World Hospice and Palliative Care Day, which takes place today, seeks to change that by celebrating and supporting hospice and palliative care globally. While it's true that one day is not enough to create real change for the millions of people who rely on or need this type of care, it can help bring much-needed attention to the issue. Not only are these stories largely omitted from news headlines, one study finds that even online educational materials about the topic need to be revised to make them more understandable. Throughout much of the world there's a lack of understanding about this type of care, as well as a lack of access to these services.

The theme for this year's World Hospice and Palliative Care Day is “Discovering your voice,” so organizers asked people from around the world to make their voices heard and submit their stories online. In response, people from countries ranging from Portugal and India to Malaysia reflected on the issue. Beatriz Thompson, for example, of Belize shares this account:

“This is the story of a brave little boy. His name is Julian Wohler. At the age of one and a half year he was diagnosed with neuroblastoma. Julian fought this cancer for 4 1/2 years. He underwent 5 surgeries cycles of chemo and radiation in Merida Yucatan, Mexico. Julian had to travel 11 hours from Belize to go receive treatment every 2 weeks. When the tumor came back for the last time Julian told his parents he was not going back for anymore chemo or surgery. He wanted to stay home and enjoy himself.”

Hospice Casa Sperantei in Romania

“My disease began last year with partial paralysis. I did 10 sessions at the hospital and I felt like everything was changing for the good. Three days later, I was in the kitchen and I fell down. Since then no more stability and I am very weakened. Firstly it affected me in a psychological way, like I was being destroyed. I was on the verge of disappearing, I wanted anything to happen, just to escape, because it is torture, a very hard torture.”

Judi Chamberlin, blogging in the United States on Life as a Hospice Patient, also shares the ups and downs of having a life-limiting illness. She suffers from a chronic lung disease and lung infection, among other health problems. In this recent post, she talks about feeling discouraged and reflects on her father:

“I find myself saying so many of the things my Dad used to say in his final months–he used to talk about feeling weary, and now I know just what he meant. Everything, even the most mundane activity, like going to the bathroom, becomes a major production. When someone would point out some nice upcoming activity he would say “hallelujah” or “whoop-de-doo,” hating to be diverted with something that felt so minor in the grand scheme of things. And although he was eighty four when he died, and I'm not quite sixty five (my birthday is October 30th), I know just what he meant when he would say, “I've lived too long.” I always planned to live to a ripe old age, but that was only if it was an active, busy life–the life I used to lead, the life I loved.”

In addition to firsthand accounts of living with a disease, many palliative care-related blogs, videos and other new media also share the views of caregivers, health care professionals and family members of someone with a life-threatening disease. In Uganda, patratm, a doctor and hematologist, tweets about various palliative care issues. In South Africa, a video shares the story of Zodwa Sithole over images of hospice care. Sithole watched her sister die of cancer at a hospice and is now part of the Hospice Palliative Care Association of South Africa.

Risa Denenberg, blogging on risa's pieces in the United States, is a nurse who looks after patients with life-threatening illnesses. In her blog she reflects on her experiences as a palliative care provider. In this post, she talks about the pain of losing a patient:

“Pager bleats its rising and lowering notes (de-da-do-da-de). Familiar as my name, but as I am wading from sleep to wake…It's the nursing home, telling me he has died. It's 2:15 am…

…The hardness was that he didn't want to die, wasn't ready, much too young, much too much undone, had just started over, this thing caught him in the neck and strangled him without so much as a warning punch. And the pain. Was terrible. Even on the highest doses of opioids I have ever prescribed. Pain mixed with fear, anger, angst. I think I loved him for these few weeks, a helpless sort of love because I couldn't make it better. I thought.

Daughter said to me: “He liked you. Really liked you. That's a big complement, you know. He sees right through shit, and you were real to him.”

shantanu.dutta, blogging on Mutiny in India, talks about a friend who died of cancer at a hospice. At the time, there seemed to be only one hospice in New Delhi, where space opened up when a patient passed away. He says he learned the value of hospice firsthand through that experience:

“The famous psycho-oncologist Buckman…said that “there was one missing chapter in Harrison's Textbook of Internal Medicine. The missing chapter was, ‘What do you do when all the treatment advised in all the other chapters fail?'

Palliative care is that missing chapter. It is missing in our planning, priorities and programs but is fast emerging from the shadows as an urgent necessity as we and our loved ones live longer and become more and more prone to debilitating and life threatening diseases that can not be perhaps be cured but with some a professional approach endured, and possibly endure well.”

