Here is some news from the European Association for Palliative Care (EAPC) on the 7th World Research Congress, 7-9 June 2012.

Applications are now open for travel grants to the upcoming 7th World Research Congressof the EAPC in Trondheim, Norway. According to the site, the Foundation Open Society Institute has put up the funds for these travel grants.

Application deadline: 25 April, 2012

Travel grants will only be offered to applicants who:

• have an abstract accepted for oral or poster presentation
• represent the priority countries of the International Palliative Care Initiative of the Open Society Foundation: Albania, Armenia, Georgia, Hungary, Kazakhstan, Kenya, Kyrgyzstan, Moldova, Romania, South Africa, Tajikistan, Uganda, and Ukraine.
• More information here…

Pre-Congress Seminar (4 & 5 June)

Only 18 seats remain available for participation in the pre-congress seminar (4 & 5 June), which will focus on the subject of cancer-related pain, cachexia, and dyspnea. The pre-congress seminar is being held in the beautiful countryside of Jægtvolden with organised transport to and from the main congress venue in Trondheim.

• Application information here…
• Deadline for pre-congress seminar presentations: April 20, 2012

Image: IMDB

You cannot afford to miss the feature film “50/50” directed by Jonathan Levine. 

Inspired by a true story, the film shows you a 27 year old man given a 50% chance of cure – a story of cancer, its treatment and human relationships:

• The insensitive, jargon-filled disclosure of the diagnosis;
• the patient’s predictable reactions (predictable to everyone except the doctor);
• the artificial touch by the psychologist who is trying hard to keep therapeutic distance (she also has the agenda of including this case history in her dissertation! So familiar!);
• the camaraderie among patients, and…
• the broken relationships and evolution of new meaningful bonds.

This film is a must-see for everyone in medical and related professions. Our friends at SevenPonds Blog have a well-written review that you might also want to read:

 “The movie is at once a comedy, a drama, and a romance – you’ll laugh one second and cry the next, and leave ultimately satisfied…”

The director tries hard to keep us happy in the end. The disease gets cured, the cancer survivor and the psychologist get united, and presumably, are supposed to live happily ever after.

Well, may be, Jonathan Levine will bring out another film some day about the struggles of the cancer survivor, especially in a country like India.

• 50/50 official website
• Watch more clips here, available now on DVD or  rent the full film on Youtube.

JivDaya Foundation (JDF) based in Dallas, Texas, USA was founded by Dr Vinay Jain and his wife.

Dr. Vinay Jain, founder of JivDaya Foundation

JDF held its annual review meeting in Hotel Mapple Emerald, New Delhi on 16 March 2012.  Representatives from all JDF-supported centers and potential collaborators got together to share experiences and to make plans for future. This turned to be a good opportunity for many working in the field to connect in person and learn from one another.

Dr Vinay Jain does a great deal towards strengthening organizations for the long haul. JDF assists palliative care teams treating cancer patients by funding salaries of essential staff and by facilitating a system of documentation. Pallium India’s Trivandrum Institute of Palliative Sciences (TIPS) is one of the recipients of JDF’s assistance.

Thank you very much Dr Vinay Jain and team!

Image: JivDaya Foundation web site

Drawing by Pallium India volunteer Anu Joseph

Palliative care is a personal kind of care.

It is provided in the home whenever possible. This means that the team gets to know the family, becoming part of their support system. It wasn’t long before we realized that children are highly affected when their parents become ill with cancer or other life-limiting diseases.

JMM Study Center, Mannanthala

Keeping this in mind, we are organizing a 3-day summer camp for children age 12-18 with parents who have had life-limiting diseases.

The event will take place from the 19-21 April 2012 in JMM study center, Mannanthala, Trivandrum, Kerala.

The organizers will provide personality development training, creative activities, entertainment and one day of outing to museum and planetarium. It will provide the kinds of activities that allow the children a precious opportunity to leave all their grievances behind for a few days and enjoy themselves.

Pallium India currently provides educational support for 150 children. Beyond financial aid for education, we also aim to see these young people grow up as responsible, confident individuals with good self-esteem.

Read one of the children’s stories below. (Note: names are changed for confidentiality.)

Let me introduce you to Archana, a bubbly 12-year-old who loves singing film songs and playing with her friends. Like other children of her age she used to go to school and dreamt of acquiring enough education to support her family one day.

