October 2016 Newsletter
Dr M. R. Rajagopal writes:
Our dear Jo, Professor Jo Eland, is no more.
She came into our lives, sprinkled love abundantly, conquered our hearts and now she is gone. She died in the morning of the 25th of September, 2016.
In December 2009, she led a group of young students from Iowa to us on a cultural immersion program. And slid beautifully into our lives. She faced problems; Lord, plenty of them; and taught us a lesson in equanimity in the way she dealt with them. And thereafter she would come at the end of every year, a new flock with her to whom as well as to us she gave of her love in abundance.
Initially for me, she was just a loving Professor of Nursing; but I did not know much about her. Then while attending a discussion at a meeting in New York I heard one of the participants speaking about a landmark study by one Professor Eland! I looked her up, and sure enough, there it was, the pioneering work on pain in children. And that was not the only time. Her name would pop up in discussions in various parts of the world, almost unfailingly whenever pain in children was discussed.
An avid photographer, she would capture things that most of us would never see. If you would like to see a sample, go to http://joeland.smugmug.com/Outside-the-United-States/India-20132014
As a mentor, if there was a problem somewhere, Jo would quietly find and fix it. I remember once, soon after their arrival in Trivandrum, the girls in the group all went on an excited shopping spree – except one who had no money. She had scraped together enough to come on the trip, but had none left for luxuries like shopping. Jo pressed some money into her hands and made sure that she had as much fun as the others.
For all of us, end of December every year was a time to wait for Jo and her new team. And then one year, she wrote that she had cancer. “But I will be there”, she assured us. She would manage the three weeks with us in between chemotherapy sessions. And she continued to come every year. Two years back she introduced Dr Ann Broderick to us with the team. In her thoughtful way, I now realise, she was ensuring that the visits and the mentoring will continue.
Dear Jo, you have taught me acceptance with courage. You dealt with the inevitable end as philosophically as the disease and treatment. We will miss you Jo; we will miss you a lot.
If there is a somewhere out there, I shall see you there. Until then, let me hold you in my heart, dear friend.
We keep coming across patients who consume “ordinary” painkillers and get into life-threatening problems.
Ibuprofen, Diclofenac, Aceclofenac, Piroxicam and many other NSAIDs (Non-steroidal anti-inflammatory drugs) can have serious consequences if the prescribed dose is exceeded or if they are taken in situations where there is risk of kidney disease, bleeding or erosions in the stomach wall. And this becomes particularly dangerous as mosquito-borne viral fevers are becoming rampant. See the news in Times of India of Sep 16, 2016. (Thank you Mr Hamza for calling this to our attention).
This is not to advise anyone to avoid all pain medicines.
Pain itself can be harmful. This is only to remind everyone that unlike the much-feared oral morphine which is very unlikely to result in life-threatening situations, inappropriate consumption of NSAIDs can be dangerous. (Well, that is certainly not to say that oral morphine is recommended in these viral fevers either. It is not).
So what should one do?
- Take pain-killers only on doctors’ advice.
- Avoid NSAIDs beyond the prescribed dose.
- Take a medicine that your doctor would prescribe to avoid stomach trouble whenever you are taking NSAIDs.
- Avoid NSAIDs in any situation when there is not enough water in the body (like when one has vomiting or diarrhoea, or when one is unable to drink enough water).
- Avoid NSAIDs in any situation in which the kidney is not functioning properly.
- Avoid NSAIDs in presence of any tendency for bleeding.
In a renewed effort to gain for all of us the right to live with dignity even with disease (and to die with dignity too), a group of people got together on 18 September 2016 at Changampuzha Mandiram, Sahitya Academy, Thrissur to discuss Government of India’s draft law for protection of terminally ill patients and medical practitioners. There was active participation in the proceedings by patients, family members, doctors and several interested others.
The event was organised under the joint auspices of the Pain and Palliative Care Society Thrissur, Pallium India and Indian Association of Palliative Care (Kerala).
The participants demanded that the draft law must be amended to ensure the following:
- Any advance directive (living will) made by a competent person in accordance with the provisions laid down in this law must be binding on the medical system.
- Those who decide against artificial life support must be offered palliative care by the medical system, and
- The provision in the draft law for having to approach the high court for permission to withdraw life support must be removed in favour of more practical provision for decision by institutional ethics committee.
