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close this bookAids Home Care Handbook (WHO, 1993, 178 p.)
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close this folderChapter Four: Care of the dying
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View the documentThe last part of the story: Yulia's legacy
View the documentTeaching notes care dying

Teaching notes care dying

At some point in the disease process of AIDS, there is nothing more that can be done to treat the opportunistic infections, or the symptoms that they cause. The infections or illnesses have progressed beyond what medicines can cure. At this point, the goal of all care (medical, nursing, pastoral and psychological) is to keep the person as comfortable as possible and to maintain their dignity. In some places this is called palliative care.

¨ When does this begin?

It is often difficult to decide when the focus on medical treatment should stop and care for the dying should begin. The change in care may begin, for example:

· when medical treatment is not available or is no longer effective

· when the person says he or she is ready to die and really does appear to be very sick - this is clearly different from someone who is depressed for a time and who must be encouraged not to give up

· when the body's vital organs begin to fail.

¨ Where can you provide care for someone who is dying?

Care for the dying can be provided in a hospital or in the home. Most people prefer, or are forced by circumstances, to remain at home. However, some people may not want to actually die in the home. They may want to stay at home until the last moment but either because of their own or the family's wishes they may want to go to the hospital to die. If this is the case, a plan for transporting them will need to be thought out.

¨ What are the goals of caring for someone who is dying?

· keeping them comfortable and protecting them from problems that can make them feel worse

· helping them to be as independent as possible

· assisting them in grieving for, and coping with, the continuing losses they experience

· helping them and their families prepare for death - this may include making a will, tending to relationships in the family or the community, and arranging for the transfer of responsibilities

· keeping them within the community and family groups for as long as possible - family members can bring them into this part of their lives even when it seems they are too ill to enjoy or understand what is going on.

¨ What can you do to meet these goals? Give comfort

· If the person is in constant pain, make sure that the pain medication is available in regular doses. It should not be taken just when the pain is really bad.

· Use relaxation techniques such as encouraging deep breathing, or giving back rubs or body massages.

· Continue basic physical care to keep the person dean and dry and to prevent skin problems, and stiffness or locking of joints.

· Encourage communication within the family and community. People with AIDS and those they love need to feel that they are not outside the love and life of their community. Help them use this time as a chance to heal old wounds and to make peace with each other. This will help to increase the comfort and acceptance of the whole family.

· Provide physical contact by touching, holding hands and hugging.

· Provide or arrange for counselling if desired, for example from religious representatives. They can be very helpful for spiritual counselling.

Allow the sick person independence

· Accept the person's own decisions such as a refusal to eat or get up, or even a demand to get up when you think that resting would be better for them.

· Respect requests, for example regarding visitors.

· Ask them what they are feeling. Listen and allow the person to talk about how they feel.

· Accept the person's feelings of anger, fear, grief and other emotions.

Prepare for death

· Talk about death if the person wishes to. Many people feel that it is not good to talk about the fact that someone is going to die, as if mentioning death is a wish for death. But by discussing death openly, those around are helping the dying person to feel that their concerns are heard, that their wishes will be followed and that they are not alone. To avoid talking about death is a form of denial.

· One of the most common worries is for the future of the children in a family. People may fear that their children will be hungry or lack money for school fees after they have died. Begin planning with relatives, friends or orphan programmes for the future of the children. It will ease such worries if the person knows that suitable arrangements have already been made.

· The person may be worried about being in pain as they near death. The fear can be lessened by knowing what it will be like. If the person asks, describe what might happen, such as difficulty in breathing, or passing in and out of consciousness. If pain medications are available, reassure the person that they will be used in order to prevent unnecessary pain.

· The person may be worried about what will happen after they die. The anxiety can be lessened by helping them to write a will, by planning details such as funeral arrangements and discussing spiritual beliefs, perhaps with a representative of the person's religion.

¨ What precautions do you or the family need to take with the body of someone who has died of AIDS?

Immediately after death, you need to follow the same rules in dealing with the body as you did when helping the person through their illness. Hands should be protected when cleaning and laying out the body, particularly if there are body fluids such as diarrhoea or blood, and then washed with soap and water afterwards. Wounds on hands or arms should be covered with a plaster or bandage.

Shortly after the person has died the virus will also die. HIV can only live and reproduce inside a living person. Therefore you do not need to worry about special precautions during the funeral itself.

¨ How can you help the family after the death?

Immediately after a person has died, the family may need help to grieve or to arrange practical matters. You can offer this by listening to them. You can also assist them with the funeral arrangements in accordance with the customs and regulations of the area in which you live.

The death may continue to cause practical difficulties for the family. This is particularly true if planning for the death was not done properly. Also, the family and loved ones will continue to grieve for many months. Any care or practical help you can give during this time can be useful. Setting aside time to visit and asking how they are doing will help them to think of life beyond this painful time.