of the deceased need to be submitted at the nearest Greater Hyderabad Municipal Corporation (GHMC) office. In addition, you will need to submit copies of your own Aadhaar card and of the electricity bill as address proof. In 2-3 weeks, the death certificate will be available on e-Seva online.
Dealing with the death of a loved one is something difficult that we all have to go through in life. This article describes the practicalities of how to deal with death at home in Hyderabad. It is reasonable to suppose that this protocol can be used in other cities and towns in India. For help with this and other aspects of care for a loved one at the end of life, contact your nearest palliative care service. If you are in Hyderabad, reach out to us: email@example.com or +91-9177238901.
The author is a palliative care physician employed by Two Worlds Cancer Collaboration, Canada, and working with the Pain Relief and Palliative Care Society (PRPCS) in Hyderabad. He can be contacted at firstname.lastname@example.org.
A short version of this article was published by Deccan Chronicle.
Aug 11, 2017: ICRA Pain 2017 (International Conference on Recent Advances in Pain), Hotel Hyatt Regency, Pune. Theme: “From Tears to Cheers”. Visit: http://www.icra-pain2017.com/ Contact: email@example.com
Aug 18, 19, 20: Volunteers’ Training Program in Trivandrum. Contact: 9746745497 / firstname.lastname@example.org
Sep 4, 2017: One month certificate course in Pain and Palliative Medicine for Doctors, Nurses, Social Workers and Volunteers in Hyderabad, Telengana. Contact: email@example.com
Sep 6, 2017: 6 week certificate course in Palliative Medicine/nursing for Doctors and nurses at Trivandrum, Kerala. Contact: firstname.lastname@example.org
Sep 6, 2017: 10 days Foundation course in Palliative Medicine for doctors in Trivandrum, Kerala. Contact: email@example.com
October 14, 2017: International conference on Peri-operative Cancer Care at Jawaharlal Nehru Auditorium, AIIMS, New Delhi. Register: http://www.irchoncoanaesthesia.com/
Feb 23, 2018: IAPCON 2018, Jawaharlal Auditorium, AIIMS, New Delhi. Visit: http://www.iapcon2018.com/
Pallium India’s Facebook page has over 5000 Likes. We regularly post articles related to palliative care from around the world.
We’re also on Twitter: @palliumindia
Contact Pallium India’s Information Centre (9 am to 12 noon) for information related to palliative care and about establishments where such facilities are available in India.
Telephone: +91-9746745497 or E-mail: firstname.lastname@example.org
Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum
For more details, please visit: http://palliumindia.org/info-centre/
By Ana Luísa Pereira and Tania Chalton
“By its fruits one knows the tree.” – Brazilian proverb
It is important to talk about this tree. As visitors that came from far, it is inspiring to see Pallium India’s patients and families – it is not an overstatement to say how much your work brings them answers, respect, relief and orientation. In the storm of pain and disease there is a safe harbor.
We don’t need to know more than three words in Malayalam* to see that.
Pallium’s fruits speak for themselves.
The tree is growing, not only providing shelter to so many different patients and families but also welcoming those who want to learn and improve palliative care worldwide.
The nurses are in the roots, the body and branches of this tree. They go way beyond care and comfort and holding hands and bringing a smile.
In every shift, in every visit, you carry in your arms the responsibility of one of the most rewarding jobs in world, navigating the system and crossing the shadows of suffering.
We won’t talk about holding hands. The celebration goes to the arms. You hold hands but your arms are arms. Arms that fight for those who can’t fight for themselves. Arms that hold, relieve, change. Arms that tell, hear and prepare. Arms that learn, teach and grow. Not just the hands, the holding of hands.
You, nurses, are the engineers that balance art and science by the bedside of the patient. In a room or a ward. In a corridor or in a street. At a meeting or a conference.
We celebrate the nurses of yesterday and the nurses of tomorrow. The nurses that know and the nurses that learn. The nurses that do and the nurses that teach.
So raise your arms and keep your fight so inspiring.
*Important note: We know more than three words in Malayalam.
Ana (physician) and Tania (nurse) are volunteers who visited Pallium India in May 2017.
posted by palliumindia in Newsletter