April 2017 Newsletter
The Government of India has announced the National Health Policy 2017. We are so happy to note that many hopes of the palliative care fraternity have found a place in the document.
Some major features relevant to palliative care are:
- Healthcare Spending by the Government would double – to 2.5% of GDP by the year 2025.
- The objectives mention specifically, “Improve health status through concerted policy action in all sectors and expand preventive, promotive, curative, palliative and rehabilitative services provided through the public health sector with focus on quality.”
- Community or home-based palliative care is included among the responsibilities of frontline health workers.
- Palliative care is mentioned as 1 essential feature of primary health care.
- In child and adolescent’s health, district hospitals have been specifically asked to provide palliative care.
- The policy recognizes the growing need for palliative and rehabilitative care for all geriatric illnesses and advocates for continuity of care across all levels.
- It recommends starting specialised nursing training courses in areas including “palliative care and care of the terminally ill”.
- In primary health care, particularly in urban health care, health and wellness centres are to be developed and they are to include palliative care.
- Right to healthcare is mentioned as covering ‘a wide canvas, encompassing issues of preventive, curative, rehabilitative and palliative healthcare across rural and urban areas’,
- In school health, incorporation of health education as part of curriculum is mentioned.
- The policy recommends integration of medical and paramedical education with service delivery systems.
There are some disappointments, however. Representation to the government regarding the National health policy had also emphasised the need to include palliative care into the educational curricula of medical, nursing, pharmacy and social work courses. We had also requested for refining the legal and regulatory system to improve access to opioids for pain relief. These have not found a specific place in the policy document.
Long Way to go!
Here are the various evaluations that appeared in the media:
Indian Express: What is National Health Policy 2017: Everything you need to know
Here is one more answer to the frequently asked question to palliative care practitioners, “How can you do this work year in and year out? Don’t you get depressed?”
Dr Vidya Viswanath, palliative care physician and Pallium India’s fellow traveller from Vizag writes:
“Every day brings a new challenge, a new thought and new frustrations in dealing with the huge gap between demand and supply. I saw 3 terribly disfigured head and neck cancer patients with maggots, with HIV and zero social support in two days. Just when I was in despair, I also had the privilege of taking one of our old patients with Ca Buccal mucosa to the hospice in our bus and then my car. He walked in and had his entire family around and died serenely the same night. I felt I was seeing Buddha in his disfigured face. And that is how I try to find my balance.”
Every year during the school vacation, Pallium India organizes a summer camp for our patients’ children, where they get to play, to learn and to have a lot of fun. Pallium India supports the educational needs of 300+ such children.
This year’s summer camp is organized from 27th to 29th April, 2017, at Mitraniketan, Trivandrum.
We request your assistance in making this program as enjoyable for them as possible – considering that with illness and death in the family, they do not get to have a lot of fun in regular life.
Please donate to us, and let us know that it is for “Kuttikkoottam Summer Camp”. For details on how to donate, please visit: http://palliumindia.org/donate/ Contact us if you have queries: email@example.com / 9746745497
*Donations to Pallium India are exempted from income tax.
Even as the Mary Varghese Institute of Rehabilitation at CMC, Vellore, completes 50 years of service, providing treatment and rehabilitation to patients with spinal cord injury, brain injury, stroke, amputations and cerebral palsy, physical medicine and rehabilitation (PMR) still remains neglected in India.
Recently, it took another doctor, one with 70% locomotor disability, to point out that despite nearly two decades since a directive of the Medical Council of India to the effect, there still weren’t any departments of PMR in a majority of the states, including Delhi.
In a petition filed before the chief commissioner of persons with disability, which comes under the Union Ministry of Social Justice and Empowerment, Satendra Singh, an associate professor of physiology at the University College of Medical Sciences and G.T.B. Hospital in Delhi, noted that despite several guidelines to the effect, “PMR departments are non-existent or scanty in medical colleges of many states”.
Read the report in The Wire: When It Comes to Rehabilitation Facilities, India’s Medical Community Remains Grossly Lacking.
Times of India
Moved by a harrowing incident which occurred in the life of former Miss Wheelchair India runner-up Virali Modi while using the services of the Indian Railway, Thiruvananthapuram Central Railway station has come up with an innovation which is sure to bring smile on the faces of the physically challenged.
