March 2019 Newsletter

2019 March 1

Dr Michael Minton writes about IAPCON 2019

We are grateful to Dr Michael Minton, Palliative Care doctor and long-term friend of Indian palliative care from Oxford, UK, for sending us this report on the recently concluded IAPCON at Kochi:

[Image: Liz and Dr Michael Minton, with Dr Raviteja and Dr Sushma from CMC, Vellore]

IAPCON 2019 greeted us in Keralan style, a venue in the Aeli hills set in an attractive outdoor setting (provided free) with three large marquees for the meeting, and a temperature which was a challenge for some of us.

The theme was ‘Voices’ which had a thought-out evolution over the three days demonstrating a wide representation of topics and speakers. This ranged from individual patient challenges as presented eloquently, for example, by a young quadriplegic, the voice of the isolated carer (caregiversaathi.co.in), the needs of children, and the challenges of working with the voiceless. Mental health and psycho-social issues were well represented. The concept of palliative psychiatry was voiced.

A new feature, which I thought worked well, was case-based discussions where a clinical case eg. dementia (which I attended), Parkinson’s, head and neck cancer, the bed ridden patient were presented and then followed by a discussion of the topic with experts in the field with contributions from the audience.

In contrast, there was a stimulating talk about the relationship with media and a powerful analysis by Sashi Kumar of the needs and failures of the press/media to participate in some of the big social need questions. It was refreshing to have such a socially conscious programme. This was Voices!

My wife Liz and I had the privilege of reviewing some of the posters. This always provides insight into the range of activities that palliative care has facilitated and the hard work involved. Over the years the quality of the work has continued to improve and ranges from complex clinical studies to descriptive cases. It takes time to appreciate the posters but often they get neglected and don’t get enough space. The only solution, I suggest, is to have the posters on display in the refreshment area where they will gain the exposure they deserve.

Geeta Joshi and I chaired a plenary where senior nurse Alice Stella rallied her colleagues to develop education in leadership skills and reinforced the vital role of nurses in the palliative care team. It was an important contribution and was given alongside Richard Harding reminding us of the importance of measuring the outcomes of what we do (eg use of the African POScale). This is of course important not only for the patient but provides objective data to gain funding. The wider definition of PC as proposed by the International Association of Hospice and Palliative Care (IAHPC) and presented by Lukas Radbruch is all embracing. To those experiencing serious health related suffering it is exemplary as an humanitarian approach. However the debate is whether such an all encompassing definition is distinctive enough for health care funders of palliative care?

On the final day there were intense, well argued, discussions highlighting the ongoing difficulties of patients on life support. The latest legal guidance from the Supreme Court recognises the legitimacy of withdrawing treatment. It is termed “passive euthanasia” by the lawyers. This guidance has proved impractical and bureaucratic to deliver and hence IAPC working with Critical Care is having to request a review of these procedures.

Dr Odette Spruyt, a great friend of Indian palliative care, was sadly unable to be at the conference this year; she herself has undergone cancer treatment. However she had made a video for the conference offering us her reflections of being a patient and highlighting the importance of relationships. The recognition of these personal touches, verbal and physical, that health care professionals can convey and mean so much.

There were of course many presentations that I did not hear but the conference atmosphere was buzzing and I felt the large delegation of over one thousand had an imaginative range of topics to hear and discuss.

Conferences involve huge organisational challenges and while there were some challenges accessing the venue, the content was creative, broad and most importantly represented the growing Indian palliative care scene.

A three-decades-long mission:

Cancer Relief International and Pallium India have joined hands to do a series of educational programs aimed at empowerment of medical and nursing students in Assam, Meghalaya, Nagaland, Uttarakhand, Himachal Pradesh, Maharashtra, Goa, Andhra Pradesh, Tamil Nadu and Puducherry.

This is a mission that Gilly Burn had embarked on in the 1980s. She travelled from place to place in India as the manifestation of her love affair with this country. She would talk palliative care to anyone who would listen and has energised scores of professionals and volunteer champions to get into this field.

Dr Rajagopal, Chairman of Pallium India says, “I personally am immensely grateful to Providence that I came across this great human being at Trivandrum in 1992. Gilly took me along with 5 other Indian doctors on a 10 week course in Oxford conducted by Dr Robert Twycross which lay the foundation of quality palliative care in me and in numerous others.”

The differently-abled-talk

There was some beauty about it. And a lot of energy. A hall full of people – both exceptionally abled and ordinarily abled – got together to discuss how to move forward for the rights of the former group. This was at the Krithi Literary Festival organized at Marine Drive, Kochi, on 14th February.

In the picture you see Basheer and Rabiya, two activists, very vocal and very effective. Rabiya’s activism isn’t confined to the differently abled; she fights against any injustice. She has received death threats but she is unfazed.

