The doctors, nurses, and other staff at Hospice Casa Sperantei in Brasov, Romania, have one goal when caring for their patients – to improve their quality of life. They believe that all patients deserve the best care possible, including their own patients who are suffering from life-limiting illnesses with no cure, such as cancer.
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.