Palliative Care in Resource-Constrained Settings: Lessons Learned
Palliative Care in the Philippines
The Remedios AIDS Foundation is a nonprofit, nongovernment organization that was organized and set up through a collaborative effort of the Philippines Health Department; AIDSCOM; the Academy for Educational Development; and several private, committed individuals as a response to the AIDS epidemic. It started with the first AIDS hotline (i.e., phone counseling and education) in the Philippines and included a drop-in center, where people could come by for face-to-face counseling or simply read materials about HIV and AIDS.
Data gathered through the hotline provided direction as to how to further the foundation’s programs and services. The data were subject to further validation by consulting with the community and our project partners. Today we provide information dissemination, training, and direct services that include clinic, laboratory and palliative/hospice care.
Palliative care is the union of biomedicine, spirituality and, most important, compassion. It helps clients’ symptoms without curing and uses other approaches to attain good quality of life within the Philippine context.
Framework
The main goal of the Philippines Health Department’s program on AIDS is to provide for an optimum continuum of care and to ensure that all stakeholders are involved. Prevention and care is home based; it maximizes use of the family as the primary giver of care and complements the biomedical component, which is addressed by hospital-based care. Families receive support from community- and hospital-based caregivers. The approach builds on Philippine culture, in which the family is the basic unit of the society. The family is expected to be the first to act on every concern and meet the needs of every family member. We put our clients at the center of the program, which is consultative in nature.
We use a team approach. Every community agency that partners with us applies unique expertise to the specific needs of the client. In this way, we avoid duplication of efforts within the community. We have developed a strong referral network that may help the process of caregiving.
Referral Network
AIDS is not the responsibility of a single person, but of everyone. The referral network maximizes existing resources within the community, from human resources to financial, technical, legal, and biomedical resources. It includes the participation of the local government.
Services
We have a two-pronged strategy: (1) to care for the ill client and (2) to care for the caregivers and family. Care for caregivers tries to address the stress and burnout caregivers experience by providing respite care.
We have embarked on an alternative approach to palliative care for people living with AIDS. We treat the problem in a holistic way, by looking at the person, not the illness or the infection. We look at the totality of the person’s life as well as the lives of family members. The holistic team approach looks at the psychosocial, spiritual, physical, economic, and health needs of our clients, as follows.
+ Psychosocial needs are met through continual counseling, health education and promotion, and risk reduction activities. Events at which clients can meet each other—the peer approach—are empowering, because they present an environment in which the clients can relate to one another and achieve a sense of belonging. Social activities are regularly led by an HIV-positive person. Stress management is vital: Clients and their families come together to plan for events that can ease stress and address concerns of their for physical exercises such as Tae Bo, aerobics, Tai Chi, and Qui Gong to build strength and improve body image. For clients who are too weak, the exercises focus on deep breathing, eventually leading to meditation. The core of the stress management approach is “reclaiming the I,” which involves building self-esteem and a sense of responsibility for one’s own actions.
- Spiritual needs are met through regular meditation, relaxation, and yoga led by peers and volunteers. Because clients have different religious backgrounds, we do not incorporate religion. What is important here is that the client strengthens faith regardless of the religion. The only time that we address religious concerns is upon request of the client. For example, clients may request a Catholic priest to hear confession or give communion.
- Physical needs are met in several ways. Most clients pay close attention to their appearance. In the Philippines, people who deviate from the usual physical appearance may be stereotyped as having a serious health condition, regardless of HIV status. We help clients address these concerns. In addition, we work with clients and their caregivers regarding meal planning. A resource person handles nutrition education for people living with HIV/AIDS and provides quarterly lessons on healthy, cost-effective meal preparation.
- Economic needs are met in part by addressing the economic concerns of the clients. In the Philippines, most people who are HIV-positive are the breadwinners of the family. Once they test positive for HIV, it is likely that they will lose their jobs or isolate themselves out of fear of discrimination. To augment the income and resources of the family, we engage the families themselves in addressing economic concerns. They attend training on specific finance or business issues, and they receive access to loans for starting businesses. This approach gives clients a sense of security and peace of mind: If they die, they know that their families will have a way to address financial concerns. Businesses include candle making, chocolate making, hog raising, handicrafts, and fish ponds.
- Health needs begin to be met when an ill client is counseled and processed by an intake counselor. The processing may begin with the onset of opportunistic infection. The counselor explains why opportunistic infections occur and what can be done about them; he or she encourages the client to regularly seek medical consultation. If the client is already on medication, we continuously educate and counsel him or her to achieve adherence and drug compliance. This scenario is unusual in the Philippines, however. Only a few people living with HIV/AIDS are on antiretroviral drugs (ARVs). More than 75 percent of people who are HIV-positive cannot afford ARVs. Availability of antibiotics for opportunistic infections is also scarce.