“It was heaven to feel the waves on my feet. I shall never forget this,” said a person on a wheelchair, who, since her spinal cord injury, had never been able to see the sea again. We had made it happen on a World Palliative Care Day.
This year again, we are organizing a get-together for the people we care for and their families on October 8, 2016, at Shanghumugham Beach, Trivandrum.
A trip to the beach for some of you would be just a matter of finding the time. For many others, it could be a once-in-a-lifetime experience.
Can you help?
For each patient and family the expense estimated (for food and a gift) is ₹900 (US $15). Please donate whatever you can to make this event a happy one for our patients and their families.
World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world. The theme for this year’s World Palliative Care Day is ‘Living and Dying in Pain: It doesn’t have to happen.’
The aims of the World Hospice and Palliative Care Day are to increase the availability of hospice and palliative care throughout the world by creating opportunities to speak out about the issues; to raise awareness and understanding of the needs – medical, social, practical, spiritual – of people living with a life limiting illness and their families; and to raise funds to support and develop hospice and palliative care services around the world.
For more details on how you can help, please contact us: firstname.lastname@example.org / 97467 45502
16 pan-India organizations committed to NCD prevention and control have got together to form the Healthy India Alliance.
Do please visit the alliance’s new website http://healthyindiaalliance.org/ which has been launched on World Heart Day, the 29th of September 2016.
Pallium India is proud to be a member of this truly healthy alliance!
It was Pallium India’s privilege to do a half day workshop on palliative care for the members of Indian Cancer Society, Delhi on Sunday, 25 September 2016. What a positive feel! It is certainly heartening that focus on quality of life is growing in all circles associated with cancer- whether it be oncologists or other palliative care activists.
Kudos to the group! One third of the audience seemed to be cancel survivors. These people have lived it; they know all the nuances of suffering in cancer and they make beautiful things to come out of their experience. Thank you for all you do, ICS Delhi. We shall look forward to working with you!
- Organization: Pallium India
- Job Title: Palliative Care Physician
- No. of Requirements: 1 (Nos.)
- Nature of Job: Permanent – Full Time
- Remuneration: Depends on candidates’ KSA’s
- Place of Job: Pallium India Trust, Arumana Hospital Building, Eanchakkal-West Fort Road, Vallakadavu P.O., Trivandrum
As a Palliative Care Physician,
- Provide symptom management, pain relief and supportive care for the patient in inpatient care, outpatient clinic and home based care.
- Facilitate clarification of patient and family goals of care.
- Facilitate information sharing and decision making regarding patient care.
- In addition to providing expert symptom management, as a palliative care physician you need to devote time to intensive family meetings, ensure coordinated care across health care settings, link patients and family members to support groups and other services and improve access to information so patients can make confident, well-informed decisions about their care.
- Consult with fellow physicians and the interdisciplinary team in establishing a written plan of care at intervals specified in the plan.
- Adhere to the practice of confidentiality regarding patients, families, staff, and the organization.
- Assist in the development of standards of care and practice.
- Participate first and organise academic sessions and training programs for skill development.
- Facilitate and participate awareness campaigns in the community.
- Collaborate with similar Palliative care organisations and oncology community to create awareness and advocate for palliative care in India and overseas.
- Undertake and guide research and projects in the field of Palliative care.
- Any other duties assigned by the reporting authorities.
Qualification: M.B.B.S (Full-Time) from a recognized university
Experience: > 2 years
Interested candidates can send detailed and updated CV at email@example.com – Please mention “Application for Palliative Care Physician” in the subject.
For more details, Contact: Arathy V Nair +91 9746745501
The 24th International Conference of the Indian Association of Palliative Care will be held at the CODISSIA in Coimbatore, Tamil Nadu from 10 to 12 February, 2017. The conference is being jointly organised by the G. Kuppuswamy Naidu Memorial Hospital and Coimbatore Cancer Care Foundation Trust.
- The aim of this conference is to “ADD VALUE” to
- AWARENESS: Increasing awareness amongst the public and health care providers is the key to deliver Palliative Care to all who need it.
- LEARNING: It is essential that health care providers, community and family engage and learn to Care.
- DECIDING RIGHT: Right decisions made at the right time ensures patient centred care. “It’s your life, it’s your choice”
- CARE UNTIL THE END: Palliative Care is a human right and it has to be made available to all until the very end.
Visit the conference website to register and to submit abstracts.