Thiruvananthapuram Central Railway Station has become the first station in the country to introduce a ramp and wheelchair facility for the physically challenged based on a offical order from Southern Railway.
“I have been groped and manhandled three separate times by porters. They were helping me board the train because Indian trains are not wheelchair accessible. I am a disabled woman living in Mumbai who loves to travel,” reads the petition of the #mytraintoo campaign by Virali Modi, who was the Miss Wheelchair India runner-up in 2014, motivational speaker and a model. She has been paraplegic since she was 14. This petition which has already gathered a support of nearly 10,00,000 people, was brought to the notice of the Southern Railways by former Thiruvananthapuram division DRM Sunil Bajpai.
A team from the Trivandrum Institute of Palliative Sciences consisting of Nandini Vallath and Sumitha T. S., visited Puducherry on 22 March and 24 March, 2017, to mentor and support the ongoing activities in the region. Dr Dewan Roshan Singh, Associate Professor, Dept of Anaesthesiology, Mahatma Gandhi Medical College & Research Institute (MGMCRI), Anu Thelly, the nursing consultant, at MGMCRI and Dr Srikanth, Professor of Community Medicine at Sri Venkateshwaraa Medical College Hospital and Research Centre (SVMC), are the local champions who organized the events and made this visit a success.
This was a follow up visit for mentoring and monitoring of the palliative care activities initiated there with funding from the Tata trust, after faculty from SVMC, Dr Srikanth, completed training at TIPS, Trivandrum. The palliative care service in the institution has taken off since then. The activities are also gradually getting integrated into the clinical settings and the professional community, through a committee representing all specialities within the institution.
The team successfully conducted the ‘follow up workshop on Opioids availability’ at the MGMC on the 23rd of March. All significant stakeholders involved in improving opioid access within Pondicherry participated in this event. They included the health secretary, Officials from Excise, and health department, the senior faculty from local medical college hospitals and the regional palliative care champions. The meeting concluded with specific action points to ensure that the situation of access and availability to pain relief improves for the region in the near future.
In addition, Dr Nandini gave an invited presentation on “Pain Management in Palliative Care” at the SAF guest lecture series at MGMC. Anu Thelly, and Sumitha T. S., Project Executive, Pallium India, interacted and sensitized the nursing students at SVMC on palliative care topics relevant to their future practice.
(In the picture: Pallium India team with the SVMC team)
A news report by Sophie Borland published recently in the Daily Mail discusses how hundreds of thousands of elderly patients are being forced to endure unnecessary and potentially harmful treatment at the end of their lives.
A global study, which involved 1.6 million patients across eight countries, found that families cause loved ones to suffer at the end of life by begging doctors for unnecessary treatments, including elderly patients, who are being forced to endure unnecessary and potentially harmful treatment at the end of their lives.
Up to one third are given chemotherapy, dialysis, blood transfusions or CPR in their final weeks, which are of no benefit and only serves to prolong suffering. Researchers say family members are unwilling to let loved ones go and pressurise doctors into performing ‘heroic interventions’, which denied dignified death.
A review by researchers at the University of New South Wales, in Sydney, estimates that up to 38 per cent of patients are put through unnecessary treatment at the end of their life. This includes radiotherapy, scans, resuscitation or feeding tubes which doesn’t extend their lives and only prolongs suffering.
Dr Magnolia Cardona-Morrell, whose research is published in the International Journal for Quality in Health Care, said that as a result, many patients were ending their lives in operating theatres or intensive care units rather than at home.
But we ask: Is it fair to blame the families? Or does the problem point to grossly inadequate communication and counselling of the family? Naturally they would be anxious and grieving, would they not? Don’t we need to have a more robust health care system that would help the family to come to a state of acceptance?
“Doctors also struggle with the uncertainty of the duration of the dying trajectory and are torn by the ethical dilemma of delivering what they were trained to do, save lives, versus respecting the patient’s right to die with dignity.” She also highlighted a culture of ‘doing everything possible’ even though it may not benefit the patient. Her research looked at 38 previous studies.
Simon Chapman, Director of Policy and External Affairs, National Council for Palliative Care said: “We all die one day, and we need to challenge the idea that death is somehow a medical failure.”