Because ARVs are so difficult to obtain, many patients turn to alternative and complementary therapies. Our program offers the following options:
- Alternative and complementary therapy can involve the use of acupressure, acupuncture, herbal massage, herbal sauna, and art therapy. These activities do not cure or treat the symptoms or the infections, but they aid in alleviating the pain. Turning clients’ attention to proactive activities reduces their focus on how they feel and helps them look forward to a peaceful and productive day.
- Dying process is a special session available to clients who are considered to be terminal. Those who are in the terminal stage often have a clear state of mind. Talking about death and the dying process is well accepted in the Philippines, and clients are open to the idea of talking about death because it helps them process the situation and make decisions and plans that will reduce the burden on the family. The family members are part of the processing; their participation helps them accept what may eventually happen to their ill relative. In our program, these families are able to seek support from other people, particularly families who are in similar situations. The support may be more psychosocial than financial. Many of our clients who have gone through this session claim that it is easier for them to accept the fact of death and move on. Eventually, these family members become volunteer caregivers and form part of a support system for others who are going through what the volunteers have gone through.
- Training involves theoretical training and hands-on practice in home- and community-based care. Although we have admitted clients who are very ill to training courses, it is also required that a family member learn the fundamentals of home- and community-based palliative care. This program has trained many caregivers and family members in anticipation of the future state of health of every person diagnosed with HIV disease. We cannot just leave every ill person in the hospital or in hospice care, especially those who no longer respond to medication. Hospice care is too expensive. In our palliative care model, the major caregivers are the family members, and care takes place at home. They are supported by community volunteers who have been trained in bedside care and practical help. Monitoring takes place through regular outreach.
Challenges
At first, we studied the potential applicability and acceptability of a hospice care setting. We found out that it is feasible only with sufficient financial resources; otherwise, there will be a problem with sustainability. Applicability depends on the type of clients the hospice serves.
One challenge we faced was possible discrimination of people living with HIV/AIDS. To meet this challenge, we involved everyone in the community when setting up the hospice program. We prepared the community first, making use of massive education and awareness and slowly involving residents into the setting. Community people, along with HIV-positive people, were involved in every step and process of the undertaking until they had a sense of ownership of the initiative.
The program is also supportive of the principle of involving people infected with and affected by AIDS. Thus, every weekend, the community; HIV-positive people; and their families, caregivers, and providers meet to discuss concerns and issues, share experiences, and learn from one another and draw some plans.
The high turnover of volunteers is another obstacle. The maximum number of months a volunteer stays on is 3 to 6 months. Most of the time, they last only 1 or 2 months. To counteract this obstacle, stress management and rotation of the type of voluntary work was implemented. Counseling and development workshops and seminars are an integral part of the approach to addressing concerns of volunteer caregivers.
Not all HIV-positive individuals have made their HIV status known to their family. Disclosure of HIV status can be an obstacle in trying to involve families as caregivers. We try to encourage the HIV-positive person to acknowledge the fact that family care and support is vital. It is too heavy a burden to care for someone whose family members are not around to share the care and support of their sick relative. As response to this challenge, we do home visits to clients with their permission. We also invite them to visit the hospice, introducing the concept of caring for people with life-threatening illnesses. Sewing AIDS memorial quilt patches is one strategy used to open the topic of AIDS and can lead to telling relatives of the client’s HIV status. From there, acceptance develops, and eventually families take the lead in caregiving should the person fall ill.
Burnout and stress among caregivers is rampant. They usually are burdened with the cases they face every day. Peer counseling is very important in this aspect; in some cases we use a buddy system. Caregivers cannot help but be affected by the constant reminders that as caregivers, we cannot provide for everything and must deliver what we can with the best effort we can offer. Regular stress management sessions and social meetings among caregivers take place. Development seminars are being provided to upgrade caregivers’ skills and knowledge. These steps help caregivers continue their work.
Recommendations for Programs
- Stay client centered. When we want to start something or push through an initiative, the need should come from the target clients and should be expressed by those who need it.
- Validate needs. Once a need is expressed, we need to go back to the clients or community and try to validate it, using a rapid participatory appraisal approach.
- Be participatory and consultative. Create the design and the workplan together with the clients of the initiative. Even in developing policies, rules, and regulations, clients must be involved. Their involvement fosters ownership of the initiative, thus gaining support from them and the community.
- Compassion is important in any care delivery program. It always must be there because it helps alleviate the pain and suffering of clients. They can see that you are with them in what they feel and experience.
- Involve families and the sick person. Let asymptomatic HIV-positive people be part of the caring team. Doing so will help them achieve some importance while aiding them in understanding how they can manage pain when they go through the same situation in the future.
- Involving the community and the families breaks the barrier. Self-isolation is addressed because stigma and discrimination are diminished.
- Care for the caregivers should be part and parcel of the plan. Otherwise we lose trained caregivers and families back out of the system of care, and we start all over again.
Achieving all these elements will generate a supportive and an enabling environment, reduce dependence of people living with HIV and AIDS, and foster the greater involvement of HIV-affected and -infected people.
“Let us not talk about people living with AIDS, but let us talk to them about what we can do about AIDS.”
