At this moment, over a million people in India are in unimaginable pain. We refuse to look the other way. We choose to hear the cry, and to do what we can.
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“End Game” Might Scare People, But it Shouldn’t

2018 May 26

Pallium India’s friend and volunteer Sunshine Mugrabi writes about a recent film on Netflix:

A woman lies in a hospital bed, her head shaved, her face pale yet luminous. The doctor at her bedside talks with her in a gentle voice, while her social worker looks on.

The camera pans to a whiteboard on the wall. A child has drawn a picture of her, with the words “Get well Mom” next to it.

This is the opening scene of “End Game,” a new documentary on Netflix that delves into the lives of terminally ill people during their final days.

A film about death and dying might not be most people’s idea of a fun evening’s entertainment. But the documentary is a beautiful meditation on what makes us human–in all its fragility, fear, humor and sadness.

The movie was shot in San Francisco, California in two locations: The University of California, San Francisco Medical Center, and Zen Hospice, a homelike facility on a residential street.

“End Game” grapples with death in close up, intimate ways rarely seen on screen.

As Mitra, the woman in the opening scene, reaches the end of her life, her husband Hamid and mother Vaji must make difficult decisions. Should they continue treatment or move on to palliative care? Should they donate her body to science?

In one poignant scene, Vaji and Hamid meet with a doctor who wants to enroll Mitra in a research project to study her cancer. This means opening her up after her death and removing the organs the cancer has attacked.

Vaji asks Mitra’s doctor what he would do if this were his wife or daughter.

“Be honest,” she urges.

It’s a good question. But he answers too fast that he would go ahead with it. This shows the empathy gap many families experience when dealing with doctors.

Vaji breaks down sobbing.

The scenes at Zen Hospice show a warmer atmosphere. Pat, an African-American woman with incurable uterine cancer, tells her story to a volunteer. Her eyes fill with tears as she recounts the moment her doctor gave her the news.

The tears spill over, but she also smiles. She talks about the relief she feels knowing she’s monitored and cared for. The day to day support is her focus now.

Zen Hospice Executive Director Dr. B.J. Miller fills the screen with his presence. He’s handsome, with chiseled features and salt and pepper hair. He talks about his philosophy, which is that rather than avoiding suffering, it’s better to move towards it.

Death isn’t hidden away there, he explains. This is followed by footage of staff members covering a body in flower petals.

Dr. Miller had his own brush with death. When he was in college, he and some friends were playing around on a parked train car. He was electrocuted. The doctors amputated his left arm below the elbow, and both of his legs below the knee.

His disability makes it possible for him to connect with patients and their families in a way that others might not, he explains. He doesn’t hide his amputations. Far from it–he wears short sleeve shirts and shorts that reveal his prosthetic limbs.

In one scene, he meets with a patient named Thekla, encouraging her to get comfortable with the idea of death. She says she has failed to “make friends” with death as he had assigned her to. So he suggests she find ways make the subject part of her life, not necessarily in a friendly way.

“The scary part is the unknown and the lack of control,” she says.

There’s camaraderie in this interaction. A partnership in which both are learning how to hold the mystery that is death.

In another scene, Dr. Miller welcomes a new patient to the hospice, a frail, emaciated Asian man. Dr. Miller tells him he’s become popular there.

The man’s face breaks into a near toothless smile. Later, the camera focuses on him as he’s being bathed in bed, bubbles covering his bony chest.

The film turns ordinary moments into meaningful ones. It shows that when death is near, it’s impossible to escape the reality that each one of those moments could be the last.

In this way, “End Game” succeeds in bringing out the complex yet beautiful experience that is death.

“This part of my life is wonderful,” Tekla says. “And who would’ve thought?”

You can watch the movie here: https://www.netflix.com/in/title/80210691

Until I became a patient…

2018 May 25

Any doctor might become a different doctor if they go through the experience of a patient, despite the special privileges that they may get in their own hospital.

Read the experience shared by Dr Marc B. Garnick in his article, Filling in the Gaps – the agony of looking at his own image on a screen with a second nasty cancer, the fatigue that he went through, the sheer burden of paperwork.

Reading this all makes one wonder whether we appreciate what the typical Indian patient goes through!


People waiting in front of Tata Memorial Hospital. Photo courtesy Dr. Lekha Viswanath

Goodbye, dear Lini

2018 May 24

Nurse Lini Sajeesh from Perambra in Kerala gave up her life in the service of the sick and ailing.

It was the first outbreak of an endemic of an hitherto almost-unknown virus – the Nipah virus. For Lini, it must have been just another patient with fever. She nursed the person with compassion; she clearly was close enough to contract the viral infection and sadly, died.

Lini, we revere you; we wish all strength for your family to cope with the loss. We pray for you and for them.

How many Linis will we lose – Nipah virus now, something else later? There is a pattern to our reaction to calamities like this: a lot of emotion, a lot of tears, and soon, we forget. And we bring out the compassion and tears at the next calamity.

Pallium India swears to do something at least in our own work setting. Are we protecting our nursing and other clinical staff enough? Are enough safety measures in place? We swear to look into these things and to establish a system that will sustain itself so that our clinical staff, in future, will stay as protected as possible.

What a gift! Thank you, Dr Frank Ferris and LDI team.

2018 May 24

The leadership development initiative (LDI) led by Dr Frank Ferris and colleagues was an epoch-making part of global palliative care history. From various parts of the Global South, 39 leaders got trained by this innovative programme.

All the proceedings are now available for free access online at http://www.ipcrc.net/ldi-curriculum-overview.php

You will find an overview of LDI at the top of the page, and all of the modules that we have permission to share, including:

  • New Introductions to each module with an overview, objectives, important teaching points and references
  • The PowerPoint presentation
  • The existing audio files will be available shortly

Please use and adapt these curricular materials freely, with attribution, and share them widely with colleagues.

The BBC on lack of palliative care in India

2018 May 23
Comments Off on The BBC on lack of palliative care in India

“A chronic lack of opioid drugs leaves millions of people throughout the developing world to live and die in unrelenting, excruciating pain. It is a particularly bitter irony in India, which historically had the world’s biggest legal opium poppy industry.”

Listen to the broadcast by BBC World Service on the lack of opioids and access to palliative care in India: https://www.bbc.co.uk/programmes/w3cswgkf

Also please read the article by Justin Rowlatt, South Asia correspondent, BBC: Why are so many people denied the painkillers they need?

Thank you, Laurence Knight, Justin Rowlatt and Varun Nayar of British Broadcasting Corporation, for bringing the issue to global attention and supporting our efforts to overcome it.