“Madam, palliative care is an art,” says Moulana, Chairman of Thanal Charitable Trust, to Dr Ann Broderick who visited his palliative care facility in Lakshadweep, off Kerala Coast.
Dr Ann Broderick is a volunteer-consultant in Palliative Medicine from University of Iowa. She writes in her blog about her visit to the joint palliative care project that Pallium India had initiated with Thanal Charitable Trust, and taking part in their home visit programs, and a moving experience she had: Is a razor in your palliative care toolbox?
Thank you Odette! Thank you Rotary Suburban! What precious gifts!
You know how costly western text books are. We need them; but can’t afford them. But look at the cartons and cartons of books that we now have. They came as a gift from Dr.Odette Spruyt of Peter McCallum Cancer Centre, Melbourne. Rotary Club in Melbourne and Rotary Suburban Club of Trivandrum took the responsibility of sending and receiving them.
Dear Odette, you have been a friend of Palliative Care in India for 2 decades now. You have done so much for our suffering people and you continue to work wonders. Thank you very much.
Mr. Jose Pampackal, President, Mr.Subramoniya Sarma N., Secretary and Dr. N.R.U.K. Kartha of Rotary Suburban handed over the gift to us on March 7th, 2017. Rotary Suburban, we look forward to continuation of your support.
Thanks to the generosity of Elisabeth Kübler-Ross Foundation, its chief functionary Dianne Gray and Ken Ross (Elisabeth’s son), we have received a gift of numerous precious books to our Bruce Davis Education Centre at Trivandrum Institute of Palliative Sciences (TIPS).
TIPS was established in 2006 and acts as the flagship of Pallium India, delivering and demonstrating quality palliative care and education. Doctors and nurses from many countries, but particularly from all parts of India, come here to undergo our six weeks certificate courses.
The library is for the use of the trainees as well less for our own staff and volunteers. The process of cataloguing of the new arrivals is nearing completion. The revamped “Kübler-Ross Pallium library” will soon be ready. It will have a separate section on EKR publications.
What does it take to change an archaic and draconian law that violates human right to life and death with dignity?
Here are the ingredients of a recipe:
- Enough courage of conviction not to be afraid of the enormity of the task;
- A lot of study to understand the matter at depth;
- Getting together of people of different essential abilities and
- Persistence despite odds.
Read how over a 20 year period, the Narcotic and Psychotropic Substances (NDPS) Act was amended: Civil-Society Driven Drug Policy Reform for Health and Human Welfare-India written by Vallath N, Tandon T, Pastrana T, Lohman D, Husain SA, Cleary J, Ramanath G, Rajagopal MR, and published in the Journal of Pain and Symptom Management.
Do you have an old laptop in working condition, that you no longer use? Would you be interested to donate it to us?
Pallium India has a team of second-line volunteers and staff members who assist with our activities from the back-end. Some of their work is hindered because of the lack of sufficient number of laptops.
If you are interested to support us by donating old laptops that can be used for Internet access and basic applications, please contact us. We would be very grateful. Write to us at: firstname.lastname@example.org or call us at 9746745497
Pallium India Chairman Dr. M. R. Rajagopal received the inaugural ‘Healers of India’ Award in the Dr Prathap Reddy’s Selfless Service Award category. The recognition was conferred on Dr. Rajagopal by Apollo Group of Hospitals Founder Dr. Prathap C Reddy during a Healers of India award ceremony held in New Delhi on March 29.
The award has been instituted by Network 18 in association with Apollo Hospitals to celebrate, recognize and reward rural India’s unsung medical heroes. Dr. Rajagopal was chosen by a jury consisting of eminent professionals in the medical field, for his efforts to ensure the rights of palliative care patients in India.
Expressing his gratitude, Dr. Rajagopal said: “This award will go towards supporting patients undergoing treatment with Pallium India.” Dr. Rajagopal urged the media to be the catalytic force in empowering patients and their families to become partners in the healthcare system.
Kerala won the Healthy State Award, given for maximum improvement in medical facilities and healthcare infrastructure which has helped in provision of better healthcare services over the last 2 years.
‘Healers of India’ is an initiative to identify and honour the unsung heroes who are contributing their best and working tirelessly to ensure better healthcare for India’s rural population. The campaign focussed on rural India to bring those unsung heroes into mainstream media who work silently and are rarely appreciated for their humungous effort.
