Pioneering Comprehensive Palliative Care in Nepal

OCTOBER 2008 — FHI is supporting an ambitious and pioneering community- and home-based palliative care (CBHC) program in Nepal. Begun as pilot programs at several sites in 2005, palliative care was incorporated into FHI-supported integrated health services sites in 2006. From then services rapidly expanded. In June 2008, over 1,600 HIV-positive clients in Nepal were receiving palliative care services through 12 implementing agencies.

The team and the care

The CHBC team is the core of the program. Each team is made up of two to four HIV-positive healthcare workers who have completed a seven-day basic training. Later, when team members have had some practical experience, they take refresher courses.

The team's outreach and support services include symptom care and pain management, support for adherence to antiretroviral treatment, and referrals for other care such as screening for tuberculosis, counseling and testing, and services to prevent transmission of HIV from mother to child. The teams work closely with and receive technical support from integrated health services clinics, which offer screening and treatment for sexually transmitted infections, counseling and HIV testing, and clinical care and other support. The teams complement the clinics' work and visit clients in their homes to provide individualized care.

Because HIV and AIDS affect all aspects of a person's life, social, psychological, and economic assistance are also important components of CHBC care. Assistance may include facilitating schooling for children, providing psychological and spiritual counseling, and assisting support groups to network, build skills, and increase job opportunities. The program also plans activities to reduce stigma and discrimination in communities and raise awareness. Importantly, CHBC teams reinforce the concept of "positive living."

Successes and challenges

One palliative care client recently remarked, "The home care service is a lifeline. Without it, I would not be alive." CHBC teams have this powerful positive impact because they take the time to talk to clients and their families and to understand their individual needs. The teams can thus deliver excellent palliative care, because they address symptoms and concerns that overstretched hospital-based workers often overlook.

Serious challenges remain, however:

• Hunger and food shortages complicate home care. Team members provide nutrition education, but they must seek partnerships with community organizations for food distribution.
• Some teams have reached their maximum caseload and cannot meet the demand for additional clients or services. Many regions still do not have any support, and clients in remote areas often are unable to access clinical services due to the cost and difficulty of travel.
• Only 2 percent of HIV-positive, pregnant women in Nepal receive services to prevent mother-to-child transmission before delivery, and 80 percent of rural women have unattended deliveries at home. CHBC teams refer pregnant clients to sites offering PMTCT services, but the reality is that few go.
• Visiting homes in remote areas may require team members to walk several hours over rough terrain and an overnight stay. They may be too weak to travel due to their own HIV infection, or they may feel overwhelmed by the magnitude of the problems HIV-positive people endure.
• Some clients move away and lose contact with their support and referral network, thus jeopardizing the continuity of their medication.
• Finally, homelessness is an issue for HIV-positive people who have been rejected by their families. And there are many child-headed households and orphans surviving on their own in communities that are too poor to absorb them.

Moving forward

The next step for Nepal is to institutionalize CHBC within the national public health system and make CHBC teams available and sustainable nationwide. Also, providing care for clients with life-limiting diseases is physically and emotionally draining, especially for those who are themselves dealing with an HIV diagnosis. Thus, care for the caregivers, including counseling and frequent debriefing, should be made another component of CHBC programs.

FHI/Nepal's five years of supporting community- and home-based palliative care provision in Nepal have demonstrated that collaboration is absolutely essential to the provision of comprehensive care. People living with HIV face many physical, psychosocial, and economic obstacles. While CHBC teams have helped alleviate the situations for many, an even wider safety net is required to ensure the health and wellbeing of all.

PHOTOS: (Top) One-on-one community home-based care visit in Nepal. (Bottom) Home visit in far west Nepal. (FHI/Nepal)