Published on: June 30, 2018

Advance Medical Directives and Withholding / Withdrawing life support

Chairman of Pallium India, Dr M.R. Rajagopal, writes:

At the National Bioethics conference at Pune in 2017, where End of Life Care was the theme, I had made one request to Dr Soumya Swaminathan, (the then director general of Indian Council of Medical Research, ICMR, and currently, deputy director general at World Health Organisation) to create a document officially defining terms like ‘euthanasia’ which were creating a lot of confusion in the public and professional minds.

She immediately agreed and set the process in motion, assigning Dr Roli Mathur to take the lead. Many experts, from the fields of both Medicine and Law, worked with ICMR to create a landmark document which was published on the 12th of March 2018. The whole document can be seen here: Definition of terms used in limitation of treatment and providing palliative care at end of life

As a follow up action, on 5th June 2018, a meeting was organised at ICMR, Bengaluru. The objective: the creation of two white papers, one outlining the procedure for advance medical directives and the other for withholding/withdrawing artificial life support. Stalwarts in critical care and end of life care, including Dr Raj Mani, Dr Shiva Iyer, Dr Nagesh Simha, Dr Roop Gursahani and Dr Naveen Salins participated along with legal experts Shri Alok Prasanna Kumar and Dr Nandimath Omprakash and ICMR officials.

These processes are essential to make our country a better place for us to live in and die in. We have to accept that currently India is rated as one of the worst countries as far as quality of end of life care is concerned.

Thank you Dr Soumya Swaminathan, Dr Balram Bhargava (current DG), Dr Vasantha Muthuswamy, Dr Roli Mathur and all at ICMR.

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Evidence for palliative care

It is estimated that in India, there are 10 million people with unrelieved serious health-related suffering (SHS). In a country that is home to one-sixth of the population, palliative care is accessible to fewer than 1% of the people who need it. In the absence of palliative care, treatment is disease-focused with little regard for SHS.

In a study published in The Permanente Journal, Dr Aparna Sai Ajjarapu and Dr Ann Broderick explore pain in serious health-related suffering, whether and how palliative care has helped alleviate the pain, and how pain has affected the life of patients and families. Using the narratives of six home care patients, the project demonstrates how palliative care has helped people overcome their physical and emotional suffering, and lead their lives with dignity.

Please read: Home-Based Palliative Care Program Relieves Chronic Pain in Kerala, India: Success Realized Through Patient, Family Narratives

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Palliative care as a human right – news from Uganda

Mark Mwesiga, Program Manager at Palliative Care Uganda, reports:

On June 8th 2018, the Uganda Human Rights Commission (UHRC) which is the national Human Rights body, presented its 20th Annual Report to the Speaker of Parliament.

For the year 2017, the UHRC monitored the enjoyment of the Rights to Palliative Care and Chapter two of this report is about the findings.

For all practical purposes, most of the global discussion on access to pain relief or palliative care as a human right happens in the western world. It is so heartening to see the matter being seriously discussed in the global south.

We have a lot to learn from Uganda.

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Way to go, Mizoram

We must give credit to the enlightened minister of health and officials and to the sustained advocacy by the local palliative care teams that there was such clear acceptance of the NDPS amendment act in Mizoram. There was no manifestation of the opiophobia that we are used to seeing at meetings involving government officials, hospital authorities and the public in many places.

An opioid availability workshop was conducted in the Chief Minister’s office at Aizawl, presided over by Mr Pu Lalthanzara, the Health Minister of the state of Mizoram.

In the presence of the State Drug Controller, Director of Health and Medical Education, Officials from Food & Drug Administration and the Excise Department, Directors and other leadership from the leading hospitals and Cancer Foundation and the National Program for Palliative Care State Nodal Officer – all officials agreed to do the needful for better availability of opioids in the state.

Dr Athikho Nepuni of CIHSR Dimapur and Dr Lalkrosthangi Khalo of Naga Civil Hospital Kohima, who specially travelled from Nagaland, appreciated the good work being done in the state of Mizoram with the support of the government, church and other communities. They felt encouraged to build a similar network in Nagaland also.

Pallium India had worked with Dr Jeremy Pautu more than 12 years back to establish an excellent palliative care Centre in the regional Cancer Centre at Aizawl. More recently, we are working with Synod Hospital to spread access to palliative care as much as possible in the state.