Dr M. R. Rajagopal, Chairman of Pallium India, has been conferred the Navjeevan Inspiration of the Year award by Navjeevan school, Nalanchira, Trivandrum. The award, consisting of a plaque and ₹50,000, was handed over to Dr Rajagopal by K. Muralidharan MLA, at a function in Trivandrum on March 23, 2017.
The Navjeevan Inspiration award has been established by the school to honour value-based social contribution by an individual. In a unique selection process, students (with the help of their parents) were asked to submit nominations. Dr M R Rajagopal came first with an overwhelming majority.
While accepting the award, Dr Rajagopal said that the award money will be used for Pallium India’s patient care activities.
Thank you, students and staff of Navjeevan school, for this honour.
Indo American Cancer Association (IACA), in association with TIPS (an organ of Pallium India), offers scholarship to undergo 6 weeks residential/non residential palliative care training course at selected centres in India.
Scholarship is offered for the CCPPM and CCPN courses beginning on June 5, 2017 at the following centres:
- MNJ Institute of Oncology, Hyderabad, Telengana. Contact: email@example.com
- Trivandrum Institute of Palliative Sciences, Trivandrum, Kerala. Contact: firstname.lastname@example.org
Type of Scholarship
- Depends on performance of the candidate in the telephonic interview conducted by IACA interview panel.
- Full support to the outstation candidates, including travel, accommodation, canteen, local travel, fees with cap on all items.
- For local candidates, support for registration fee is provided.
Please note: Last date to send in applications: 1st May, 2017
For more information on all our courses, please visit: http://palliumindia.org/courses
The International Association for Hospice and Palliative Care (IAHPC) announces that it will provide the following scholarships:
- Ten (10) scholarships to support the travel of palliative care workers to attend the 5th International Public Health and Palliative Care Conference. The conference will take place in Ottawa, Canada on September 17-20, 2017. Deadline to apply: May 15, 2017
In order to apply for a traveling scholarship, applicants must be current members of IAHPC and should not ave received grants from IAHPC in the past 3 years. (If you wish to apply and are not an IAHPC member, you may join by clicking here.)
Preference will be given to applicants:
- Living in Lower, Lower-Middle and Upper-Middle income categories as per the World Bank income classification data. See here.
- Applicants who have been IAHPC active members for two or more consecutive years.
- Actively working in palliative care.
- Graduated less than 10 years ago from specialty or medical school
- Have an accepted abstract for poster / oral presentation. Proof of acceptance of the poster will be required.
More detailed information about the application process and the online form are available at the IAHPC website here. If you need information on how to apply please contact Genevieve Napier, IAHPC Manager of Programs and Projects at email@example.com.
Organization: Pallium India
Job Title: Medical Social Worker
No. of Requirements: 2 (Nos.)
Nature of Job: Permanent – Full Time
Qualification: Masters in Social Work (Full-Time) from a recognized university
Experience: Fresher /1-2 years
Place of Job: Pallium India Trust, Arumana Hospital Building, Eanchakkal-West Fort Road, Vallakadavu P.O., Trivandrum
- Evaluation and management of problems of patients and families requiring palliative care with particular attention to social issues.
- Auditing of palliative patient care with intent to identification of problems and bringing up possible solutions to problems to the attention of the administration.
- Taking part in on-going research activities or initiating need based research programs with the approval of scientific committee.
- Liaising with the Government departments for getting Scheme related information for the patients.
- Taking steps to publish reports/data from audits or research programs with the objective of improved patient care anywhere.
- Maintaining regular reporting to superior officials as advised in the contract.
- Attending (first) and organizing (later) educational programs on behalf of Pallium India.
- Maintaining good relations with clients, donors, well-wishers and staff during telephone conversations, email contacts, personal contacts or any other.
Interested candidates can send detailed and updated CV to firstname.lastname@example.org with “Application for Medical Social Worker” as subject. For more details, please contact: email@example.com / +91 9746745501
For more vacancies, visit our Careers page.
Organization: Pallium India
Job Title: Palliative Care Physician
No. of Requirements: 2 (Nos.)