There is so much enthusiasm among groups of the differently abled in various parts of the state and in the country. What amazing strength can result if they all got together! Dr Javed Anees, your sincerity and commitment are infectious. Congratulations on the successful organization of the event.

Further thoughts on the problem we are responding to: a view from Kerala

“… when the person needs a human touch most, that is denied to the person. That human touch and care by relatives is replaced by treatment in an ICU at an enormous cost to the person and the family, both in terms of suffering and money.” Read the complete article posted by Dr Richard Smith, former editor of British Medical Journal, quoting Dr Rajagopal: https://lancetcommissiononthevalueofdeath.home.blog/2019/02/12/further-thoughts-on-the-problem-we-are-responding-to-a-view-from-kerala/

Why Family Caregivers Need A Hand To Hold

Swati Kamal, Swarajya Mag

When Kumud Kalia’s husband was diagnosed with the rare disease, Shy-Drager syndrome, with no known cure, she experienced a plethora of emotions. “I was numb initially, and then I wanted to hide. I felt I could fight it and was determined to cure him. Acceptance came over time, but the anxiety never left. I wanted to do everything myself and did not want to take help. I also became very bitter with people who I felt did not empathise enough, and the result was withdrawal and social isolation. I felt guilty taking a break and going out, even though it did provide relief. The emotions are so high that you cannot talk about it, and people are also wary of approaching you. Yet, each time I was offered help, I was grateful”.

Read More-> https://swarajyamag.com/infrastructure/why-family-caregivers-need-a-hand-to-hold

Dr Mhoira Leng returns to Mizoram

Dr. Mhoira’s association with Mizoram goes back almost ten years. She visited Aizawl again this Feb to reunite with her spirit that lives in the Mizo culture.

She again called on the government sectors and hospitals encouraging decision makers and enthusiasts to develop palliative care in all corners of Mizoram. She met the principal of the new medical college and elicited a promise to include palliative care education in the curriculum. She met the National Health Mission head and urged him to build palliative care units in each district hospital and monitor the progress. She met the Principal of the Theological college to include palliative care in pastor studies and be the lead in mobilising the community in building palliative care. She visited the State Cancer Institute to reminiscence old memories of starting the first palliative care unit in that hospital!

Along with meeting officials and influencing them, she went around the Synod Hospital wards checking on patients with substance abuse and HIV and shared her learning from Uganda to further develop palliative care to these suffering patients in Aizawl. She also motivated the doctors and nurses through her teachings in the ten day program for the district hospitals team.

Her way with the local culture, the Scottish association with the rituals & food and the amalgamation of faith, makes her win every Mizo heart! Every Mizo heart jumped when she wore a “puan” (the traditional Mizo ladies wraparound) and a child shouted from a corner… “Beautiful lady !!!”

Recognition for Pallium India

Three purses came to Pallium India this month, along with greatly valued recognition in the form of awards.

The first was Attukal Amba Puraskaram, from Attukal Bhagavathy temple administration, on February 12, 2019. Attukal temple is a place of worship where millions of women get together every year for the famous Pongala. The temple administration believes that worship of the suffering is worship of God, and engages in a lot of philanthropic activities. It was particularly pleasing that the award was handed over by the mega star of Malayalam screen Shri Bharat Mammootty, who is also a humanist, and a patron of the Pain and Palliative Care Society of Calicut, for over twenty years.

The second came from K. V. Abdul Azeez Anusmarana Vedi. The award instituted to commemorate the memory of a great philanthropist was handed over to us by Prof C. Raveendranath, the Hon’ble minister for Education of Government of Kerala on February 14.

The third was the professional excellence award from Rotary North Trivandrum. This Rotary Club has been helping Pallium India for many years now.

We are greatly honoured and promise to fulfil your expectations to the best of our ability. We assure you that the purse which came with each award will be used for bringing succour to the needy and the suffering.

“We are here to learn”: Support our students’ education program

Support our budding stars to have a better future

“Cancer is my prison, and intolerable suffering is the sentence on my family…”

The brunt of suffering from life threatening and life limiting diseases is inflicted not just upon the patient, but on the whole family. Such ordeal drains the sufferer and the family physically, psychologically, socially, spiritually and, most importantly, financially.

According to Insurance Regulatory Authority of India, out-of-pocket expenditure in India is as high as 62%. This means that out of every ₹100 spent for healthcare, ₹62 is incurred by the people. This burden is compounded in case of prolonged and serious suffering. Other than the physical and mental trauma, catastrophic expenditure pushes families into dire poverty which further deteriorates their condition and drags them deep into the uncertainties of life.

