20 Guidelines for Pastoral Care to Persons Living with HIV/AIDS
Let the individual set the agenda
Many of us like to be in control of everything, including the direction of our conversations. This approach can sabotage our best efforts. The earlier you are in your relationship with the person you are counseling, the more s/he needs to control the issues that are discussed. If you begin a relationship by making demands of the HIV/AIDS-positive person such as his/her immediate repentance, notification of family/partner(s), and acceptance of death, you are being, at best, unfair and unhelpful. At worst, you are being destructive.
Confidentiality is a must
We must keep the trust people place in us. Disclosing one’s HIV/AIDS status is often a difficult decision. It means becoming vulnerable and trusting another with a secret. Pastoral visitors are not free to tell others the secrets entrusted to us. We do not tell spouses, church committees, pastors, or friends. If we break confidentiality, we may hurt the one who trusted us so much that s/he never reaches out for help again. We may also be violating the law.
Do not ask how someone contracted the virus
We do not ask someone who has cancer, lupus, or suffered a heart attack how she or he got sick, so why should we ask that of someone with HIV/AIDS? When people tell us their HIV/AIDS status, they are usually dealing with the present and future more than the past. There may be lifestyle issues that need to be discussed at a future time, but our initial reaction needs to be compassion – not questioning.
Avoid the “Blame Game”
Spending time blaming people who are HIV/AIDS positive for their illness distracts from the most important issues. The truth is that we have all done things in our lives that involved risk. For the most part, we have been spared many of the worst potential consequences of those acts. We are hypocritical when we blame others if they suffer the severe consequences of their acts. The “blame game” hinders us from effectively providing pastoral care to those who need it.
Compassion is the key
Compassion is being a channel of God’s grace and coming to the side of one who is hurting. We suspend judgment and focus on the needs of others. Compassion is shown in gentleness, kindness, acceptance, and love. Pastoral care that lacks compassion is not helpful. Compassion is the way of Jesus.
Confront your own fears
Fear leads some people, pastors and churches to reject people infected/affected by HIV/AIDS. They may refuse to visit or care for them. We must confront our fears with facts, put judgment and prejudice behind us, and get on with the privilege of ministry. It is important to get accurate medical information.
Focus on life, not death
A person infected with HIV/AIDS will eventually die. So will a person who is not infected by HIV/AIDS. None of us knows when death will arrive. Therefore, our focus needs to be on how we will live the rest of our lives. Focusing only on death gives the impression that we have given up hope and are just waiting for the person to die. Focusing on life declares that the person has a lot of living yet to do.
Every moment lived with meaning and faithfulness is a moment lived in hope. New medications are extending the lives of persons infected with HIV/AIDS. A cure may be found. Prayer and medication can help move us into hope. Spirituality calls us to hope and to live each day of our lives fully.
Affirm the worth of the person
All people are created in the image of God. All people inherently have great dignity and eternal worth. God’s grace has gone out to all people. God calls all people to a life filled with power, love, joy, and service to others. “God so loved the world,” (John 3: 16) means that there are no second-class people. We must embody the message of love in the Gospel.
Feel free to show emotion
A diagnosis of HIV/AIDS can stimulate concerns about death, prolonged illness, lack of control of our lives, financial stability, transmission of the disease, prejudice, and more. Providing good pastoral pare requires that we confront these issues and become aware of our own emotions about them. We must be careful, however, to respond to the needs of the person and not our own anxiety, fear, and pity. Our role is to be a pastor to them, not the reverse. Be emotionally present. Feel free to appropriately cry, laugh, or express other emotions when visiting.
Remember to touch
One of the tragedies of HIV/AIDS infection is that many people are reluctant to touch someone who is HIV/AIDS -positive. Some of this hesitation is due to irrational fears about contracting HIV/AIDS through casual contact. Others hesitate because they do not accept the HIV/AIDS-positive person or the lifestyle he or she is believed to have. Whatever the reason, refusing to touch someone who wants to be touched sends the message that we are not emotionally present for the person or that we do not accept the person. We must also be sensitive to times when a person does not want to be touched for any reason or cannot be touched because of a physical condition. Our willingness to touch shows our willingness to care.
