Patients help determine palliative care program

Patients help define quality of life

Ethics committees wanting to provide effective palliative care for terminally ill AIDS patients in the last stages of life should look no further than the patient for answers, experts suggest.

The consensus of AIDS providers attending the XIII International AIDS Conference in Durban, South Africa, is that the dying patient can help define the concept of quality of life, and caregivers must respect the dying person’s preferences to promote dignity and self-worth.

"Caregivers need to take direction from the dying person when considering issues related to quality of life," explains Theo Weber, board member of the Dutch HIV Association and a member of the Global Network of People Living with HIV/AIDS in Europe. Weber, who spoke at the conference, is a professional nurse working in a community care organization in Amsterdam.

Palliative care should be based on the belief that every patient has the right to participate in informed discussions about health care resources available and the best possible option, he says. "Decisions are made by the patient and family in collaboration with caregivers, respecting the level of participation desired by both the patient and family," he explains.

Weber defines palliative care as an attitude, not a clinical care program. Palliative care is the active, compassionate care of a person whose disease is no longer responsive to traditional treatment aimed at curing the patient, he says. "The goal of palliative care is to promote quality of life through the control of symptoms whether they be physical, psychological, social, or spiritual."

Caregivers often surprised

He says that caregivers often are surprised by how much help they can offer dying patients. There are many concrete things that can be done to help relieve a person’s physical pain and suffering, he says. "Whether they be drugs or hands-on caregiving techniques such as back-rubs, these tools can be very effective in promoting and maintaining a person’s level of comfort."

In addition to physical aspects, psychological and social concerns are important when planning palliative care. It is important to accept that palliative care is intimately connected with loss, dying, and death, says Weber.

Palliative care can be provided by almost anyone, he notes, as long as the caregiver believes in the dignity of others. The skills needed to care for the dying can be learned. Coordinated and continuous care should be maintained, he says.

Palliative care is not only about providing for the dying person, however. It should continue by offering support and care for the bereaved who are left behind. Weber says, "It is important to consider this when planning your caregiving to ensure that those who are bereaved have the support they need through the period of transition following the loss of someone they love."

Don’t ignore spiritual considerations

Spiritual considerations also are vital in providing palliative care to dying persons, says Weber. "Many people who are dying will come to a deeper religious faith, while others will come to see life in a new way. Spiritual care involves supporting and being a companion to the dying person through these personal moments."

The spiritual aspect of palliative care is the most crucial, according to Jim Thorne Jr., a South African bereavement counselor, practicing death educator, and ordained priest. Thorne is founder of the National Association of Loss and Grief and author of the book A Guide on How to Cope with Dying, Death and Bereavement.

He says palliative care should include the following:

• appropriate deathbed counseling;

• support to immediate love ones;

• bereavement counseling for 13 months after the date of death;

• training courses on dying, death, transition, and bereavement to persons working in the AIDS field;

• education for those who are terminally ill with AIDS.

Such care would better equip families to understand the dying process and enable those working with AIDS patients to function better under the emotional strain of continuously being exposed to death, dying, and bereavement.

"We need to be assisting survivors to actual-ize their loss," Thorne explains. "We all need to accept the reality and finality of the loss we have experienced."

Thorne emphasizes that it’s the families who need to be taught how to cope with death, dying, and bereavement so the dying and the bereaved are not deprived of support. "When the person has died there are millions still to look after. You can’t die with that person," he says.

The "care for the caregiver" aspect of palliative care is particularly important, he says, when one takes into account that in South Africa, 4 million people are infected with HIV. As many as 500 people die each day of AIDS-related deaths, and 1,750 new HIV diagnoses are made every day.

Teaching basic skills

Linda Knox of the Hillcrest AIDS Centre says palliative care in the poverty-stricken communities in the Hillcrest area, outside Durban, is about "making sure that a person is OK to die."

Caregivers are mostly volunteers from rural communities who are being taught basic home-based care skills, including turning patients, changing the bed linen or newspaper on which the patient is lying, and treating bedsores, as well as providing information about basic prevention and transmission.

Describing several people the Centre had assisted, Knox says that at times the only thing caregivers could do was to hold a person’s hand while he or she was dying.

Discussing the situation in the Netherlands, Weber says that the Dutch Minister of Health concluded that palliative care is not as good as it should be. Research should be conducted to ensure that organizations providing care coordinate their efforts so it becomes more accessible, he suggests.

Even in situations as varied as those in the Netherlands or South Africa, palliative care is a necessity, not an option, says community activist Janet Frohlich. Frohlich helps carry out clinical trials with South Africa’s Medical Research Council. She conducts her work primarily in Hlabisa, north of Durban, where there are seven to 10 deaths each week.