Fragile Pieces

Perhaps the most important factor in relation to terminal illness is for you and your loved one to maintain a belief and dignity in life until death comes, despite possible increasing pain, and decreasing autonomy. For some people for whose illness there is no cure, the needs of security and support are not necessarily provided by a conventional hospital. Hospital staff don’t have the luxury of time to devote to dying patients or their loved ones. The primary aim of a hospital is medical and physical intervention, without necessarily taking into account the emotional needs of the patient or those closest to them.

An alternative is hospice care. The approach of a hospice is to alleviate suffering through medical intervention, and to maintain the dignity of the person who is dying while giving support to their family. A collaborative programme of care is developed, and the family is consulted and included in providing support for their loved one. The intention is to allow the patient to die with dignity, and in an atmosphere of humanity.

However, regardless of whether your loved one is in a hospital, a hospice, or at home, they will probably exhibit the fears and needs common to those in their position. It’s possible to identify these, and, with the assistance of professional carers, offer them some help in coping with a whole range of issues. Apart from the illness itself, these can include the sometimes painful diagnostic procedures, treatments such as radiation or chemotherapy, and turbulent emotional states including a sense of worthlessness, aloneness and a need to tidy up the loose ends of life.

• Fear of being alone One of the greatest fears of people who have been told, or believe, that they are dying is that they may die alone. Sometimes they feel that any physical deterioration may turn people away; they fear that they might become too repulsive, or ugly, or too much of a burden. In a sense this is true. Often, when death is inevitable or draws near, friends and relatives outside the immediate family tend to disengage themselves, and draw away from the dying person on the assumption that they would want to be alone in order to prepare themselves for death. There may be additional factors that influence whether or not people visit the dying person. For example, the continuing stigma of a disease such as AIDS might keep potential visitors away from a dying AIDS patient. But a person who is dying needs the love and support of their closest and dearest. It’s a very human need. They need you to be there to appreciate them, to reminisce, to cry and to laugh.
• Feelings of worthlessness Up until the time they started to become ill, people who are dying had a more positive selfimage, and a greater sense of worth as members of their family and society. However, their illness may have led to a gradual physical deterioration to the point that they are unable to go to work or even live at home. Whereas previously they may have had important jobs, or contributed to the household as a decisionmaker or bread-winner, these roles are gone. With these, all too easily, goes their positive self-image. It won’t help their feelings of uselessness to say: ‘Don’t waste your time thinking about these little things. You just concentrate on conserving your energy. Don’t waste it.’ You can help restore their spirits and feelings of selfworth by finding ways to fully involve them in making many of the important everyday decisions that involve family members and finances. You could draw up a list of decisions that need to be made, or an account of expenses that need to be sorted out, and find a regular time to discuss them. Naturally, they should be fully consulted in all the medical decisions made on their behalf.
• A need to ‘tidy up’ For those adults who recognize that they are dying, there is usually a need to put their affairs in order. This can take the form of writing a will, planning the funeral or making sure that the family is financially secure or employed. It can also involve a desire to release old resentments, and to resolve any outstanding personal or family feuds that may exist. These issues can be painful, not only because of what might be said, but also because this might seem as though they are somehow ‘giving in’ to death or abandoning hope. This probably isn’t the case; when people feel they are near death they can feel an extreme need to tie up the loose ends of their life. Their attitude may be rather businesslike, but that’s only because they know that there’s so little time left. You’ll help in being similarly pragmatic in order to bring them towards a sense of closure and inner peace.