Nature of Job: Permanent – Full Time
Place of Job: Pallium India Trust, Arumana Hospital Building, Eanchakkal-West Fort Road, Vallakadavu P.O., Trivandrum
Qualification: M.B.B.S (Full-Time) from a recognized university
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.
Interested candidates can send detailed and updated CV at firstname.lastname@example.org Please mention “Application for Palliative Care Physician” in the subject. For more details, Contact: +91 9746745501
For more vacancies, visit our Careers page.
“What care pathways does the Indian law permit for a very sick patient with an advanced disease, when there is no scope for curative treatment?”
The question was asked by a doctor from the audience, to Dr Nandini Vallath, Pallium India’s consultant (in the picture) at the Association of Physicians of India – API conference in Alappuzha held on the 25th of February 2017.
These and many other aspects of bringing in best care practices surfaced during the invited presentation on “Relevance of Palliative Care approach in routine clinical practice” by Dr Nandini. While she described the current legal situation for the terminally ill in India, and explained about empowering the patient through information and shared decision making as the crucial focus in such situations, a senior professor of Medicine from the audience elaborated on the point further by relating a patient instance, where a decision on whether to aggressively intervene or introduce comfort care could be solved through direct communications, and by providing clarifications. Both emphasized regular repeated information sharing with patient / family as the way forward for appropriate decisions to emerge in complex situations.
The API conference aimed to update the knowledge and competencies of the physicians through enlightening presentations from oncologists, pulmonologists, and nutritionists and other specialists on different relevant areas of care. There was enthusiastic participation from the post graduate students as well, due to the interesting prizes for Quiz programs which were held at several phases during the conference.
Congratulations to Dr. Chandni. R, Hon. Secretary, API Kerala Chapter and Dr. Suma T K Professor of Internal Medicine, Alappuzha Medical College for bringing palliative care into mainstream academics of physicians – the anchor speciality in healthcare.
“Even when we suspected that a part of her pain could be psychological, we never doubted that her pain was genuine,” writes Dr M. S. Biji, a palliative care physician, about a 19-year old named Jeny who was admitted to her hospital with cancer.
Jeny had excruciating pain, but she was not responding to morphine, which she was taking every 4 hours. Even with increased doses of morphine, her pain was not getting better and she was sweating all the time. For a while, this made some members in the treating team wonder if she really did have pain.
Could it be possible that Jeny had some underlying depression making her feel severe pain? Emotional issues could greatly contribute to pain and that kind of pain would be unlikely to respond to opioids. But on careful observation, they came to the conclusion that poor control of pain was perhaps caused only by inadequate dose of morphine. So they kept increasing the dose of morphine, and sure enough, Jeny’s pain came under control.
Dr Biji observes: “Pain in cancer, in many instances is under-diagnosed or under-treated. Failure to assess pain is a major factor leading to under-treatment.” When the palliative care team believed the young woman’s report of her pain, they were able to arrive at the right combination of medicines to treat her pain, and to relieve her intolerable suffering.
Please read the complete article, Believing Jeny About Her Pain, published in the Journal of Pain and Palliative Care Pharmacotherapy.
The Journal of Pain and Palliative care Pharmacotherapy is an indexed journal that has made the narratives free access. The journal welcomes your Narratives on Pain, Suffering and Relief. Tell your story to the world and help improve palliative care awareness. If you have a story to narrate, share it with us. Write to email@example.com
Sumitha T.S., Project Executive, Pallium India writes about her recent visit to Puducherry:
My first official visit on behalf of Pallium India was to the once French colonized serene shore of Puducherry. I arrived at Chennai by flight and sat in the airport waiting for my colleague to arrive in another flight. We would have to take a cab from there to Puducherry. Indians in Chennai made me feel that it is the most caring and safest place; I should admit the fact that I have not travelled much but isn’t true to say not at all.
After she arrived, we located our cab driver and we started our journey through the east-coast road. On the way my colleague asked him whether he had ever seen any cancer patients. He replied that his previous employer’s sister suffered from cancer. He had worked with them for more than a decade and so he knew the story but not in detail. She had lost her husband at a young age; raised two children and got them married. After diagnosis, she lived with her sister, the cab driver’s employer. No health care workers visited her at home but she never used to show her pain to others. That was her way! She is now no more.
