Mr Piyush Gupta, Secretary of Cancer Aid Society, has worked hard in Uttar Pradesh (U.P.) and neighboring states for palliative care advocacy.

Most of the few palliative care services in Uttar Pradesh have been catalysed by his activity, and his interactions with the U.P. Government for improved opioid availability have also been very fruitful.

Piyush writes to inform us that Mr. M.K. Gupta, Excise Commissioner of U.P., has issued a circular to concerned officials in the state to cooperate in the matter of licensing medical institutions for morphine.

Those in U.P. can download the circular (in Hindi) below; you may need it to support an application for morphine licensing:

• Download: up-excise-morphinecircular.pdf (180kb)

Thank you Mr Gupta.

SPOTLIGHT…

How much progress has palliative care made in India during the last decade? Tremendous, if we count the number of palliative care centres.

But then we are busy playing the numbers game?

Morphine consumption is only one part of pain management, and no doubt pain management is only one aspect of palliative care. However, the fact remains that morphine consumption is the only reliable indicator of palliative care access that we have and particularly because morphine is the only step III oral opioid available in India.

As other existing systems of estimating morphine consumption are unreliable, we go by the quantity of morphine that goes out of the Government Opium and Alkaloid factory. And with some sadness we find that the consumption in 2009 is not significantly greater than in previous years:

Above all, let us hope that increased availability of palliative care services mean that more people are receiving better assessment and guidance.

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NEWS…

Palliative Care Improves Quality of Life, Prolongs Survival

A study in The New England Journal of Medicine reported that among 151 patients with newly diagnosed metastatic lung cancer, those who received palliative care along with standard cancer therapy had better outcomes. They:

• Had a better quality of life
• Experienced less depression
• Were less likely to receive aggressive end-of-life care
• Lived nearly three months longer than those who received cancer treatment alone

Download the PDF report here…

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Comment: What should medicine do when it can’t save your life?

Dr Michael Minton comments on an article in The New Yorker by Dr Atul Gawande:

“This is a very insightful article by an American surgeon who as a result of his concerns about how modern medicine can poorly serve the terminally ill patient, takes a journey of discovery and researches what the palliative care approach has to offer his patients.”

LETTING GO: What should medicine do when it can’t save your life?

by Atul Gawande, The New Yorker – 2/8/10

Sara Thomas Monopoli was pregnant with her first child when her doctors learned that she was going to die. It started with a cough and a pain in her back. Then a chest X-ray showed that her left lung had collapsed, and her chest was filled with fluid. A sample of the fluid was drawn off with a long needle and sent for testing. Instead of an infection, as everyone had expected, it was lung cancer, and it had already spread to the lining of her chest. Her pregnancy was thirty-nine weeks along, and the obstetrician who had ordered the test broke the news to her as she sat with her husband and her parents. The obstetrician didn’t get into the prognosis—she would bring in an oncologist for that—but Sara was stunned. Her mother, who had lost her best friend to lung cancer, began crying.

The doctors wanted to start treatment right away, and that meant inducing labor to get the baby out. For the moment, though, Sara and her husband, Rich, sat by themselves on a quiet terrace off the labor floor. It was a warm Monday in June, 2007. She took Rich’s hands, and they tried to absorb what they had heard. Monopoli was thirty-four. She had never smoked, or lived with anyone who had. She exercised. She ate well. The diagnosis was bewildering. “This is going to be O.K.,” Rich told her. “We’re going to work through this. It’s going to be hard, yes. But we’ll figure it out. We can find the right treatment.” For the moment, though, they had a baby to think about.

Read the full article at The New Yorker…

Dr Minton continues…

“He learns that patients who have the opportunity to receive palliative care alongside their anticancer treatment fared better than those who had treatment (usually chemotherapy) alone. The former patients used hospital and intensive care (ICU) less. They were more likely to achieve their wishes which often included being able to die at home. Their carers at 6 months after the death were better emotionally adjusted. The surgeon was also surprised to learn that in some groups of patients (eg cancer of lung and pancreas) even lived longer than those receiving palliative chemotherapy. He had previously believed that patients choosing palliative care always died sooner.

He came to appreciate that the majority of people are prepared to discuss their wishes for the future and write advance directives. In particular he was amazed to realise that carefully conducted consultations can help patients, families, and their doctors identify the expectations and anxieties which enable more patient orientated care to be given. He concludes that doctors must be prepared to discuss end of life issues and help patients plan for their future even while pursuing further treatment.

He highlights a hospice doctor who reminds him that effective communication is an acquired skill and requires no less experience than performing a surgical operation. The key features of an interview are to allow and facilitate the patient to explore their understanding of the illness and prognosis, including anxieties about the future. This requires the doctor to actively listen and acknowledge these concerns without necessarily trying to provide all the answers.

