World Hospice and Palliative Care Day: Amplifying Voices

With hot button issues such as swine flu, abortion and health care reform often dominating the headlines, it can be easy to overlook an equally vital, though less attention-grabbing, health issue: palliative care. This type of care focuses on relieving suffering and improving the quality of life for people facing life-threatening illnesses, such as cancer and HIV/AIDS.

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

Hospice Casa Sperantei in Romania

Hospice Casa Sperantei, based in Brasov, Romania, is a leader of palliative care in Eastern Europe. The hospice received a Rising Voices microgrant last year to train its staff to use new media to share and preserve their patients’ stories, as well as spread awareness about Romania's palliative care issues. The project's blog shares patients’ stories in Romanian. For example, Gabriel, R.G. on the blog, has leukemia and has been at the hospice since 2006. In this post, the 64-year-old discusses his difficulties in dealing with a recent setback, saying:

“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.”

1 comment

  • E Mikkelsen

    I am Karina of the city of Mexico, I met Julian Wohler, in addition to being treated in Merida Yucatan received bone marrow transplant at the National Institute of Pediatrics in the city of Mexico, which was not easy to achieve this but with support of AMANC, disinterested people, donations of medical laboratories. Everything humanly possible, be made as in Belize do not have the infrastructure for treatment which was neuroblastoma IV. If I am writing these lines is because I was with him in their good and bad days as well as receiving the news of the transplant. The last time I saw him was when he was in quarantine after the transplant. I keep the memory of her smile and her hands caressing my face.

    Thank you for everything you taught me Julian…

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