Our journey ended with our visit to the palliative care physician, Dr. Srikant. He had another story to tell. A lady with percutaneous endoscopic gastrostomy feed due to cancer hypopharynx came to him for euthanasia. Let us leave these medical terms and use simple English: a woman in her fifties came to him with the request to kill her or to facilitate a comfortable death as early as possible. She could not take food orally as she was suffering from cancer and was taking her feed through a not so acceptable route. She was suffering from severe pain and breathlessness during her meeting with Dr.Srikant and his team, and was well aware of her diagnosis and prognosis. The matter that was haunting her most was not physical; her care giver was her daughter who dropped out of school when she was in eleventh, to look after her mother. She was feeling guilty for ruining her daughter’s life – by not dying. Her symptoms responded to treatment, pain killing medications or analgesics which most of the palliative care physicians are fighting for and its adjuvants were given. Tracheostomy was done for breathlessness. She was fond of Mysore pak and and dosa and expressed her desire to have them during her three-week stay in Sri Venketeshwara Medical College Hospital, Puducherry, where Dr. Srikant and his team practised palliative care. As she could not swallow, the palliative care team took pieces of her favorite food items and allowed her to keep it in her mouth for some time and then spit it out. Her taste buds and her inner soul would have been happy at that moment. Is it happiness alone? She also expressed her dream to see her daughter as a doctor. The palliative care team took a photo of her daughter wearing coat and stethoscope so that the mother could see what she would look like.
During discharge, they provided a pedal type suction apparatus and the daughter was taught to take care of the tracheostomy. Periodic follow up was done over the phone. After two months, when the team visited her house, she recognized them despite her weakness and asked her daughter to serve them juice. Imagine, a sick lady recognizing her health care providers during her end stage, laughing at them and offering them juice, that too through actions or signs. What other appreciation does a health care provider need to be happy and satisfied? One week later, the news of the departure of that loving mother reached the team. Now, her daughter has rejoined school to make her mother’s dream a reality. The “nanban team” of Sri Venketeswara deserves a loud round of applause.
It was time to return home. Again, through the east-coast road back to Chennai airport. I expected it to be a lonely journey as my colleague had left the day before. But the driver started talking to me. He was no different from other Tamilians I have heard so much of. He started his talk with movies, Basha re-release and so on. But I felt proud that he accepted Mohan Lal and Malayalam story lines as well. I started calling him “Saitu paappa” as his name was synonymous with ‘rich man’. He told me that he had been the school topper in tenth grade, but had met with an accident in the twelfth. He was in bed for about a year with fractures and then could not continue his studies as his mother was ill by the time he recovered. In Puducherry, nobody diagnosed his mother’s disease, but one clinic referred her to CMC, Vellore, where she was diagnosed with blood cancer. She was treated there for a few months but passed away. After that, his family – father, sister, and two younger brothers – lived in different places for a few years and were unable to cope after his mother’s death.
This made me wish there were more “nanban teams” in different parts of the world; the world would indeed have been a more delightful place to live in!
Ashla Rani’s presentation on “What I learned as a Receiver and Provider of Palliative Care” at IAPCON 2017, Coimbatore.
Pallium India’s March 2017 newsletter had opened with an announcement of ten international palliative care organizations collaborating to urge governments to ensure balanced access to opioids for pain relief. To this, Mr Yau Weng Wai of Asia Pacific Hospice Palliative care Network (APHN) writes, “Here’s a 5 minute film to complement the 1st article in the Pallium India newsletter, see http://lifeaskeddeath.com/opioid-access/.”
Indeed, that’s a brilliant visual description of the problem in just about 5 minutes. You wouldn’t regret watching it. And to those who still wonder whether it would not increase the risk of abuse of opioids, let us assure you, many countries including several developing nations have ensured (notably, the south Indian state of Kerala) have demonstrated that with some basic precautions, it is indeed possibly to have the balance – making opioids available for pain relief, at the same time preventing diversion.
Mr Weng Wai has also recommended watching another 5 minute film called “Reaching Policy Makers” which focuses on the integration of palliative care into government run health systems.
“It is absolutely essential that the government should have a policy to make life liveable for people with diseases because what is happening now is cruel. A policy in that cupboard or in that computer doesn’t mean anything in our country till it has guidelines and strategy for implementation and that is where the gap lies. Just having the written policy is meaningless unless there is concurrent educational professional.”