This is an honest and revealing article of a surgeon who stops to think about his dying patients and learns what palliative care can offer his patients. I urge you to encourage any sceptical colleagues to read the article.”

.

[Dr Gawande has written some eye-opening articles on the US healthcare system. Read them at the The New Yorker website and many others on Gawande.com - including the commencement speech to graduates at the Stanford School of Medicine: "The Velluvial Matrix" ]

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Tell Me the Truth: Conversations with my Patients about Life and Death…

Australia’s Brisbane Times speaks to Monash Medical Centre and Dandenong Hospital oncologist Ranjana Srivastava about her new book, Tell Me the Truth: Conversations with my Patients about Life and Death, in which she says not all 100,000+ Australians diagnosed with cancer this year will get the medical treatment they deserve:

The Best Medicine

AS A child growing up in the impoverished Indian state of Bihar in the 1980s, Ranjana Srivastava’s first encounter with cancer broke her heart. In what felt like a matter of weeks, the disease transformed her energetic grandmother into a vulnerable, ailing person who spent her last days confined to a hospital bed.

Despite being treated by one of the best cancer specialists in the region, Srivastava’s ”Nanima” did not receive good care. As she was shunted through the health system for a multitude of tests and procedures, her doctors fed only morsels of information to her eldest son, who, despite his best efforts, struggled to understand what it all meant for his mother.

Towards the end of Nanima’s life, the lack of communication between these doctors and her family led to a tragic end. Without knowing her grandmother’s prognosis, Srivastava, then 10, and her mother flew to Britain to visit family. While they were gone, their beloved matriarch fell into a coma and died. She was cremated before they could get back to see her one last time. There were things they wanted to say. They did not get a chance to say goodbye.

[..]
”We spend a lot of money on futile medicine and intensive care at the end of life and if we have limited resources like every nation does, we need to be thinking about how those resources are best allocated. I think investing in palliative care and boosting support services for sick people is very important. Those things should not be an adjunct…”

Read more at The Brisbane Times…

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New York’s Palliative Care Information Act

Here is a new development from USA reported by the New York Times, “Frank Talk About Care at Life’s End“:

Last week, over the objections of New York State’s Medical Society, Gov. David A. Paterson signed into law a bill — the New York Palliative Care Information Act — requiring physicians who treat patients with a terminal illness or condition to offer them or their representatives information about prognosis and options for end-of-life care, including aggressive pain management and hospice care as well as the possibilities for further life-sustaining treatment.

The report also quoted the recent article in New England Journal of Medicine (see our blog) along with an October 2008 study published in the Journal of the American Medical Association, in which Boston researchers found that patients who had end-of-life discussions with their physicians:

“.. were more likely to accept that their illness was terminal, prefer medical treatment focused on relieving pain and discomfort over life-extending therapies, and have completed a do-not-resuscitate order.”

The bill was developed by Compassion and Choices, calling the decision “A Sea Change in End-of-Life Care” in the Huffington Post:

The bill, developed by Compassion & Choices in concert with our New York affiliate, passed the Assembly and Senate by large margins, but the governor’s signature remained in doubt because the Medical Society of New York pressed him for a veto. The Society’s inane claim that doctors who ask if their patients want to talk about palliative care, won’t also “fight” for their patients or “go the extra mile” to “aggressively recommend treatment options” defies both common sense and medical research. – Read more…

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Economic Effect of Terminal Illness on Families

A small international study, published in the Journal of Palliative Medicine, reports that families of terminally ill patients suffer significant economic effects related to the illness, forcing some households to accrue large debts and rendering them unable to afford food or attend government-funded education programs.

A sample of eleven patient-caregiver dyads (22 individuals) who visited Pallium India‘s Palliative Care Clinic in Trivandrum, Kerala, India completed a survey.

All of the respondents said that as a result of the illness they had to sell assets and it left them unable to work at the same level as before the illness.

A majority of caregivers said that they would have accepted outside help and they thought that having someone else to tend to their loved one would have prevented some sacrifices.

The full study can be downloaded here (pdf): Economic Impact of Terminal Illness and the Willingness to Change It

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Award at 13th World Congress on Pain

On 2 September, Dr M.R. Rajagopal received the annual award of International Association for Study of Pain (IASP) for Excellence in Pain Management for Developing Countries.

Sir Michael Bond, chairman of the developing countries’ working group of IASP presented the award at the 13th World Congress on Pain in Montréal, Canada. The congress was attended by more than 6,500 delegates.