Everything changed when her father Rajappan, 43, was diagnosed with cancer. A daily wage earner, he could no longer support his family, let alone find enough money for his treatment.

Poverty forced Archana to drop out of school. As it turned out, this was just the beginning of her troubles. Neighbours who were supportive in the beginning started turning up less often. Even her playmates in the neighborhood stopped talking to her due to misconceptions and myths regarding cancer.

Within a few months what seemed like a promising future for this school girl turned out to be a murky tunnel with no light at the other end.

Pallium India stepped in and provided funds for both Archana and her sister so that they could stay in school. The organization also assessed the home situation, and purchased a sewing machine for the family so that they could earn money from home.

In all, ways to help them to blossom into the little flowers they were born to be. 

We were very pleased to hear last week from Meg O’Brien, Ph.D., director of the Global Access to Pain Relief Initiative (GAPRI) of its collaboration with the Nigerian Ministry of Health.

We were even more heartened to see that the story has now been picked up by the New York Times, in an article headlined “Nigeria to Import Morphine in Pain Relief Initiative”by health reporter Donald G. McNeil, Jr. Meg sent us this information:

… the Honourable Minister of Health of Nigeria, Prof. C.O. Onyebuchi Chukwu, held a press conference at the Abuja Sheraton hotel to announce a new collaboration with the Global Access to Pain Relief Initiative (GAPRI) to make essential pain relief available for Nigerians who need it.

The first step in the effort was the initiation of an emergency procurement of 26 kg of morphine by the government. Since only 1 kg has been procured since 2007 and Nigeria has the largest unmet need for pain relief in Sub-Saharan Africa, this represents an important first step to changing the landscape of access to pain relief both in Nigeria and in the region.

The Minister of Health earlier this month signed an agreement with GAPRI to provide technical assistance to the government as well as provide a full-time staff member who will serve as the Special Assistant to the Director of the Food and Drug Services Department on Access to Pain Relief.

This progress is a direct result of lobbying by the national Cancer Control Programme and support from the Center for Palliative Care, Nigeria, the Hospice and Palliative Care Association of Nigeria, the African Palliative Care Association, and Hospice Africa Uganda.

GAPRI’s involvement would not have been possible without the support of these organizations, and particularly, Prof. Isaac Adewole and Prof. Olaitan Soyannwo, who invited us in and helped us to plan the technical proposal.

The press release from the Hon. Minister is available here: http://www.uicc.org/programmes/nigeria-announces-collaboration-gapri-improve-access-essential-pain-medicines

Congratulations to all who were involved in this major achievement.

The Guatemalan Government published yesterday in the official newspaper Diario de Centroamerica the Agreement of Constitution of the National Commission of Palliative Care of Guatemala, with a wide representative body of institutions.

For us, it is definitely the best gift to start the year!

Our Government will change on January 14th, and we are so glad that they decided establish this Ministry Agreement so we can continue to work with the new team.

“Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop”

Says Atul Gawande in the New Yorker of August 2, 2010.

But do not think that this is one of those articles that blindly advises against aggressive curative treatment. It is not.

Atul Gawande argues forcibly for a balance. And for the evidence in favor of combining life-prolonging treatment with palliative care.

“A two-year study of this “concurrent care” program found that enrolled patients were much more likely to use hospice: the figure leaped from twenty-six per cent to seventy per cent.

That was no surprise, since they weren’t forced to give up anything.

The surprising result was that they did give up things. They visited the emergency room almost half as often as the control patients did. Their use of hospitals and I.C.U.s dropped by more than two-thirds. Over-all costs fell by almost a quarter.”

Read the full article here and Dr Michael Minton’s comments in a previous blog post.

Jason Cook: My dad’s death was one big joke
Stand-up comedian Jason Cook always delved into his family life for inspiration, so when his father had a stroke he turned it into an award-winning show. Then, a year later, his dad died of cancer – but that didn’t mean the laughs had to stop

Jason Cook with his late father, Tony

Dad was diagnosed with cancer in 2008, and one of the first things he said to my mum was “Well, that’s Jason’s next Edinburgh show sorted then.” He wasn’t far wrong. My 2007 Edinburgh Fringe comedy show, My Confessions, had documented his stroke and recovery and my 2008 show Joy talked about his cancer diagnosis and death. The truth is that my dad and I had written most of the show together. He was and is my inspiration.