Let’s train ourselves in Palliative care because Death does not respect our wealth or social standing and because it’s Everyone’s Business.
A lot of patients suffering from life-limiting diseases like cancer, stroke, chronic renal failure etc. can benefit from palliative care services. However, most people needing palliative care and pain relief in North India live and die without access to this service. Many of the dying patients are unable to reach hospitals and die in untrained hands at home.
In an effort to bring palliative care to the needy by developing a strong institutional back up and extensive trained community support, Ganga Prem Hospice, Rishikesh invites applications from interested candidates for a certificate course on the Essentials of Palliative Care.
Click here to download the application form for Certificate Course in Essentials of Palliative Care (Certified by Indian Association for Palliative care) organized by Ganga Prem Hospice.
About the Course
Date: 26-28 Nov 2016
Venue: Seema Dental College, Rishikesh.
Last date to submit the application: 20th October, 2016
Pallium India has collaborated with Pramukhswamy Medical College, Anand, Gujarat, to start a palliative care centre.
Dr Prabhakaran Nair, Project Head, Pallium India, writes:
“At Pramukhswamy Medical College, Karamsad, Anand, I attended the anniversary celebrations of their cancer center and had the opportunity to meet and discuss palliative care with Smt Amrita Patel, the Chairperson of the Trust, Dean Dr Utpala Kharod and many of the faculty in Oncology and Neurology who regularly refer patients to the palliative care center. Smt Patel was all praise for the effectiveness of palliative care in the service of chronic patients. She offered all support to this venture. We would like to express our gratitude to her.
The committed services of Dr Alpa Patel, Dr Dinesh Kumar, Dr Shyam and Dr Namrata along with Ms Rekha Mcwan has helped the center to present good results.”
During the last few years, Pallium India had helped establish a palliative care centre in Jamnagar, Gujarat and also to upgrade the palliative care centre in GCRI, Ahmedabad to a training centre with financial support from Pallium India-USA.
We know the pioneers in those institutions as well as Rekha, Alpa, Dinesh, Shyam and Namrata will keep expanding the services to reach out to the rest of the state. We are fortunate to have these sincere committed colleagues. Best wishes, friends.
Hon’ble Health Minister of HP, Shri Kaul Singh Thakur formally inaugurated the new palliative care service in Dr Rajendra Prasad Government Medical College, Kangra, Tanda, Himachal Pradesh.
Funded by Tata Trust, this is a new collaborative venture between Pallium India and RP Government Medical College. Congratulations Dr Parveen Sharma and team.
By Mekhala Dave, Youth Ki Awaaz
Walking into a hospital has never been stress-free. There is a repertoire of people, gushing in and out, with grim and soul-numbing faces. 70% of the patients are devoured with life-threatening diseases, incurable and agonising. Most of them are at advanced stages, proximity to the precipice of life’s departure is nearer.
How long will they survive is a bearing inquiry, like many, I have often deliberated for loved ones. There are no answers conclusively and days, as numbers, begin to decline to the mortality of facts. The disease spreads within every crumb of the patient’s mental and physical sanity. Out of 70% of the patients, only less than 4% receive treatment for their immeasurable pain.
Life threatening diseases are not a personal experience as patients are attached to families and hinge on the support of the health care system. But patients march an ensuing battle with the fallacies and inconsistencies of the system. Tactics of consumerism is even more ubiquitous, today, fogged in our limited senses to recognise the actual reality. The underlying perilous pharmaceutical market and government establishments have agendas for their self-interests. Consumerism favors the established, like harsh prescriptions to incorrigible wounds. Precious knowledge of medical jargon is kept from citizens as there is often misguidance and an absence of transparency, mangled into the space of existing hospital structure that cannot be envisaged or broken through. We are pushed into an adversarial front, between them and patients along with care givers, in the pit of survival of the fittest.
By The Hindu
Two years after palliative care centres were set up in eight of Maharashtra’s most backward districts to cater to patients with incurable medical conditions and acute pain, the project has hit a roadblock: six of these centres have been without doctors for six months now.
While nurses and medical social workers are available, they are not palliative care specialists and, more importantly, cannot prescribe the pain-relieving morphine. Also, five of these centres hold the licence for morphine but only three have it in stock.
The centres, set up in 2014 as part of the National Palliative Care Policy, offer both in-patient and out-patient services. They were a boon for the 970 cancer patients registered with them, saving them the trip to the Tata Memorial Hospital in Mumbai for morphine. In all, 21,638 patients are registered with these centres at Amravati, Chandrapur, Gadchiroli, Wardha, Nandurbar, Satara, Washim and Bhandara.