Look for the stages of grief
People who are infected/affected by HIV/AIDS wrestle with grief. They may deal with shock, denial, anger, bargaining, depression, and acceptance. People go through these stages in differing periods of time and may bounce back and forth between stages. People will grieve over their HIV/AIDS status, an HIV/AIDS diagnosis, the loss of a job, becoming symptomatic, the loss of their future, the death of their friends, and the anticipation of their own death. Our job is not necessarily to move people through these stages but to be present to them in the stage they are presently in.
Be aware of psychosocial issues
Those infected with, or affected by, HIV/AIDS deal with a variety of issues such as social isolation, rejection by friends and family, prolonged periods of illness, fear of what tomorrow will bring, the sometimes negative reactions of the religious community, reproductive decisions, guilt, and grieving. As givers of pastoral care, we need to recognize these issues and help people as they work their way through them. We also need to educate our community about HIV/AIDS so that it may respond supportively.
Expressions of spirituality vary from person to person
People experience God in various ways. Some people express their faith emotionally; others are quiet and contemplative. Some people enjoy singing; others prefer to listen. Some belong to a particular religious group; others do not. Some are very sure about their spiritual direction; others are searching and have a lot of questions. Such differences are not bad. They demonstrate unique ways God reaches out to each of us.
Since religious expressions differ, we must not require everyone to experience God the way that we do. We cannot assume that we know another person’s spirituality just because we know that person is infected/affected by HIV/AIDS. We must be present as pastoral guides who help people to find their own way on their spiritual journey.
Avoid saying, “I know how you feel”
Even if we have had similar situations, we cannot completely understand how anyone else is experiencing a particular situation. More helpful responses might be: “You are in pain,” “I am sorry,” “I would like to be supportive of you,” “It sounds like this is a difficult time for you,” “What can I do to help?” and “How do you feel?” Sometimes a quiet hug is appropriate and needed.
To give helpful, consistent pastoral care, educate yourself about HIV/AIDS infection. Learn the basic facts about modes of transmission, progression of the infection, common illnesses and medications, and the psychosocial issues that surround HIV/AIDS.
By becoming educated about HIV/AIDS, you communicate to people with the virus that you care about them. You can find out about HIV/AIDS in many ways: books, the internet, seminars, volunteer opportunities, HIV/AIDS hotlines, American Red Cross programs, denominational resources, hospitals, and more. However you choose to become educated, do it today.
Pastoral care is usually a long process
We cannot heal every wound and solve every problem in one visit. Pastoral care with someone whose life has been touched by HIV/AIDS requires time, patience, and the development of a relationship. Our role is to come alongside of people and support them, to be present with them. It is not to answer every question and give a solution to every problem. We must be patient as people work through grief and the myriad other life issues.
Know your limits
HIV/AIDS brings us into contact with issues such as counseling, bio-ethics, living wills, medical treatment, grief, guilt, stress reduction, and nutrition. None of us can adequately deal with all these issues. We must realize when we have reached our limits and be humble enough to refer to an appropriate professional person.
Every situation can be used by God for growth as God’s people
God meets us in the people we encounter. People living with HIV/AIDS, through the issues they raise, help us confront fear, death, frustration, impatience, prejudice, and spirituality. Accompanying them through these issues can be mutually beneficial. We must be open to growth.
Doctrine and dogma do not substitute for sharing and love
We all-operate within the structure of a religious organization. That does not mean, however, that all we have to offer is that structure. We must add to that framework caring, personal sharing, and love. Unless we become personally involved, we will fail to show God’s love to others and fail to follow the example of Jesus.
– Los Angeles Archdiocese HIV/AIDS Ministry