We congratulate the team at Synod Hospital – Dr Lalchhanhima Ralte, Dr Sanghluna, Mr Sena, Ms Arini and many others who worked tirelessly for organising this event. And we thank the director and administrators of Synod Hospital for their support.

[Image: Mr Pu Lalthanzara with Dr Sanghluna]

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Kerala aims for total palliative care delivery this year

Minister for health and social justice minister KK Shailaja informed the legislative assembly on Wednesday that Kerala will achieve ‘total palliative care delivery’ in 2018 and become the first state to accomplish this rare feat in India. She added that Kerala is already a model state in the country in the field of palliative care.

“The government is considering extension of this service to everyone and it will be recruiting one physiotherapist and a nurse each at 232 community health centres (CHCs) on contract basis,” she said.

Read the news in the Times of India: State eyes total palliative care delivery this year

Way to go, Kerala!

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Just 2% have access to palliative care in India

“Just 1%-2% people have access to palliative care or pain management in India, which is a land of paradoxes. We have a national programme for palliative care but even today medical students do not learn pain management from the curriculum,” says Dr M. R. Rajagopal, Chairman of Pallium India, in an interview with Jyoti Shelar of The Hindu.

“For most severe pains like two-thirds of cancers, major trauma, surgical pain, one cannot manage without opioids, which reach less than 2% of the needy in the country. However, the country grows poppy, makes opium and exports it to the rest of the world. That is the paradox.”

“India needs three things: a policy and a plan for implementing it; availability of the essential medications; and education and public awareness.”

Read the interview here: https://www.thehindu.com/news/cities/mumbai/just-2-have-access-to-palliative-care-in-india/article24176073.ece

Please note: The article states, “Every single nurse in the primary health centre in the State is now trained in palliative care.” It should read, “Every single primary health centre in the State has a nurse trained in palliative care.”

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Health spending pushed 55 million Indians into poverty in a year

The Times of India reports:

About 55 million Indians were pushed into poverty in a single year because of having to fund their own healthcare and 38 million of them fell below the poverty line due to spending on medicines alone, a study by three experts from the Public Health Foundation of India has estimated.

The study, published in the British Medical Journal, reveals that non-communicable diseases like cancer, heart diseases and diabetes account for the largest chunk of spending by households on health. The study concluded that among non-communicable diseases, cancer had the highest probability of resulting in “catastrophic expenditure” for a household.

Health expenditure is considered to be catastrophic if it constitutes 10% or more of overall consumption expenditure of a household.

Read the complete article: Health spending pushed 55 million Indians into poverty in a year: Study

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A mesmerising speech and a reminder

Dr M. R. Rajagopal, Chairman of Pallium India, writes:

It was a huge privilege to listen to the profound talk by the guest of honor, Shri M. Mukundan, as he addressed the young doctors of Kannur Medical College at Ancharakandy at their graduation ceremony on 30 June 2018.

The writer who mesmerised Malayalam readers with his many award-winning novels including the classic,

“Mayyazhippuzhayude theerangalil”, reminded all of us that while doctors look after bodies, writers treat souls.

An important reminder there for us doctors that human beings are more than just bodies.

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2 doctors + 2 students = 2 great doctors.

Dr M. R. Rajagopal, Chairman of Pallium India, writes:

Meet Dr Catherine and Dr Athul.

Dr Catherine, a senior medical teacher, is attending a six week course in palliative care at Government General Hospital, Ernakulam. On 29th of June 2018, I had the absolute pleasure of interacting with the participants of that course as well as a hall full of students in pharmacy, medical social work and nursing. And also, 18 nurses from National Health mission, Tamil Nadu.

At the conclusion of the half day, Dr Catherine spoke: “I have spent a lifetime teaching medical science. But during the last one month here, I have learnt more real medicine than I ever did in my life before.”

And she complimented her former student Dr Athul Joseph, now palliative care physician and her teacher!

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Ujwal – from hopelessness to empowerment

Pallium India, in association with the Federation of Malayalees Associations of Americas (FOMAA), has launched a project to support women who live with life-limiting conditions and women who care for people with life-limiting conditions.