By The Hindu
Although the Union government amended the Narcotic Drugs and Psychotropic Substances (NDPS) Act, 1985 in 2014 to relax restrictions on the procurement and sale of morphine, terminally ill patients in the State are still dependent only on Kidwai Memorial Institute of Oncology for the “magic medicine”.
Now, raising hopes of hundreds of patients who require oral morphine, the State government’s Palliative Care Policy is aimed at making the medicine available for free in all government healthcare centres.
Nearly 100 patients from across the State come to Kidwai institute in Bengaluru every month to collect the medicine. Also, with morphine in the solution form available only in Kidwai in the country, patients from other States also come to the institute as taking the pain relieving medicine in the solution form is easier than consuming it in the tablet form.
- October 8, 2016: World Hospice and Palliative Care Day: Get-together of patients and families at Trivandrum
- October 30, 2016: Musical Night featuring M. Jayachandran and team, at Kochi, Kerala
- November 7, 2016: 6 weeks certificate course for doctors and nurses at Trivandrum, Kerala. Contact: firstname.lastname@example.org
- November 7, 2016: 1 month Certificate Course in Palliative Medicine for doctors and nurses at Hyderabad, Telengana. Contact: email@example.com
- November 14, 2016: Six weeks certificate course for doctors and nurses in Ahmedabad, Gujarat. Contact: firstname.lastname@example.org
For details, contact: 9746745502 / email@example.com. Find out more about our courses at: http://palliumindia.org/courses/
Palliative care – and lack of it – in media in India again. Thank you Priyanka Verma, for the report.
Top 5 Bollywood films about palliative care
By Jean Jacob
I recently came across a top 10 list of Hollywood films about palliative care. Despite being a palliative care physician and a movie lover, there was only one movie on the list that I had even heard about. This is hardly surprising considering no one would make a summer blockbuster on such dark subject matter. I figured that if we don’t support these movies, no one else will either. So I made a note to watch one film from the list every weekend. It also got me thinking about Indian films that depict palliative care issues like living with life-limiting illnesses, end of life conversations, and the dying process.
I asked my colleagues in the department of palliative care at MNJ Institute of Oncology in Hyderabad to name their favorite Indian films that realistically portray the issues we deal with at work every day. There weren’t many we could think of. Either there aren’t enough films being made about quality of life and death in India or we aren’t watching those kinds of films. One of my colleagues said she spends all day dealing with death and dying and she wanted an escape from all that when she watched a movie. Doesn’t watching a light comedy seem more appealing? Probably. But there are some arguments for watching movies about palliative care too.
Movies are considered as cultural artifacts. The type of movies we make and the type of movies we watch says a lot about us as a society. They are a mirror to our collective psyche. Films also influence the conversations we have in our homes and across the country. When Deepika Padukone said in an interview that she suffered from depression, the whole country started talking about mental health. If Salman Khan took off his shirt and shouted “Mujhe palliative care chahiye!” (I want palliative care) it would echo louder and for longer in the hearts and minds of the aam janta than all our awareness campaigns and advocacy efforts put together. If we want to encourage conversations about the futility of life-prolonging treatments or the ethics of mercy killing, then watching (and getting others to watch) movies that depict those conversations is one way to do it.
I decided to make a list of top 10 Indian films about palliative care. But then I realized two things. Firstly, we couldn’t come up with ten or eight or even six Indian movies about terminal illness or dying with dignity or the grieving family. Secondly, the movies we could name were all in Hindi, and it wasn’t fair to call such a list as Indian. So I present to you this list of Top 5 Bollywood films about palliative care (Spoiler alert!)
- Anand (1971): Directed by Hrishikesh Mukherjee and starring Rajesh Khanna and Amitabh Bachchan. Rajesh Khanna’s portrayal of a terminally ill cancer patient who didn’t wish to spend his last days confined to a hospital bed was nuanced and ahead of its time. With his constant desire to be happy and make others happy, even in the face of impending death, the character of Anand asked us all questions about quality of life and facing our own mortality. Amitabh Bachchan as the young oncologist coming to terms with the limitations of chemotherapy was also relatable.