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University of Wisconsin-Madison Carbone Cancer Center Seeks Policy Researcher

The Pain & Policy Studies Group (PPSG) at the University of Wisconsin-Madison Carbone Cancer Center is seeking a suitable candidate for the position of full-time Policy Researcher. The PPSG is seeking:

• a motivated professional
• ideally with experience in legal and policy analysis related to health or drug control law

to help achieve:

• its mission to improve global availability of, and patient access to, essential controlled medications for pain relief and opioid substitution therapy.

Application deadline: October 4th, 2010

Full details and application information here….

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TAILPIECE…

People keep asking us how we manage to find the funds for our service, when 82% of our patients need to be given free treatment including free supply of medicines and care of one patient costs an average of Rs1000 per week. Here is how…

• One year old “S” will have no birthday party. Oh, yes, there will be a cake and celebration within the family. But what would have gone towards a party for friends and the extended family has now been handed over to us. “She will be blessed!”, her mother said simply.
• When 45 year old Mr. K.N. died, there was no typical “Sanchayanam breakfast” for hundreds of people on the 5th day-rituals. Instead, the money came to us.
• Pooja qualified as an engineer and got a job. 10% of her first salary came to us.
• Ms P.B. disposed of some property. A certain percentage of the proceeds, Rs. 70,000, was donated to Pallium India.

These are just a few examples. We are blessed!

What do Goa & Guatemala Have in Common?

The natural beauty of the land of course. But apart from that?

They share the pain and sorrow of man-made suffering in the face of disease.

Liliana DeLima, the executive director of IAHPC (www.hospicecare.com) writes about the “archaic restrictive laws” in Guatemala that prevented access to pain relief even in the face of a disease like advanced cancer. It almost reads like a horror story.

1. A representative of the National Competent Authority has to carry out visual inspections to ALL patients who are prescribed opioids. During this visit, the government representative verifies if the patients is really sick, verifies the amount prescribed, the amount dispensed and the amount taken by the patient to supposedly certify that no diversion has occured.
2. All physicians who prescribe need to submit monthly reports to the MOH with the names of the patients they prescribed opioids for, the diagnosis, the total amount in the month, the dates of prescription, the quantity and the formulation.
3. Patients who need opioids HAVE to travel to the capital to get their prescription stamped and approved by the NCA office – regardless of where in the country they are located. They have to travel each time with their prescription, get it stamped (confirmed as legal by the NCA) and then they can go to a pharmacy to buy it.

Fortunately, things have changed for the better in Guatemala very recently, and some of the restrictions have removed. But we have not done so well in Goa, the tiny beautiful coastal state in India.

In 1998, the Government of India asked all Indian states to simplify their narcotic regulations following a model structure. Goa is one of the 14 which did. But Goa effectively thwarted the purpose of the amendment by bringing in new barriers. The Goan with advanced cancer is forced to take every prescription to the Directorate and “apply” for a permit. He can buy the drug only when the permit is issued!

Good News from Vienna

The United Nations’ Commission on Narcotic Drugs (CND) met last week in Vienna.

Thanks to advocacy by several agencies, most noticeably Human Rights Watch, the commission has recognised that its role is not only to control narcotic drugs but also to ensure its availability for medical purposes.

Human Rights Watch conducted a side-event promoting the global need for opioids for pain relief which was attended by several organizations including PPSG and the Access to Control program of WHO and about 70 CND delegates from all over the world. HRW statements: Day 3: statement to the plenary & Day 4: supply reduction plenary

At the CND meeting, Mr Costa from UNODC highlighted [PDF] the need for improvement in opioid availability for pain relief.

The week long meeting passed a resolution “Promoting adequate availability of internationally controlled licit drugs for medical and scientific purposes while preventing their diversion and abuse.” [PDF]

We are sure it will be a powerful tool in our advocacy for pain relief.

News from the Opioid Availability Front

We have been blessed for a long time by strong support from the Department of Revenue and from the Narcotics Commissioner (and many other authorities) of the Government of India. The new desk calendar produced by the Narcotics Commissioner of India attracted international attention during the CND meeting at Vienna. It carries a slogan “Opium for Pain and Palliative Care”. Congratulations and thank you, Mrs Jagjit Pavadia!

So far in India, manufacturing of opiumand morphine from poppy has been the monopoly of the Government of India. In recent years, there has been a move to privatize this. We had a concern that this would steeply increase the cost of morphine. We now learn that the process of privatization has been delayed. The two firms which had initially come forward seem to have backed out. While the Government is still proceeding with the decision to privatize, it may take some considerable time to materialize.