Globally, women patients tend to receive fewer services. Similarly, women constitute more than 80 percent of caregivers whose services often go unrecognized. In countries like India, women may not have their own income and their day–to–day existence becomes precarious if the male breadwinner becomes seriously ill or incapacitated. These women may become liable for any debts incurred by the male member of the family and often run into further debt in caring for their family members. Society tends to ignore the physical and emotional stress faced by women caregivers since their domestic work, in any event, is not acknowledged. Unlike that of men, women’s mobility is scrutinized, restricting their movement outside of their homes. The need for respite for women caregivers is rarely acknowledged.

In this context, Pallium India and the Women’s Forum of FOMAA have initiated a project in Trivandrum to focus on women patients and women caregivers. As a start, eight women caregivers were provided support for income-generation activities. The project, aptly named Ujwal (brightness against darkness), aspires a transition “from helplessness to empowerment” by implementing a variety of programs.

Here are some of the beneficiaries of this program

  • Valsala (name changed) used to make home-made cakes for a living before they were forced to sell their oven and other equipment to cover her husband’s treatment. Based on an assessment made by the Pallium India team, a budget of ₹42,800 was approved to enable her to buy an oven, and materials required for making cakes, as well as support for paying electricity bill. Pallium India envisages that she will be self-sufficient after six months to meet all the expenses involved in running her business.
  • Beena (name changed) had discontinued her garment business due to the expenses she incurred for her husband’s treatment. She requested assistance from Pallium India for a small investment to purchase garments for selling locally. She also proposed buying a two-wheeler so that she could reach more people. Pallium India is supporting her by providing a sum of ₹15,000 for her garment business, and later, may also consider offering her a two-wheeler.

[Image: Dr Rajagopal handing over the check to Mr Francis Ernest, volunteer, to support women caregivers in their palliative care clinic]

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Kerala aims for total palliative care delivery this year

Minister for health and social justice minister KK Shailaja informed the legislative assembly on Wednesday that Kerala will achieve ‘total palliative care delivery’ in 2018 and become the first state to accomplish this rare feat in India. She added that Kerala is already a model state in the country in the field of palliative care.

“The government is considering extension of this service to everyone and it will be recruiting one physiotherapist and a nurse each at 232 community health centres (CHCs) on contract basis,” she said.

Read the news in the Times of India: State eyes total palliative care delivery this year

Way to go, Kerala!

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Vacancy: Palliative Care Physician at Trivandrum

  • Organization: Pallium India
  • Job Title: Palliative Care Physician
  • No. of vacancies: 2
  • Nature of Job: Permanent – Full Time
  • Remuneration: Depends on Qualification & Experience
  • Location: Pallium India Trust, Thiruvananthapuram
  • Essential Qualification: M.B.B.S from a recognized university
  • Desired Qualification: Trained in Palliative Care
  • Experience: Fresher /1-2 years

Job Description

  • Provide symptom management, pain relief and supportive care for the patient in inpatient care, outpatient clinic and home based care.
  • Facilitate clarification to patient and family regarding goals of care.
  • Facilitate information sharing and decision making regarding patient care.
  • In addition to providing expert symptom management, devote time to intensive family meetings, ensure co-ordinated 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.

How to apply: Interested candidates please send detailed and updated CV to hr@palliumindia.live-website.com with subject as “Application for Palliative Care Physician”.

For more details, contact:
Arathy V Nair, Human Resources: +91 9746745501
Email: hr@palliumindia.live-website.com

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International Physician Scholarship

Applications are now being accepted for the AAHPM International Physician Scholarship, open to AAHPM member physicians who reside in low and middle income countries as defined by the World Bank.

This scholarship will provide financial support (up to $5,000) to each recipient to cover costs such as meeting registration and travel expenses to attend the Annual Assembly in Orlando, FL, March 13-16, 2019.

Deadline: August 6, 2018

Eligibility

Scholarships are available to physicians who work in hospice and palliative medicine and who care for seriously ill patients. Eligible physicians must permanently reside in low and middle income countries as defined by World Bank.

Preference will be given to applicants who are

  • members of the AAHPM – physicians who reside in a low or middle income country as defined by the World Bank & the HINARI list of eligible countries are eligible for a complimentary international membership.
  • have not previously attended the Annual Assembly
  • are junior in their career with 2-10 years of experience primarily in palliative care, including a resident or fellow, focused on studying palliative care, and
  • whose organizations are considered least able to afford this opportunity.

