FHI - FHI and Partners Help Vietnam Develop Guidelines for National Palliative Care Program

OCTOBER 2008 — Vi, 7, is sad when her mother, Hang, is sick and in pain. Hang, HIV-positive and widowed at 28, lives in Van Don district, Quang Ninh province, Vietnam. Once frequently ill, Hang often found it difficult to care for Vi, despite her family's support. Then in late 2005, Hang heard about an FHI-supported outpatient clinic for HIV-related palliative care and treatment. Now she has access to care, support and treatment through the program. She feels much better and so do her daughter and family.

Palliative Care in Vietnam

Vietnam is home to some 263,000 people living with HIV/AIDS. More than half need palliative care, estimates Kim Green, FHI's senior technical officer for care and support in the Asia and Pacific region. Like most developing countries, however, Vietnam has few palliative care programs. But now patients have new hope: Vietnam recently developed national palliative care guidelines. The Ministry of Health selected FHI and the Vietnam-CDC-Harvard Medical School AIDS Partnership (VCHAP) to lead development and implementation of the guidelines, working closely with the U.S. Agency for International Development and the Centers for Disease Control and Prevention. The effort is supported and funded by the U.S. President's Emergency Plan for AIDS Relief. Approved by the Ministry of Health Scientific Committee in September, the guidelines will form the basis for a national palliative care program.

In summer 2005, as a first step toward preparing the guidelines, researchers interviewed 451 HIV/AIDS and cancer patients, caregivers and bereaved caregivers, health care providers and policymakers in five provinces with a high prevalence of HIV or cancer. They discovered that 82 percent of interviewees were either "unhappy" or "very unhappy," with 75 percent of patients experiencing pain. More than half of those who reported pain said they suffered from it once a week or all the time. Seventy-five percent of health care workers interviewed were unable to identify correct pain management strategies and only five percent reported that oral morphine was available in their healthcare settings.

"My sister was in terrible pain in her last days," said one caregiver. "She looked very pale and coughed a lot. No one mentioned morphine to her."

Stigma and Discrimination, Obstacles to Care

Patients and caregivers in Vietnam also spoke of stigma and discrimination faced by those living with HIV/AIDS. Their responses showed how stigma, coupled with a lack of patient confidentiality, can discourage people from accessing care and treatment. "My husband was staying in the hospital, but they didn't take care of him because they knew he was HIV-positive," said one woman. "Even when he was in pain, they didn't pay attention to him." Another interviewee recalled the first time he learned his status: "The HIV test result was given to me in a crowded room," he said. "I felt shocked and wanted to have a seat for a while, but they did not allow me. I dare not go to that hospital anymore."

Integrating Palliative Care in Vietnam

To integrate palliative care training in the health care system and address concerns raised by interviews, FHI and Emergency Plan partners will help sensitize local health leaders, pharmacists and health care providers to the new guidelines; develop a national in-service certification program for physicians and nurses in palliative care; improve access to opioids such as morphine that are used to treat pain; and create integrated palliative care sites in areas with high prevalence of HIV and cancer.

Nearly 450 programs or service outlets worldwide are now providing palliative care services with support from FHI. This represents a seven-fold expansion since March 2005. Kim Green says, "Our greatest hope for palliative care in Vietnam is that it be available to all those who need it. People with HIV, cancer and other life-limiting illnesses should be treated for pain and able to achieve a higher quality of life. Oral morphine should also be widely available and prescribed to those in severe pain." She hopes, too, that Vietnam can serve as a model to other countries interested in developing palliative care guidelines, training and programs.

PHOTO (top): Hang is a widow who cares for her daughter (also pictured on home page) with support from her family. HIV-positive, Hang was very sick before receiving palliative care services from the Van Don outpatient clinic and Quan Lach Island home-based care team in Quanh Ninh province. When her health improved, Hang joined the Van Don home-based care team to share her good fortune with others. (FHI/Vietnam)

PHOTO (bottom): Staff at the HIV outpatient clinic in Cam Pha district hospital, Quanh Ninh province, where palliative care and treatment services are becoming well integrated. (FHI/Vietnam)

— Clare Hayden and Kim Green