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.

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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.

As part of this review they have undertaken 22 systematic reviews of topics relating to opioid treatment in cancer pain. These are published in the journal Palliative Medicine July 2011 vol. 25 no. 5389-390 (pubmed).

While they do highlight the limits of research in this field, they do provide the most up  to date  and comprehensive review of what we know about the use and side effects of opioids.

The EPCRC project to revise the European Association for Palliative Care (EAPC) guidelines on the use of opioids for cancer pain

In this special issue of Palliative Medicine, systematic reviews contributing to the development of the revised European Association for Palliative Care (EAPC) guidelines on opioid analgesics for the management of cancer pain are published. This brief comment tries to put this quite unique collection of coordinated articles in the context of the overall guidelines project and to help readers to make the best use of them.

The European Association for Palliative Care (EAPC) guidelines on opioid analgesics for the management of cancer pain were published in 1996 and 2001 and were seen as an evolution of the World Health Organization (WHO) recommendations, developing in detail the role of opioids in the analgesic ladder. The impact of WHO and EAPC guidelines on clinical practice and patient outcomes has never been demonstrated empirically, but it is likely that they had a profound influence.

• Full text here… (subscription required)

Poonam and CanKids

Pallium India is proud to report that as part of its “We Can, We Should, We Will Conquer Cancer” campaign, the American Cancer Society (ACS) has selected Ms Poonam Bagai as one of two Indian Global Cancer Ambassadors.

Poonam, herself a cancer survivor, is President of CanKids and vice-chair of Pallium India. Her selection as a Global Cancer Ambassador is based on her dedicated work in these areas over the last few years.

During June, along with other select Global Cancer Ambassadors, she will travel to New York to be trained by ACS on meeting with UN mission representatives and decision makers, and on advocating to make cancer a health priority in India and globally.

UN High-level Meeting on NCDs

ACS’s training sessions are in preparation for the UN High-level Meeting on non-communicable diseases (NCD) prevention and control, which convenes in September 2011. She will also meet with the Indian Mission to the United Nations to put forward specific requests to be presented at the Meeting.

The UN High-level meeting will bring together heads of state and other high level political figures to discuss NCDs (cancer, diabetes, cardiovascular disease, chronic respiratory disease) and create international policy guidelines to address NCDs. The Global Cancer Ambassadors are integral to implementing these guidelines.

The episode was broadcast as planned last week. Watch the section of the show here:

Some media comment on the broadcast:

• The Telegraph: Why the BBC was right to air footage of a dying man
• The Independent: Television is not how to witness the passing of a life
• The Daily Mirror: Gerald becomes first person in Britain to die on national television

And, from The Guardian TV review:

It is not the kind of thing I would choose to watch every night, but the film was a genuinely moving, unsentimental portrait of an intimate moment and, compared with the daily dose of violent death we get on the news, it did more to make death seem less scary than any theologian has ever done. I can’t say I would choose to have my death filmed, but it was Gerald’s death and Gerald’s choice.

What do you think? Please leave your comments here…

Maybe it can, but as things stand now, even the mention of death makes some people angry. Then what reaction would the filming of a dying process elicit?

The second episode of the BBC’s new series, Inside the Human Body, will show the final breaths of an 84-year-old man dying from cancer. The Guardian reports on the controversy:

BBC defends filming cancer patient’s death

The BBC has braced for criticism after filming the dying moments of a terminally-ill man whose family agreed for the death to be captured on camera.

A BBC science series, Inside the Human Body, will show the final breath of 84-year-old Gerald as he dies at home surrounded by his family. The producers recognised the second episode of the series, which includes footage of the death, would anger some people, but said they wanted to tackle the difficult subject.

Presenter Michael Mosely told the Radio Times he believed the programme was justified and that it was important not to avoid “talking about death and, when it’s warranted, showing it”.

“There are those who feel that showing a human death on television is wrong, whatever the circumstances,” he said. “Although I respect this point of view I think there is a case to be made for filming a peaceful, natural death – a view shared by many who work closely with the dying.”

It would not be the first time the BBC has faced criticism for showing death on screen. Early this month it was accused of being a “cheerleader for assisted suicide” after filming the last moment of a man at a Dignitas clinic in Switzerland for a Terry Pratchett documentary. The programme, due to be broadcast on BBC 2 this summer, follows a 71-year-old man in the late stages of motor neurone disease. The fantasy novelist, a vocal supporter of euthanasia, stays at his bedside until he dies from a mixture of drugs taken to end his life.

Inside the Human Body will track the development of a life – from conception to the grave – and will feature the moment of conception, a baby’s first breath, the body’s development to adulthood, and the body’s defence mechanisms.

The second episode, which features Gerard’s death, will also look at a woman who has survived for 10 years eating nothing but crisps, a man who can hold his breath for nine minutes, and another who can swim in water so cold it would normally kill. The final part will examine what happens when the body gives up its fight for survival.

“We met many wonderful people while making the series, but Gerald was special. We were privileged to share, with his family, his last few weeks and the moment of his final breath,” said Moseley.

After approaching several hospices asking for permission to film, A hospice in Pembur, Kent, had put the programme makers in touch with Gerald because they felt it was “important that life-threatening illness and death is discussed and understood more in our society”.

Gerald, who had cancer, said he hoped filming his death would help others. “I don’t want to die, but pretty evidently unless some miracle happens, I ain’t gonna be here very long … I’m not frightened,” he said.

“I don’t believe that it’ll be just like cutting off some tape with some scissors, though it might be. But either way I have blind trust that I shall not disappear completely,” he said. He vowed to see the start of 2011, and died on 1 January, surrounded by family.

Mosley said: “The death of a loved one is a hugely significant moment in all our lives, but not something to be feared. I watched my own father die. Just before the end he decided to start singing. He sang for several minutes and then he stopped and he was gone. I’m so glad I was there and the time I spent with him before his death are among the many memories that I treasure.”

UK readers can see this episode of Inside the Human Body on BBC One: Thursday May 12, 2011 at 9pm.

• Update: Watch the scene here…

Dr Prashant Pawar, Head and Neck Cancer Surgeon at Tata Memorial Hospital, asks us to support the Chew On This campaign:

Dr Prashant Pawar

Men and women as young as 18 years of age have to get their voice boxes, sections of wind-pipes, cheeks and tongues surgically removed as a result of their tobacco use.

You could save the life of a friend, or permanent scarring and suffering, by sharing Chew On This with as many people as possible.

Help me get back to my job at the cancer ward, rather than dealing with these entirely preventable tobacco-caused diseases.

Support the campaign & limit the devastating impact of tobacco by signing up at www.ChewOnThis.in

And watch this video with images the tobacco industry doesn’t want you to see:

The Chew On This campaign is supported by World Lung Foundation, Indian Dental Association, Voluntary Health Association of India, Doctors For You, Voice of Victims, Tata Memorial Centre, Mouth Cancer Foundation, Salaam Bombay Foundation, Healis – Sekhsaria Institute for Public Health, ACT-India, Art of Living Foundation, Brahmakumari, Gayatri Pariwar, Rotary Ahmedabad, International Union Against Tuberculosis and Lung Disease (The Union) and other NGO and civil society organisations for a Tobacco Free India.