For more details and to apply, visit: http://aahpm.org/scholarships/developing-countries

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‘Hippocratic’ screened in Mumbai

The second formal screening of the film ‘Hippocratic’ was held at the Tata Institute of social Sciences in Mumbai on the 16th of June 2018, in collaboration with CanKids… KidsCan and Australasian Palliative Link International. (The first was in Bangalore in January.)

On the eve of the event, Dr. MR Rajagopal was interviewed by the journalist Faye D’Souza on the news channel ‘Mirror Now’, where Faye raised some very important questions pertaining to the impact of healthcare on Indians and the role played by palliative care in reducing health-related suffering in a country where last year 55 million Indians were forced below the poverty line as a direct result of health care costs. They also discussed various other socially relevant issues surrounding palliative care, including speaking with children in the context of serious illness.

The screening of the film itself was attended by about 75 people, primarily from the palliative care and medical fraternities but also included a few people who were not related to these fields and wanted to learn more.

The screening was followed by an audience interaction session led by a 3 member panel – Dr. Roop Gursahani (Consultant Neurologist and Epileptologist at Hinduja National Hospital. He is also one of the main activists with ELICIT, the End of Life Care in India taskforce), Sheela Jaywant (Writer and caregiver, and former hospital administrator) and Ashla Rani (Volunteer with Pallium India, caregiver and care recipient, and a disabilities rights activist). The discussion was moderated by Dr. Rajagopal. Participants asked some challenging questions and shared some powerful experience with suffering, and a few healthy debates were also had.

Smriti Rana, Consulting Psychologist and Programme Director at Pallium India, and Poonam Bagai, Vice Chairman of Pallium India and Founder President of Cankids…KidsCan, also addressed the audience.

Overall, the event was an intimate but powerful gathering of people who came together to learn, share and commit themselves further to the cause of reducing illness related suffering through palliative care.

Click here for more photos from the event

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Unbearable heaviness of being

“As anyone who has faced a life threatening illness will tell you, what keeps you awake at night is not the thought of another round of chemotherapy but the fear that you are alone,” writes Harmala Gupta, founder-president of CanSupport, in the Times of India.

She refers to the recent suicides by an elderly scientist and a police officer. “A life draining illness and old age make you aware, as nothing else does, of what a load each one of us carries.”

“When I returned from Toronto in 1987, after my own personal experience with cancer, I was determined to bring the programme that I had witnessed in Canada to New Delhi. Not everyone understood the need for psychosocial support at that time. I was told that it was a Western thing; in India we had the family and our faith.”

Read the article: Unbearable heaviness of being: The aged, as well as cancer patients, require psychosocial as much as medical support

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Thank you, Jaime!

Sarath Mohan writes on behalf of the Social Work team at Pallium India:

We were privileged and honored to have Ms. Jaime H. Goldberg, palliative care social work expert from​ ​Los Angeles, USA, with us for three weeks. Jaime works as Lecturer at California State University Long Beach School of Social Work and has​ ​more than 10 years of experience in palliative care. It was truly a period of expedition and learning for the entire social work team.

Thank you, Jaime, for taking time off your busy schedule to come all the way from Los Angeles and spending time with us. We really look forward to having you again next year. We would also like to thank Dr. Ann Broderick of University of Iowa for connecting Jaime with us.

[Image: ​The Social Work team with Jaime H. Goldberg]

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Spreading the light of love

Shareena Bhaya, Project Manager, Pallium – Ganga Prem Project, Uttarakhand, who spent 2 weeks at Pallium India, Trivandrum, writes about her visit:

My time here, at Pallium, has been profoundly transformative and a turning point. In gratitude for the experiential learnings via home care visits, classroom interactions with palliative care medical professionals / social workers / volunteers, care and warmth of the Pallium Family, and especially my learnings from the precious time spent with Dr. M. R. Rajagopal during our home care visits in Uzhamalackal.

Viewing “Hippocratic” got me teary eyed, and I felt an internal shift. Dr. Rajagopal is a powerhouse of positive energy, and a living example of “divinity at play”. I will be leaving here with a sincere resolve to emulate (at least some of) his indomitable will and intrepid, pioneering efforts towards the advocacy of Palliative Care, spreading the light of love, in service – experiencing the joy of giving.