Prestigious Award to Kathleen Foley

The Global Palliative care community rejoices the decision of the International Association for Study of Pain (IASP) that its John D. Loeser Distinguished Lecture Award goes to Dr Kathleen Foley. Dr Foley is an attending neurologist in the Pain and Palliative Care Service at Memorial Sloan-Kettering Cancer Center in New York City.

In IASP’s words,

the award recognizes work that gives new perspectives to understanding the experiences of pain and that opens the door to future reductions in suffering…

She is professor of Neurology, Neuroscience and Clinical Pharmacology at Weill Medical College of Cornell University, and holds the chair of the Society of the Memorial Sloan-Kettering Cancer Center in Pain Research. All that is how she is described in IASP’s newsletter. Let us provide our own six-word description of Kathy Foley:

She knows. She understands. She cares!

Congratulations, Kathy, and thank you for all that you are doing for this world.

Watch Dr Foley’s lecture “Pain and Palliative Care: What the Future Holds”

Annual Conference of IAPC at Lucknow

Mr Piyush Gupta of Cancer Aid Society, the organizing secretary of the next conference of the Indian Association of Palliative Care (IAPC) at Lucknow (U.P) on 11-13 February 2011 invites you to visit the conference website www.iapcon2011.com and to save money by availing the facility of early bird registration.

Last date Extended for Pallcare India Project

Pallium India has invited applications from cancer centers and Medical Colleges in North and North-East India for a project funded by Savitri Waney Trust, Farida &Yusuf Hamied Foundation and Bruce Davis Trust.

Please note that the last date for receipt of applications has been extended to 30 March 2010.

For details, see http://palliumindia.org/projects/pallcare

Leadership Development Initiative (LDI) at San Diego

San Diego Hospice and Open Society Institute together organized a Leadership Development Course for Palliative Care professionals from 15 different countries at San Diego, California.

Dr Priya Kulkarni from Cipla Hospice, one of the doctors who attended the course (the others from India were Dr Gayatri Palat and Dr Anil Paleri) writes about her experience.

We had the opportunity to learn from eminent teachers like Dr Frank Ferris, Dr Charles Von Gunten, Dr Kathy Foley, Dr Mary Callway, Dr Liliana De Lima and Dr Joe Harford.

A few of the things that I learnt from this course:

• Leadership may be by chance or by choice
• Identifying different personality types helps in dealing with team members as required.
• SWOT analysis (Strengths – Weaknesses-Opportunities – Threats) permits self analysis at depth.
• Developing a plan for individual development was thought provoking.
• Presentations related to Situation analysis from different countries and different individuals identified the similarities as well as country-specific problems.
• Presence of a Theatre and Drama person during the course helped us to make conscious efforts to learn presentation skills.

All the arrangements were excellent. It looked like a perfect team, all members performing in perfect synchronization with each other.

The Olbermann Videos

The ugly face of politics can distort any truth. In the recent American controversy which culminated at Blair House on the 25th of February 2010, palliative care services came to be called “death panels”!

You must watch Keith Olbermann’s “Countdown” at MSNBC where he describes his father’s experience in a hospital and proclaims that palliative care is indeed a “life panel”!

Please visit our blog and you will be able to watch the Keith Olbermann videos:

• An American Cry for Help
• Respecting Pain & Patient

Sadly, Mr Olbermann Sr passed away last weekend, read Keith’s tribute here…

Dignity and the Essence of Medicine

Olbermann’s description of his father’s experience brings to mind the following quote from Chochinov (BMJ.2007.335; 184-7):

“Treating a patient’s severe arthritis and not knowing their core identity as a musician; providing care to a woman with metastatic breast cancer and not knowing she is the sole carer for two young children; attempting to support a dying patient and not knowing he or she is devoutly religious — each of these scenarios is equivalent to attempting to operate in the dark.”

The United Nations’ Commission on Narcotic Drugs (CND) met last week in Vienna.

CND Delegates

Thanks to advocacy by several agencies, most noticeably Human Rights Watch, the commission has recognised that its role is not only to control narcotic drugs but also to ensure its availability for medical purposes.

Human Rights Watch conducted a side-event promoting the global need for opioids for pain relief which was attended by several organizations including PPSG and the Access to Control program of WHO and about 70 CND delegates from all over the world. HRW statements: Day 3: statement to the plenary & Day 4: supply reduction plenary

Antonio Maria Costa

At the CND meeting, Mr Costa from UNODC highlighted [PDF] the need for improvement in opioid availability for pain relief.

The week long meeting passed a resolution “Promoting adequate availability of internationally controlled licit drugs for medical and scientific purposes while preventing their diversion and abuse.” [PDF]

We are sure it will be a powerful tool in our advocacy for pain relief.