Tomorrow marks World Hospice and Palliative Care Day. It is too easy to simply roll one's eyes at the never-ending proliferation of special ‘days' that mark what seem to be a greater quantity of activist causes than we have days in the year. Worse, we can easily fall into the trap of believing that a single day of recognition will automatically lead to greater awareness, better policy, and social change. But when it comes to the movement for palliative care - that is, organizations dedicated to relieving suffering and improving the quality of life for people facing life-threatening illness - there don't seem to be many other options to spread awareness. With very few exceptions, mainstream media has shown no interest in reporting on the rights and realities of individuals who live with life-threatening illnesses. In fact, Google News shows a significant decline in coverage about palliative care from 2006 - 2009.

It is appropriate, therefore, that this year's theme for World Hospice and Palliative Care Day is “Discovering your voice.” Rather than relying on traditional media to pick up the cause, hospices and individuals around the world are encouraged to submit their own stories using digital media. They can submit their stories directly on the World Hospice and Palliative Care Day website. So far stories about palliative care have been shared from Portugal, Brazil, India, Malaysia, Malawi, Argentina, Belize, Nigeria, and beyond.

A significant challenge facing most hospices that would otherwise like to share their stories, however, is that their staff, patients, and volunteers haven't been trained in digital media production or even basic internet usage. It is for this reason that I took a scenic train ride from the Romanian capital of Bucharest to Braşov, where Hospice Casa Sperantei - a leader of palliative care in Romania and Eastern Europe - is training its staff how to use new media to 1.) spread more awareness about the daily realities of palliative care and 2.) tell the stories of patients to enable them to leave behind a legacy of their lives.

Last month Juhie featured excerpts of some of the testimonials from patients at the hospice. As you can see, most of the testimonials focused on the diseases which afflict hospice residents. In this workshop I wanted to emphasize that the testimonies and stories recounted on the project blog could be both fun and informative at the same time.

We decided to collaboratively create a storyboard and produce a video to tell a story in a creative way. After some deliberation the staff decided that they wanted to produce a farewell video for Iulia, the outgoing volunteer coordinator who is headed to medical school.

Later in the day Iulia, who has been involved in Hospice Casa Sperantei's blogging project, told me about some of the challenges they have been having in getting residents at the hospice to share their stories:

Still, the hospice staff is dedicated to moving the project forward to help spread more awareness about palliative care in Romania, and to help preserve the stories and memories of their patients. Anna, who is featured in the video with Iulia, will be taking over the role of volunteer coordinating and says that she is committed to the project.

Written by David Sasaki
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The Brasov-based hospice provides palliative care, a type of treatment that focuses on improving end-of-life care, including relief from suffering, for patients and their families. All the patients being cared for by the hospice are dealing with life-limiting diseases with no cure, such as cancer and HIV/AIDS. This kind of care, which for Hospice Casa Sperantei includes home care, inpatient units, an outpatient clinic and day centers, isn't widely available in Romania.

As part of a Rising Voices microgrant, the hospice is now also capturing and documenting their patients' stories. Through the grant, they have trained doctors, nurses, and staff to use audio recording equipment, conduct interviews with the patients and their families and take photos, so they can directly share the patients' stories and histories. Snippets of these interviews are now being posted in Romanian on a blog created by the hospice. To bring more awareness to the issue of palliative care, the hospice will also be blogging about this type of treatment, including its objectives, successes and challenges.

Malina Dumitrescu, the project's leader, had previously said that she hopes the patients' stories will help people in similar situations, as well as the patients themselves. Many of the stories posted on the hospice's blog focus on the struggles faced when dealing with a disease, attempts at staying positive, and how grateful the patients are to receive attentive care at the hospice.

Ion's story, for example, discusses his difficulty in supporting himself and how he found a home at the hospice. Known as K.I. on the blog, the 51-year-old has rectal neoplasm (or cancer of the rectum). Ion is also Roma, many of who suffer the worst health conditions in the industrialized world. He says:

I had a stroke and my wife lost her apartment. I was very worried and eventually got sick. In time the cancer disease appeared. I am currently living in a wooden home without light, and it’s a disaster area where I live. I cannot work anymore, as I don’t have dexterity and my hand shakes from doing anything. I was paralyzed too at one point, right-side paralysis and then the left side. I’ve got seven children and 11 nephews. I’ve got a child with his leg cut off and another one who is handicapped.

I think that through a common cold my tonsils got inflated. I didn’t notice, but from there they hardened and became like an egg. I’ve had x-ray after x-ray. I even had an infection that started spewing. I was eventually diagnosed with cancer…The doctor told me the people from Hospice Casa Sperantei could help me and tell me everything. I asked the doctor if there is a cure for my disease and she said no. So I am stuck with this wound that is spewing continuously. My head hurts like there are thousands of ants up there and my back aches.

My sickness began five years ago — two years I was in neurology and for two years I’ve been going to Hospice. It’s better here, it’s like my mother’s home, people with heart, very kind, and they listen to your troubles. I’ve gotten used to it. I know that there is nothing I can do and I have to get over this too. I was angry, so angry in fact I think that is what caused my stroke. I know that cancer is dangerous. I know how much we struggled with my mother. As much as I get from God, I will live, and the rest, oh well.

Agata, known as L.A. on the blog, has been at the hospice since 2002. Single and 33 years old, she has a brain tumor. In her post she talks about growing up with another health condition.

I was in the 11th grade when multiple sclerosis began. I was paralyzed from the waist down. I had to learn everything from zero, how to be a whole person, because it is very important to accept who you are. I started learning how to use the wheelchair. In the meantime my little brother was growing up. My parents divorced and so I learned how to do everything — how to be a housewife and sick and a sister. But the fact that I have taken care of my brother helped me overcome my impasse and that feeling of loneliness.

