End Stage Illness: Grief
End Stage Illness: Grief
Illness events are milestones that remind us of our mortality. Most chronic illnesses bring losses of some kind, whether of abilities or dreams, and point to larger losses that we all face: the inevitable, permanent losses through death. For some, a focus on loss is a paralyzing, demoralizing process. Others claim that only by experiencing loss can they truly recognize all of life's pleasures. A wish commonly expressed at funerals is for the deceased person to be there to hear all that is said. It is also common for those who closely escape death to feel a new appreciation of their loved ones and the significant aspects of life. Thus, the pain of loss is frequently associated with the joy of appreciation and with a renewed commitment to life goals and values (1997). Dying is an uncertain and frightening process for terminally ill people and their families and close friends. The uncertainty surrounding dying and death makes us all fragile, but none so the terminally ill people themselves.
It is difficult to know how any one family behaves throughout the course of their loved one’s terminal illness and after that person’s death (2001). Death is now a private concern and there are many uncertainties associated with dying in contemporary society. The secular nature of contemporary Western society contributes to a lack of religious certainty, which may complicate existential distress. In modern times, people have also become doubtful about the all-encompassing power of science, which in turn creates anxiety about the ability of medicine to provide definitive answers to the problems of mortality and suffering (1994). There is a lack of moral certainty, leaving us bereft of definitive guidelines to questions relating to rights to life and death. Families who experience the dying and death of a loved one respond in ways which reflect these uncertainties. Their responses also complicate the process of decision-making regarding the place and time of death, the treatments accorded to the terminally ill person, and the kinds of communications which take place. As terminally ill people become weaker and less able to engage socially, they become more reliant upon the people in their close social network (2001).
Most of the discussions that occur in the palliative care context contain some reference to ‘family dynamics’. The usual practice is to try to include the family in the patient's care and to offer support in this practice. Palliative care practitioners seem to start with the general rule that all people prefer to die at home with the family caring for them. However, many families are unable to care for their dying relative at home and this may be for any number of reasons, ranging from the degree of nursing care needed for the terminally ill person to economic constraints which mean family members must continue to work. Some families simply cannot cope with the physical and emotional stress of caring for a dying relative. Others believe that their relative is best cared for in the hospice or the hospital. Not all families are happy, tight-knit units and the stress of caring for relatives with terminal illnesses can cause some families to ‘shatter’ or even become hostile (2001). Families often have mixed responses to the timing of their terminally ill relative’s death. Some family members open express a wish for it to be over, though others can be changeable (2001). It is often not the terminally ill person who makes the decisions what happens to them, but the family and the health professionals who care for them ( 2001). No person remains unchanged by the experience of severe illness and approaching death. some people stubbornly persist in trying to do things for themselves, while others willingly relinquish control. In the case of terminal illness, many people also become confused and suffer significant cognitive impairment. When terminally ill people become unable to make decisions for themselves, it falls upon their families and their professional carers to decide how the person will be treated.
Each terminally ill person engages with a unique set of factors that alter his or her own conceptions of self. One of the most immediate and urgent factors, often dominating the experience of illness and approaching death, is the set of symptoms associated with the illness. Palliative care professionals cite weakness and fatigue as the most disabling symptoms of terminal illness and unfortunately there is little that can be done to alleviate them. This manifestation of terminal illness is just one of the many symptoms which influence the dying person's conception of themselves. Nausea, vomiting, breathlessness, constipation, diarrhoea, oedema (swelling), smell from infections and wounds, confusion and pain are also associated variously with disease (especially cancer) and with intervention procedures. The body, in these instances, is truly out of control and it threatens the sufferer's sense of self. People who talk about their symptoms also mention their ‘loss of dignity’, a factor which is closely linked to their inability to monitor and control their bodily functions. Their tumors, for example, may erupt on the surface of the body. Their skin tone and color changes, they become wasted and the insides of their bodies, particularly their bones, become more visible from the outside. These bodily disfigurements are all the more dangerous and powerful because they are symbols of finitude (2001)
Anticipated Deaths
Deaths that are anticipated usually occur as a consequence of illness or aging, or occasionally as a late sequel to injury. The experience of those bereaved following such deaths is essentially different from that following sudden and unanticipated deaths in that there has been some opportunity to prepare, to come to terms with the closeness of death and the probability of loss. Yet these deaths take many different forms. Many anticipated deaths of the elderly do not come so sweetly, but rather as a culmination of ill health and marked body failure. Even though the death of an older person is anticipated, the bereaved still perceives that he was by heart disease or pneumonia, for example. This will have effects not only on the dying person, but also on those who will grieve his death. They may suffer empathically; they may shoulder with acceptance or resentment the burdens of his illness; they may find their relationships altered with this person who is now so psychologically different in response to the disease process; and they may grieve and mourn his death even if it does not come (1996).
Dying and the Family
Aged persons today may be a member of a multigenerational family. Though they do not necessarily live under the same roof or may be geographically separated, there is some degree of filial tie. When an elderly becomes seriously or terminally ill and cannot uphold his or her role or obligation, the family balance or dynamics can be significantly altered. Even the aged person who is single and relies on friends and neighbors finds a change in the relationships. Depending on the role the individual has in the family constellation, problems often begin at the time of diagnosis or shortly thereafter. Roles and traits of the person who is now considered to be dying may create adjustment difficulties in the to-be survivors whether they are the spouse, the adult children, or the grandchildren. Adult children often begin to see their own mortality through the death of their parent, with the appearance of a new family order. It can be a constant struggle for a family to remain involved with the dying person as they try to withdraw and try to readjust their lives without the dying member. This requires enormous energy by family members who are already burdened with their anticipatory grief, daily living, and in many cases raising their own children. The conflict is not only grieving for the dying but for a part of themselves that will be lost with the death of the parent or significant family member. A number of adaptive tasks are required to facilitate healthy resolution of the dying of a family member (1998).
1. Family members need to remain involved with the patient. This means sharing and responding to the patient’s experiences. At times family members have to separate their own identities from that of the patient's and learn to tolerate the reality that this family member will die while they live on. The ability of the family members to truly support, love, and provide intimacy may lead to exhaustion, impatience, anger, and a sense of futility as the patient's illness drags on and on. Often family members may be at different points in grief than the patient. This can hinder communication between the patient and family members. As the illness worsens, physical disability increases, and the patient complains more often, intensifying feelings of helplessness and frustration in family members (1998).
2. Role changes require adaptation and accommodation to new demands within the family of new responsibilities and permanent change. Fro example, an adult child has to deal with the death of one parent and assumes responsibility for the welfare of the remaining parent ( 1998).
3. Bearing the effects of grief requires acknowledgment of the current feelings that surface in anticipatory grief. Coming to terms with the reality of the impending loss means that family members must go through many emotional responses in achieving acceptance of the loved one’s approaching death. Because people are supposed to die in old age, the grief responses may not be exceptionally intense, but then, too, many filial relationships that seem superficial can result in very deep and acute grief responses (1998).
4. Family members may feel extremely pressured during the final days of an aged relative’s life. They may be caught between experiencing and remembering the patient as he or she is and was, between pushing for more or letting nature take its course, and at times not wanting to be involved because of a discordant relationship with the patient. These discussions will profoundly affect them for the rest of their lives. Many times families feel guilt-ridden because they are thinking more about their needs instead of those of the dying patient (1998 ).
Despite the family’s grief and pain, the family must give the patient permission to die, let the patient know that it is all right to let go and leave. It is the last act of love and dignity the family can offer the dying patient (1998).
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