My father, Tony Cook, was born in the Tyneside shipyard town of Hebburn, where we lived. He was a big, broad-shouldered fellow, with huge forearms and thick hands and the kindest eyes anyone has ever seen in a human being. They were eyes that always had a twinkle in them, so when you were talking to him you always thought that he might take you out to do something impish.

I followed Dad into the merchant navy at the age of 19. We became easy workmates and drinking buddies. Towards the end of his career, he became a consultant for the company and joined the same ship I was sailing on but was not a ranking officer, so I was technically senior to him on board. It never affected our closeness.

Read the full story on The Guardian website…

Visit Jason Cook’s website for more on his work…

“Death, even when it seems inevitable, doesn’t have to be painful”.

This is the conclusion in The Peaceful Way Out, an article by Nazeem Beegum on palliative care. Published last month in Panorama Magazine, part of Dubai’s English-language newspaper The Gulf Today.

The author writes based on her experiences during her mother’s treatment for cancer, describes the message of palliative care and goes on even to related concepts that are not usually talked about like ‘Palliative Sedation’.

Thank you Nazeem! The more the people writing about pain management and palliative care, the less the pain in this world.

Advocacy is indeed the need of the day.

Read below or download a PDF of the article:

THE PEACEFUL WAY OUT

Palliative care is a relatively unknown approach in healthcare. Ignorance, prejudice and lack of trust— all add to its unpopularity

by Nazeem Beegum

To quote the famous American feminist-writer Susan Sontag, “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick.”

For those living in the kingdom of the sick, needless to say, suffering is a constant companion. Illness and suffering always go hand in hand. From a minor flu to a dreaded disease like cancer, pain is the accompanying factor. And there is no better place than a hospital to realise this numbing truth. In that world of suffering and affliction, hopes and tears, human knowledge faces one of its biggest challenges — how to bring relief to terminally ill patients and make their remaining days comfortable.

It was the search for such a treatment that led Taif, a UAE resident of Indian origin, to Palliative Care for her mother who had been diagnosed with gall bladder cancer, already at stage four. “Palliative, isn’t it a morphine treatment? How could it help my mother who is fighting cancer at an advanced stage?” That was the question that had sprung up in her mind when she came to know about palliative care from an Internet friend.

She has changed her stand long since.

She lost her mother eventually but was thankful that she gave palliative care a shot. “Without that my mother wouldn’t have a comfortable life or a natural death,” she says. “For I have witnessed cancer patients moaning in pain. But thanks to palliative care my mother’s pain was considerably less and it was such a relief for us all.”

Dr Rajagopal, the pioneer of palliative care initiative in India, has this to say: “When we look after people with prolonged life-threatening illness, we go into not only physical problems, but also into their emotional, social and spiritual issues.”

Dr Rajagopal, an anesthetist by profession and at present head of Palliative Care Unit in Sree Uthradam Thirunal Hospital in Thiruvananthapuram, Kerala, got involved with palliative care out of sheer curiosity and decided to “do something” for those battling severe pain.

As an anesthetist, he knew very well how morphine was capable of relieving pain. In 1999, he got the rules for the availability of the medicine amended as a pain killer, making it easily accessible to patients undergoing palliative treatment. Until then its sale was restricted for fear of it being fallen into the hands of drug addicts.

To substantiate his argument, Rajagopal cites a World Health Organisation statement on palliative care: “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

While this approach is very popular in developed countries like the US, UK and Canada, it has few takers in developing countries. Lack of awareness in alternative approaches to healthcare and over-dependence on curative treatment as well as willingness to spend on aggressive and expensive medicines have kept people away from this holistic approach.

The biggest criticism of palliative care is its use of morphine on terminally ill patients. Some say overuse of morphine brings intense pain to patients and its efficacy decreases with time. Dr Rajagopal rejects this argument saying science has clearly established that there is no significant decrease in efficacy even if morphine is taken for a long time.

It is important to note that morphine does not work in everybody and in all kinds of pain. A small number of of patients may not respond adequately to it. Palliative sedation comes to rescue at this stage. “It is undertaken with the consent of the patient as well as the carers and members of the family,” Dr Rajagopal says. “Morphine is not just for terminally ill people. We had a lawyer under palliative care who practised for two years while on morphine and even attended court hearings. We had a builder who continued his construction business for more than a year while on morphine. We now have a man who has been doing a part time job as a vegetable seller for the last three years while on morphine,” Dr Rajagopal said.