In an interview with ETHealthworld, Dr M R Rajagopal talks about the need to improve the access and knowledge of palliative care among the masses in India:
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
Kate Jackson, eHospice International
Screams rent the air as we entered the children’s palliative care clinic in Kerala, India. Tanvi, a two year old child, was writhing in pain, with violent muscle spasms. She was now out of intensive care where she had received artificial life support, but not pain relief.
Her father stood by, helplessness personified. He later confessed that he had thought about killing the whole family and committing suicide. Tanvi’s mother had been behaving abnormally for weeks. Her 11 year old sister had left school. She had lost her childhood and had taken over the role of the mother.
Morphine brought amazing relief to the girl. Not total; but enough for her to sleep. The child lived for a few months more at home, on morphine.
Her father went back to work, though he had to leave work every two weeks to travel more than 100 kilometres to collect morphine. Her sister went back to school and her mother was helped by psychiatric treatment.
Olinda Timms, Deccan Herald
The theme of the National Bioethics Conference held recently and titled, ‘Healing and Dying with Dignity: Ethical Issues in Palliative Care, End-of-life Care and Euthanasia’ evoked tremendous response from all sections of the society including health professionals. Care of the dying has not received its due attention in India despite growing numbers of aged and terminally ill population.
For the most part, hospice and palliative care is left to charitable/religious organisations whose dedicated work is limited only by resource. Very few tertiary hospitals have fully staffed and trained palliative care departments. A 2010 study ranked India abysmally low, 67 out of 80 countries, in `access to end-of-life care’.
If we are to provide humane choices for the dying, palliative care must compliment mainstream health services at every level, offering patients the right to die with dignity. The duty to care for the patient does not end when clinical interventions prove futile. Dying patients are entitled to basic physical comfort and freedom from pain, two important pillars of palliation, and respect of personal choice in refusal of surgery or invasive procedures. The doctor has a central role in providing compassionate care in end-of-life situations.
The Times of India
The government medical college, Ernakulam, will soon get a palliative care block thanks to the Cochin International Airport Limited (Cial), which earmarked Rs 10 crore from its corporate social responsibility (CSR) funds for the purpose. Once the construction of the block is over, the activities of palliative care unit at the medical college can be vitalized. The CIAL authorities have entrusted KITCO with the design and implementation of the work.
The Medical Council of India’s directives are intended to prevent children from undergoing unnecessary procedures at the hands of incompetent doctors.
In order to ensure that children with disabilities are not made to go through medical and surgical interventions where they are not required, the Medical Council of India (MCI) has decided to abide by instructions from the Chief Commissioner for Persons with Disabilities (CCPD) and has said that doctors who are not trained in rehabilitation should limit their treatment of children with disabilities only to their medical illness or disease.
The MCI’s order, issued by its secretary, has been issued in accordance with the CCPD directing the body to provide appropriate instructions in 2008.
A combined meeting of professionals and volunteers of Pain and Palliative Care Society, Thrissur, and nephrologists have decided to work together to improve the quality of life of chronic kidney patients.
The meeting stressed the importance of integrating principles of palliative care in the management of chronic kidney patients. It is reported that 50% of kidney patients are suffering from pain and 80% of them do not receive any analgesics. In addition to the chronic pain, these patients suffer from a host of other physical problems and psycho-social issues along with financial problems.
Professor Lukas Radbruch, IAHPC Newsletter
In the past four years I have been continuously involved in the discussion on euthanasia and assisted suicide. First, in the board of the German Association for Palliative Medicine as we struggled to find a clear position, then in an extensive consensus process for the European Association for Palliative Care (EAPC), which ended in the EAPC white paper on euthanasia and physician-assisted suicide (PAS), and now in the IAHPC position paper.
The underlying attitude in all groups is the same (and this has been confirmed in the EAPC consensus process for the European national associations): palliative care neither hastens nor postpones death, and thus practices related to euthanasia and assisted suicide should not be part of palliative care.
On the other hand, we all seem to agree that palliative care is not the antidote to euthanasia or PAS requests, as there are some (very few) patients who, even with optimal symptom control and good psychosocial care, prefer to have full control over how to end their lives, and who will ask for hastened death as they feel that this is the only way to exert that control.
