//Terminally ill suffer needlessly in India

Terminally ill suffer needlessly in India

Koyilandy Palliative Care SocietyThis week Human Rights Watch released Unbearable Pain, an extensive report on palliative care in India. The organization believes that denying sick people pain relief violates a basic health care right, and that the Indian government should require hospitals to provide terminally ill patients with morphine. Worldfocus interviewed Diederik Lohman, the lead researcher for HRW’s report about the issue.

How does palliative care in India differ from palliative care in other countries?

Lohman: Palliative care itself isn’t really all that different. But what is really different is that in U.S. hospitals, it’s inconceivable that you wouldn’t have morphine. And in India, doctors aren’t trained to deal with pain and provide psycho-social support.

In many Indian hospitals, this is absent completely. The focus is on cure, and palliative care is basically just not a part of the equation. During our research, we spent a lot of time with patients who had not been able to access morphine in the early stages of their illnesses.

For Brent Foster’s multimedia piece, Human Rights Watch chose not to depict sick people who lack access to morphine. In your report, were you able to cover all sides of this story? What can you tell us about the group of people who lack access to palliative care?

Lohman: There are two reasons why we tried to interview people with a history of no access but who had then received morphine. The first reason is practical. If someone is in severe pain, you can’t interview them. You can’t really get more information from them about what exactly happened and what their doctors told them. And then there is the ethical reason. You ask people to tell you how bad their pain is and what the pain does to them — but you’re unable to offer them any help getting access to treatment!

We felt that it was better to talk to people who did have access to morphine. The consequences of that decision were that we talked to people who were relatively lucky. There are hundreds of thousands of people out there who aren’t that lucky.

What was the most difficult aspect of covering palliative care patients in South India? How were you affected emotionally?

Lohman: I interviewed a number of children who were terminally ill, and several of them died within weeks or months. Seeing children who are desperately ill and just want to be kids and play but have to be attached to machines and get really toxic medications, that’s a pretty tough thing to go through.

On the other end of the spectrum, we also worked with people who were providing palliative care and were some of the most compassionate people I have ever seen. It’s also very inspiring to see Indian doctors, nurses and social workers say this is just not acceptable that some people have to suffer from pain treatable with inexpensive medicine.

[Palliative care] is one of these things that brings up a lot of negative and positive emotion. You see some of the worst neglect but also see people commit themselves — beyond belief — to change the situation in their country.

What did the experience teach you about making palliative care more available in the U.S.?

Lohman: I think that, as a matter of principle, it should be available to be all those who need it. And I think that, in countries like the U.S., palliative care is available much more than for patients in India.

But that doesn’t mean that the system we have in the U.S. is perfect. There are always going to be groups of patients who somehow fall outside the scope of services available. One of the things that we see in medicine around the world is that, with the advent of increasingly sophisticated diagnostic tools and increasingly powerful medications, the focus is so much on prolonging life and on defying death.

There are a a lot of doctors who start seeing sick people as having illnesses inside a body and don’t pay attention to the well-being of the individual. The focus is on curing the individual and not on quality of life.

Though sometimes neglected, it’s really important for health care systems in the U.S. to keep in mind the quality of life for patients even as they’re going through curative treatment. Medicine has to have a human face. It’s often a discipline dominated by machines and medication — without thinking about the human who is the host of the disease.

worldfocus.org, October 30, 2009