- Munna Bhai M.B.B.S. (2003): Directed by Rajkumar Hirani and starring Sanjay Dutt as a criminal who joined a medical college because it was his father’s dream that his son become a doctor, this film won the national award for best popular film. Sanjay Dutt’s character, loosely based on Patch Adams, foregoes the paternalistic model of doctor-patient relationships in favor of the “jadoo ki jhappi” model which embodies the idea of compassionate care. The way he communicated with a comatose patient named Anand who the other doctors ignore, talking to him as if they were having a normal conversation, is a great example of how we should treat patients with delirium. When Zaheer, a terminally ill cancer patient, felt depressed, they arranged dancing girls to cheer him up. If that isn’t treating psychosocial symptoms and improving quality of life, then what is?!
- Guzaarish (2010): Directed by Sanjay Leela Bhansali, this film starred Hrithik Roshan as a quadriplegic former magician who petitioned the court for euthanasia as his health deteriorated and he faced the prospect of being admitted into an ICU for futile treatments. The court rejected the plea, but a home nurse (played by Aishwarya Rai) agreed to assist him in his suicide. They held a farewell party where all his friends and family got together to hug him one last time and the movie ended with a shot of a laughing Hrithik Roshan, implying that his wish for a dignified death would be fulfilled. The theme of the movie is relevant today as a new Euthanasia bill is being drafted in India and the country is debating the ethical dilemmas involved.
- Piku (2015): Directed by Shoojit Sircar and starring Amitabh Bachchan and Deepika Padukone. Amitabh Bachchan won a national award for best actor for his portrayal of an eccentric elderly man with chronic constipation who irritated his relatives with his idiosyncrasies. The film depicted how a father’s poorly controlled physical symptoms could impact his relations with his daughter and also how frustrating this daily routine of caring and supporting could be for the daughter. In the end, the long-standing constipation problem got solved with some dietary and life style modifications and when the character of Amitabh Bachchan passed away in his sleep, his daughter remarked that he always wanted a peaceful death.
- Waiting (2015): Directed by Anu Menon and starring Naseeruddin Shah and Kalki Koechlin. The two main leads of this film form an unlikely pair, two souls caught in limbo between living and grieving a loss. They spend their days and nights waiting outside an ICU where their comatose spouses are admitted and connected to ventilators. The character played by Shah doesn’t want to let go of his wife of many years and the character played by Koechlin doesn’t know whether her husband of a few weeks would have wanted a risky brain surgery that may leave him paralyzed. The film talks about patient autonomy and medical decision-making and also about how difficult it can be to let go.
So this was our list of top 5 Bollywood films about palliative care, presented in chronological order. Do you agree with it? If you know of other Hindi films that deal with this subject or films in any regional language that depict palliative care issues, please mention it in the comments below or write to us directly so that we can prepare a truly Indian list of films about palliative care!
(The writer is a palliative care physician working in Hyderabad. He wants to acknowledge the inputs he received while making this list from Dr. Gayatri Palat and others in the palliative care department at MNJ Institute of Oncology. Write to him at firstname.lastname@example.org)
By eHospice UK
Older people are missing out on palliative care because healthcare professionals can find it difficult to know when to introduce this approach in older people, according to a new report from the University of Edinburgh and Marie Curie.
By examining the end of life experiences of 65 patients in Scotland, researchers from the University of Edinburgh identified that palliative care was often not accessed by this group either because patients were not aware of this type of support and/or healthcare professional did not think it relevant for their patients.
Among older people there is often a lack of a clear diagnosis of dying – people are viewed merely as ‘old’ or ‘infirm’ – meaning that there is no obvious ‘trigger’ for healthcare professionals to make a referral to palliative care, despite the benefits this approach could offer.
We welcome international visitors at Pallium India and appreciate the support from our colleagues around the world. We request that you contact us at least 2 weeks prior to your visit so that we can make the necessary arrangements. Sorry; we would discourage “drop-ins” for fear of the impact on patient care.
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: email@example.com
Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum
For more details, please visit: http://palliumindia.org/info-centre/
“First of all, I feel very loved”
“I asked the physician with whom I was working to ask the patient what he most valued about the visits from the palliative care team. His response captured the essence of humanism in cancer care; translated from Malayalam, he stated simply, “First of all, I feel very loved””.
Read the article by Dr Christopher Booth in the Journal of Global Oncology about his experiences in RCC and in Pallium India, Trivandrum.
posted by palliumindia in Newsletter