She goes on to talk about how her current diagnosis changed her life and helped her feel like a normal person again:

The diagnosis relieved my life, because I knew what I was fighting. Up 'till then I was on the verge of saying that all the symptoms were only psychological. Many people have left me, thinking that everything was fictive.

Gabriel, R.G. on the blog, also talks about his disease and his difficulties in dealing with a recent setback. The 64-year-old has leukemia and has been at the hospice since 2006. In this post he says:

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.

Gheorghe, called M.G. on the blog, also shares stories of struggling with his illness. He had larynx neoplasm (cancer of the larynx or the voice box). The 59-year-old was divorced and lived alone, as his daughter lives aboard. In this post he says:

The staff here [at the hospice] are obviously interested in the patient, they are conscience-stricken by the patient. In other places they come to give you the pill and even that as fast as they can, because they have other places to go to as well. Whilst here, they have time to tend to the patients…

…I don’t know but it’s as if I have no more feelings, as if I’ve been discouraged, as if I live for nothing now. If death were to take me now I wouldn’t be sorry, I would no longer torment others around me with my suffering. There aren’t any hopes. It is obviously pointless. I want to move forward, but even after eight months of treatment there are only problems and problems. I don’t know this disease's prognosis, whether somebody has made a recovery. I can’t tell, I haven’t heard anyone talk about it. I haven’t asked either, but I haven’t heard.

My greatest fear is not being able to move myself. To lie in bed and to have no one come and bring you a glass of water, then it’s really bad. And this is exactly what it’s going to be, and more, I say. The loneliness, that’s that. We’ll see, we’ll figure it out somehow. I feel more upset now that I’m ill, but what can we do about it. I keep moving forward. I can see, practically, that it isn’t good.

Gheorghe passed away in February after he shared his story with Hospice Casa Sperantei. He had been at the hospice for two years.

Written by Juhie Bhatia
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Now Hospice Casa Sperantei is taking their work one step further by capturing and preserving their patients' stories. The organization will be training its nurses, doctors, and staff in the upcoming months to use audio recording and photography equipment to collect their patients' stories and post them online. They will also be using online media to explain the objectives, successes, and challenges of palliative care, a type of treatment that focuses on relieving suffering and improving end-of-life care for patients and their families. This project is one of the six new health-focused citizen media outreach projects that were announced in June by Rising Voices and Open Society Institute’s Health Media Initiative.

Malina Dumitrescu, the project's leader, says they hope these stories will help people in similar situations, as well as the patients themselves. She elaborates:

By preserving testimonials of people affected by such diseases we would like to give value to their lives, experiences and feelings, showing them that they matter till the last minute of their lives. Our project will also help our own staff, strengthen their own motivation in the hard work of caring for incurable patients.

Hospice Casa Sperantei was founded in Brasov in 1992. Brasov, the seventh largest city in Romania, is one of the most visited places in the country, perhaps because of its central location. The city lies in the region of Transylvania, surrounded by mountains and at the foot of the Carpathian Mountains. This video shows images of Brasov. In 2004 Hospice Casa Sperantei extended their services, which include home care, inpatient units, an outpatient clinic, day centers, and hospital teams, to Bucharest, the country's capital. Over 7,000 children and adults in Brasov, Bucharest, and the surrounding areas have received Hospice Casa Sperantei's services since their founding. Dumitrescu elaborates on the kind of work they do:

The goal of palliative care is to improve the quality of life of patients, even when the disease has no cure. Palliative care focuses on pain and symptom control, also providing psycho-emotional, social and spiritual support to patients and families.

The organization also runs an education center in Brasov and a resource center in Bucharest, where over 9,000 specialists (such as doctors, nurses, volunteers, and social workers) have been trained. Earlier this year Hospice Casa Sperantei also signed a partnership agreement with the Ministry of Public Health to help develop a national plan for palliative care. Still, Dumitrescu says that palliative care is not yet widely available in Romania and that people suffering from cancer and other life-limiting diseases are neglected and often disregarded by public health services.

Patients are sent home and the family becomes the sole responsible for their care in the terminal stages of the disease. There are very few services provided in Romania for these patients (less than five percent of the actual needs are covered, mostly by non-governmental charities). We have patients of all ages suffering from cancer, as well as children with leukemia, congenital diseases, degenerative motor-neuron diseases and other life-limiting conditions…Most patients referred to the hospice are not aware of their diagnosis, as specialists fear to tell patients the truth about the disease. When they find out about the poor prognosis, patients need psycho-emotional support and good medical and nursing care.

Hospice Casa Sperantei is hoping this new project will help raise awareness of the benefits of palliative care. As part of the project, they will train doctors, nurses, and other staff to use audio recording equipment and also teach them interviewing skills. The staff will then record patients' stories in their homes, the day centers, and in-patients units. They will also interview family members and possibly staff working in palliative care. These stories will be posted online, along with photos if the patient agrees, and will also be featured in a monthly newsletter, as well as in press releases.

Project members are currently purchasing audio recording equipment, and nurses and doctors are in the process of identifying patients to participate. Though the organization has never used citizen media before, Dumitrescu says it is a terrific tool to bring attention to palliative care issues, which will hopefully increase the availability of this type of treatment in Romania.

Citizen media is a great opportunity to help our patients voice their feelings and experiences. Very few of them have the knowledge and the appropriate, modern technical equipment to do this. With this project we will help them share positive experiences or worries, thus supporting and helping each other in learning to live with the disease. Testimonials from patients and their experience in receiving specialized palliative care will also be used for advocacy purposes, in persuading health authorities to introduce and develop palliative care services as part of the national public health system.

Written by Juhie Bhatia
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