Palliative sedation is used only on patients who have failed to respond to all other curative and palliative options. Some may view it as euthanasia, but in reality there is a vast difference. In euthanasia, there is a deliberate intent to end life whereas in palliative sedation the objective is to only reduce the pain.

Not all terminally ill people are given palliative sedation though.

“My mother was not given any palliative sedation,” Taif says. “I am surprised to see how a cancer patient like her would die from a massive heart attack like any normal person. And she proved herself that she was right in choosing palliative care over chemotherapy and radiation knowing that nothing was going to help her get rid of her illness.”

Taif’s 69-year-old mother was adamant that she wouldn’t be given the usual cancer treatment. Instead she made her children look for something that would make her comfortable in the endgame of life.

Is the patient then the sole master of his/her body?

Dr Rajagopal has no second thought about this, “Yes, it is the patient who has to decide about the kind of treatment she/he has to undergo. But that person must be given empowered with adequate information to take an intelligent decision.”

Usually when somebody is diagnosed with a life-threatening disease, what follows is shock and helplessness. The next thing the carers can think of is to rush the person to the best hospital to ensure the “best” of treatment. All this, of course, after a nerve-racking diagnosis process. The final stage is the inevitable hospitalistion and treatment. From that moment onwards, the patient loses his or her right over his or her own body.

But when viewed against palliative care, which offers maximum relief from pain to a patient by taking into consideration their needs, physical as well as emotional, this conventional approach seems to be so unfair. Death, even when it seems inevitable, doesn’t have to be painful.

• Download PDF

Amidst all the sadness, is it not heartening to see that someone cares?

The Assistant Sub-Inspector of Police, Mr Vijayraj, found Vasantha and brought her to us – giving us the privilege of doing what little we could to ease her suffering.

C. Maya reports in The Hindu on World Palliative Care Day:

For some respite from the pain

The Hindu: For some respite from the pain

Vasantha is just 37. But as she lies on the hospital bed, floating in and out of consciousness, she looks a hundred years old.

Painkillers coursing through her system sustain her through the day, giving her some relief from the unrelenting pain of cancer. But the anguish she goes through, just looking at her two young girls by her bedside, cannot be dulled by a shot of morphine.

Vasantha’s physically challenged sister, her sole caretaker, is helpless every time Vasantha cries over the fate of her children. Vasantha was brought to the palliative care clinic run by Pallium India at SUT Hospital four days ago by Vijayaraj, a palliative care volunteer. He found her at her house in Keezhattoor, Kattakkada, doubled over and writhing in pain. With pain relief and care, she is at least able to sit up and talk now. “All we can do now is to assure her that her two girls – aged 15 and 13 years – will be in safe hands,” says Vijayaraj, an ASI at AR Camp, Nandavanam.

Vasantha had been diagnosed with breast cancer four years ago and she had undergone mastectomy (breast removal) at the Regional Cancer Centre. By the time she came back from the hospital, her husband had abandoned her for another woman. With only an ailing father and a physically challenged sister at home, her hopes died fast.

“She used to go for manual labour and take good care of us. She kept her pain to herself and sent the children away to a charity hostel,” Vasantha’s sister says. She refused treatment because there was no money or support.

“I was fed up. I stopped taking the medicines because they gave me severe stomach upsets and mouth ulcers. I knew I was dying but nothing had prepared me for the pain that will kill me a little day by day,” Vasantha says.

Her children, brought to visit her by a neighbour, looked bewildered. Seeing their mother at peace had given them the tiny hope that she will come home soon.

“It is a sad, sad story and one that we cannot rewrite, however much we would like to. But then, this is the story of every patient we see,” says Dr. Sithara, at Pallium India.

“Think of the others whom we may not see at all, dying painful deaths in some dark corner. How can we, as a civilised community, just stand aside and shun all responsibility? Palliative care is not just about helping one die painlessly but about giving a helping hand to the devastated family to stand up and continue living. A government cannot do that always, but each one of us can,” M.R. Rajagopal, the chairman of Pallium India, says.