Pallium India works with patients and their families saddled by protracted suffering. When a family member has serious life threatening disease, children in the family lose out on care, support and guidance when they need it the most. Most often families may not be able to continue supporting their children’s education or children may be forced to forgo their education in want of looking after their family member. Pallium India provides educational support for these children.

You can help Pallium India support education of children from underprivileged families who receive palliative care from us. There are countless deserving families, but we are able to reach only a fraction of them.

The following are the fee details per student:

Up to 12th std: ₹8000 per year
Degree: ₹10,000 per year
Professional courses: ₹35000 per year

Click here to donate and support our education support initiatives

When palliative care is more than a last chance

Shyama Rajagopal writes in The Hindu

A 53-year-old dancer was shunned by her family when she developed schizoaffective disorder, which remained untreated for five years.

However, after volunteers of the Mental Health Action group found her and treated her, she gradually recovered and now lives peacefully with her son. It was the palliative care approach to a psychiatric condition that helped her get back.

Read more: https://www.thehindu.com/news/cities/Kochi/when-palliative-care-is-more-than-a-last-chance/article26219562.ece

Congratulations Dr. Lalchhanhima Ralte

We are so very proud to announce that Pallium India’s fellow traveller in Mizoram, Dr. Lalchhanhima Ralte, has been awarded the US Govt. Fulbright Humphrey Scholarship to do a one year Fellowship in Substance Abuse starting August 2019 at Virginia University, Richmond and at NIH NIDA Washington DC.

Proud of you, Dr Ralte. Keep spreading your wings!

 

Meet this philanthropist

Meet Mr Ravi Thomas, an educationist who provided the lavish premises of Aeli Hills at Aluva gratis for conducting the annual International conference of Indian Association of Palliative Care (IAPCONKochi2019) from 8 to 10 February 2019, with pre-conference workshops on the previous day. The conference was held under the leadership of Dr Hyder Ali of Anwar palliative care. The scientific committee provided a rich academic feast.

With Mr Ravi Thomas in the picture is Rev Fr Abraham Varghese, a palliative care pioneer who was instrumental in the Palliative care network under Mar Thoma Church.

Now that he has met palliative care at close quarters, Mr Ravi Thomas intends to enter the field and to help remove some suffering in our community.

Clinical Fellowship in Pediatric Palliative Care in Hyderabad

MNJ Institute of Oncology and Regional Cancer Centre & Two Worlds Cancer Collaboration jointly announce a 1-Year Clinical Fellowship in Pediatric Palliative Care in Hyderabad, Telangana.

Last date to apply: March 15, 2019

Starting Date of Fellowship: July 1, 2019

Eligibility: Post-graduate degree (MD/DCh/DNB), Pediatrics preferred.

Click here to download the application form

 

Additionally, for all doctors or nurses who have an interest in a short course in Pediatric Palliative Care, there is a one-month Advanced Certificate Course in Pediatric Palliative Care at MNJ Institute of Oncology and RCC. All health care providers who have some experience in palliative care can apply. This course runs twice each year, with participants spending 1 month in Hyderabad.

For further details or to apply, contact the Program Coordinator, Ms. Vineela Rapelli at: mnj.palliative@gmail.com

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, VP XIII/80, Golden Hills, Venkode.P.O, Thiruvananthapuram – 695028

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.org with subject as “Application for Palliative Care Physician”.

For more details, contact

Arathy V Nair, Human Resources: +91 9746745501

Email: hr@palliumindia.org

10-day foundation course at Mizoram

Pallium India, in collaboration with Synod Hospital, Aizawl and the National Health Mission Mizoram, completed a ten-day foundation course in palliative care for doctors and nurses from all 8 districts of Mizoram. Dr Mhoira Leng and Sister Stella were the guest faculty, along with palliative care experts from Synod Hospital and State Cancer Institute, Aizawl.

Thanks to Dr. Eric Zomawia, Mission Director – National Health Mission Mizoram, who invited the doctors and nurses from all districts of Mizoram, and to the wonderful Synod Hospital team – Dr. Sangluna, Dr. Ralte and Mr. Sena – who ensured smooth delivery of training at their hospital in addition to their daily duties all through the ten days.

Way forward in Himachal Pradesh

Himachal Pradesh is one of the states where Pallium India is working with the state government to improve access to palliative care.

Thanks to the interest shown by Shri Probhod Saxena IAS, principal secretary of health and thanks to the dynamism of Dr Gopal Chauhan of the national health mission of the state, we had 11 enthusiastic doctors attending a foundation course in palliative medicine with us in Trivandrum. We have more than enough reason to be optimistic.

Dear doctors in Himachal Pradesh, all of us at Pallium India look forward to working with you to reduce health-related suffering in your beautiful state.