“The main reason physicians should oppose physician-assisted suicide is that assisted suicide directly contradicts the purpose of medicine. It directly contradicts physicians’ long-standing profession, which is to maintain solidarity with those who are sick and debilitated. It’s not just bad medicine; it’s the antithesis of medicine.
Relieving suffering is obviously an essential aspect of physicians’ work. But if we have no other objective criteria to decide what suffering you’re obligated to relieve and what suffering you’re not, then there is literally no boundary on our use of medical technology to achieve things that people want. Whatever conditions that people suffer, they can ask that we take them away.”
Following the recent successful Indian Association of Palliative Care Conference (IAPCON) in Coimbatore, a team from the Indian Association of Palliative Care (IAPC), the Worldwide Hospice Palliative Care Alliance (WHPCA), the International Children’s Palliative Care Network (ICPCN) and the Indian Association of Paediatrics (IAP), took the opportunity to advocate for palliative care with key Government of India personnel within the Ministry of Health, the World Health Organization, the Indian Council of Medical Research and the Medical Council of India.
The need for ongoing advocacy for palliative care at the state level was evident, although the support for palliative care at the national level was clearly seen.
Focusing their advocacy in Delhi, the team started by meeting with Alok Mather and Dr Arum Panda from the Ministry of Health and Family Welfare, key people in the Ministry responsible for palliative care development.
It is taboo in British culture to talk about death. We say someone has “passed away”, “kicked the bucket” or “left us” – anything to avoid even using the word. This has consequences. While 70% of people wish to die at home, half of us will actually die in hospital. Our reluctance to talk about death and make our wishes known is part of the reason for this.
So I didn’t expect to enjoy visiting a death cafe. As soon as I arrived, I knew I had made the right decision, however. The room hummed with a low level of chatter, and I felt prepared to practise talking about death and dying.
Sue Boucher, eHospice International Children’s Edition
Global palliative care activist, Claire Morris, has posted a new blog on the Clore Social Leadership site which questions whether we would see quicker progress in palliative care provision if it was led by those most affected by life-limiting illnesses – the patients.
Perhaps we need to readdress the existing power balance and look at who is speaking on behalf of who to develop a more impactful social justice movement on the issue?
April 8-9, 2017: Kerala state volunteers meet at Aluva, Kerala. Contact: email@example.com / 9746745502
April 21-22, 2017: Volunteer Training Program. Contact: firstname.lastname@example.org / 9746745497
April 27,28,29: Kuttikkoottam Summer Camp for children of our patients, Trivandrum. Contact: email@example.com
May 5-7, 2017: Painting exhibition at Trivandrum. Contact: firstname.lastname@example.org
June 5, 2017: Six weeks certificate course for doctors and nurses in Trivandrum (CCPPM & CCPN). Contact: email@example.com
June 29-July 2, 2017: Rehabilitation products sale at Saphalyam Complex, Trivandrum. Contact: firstname.lastname@example.org
October 14, 2017: International conference on Peri-operative Cancer Care at Jawaharlal Nehru Auditorium AIIMS, New Delhi. Register: http://www.irchoncoanaesthesia.com/
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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.
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If you have not thought about the word empathy, give a minute to put yourself in the place of someone who has a disability or paralysis.
Pallium India’s volunteer, Ashla Krishnan (right), writes in the Times of India:
I live my life on a wheelchair. I cannot move my lower limbs. I have only partial use of my arms and hands. I cannot hold a cup; I cannot even comb my own hair.
I have quadriplegia.
I have two choices. I have a loving family. I am sure my mother, my sister and other family members will take care of me. I need only to stay in bed. They will feed me, bathe me, and do all they can to make my life comfortable.
But I want you to know that my paralysis does not define me. I want you to recognise that I am more than my body. My brain, ordinary as it is, still functions. I also have other abilities.
I am a Master of Computer Applications and can do several things. I can use my skills to earn a living. Not only that, I can even contribute to society. My family’s loving physical support can only keep my body alive. To enliven my mind and soul, I need to be considered a human being.
I began by saying I am a quadriplegic. But I would want you to think of me as a human being with quadriplegia.
Read the complete article at: When compassion isn’t enough: Society must wake up to the rights of those living with disabilities
posted by palliumindia in Newsletter