In light of a Washington Post report which “ominously tells us that the World Health Organization warns that we are on the verge of a global pandemic”, Guyanese blogger Imran Khan is heartened by the call of a local journalist for “his colleagues in the media to pay greater attention to the swine flu situation”, but still wonders about the government's pro-activeness:

I have seen reports from Minister of Health Dr. Leslie Ramsammy saying that the government is monitoring the flu virus but this is a quickly developing and changing threat and I have seen no updates since. I noted that he had warned that anyone who begins to feel ill should quickly head to the nearest medical post. Good advice I suppose but what PRECAUTIONS should people take?

I am uneasy (and I am sure thousands of others are as well) but we are not getting clear, consistent, regularly updated messages from the Ministry of Health. We are effectively fending for ourselves.

Jamaican blogger Mark Lee, blogging at Abeng News Magazine, is also paying attention to the WHO's warning, as are the folks at Barbados Free Press:

We at Barbados Free Press are willing to bet that in two months time this new crisis in the travel industry will be ending. Our leaders should not only be thinking about what is to be immediately done to protect everyone, they should be planning for the recovery of our tourist industry after this swine flu passes.

BFP's compatriot Barbados Underground adds:

The medical authorities in the USA are being very negative in their forecast on how this pandemic will spread. This is not good news for the Barbados authorities, North America is a top three tourist market for Barbados.

At this point we can only hope that the Barbados government is able to galvanize all the stakeholders to treat with this matter with the seriousness it deserves.

…while Pull! Push! learns from a local mainstream media report that:

‘Barbados has been placed on a swine flu virus alert' and ‘two local samples had been sent off to the Caribbean Epidemiology Centre (CAREC) in Trinidad and Tobago to be tested for the virus.'

As if to put Barbadians' minds at ease, Keltruth Corp. posts a link to a website that is tracking existing cases of the virus on a world map:

So far, Florida, the West Indies, Africa and Asia are in the clear.

This has not stopped Belizean bloggers from being concerned. Lee Vanderwalker, an artist/blogger who divides her time between her house in Belize and her studio in Mexico, is right in the thick of things:

I'm not high risk since I hardly ever leave the house anyway and I promised myself when I moved to Mexico to not stick my fingers in my mouth. I am most concerned with Belize closing its border with Mexico, that would really mess things up.

So I´m making preparations for a long quarantine, stocking up on food and medicine and hunkering down. My gut feeling is that as usual the media overblows everything and that its not as bad a they make it seem, but on the other hand…

Belizean reports that the country's government “reacted to the threat posed by the Swine Flu Virus and has today ordered the closure of major public events including the National Agricultural and Trade Show which was to have started tomorrow 1st May”, adding:

The closure of the National Agricultural and Trade Show (NATS) is unprecedented. The postponement of the annual general meeting of the Holy Redeemer Credit Union and several other weekend events planned for a long Labour Day weekend have flummoxed most Belizeans.

Over in Cuba, Generation Y questions the decision to continue with planned May 1st celebrations:

My experience with colds and flu-like illnesses tells me that a huge mass of people is the scenario most conducive to their spread. The announced measures should include, for the minimum protection, the postponement or cancellation of the festivities for International Workers’ Day. I don’t want to create unnecessary alarm. I don’t know anyone who is infected and an official statement has been released saying that there are no recorded cases of this disease, but remember they told us the same thing for a long time about AIDS, before finally confessing that it had entered Cuba, not to mention keeping secret the number of dengue fever cases each year.

With all humility, I ask the Cuban government to re-think the idea of bringing together thousands of people at this time. Please, show less concern about the spectacle and more protection for the citizenry.

Letters from Grenada, meanwhile, cannot help but notice that:

Fewer than 200 people have contracted swine flu, and everyone gets mask-happy. Meanwhile, MILLIONS have died of AIDS, yet some people still don’t use condoms.

I’m not saying swine flu isn’t real.

But it is a fact that masks do not prevent transmission. I also believe that mass hysteria never ever helps. Example: Once upon a time, people believed in witches. So they hung/burned/drowned these alleged witches. Also, their cats. Then the rat and flea populations exploded. Hello, bubonic plague.

So, just in case, Cuban diaspora blogger Sunrise in Havana posts a list of handy tips to help avoid contracting the flu “without dangerous drugs or vaccinations”:

I have not caught a flu in over two decades, and you can avoid it too, without getting vaccinated, by following these simple guidelines, which will keep your immune system in optimal working order so that you're far less likely to acquire the infection to begin with.