Podcast – Evaluating Community Palliative Care in Kerala, India

Professor David Clark, Dr Suresh Kumar, and Professor Devi Vijay discuss the current model of community palliative care in Kerala, its history, and achievements. CLick here to listen : http://endoflifestudies.academicblogs.co.uk/podcast-evaluating-community-palliative-care-in-kerala-india/

The Grey Factor

In 2050, for the first time in India, there will be more people above the age of 60 than there are below 15.

India’s population growth is ebbing as families are having fewer children and people are living longer. Demographers say that though it’s a healthy sign for any society, more senior citizens means more dependence on the shrinking youth population.

Read more: https://www.firstpost.com/india/the-grey-factor-6010431.html

Compassionate alumni of Thrissur Medical College!

How often do we all get together – old schoolmates, college alumni and so on! We enjoy the company of friends who have not seen one another for a long time, and have a great time.

The alumni from the 11th MBBS batch in Thrissur did all that. But they also did a bit more. Quite a precious bit, in fact.

They formed Smriti Charitable Trust in memory of two of their classmates who left this world prematurely – Dr Joseph George and Vini Viswam. And decided to do some good to their suffering fellow-human beings. For example, when they funded a kidney transplantation for a hapless young man, they made sure that the support for his immunosuppressant drugs continued.

When they had their 3rd annual meet on 17 February 2019 in the presence of celebrities like the Hon. Minister of Education Professor C Raveendranath, the music director Ouseppachan, musician Franco and the humane nephrologist Noble Ignatius, a handsome purse came to Pallium India. Thank you very much Dr Deepthy, Dr Siyad and all colleagues.

Video of the month:

Bhavana Issar, Caregiver Saathi on Women Caregivers

 

 

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:

http://palliumindia.org/donate/ (India)

http://palliumindiausa.org/ (USA)

Write to us: info@palliumindia.org

Call us: +91-9746745497 (India) / +1-718-273-8597 (USA)

All donations to Pallium India are tax deductible.

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Have Queries? Contact: info@palliumindia.org.

Find out more about our courses at: http://palliumindia.org/courses/

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image06Palliative Care Information Centre

Contact Pallium India’s Information Centre (9 am to 5 p.m., except on Sundays and National holidays) for information related to palliative care and about establishments where such facilities are available in India.

Telephone: +91-9746745497
or E-mail: info@palliumindia.org
Address: Pallium India Trust, VP 80/13, Golden Hills, Venkode P.O., Vattappara, Thiruvananthapuram 695028

For more details, please visit: http://palliumindia.org/info-centre/

PARTING SHOT

“If palliative care had not reached us…”

Pallium India’s Chairman, Dr M. R. Rajagopal writes:

Three of us from the palliative care team walked into the tiny hut. The patient was lying on her side with her face to the wall. The middle-aged daughter, who had been busy in the kitchen, wiped her hands on the edge of the lungi she was wearing and gave us a smile.

“Could we turn her to face us?” I asked after the usual pleasantries.

“Sure”, the daughter replied and, gently cooing, “Mom, let us sit up,” helped the woman up. She added with an apologetic smile to me, “it is good for her to sit up for a while”.

The elderly woman sat up leaning on the daughter and smiled. Later I understood that the smile did not mean anything. She had either dementia or delirium. Though she would recognize the daughter at an occasional moment of lucidity, most of the time she was talking to people who were not around or sometimes who had left this world at some point of time.

The younger woman told us the sad story of a loving mother of three children, now with no one to look after her except this one daughter. The other daughter and son had chosen to live their own lives. The son-in-law was a bit resentful of the elderly person’s presence. “Well, it’s your Mom; if you want to look after her, that’s your business; I want no part of it”, sort of summarized his position on the matter.

Tears streaming down her cheeks, and with the mother resting against her shoulder with her blank stare and fixed meaningless smile, the daughter continued. “It is okay if no one else cares for her. My mom is the whole world to me.” And she turned to the mother. “It is okay if no one else cares; I shall be here for you, Mother. I shall always be here for you.”

Punctuated with sobs, the daughter told us the story of a loving mother who never demanded anything of others and just went on ladling out love to everyone around.

And then she turned to me. “But she and I are alive because of you all. If palliative care had not reached us, I would surely have given her poison and ended my life too”.

She hugged the mother tight, planted a kiss on her cheek and repeated, “I am here for you, mom. I will always be here for you.”

This elderly woman has lost her mind, has no material possessions; yet she is so rich. How many people in the world would receive a wealth of such love at a time like this? Indeed, she is rich. And I was glad that her mental state was such that at least it left her with that perpetual smile, not sorrow.

As we parted, I told the daughter that I saw God in her. I meant it.

 

* illustration by Cartoonist P V Krishnan

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