(Image: Shareena Bhaya with Dr. M. R. Rajagopal)

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Video of the Month: Bringing Palliative Care to India

For many patients in India who are at the end of their lives or suffering from life-limiting illnesses, pain relief is simply unavailable.

Dr. M.R. Rajagopal, founder and chairman of Pallium India, is working to improve access to palliative care in that country, particularly in the form of opioid medicines like morphine.

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Support us every time you shop!

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Donate to Pallium 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:

All donations to Pallium India are tax deductible.

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PARTING SHOT

When an entire college turned out to make a boy smile

Shantanu Diwakarrao Deshmukh, Second year MBBS student of Mahatma Gandhi Medical College and Research Institute (MGMCRI, under Sri Balaji Vidhyapeet University), Pondicherry, writes:

Life is a blessing, it is often said. But for a few unlucky ones among us, it brings a lot of unforeseen curses along with it.

Such was the case of Velapandi (name changed), an 18 year old from Thanjavur. Fate took his father away from him when Vela was just 6 years old. His older brother lost his life at a construction site accident. Belonging to a low socio-economic class, with a sad history, Vela’s life shouldn’t have had any more suffering. But his fate knew no limits.

He was diagnosed with Acute Lymphoblastic Leukemia, for which he took treatment for 2 years. Hopes for getting cured increased when he was responding well to the treatment initially, but later the treatment became ineffective. He first visited a tertiary care hospital in Pondicherry, and then came to Mahatma Gandhi Medical College and Research Institute and Hospital, Pondicherry, where he was admitted in the palliative care unit.

Here we witnessed his battle with cancer. How his young life was eclipsed by something which was now inevitable. The Palliative Care Unit Doctors and other staff treated him like their own, and his comfort and happiness were their prime objectives. Best available medical care was provided to him to ease his pain. But, medicines can’t provide what humans can – Care and Compassion.

Here at MGMCRI, we have a Doctors-Faculty-Students Social Service group called ‘Helping Hearts’ where we try and help everyone around us, spreading the humanity and care everywhere we can. Once we came to know about Vela, students and doctors from Helping Hearts and MGMCRI interacted with him, played with him, engaged him into long heart-to-heart conversations and tried their best to soothe him and make his last days happy, less painful, both physically and emotionally. And the reaction we hoped for, we saw it on his face. Our compassion reflected in his eyes. Conversations over ice-creams and chocolates, we got to know him and his immense love for movies, film star Ajith, how he would watch all his movies again and again and dance to his songs, his love for sports like cricket and Kabaddi. How he loved playing!

We developed a deep connection with him in a very short span. He became one of our friends. We thought of hosting a Kabaddi game for Velapandi as he loved it the most. In very short time, we fixed the plan and arranged everything. Vela was weak, tired and everything was done according to his preferences and his comfort.

On a Sunday, when usually everyone is lazy and asleep, everyone gathered on the college ground at 6:30AM, as Vela wouldn’t have been able to bear the hot sun after. Students from the first year to final year, interns, PGs, doctors and faculty members, everyone was determined to see a smile on Vela’s face, to hear his laughter, because this would be the last time we see him, and he sees us. The field was set. Boundaries marked. Our volunteers gave all their heart and sweat for the game. Probably not the best Vela had seen, but he was very happy knowing that strangers who don’t know him did this for him. He promised that he would come and teach us once he gets better. It was a different morning for him, unlike all the others where he used to be there lying in bed, fighting the pain. For that short period of time, we took his pain away. For that short period of time, we could hear his laughter and joy. Instead of grieving over his less days of life, we added more life in his days.

We bid farewell to him. He said, “Anna, Goodbye to all and Goodbye forever.” We watched his car go away till it disappeared at a turn, our minds troubled with the thoughts that his time was done on this earth.

Vela left us all on Sunday, 11th March 2018. He was an optimist, a fighter. Cancer ate away his body, but his will power was strong as ever. Vela is no more in this world, but his memories will remain with us forever. We knew each other for a very short time, but he rooted deep into our hearts, gave us a new experience, and left us with unforgettable memories. We got to know life in a different way because of him. May his soul rest in peace.

(Image: Velapandi watching Kabaddi organized by MGMCRI)

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