Journal of Palliative Medicine

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

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.

M'Michèle performs at the Congress Welcome Reception

We are happy to announce that the August issue of SAHAYATRA, our monthly Malayalam newsletter, is now available for download here…

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…

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…

“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.”

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Dr Atul Gawande

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”

• 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…

In a few years, those aged above 65 years would soon outnumber children under the age of 5; by 2030, their population would touch a billion… a burgeoning section of society whose demands on health care, and specially palliative care, threaten to topple the existing frail systems.

Is it a surprise that in a nation where three-fourths of the population survive a daily existence, unaware how to “live” a life, there isn’t much thought given to how we die? [..] dignity in death is a pipe dream for those who have to fight for dignity in life…

So writes Ameet Bhuvan from Bhubaneswar, India, in response to a Healthcare Report “How We Are Dying?”, featured in the Outlook magazine, which has picked up on the report from the Economist’s Report and Index on Quality of Death and Dying.

But, Kerala stands as a “beacon of hope”. With only 3% of the country’s population, Kerala is not only the lone state to have a formal palliative care policy in place; it also provides 2/3 of the care services available in India, with the government providing funding for community based care programmes.

It is also one of the first of Indian states to relax narcotics regulation to permit use of morphine by palliative care providers.

More interesting insights into this issue are available at Outlook Magazine: How We Are Dying?.

The article describes the development of the palliative care movement in Kerala and talks about the deplorable state of affairs in most of the country:

PK. Ashokkumar remembers those days so well. He watched his friend’s wife slowly succumb to the rogue cells that were eating up her body. The two doctors tending 28-year-old Soumini Radhakrishnan knew they couldn’t keep her alive, but were determined that she would die with dignity. Kumar watched while they steered her towards a near painless death — giving birth to a movement that has now swept across Kerala.

Read more at The Telegraph…

Mr Nair, a patient with chronic pain and Dr Nirmala, a palliative care physician, at the Onam feast at Trivandrum Institute of Palliative Sciences

Onam is the annual harvest festival of Kerala, one that symbolises plenty, truth and honesty.

The celebrations have started and will reach its peak on “Thiru Onam” on Monday the 23rd of August.

Pallium India wishes all its friends a very happy Onam!