Those who are terminally ill are confronted with painful and difficult choices. according to Mary E. Williams, “they must make decisions about potentially life prolonging treatments, expensive medicines, experimental therapies, legal questions concerning life support and the right to die, and issues affecting their family and loved ones” (2001, 16). There is also the limitation of medical technology and the complicated issues of illnesses, beliefs, and family differences among others. The society is not prepared to deal with the issue of terminal illness, thus it is uncertain as to how aggressive the treatment should be, uncertain as to how best to approach the patient. How then should those at the verge of death be handled?
As will be seen later in this chapter, the hospice industry in the United States and maybe in other countries as well, actively seeks to provide competent care to the terminally ill. The desire to put these people into categories leads to depersonalization. The challenge to care for those with terminal illness is obvious in today’s culture. It is complex, especially when presented with the issue of talking about end of life. The cultural, historical, and theological viewpoint of the individual patient, when assisting them and their family in making or rejecting the choices they have made is paramount. Most families would want to go by the wish of the patient as expressed to them.
However, it also depends on the religious believe of the patient. This in itself become so complex if the patient and family argue on the basis of what they belief. Let us consider some religious beliefs that may lead to complexities of caring for the terminally ill. Terminal dehydration[1] has particular aversion for the Jewish population because of the the Jews view of life and food as of a life sustaining, healing, and comforting agent.The fine line between what is life sustaining verse what is death prolonging and the conflicting viewpoints with the various Jewish sects. Food is closely associated with the value of life for most Jews. The Jews believe it is a duty to live at all costs. The dilemma of withdrawing food and fluids becomes tied into the limited time frame of three days before the death to say that one is a dying person. Thus at this point many Jews have mistrust of the caregivers in the United States, for example. For Jews, perceiving hospice
as a “Christian” movement might bring the thoughts of fear, abandonment and desecration of the body. Fear is because of the past experiences with anti Semitism, abandonment is because the Jewish patient and family might not be aware that hospice death is with dignity (Bairds 2001, 209). Having said this then, notice that there exists a problem since care will not be as effective as the hospice may want.
As difficult as taking care of the terminally ill would be, it is also very difficult to understand the job. In the final hours of dying, the dying person makes demands, gestures and speeches that seem to make no sense. Family members, nurses, doctors, and other caregivers may not understand. As a result they respond with frustrations or with annoyance. They may try to humor the patient or to stop the confusion with medication. Gallanan assert that, “this is done to distance the dying person from those they trust in producing a sense of isolation and bewilderment.” (1992, 22). Keeping open minds and listening carefully to dying people is the only way to understand them. Therefore, when they are understood, they participate more fully in the event of dying. Families and friends can gain comfort, as well as understanding what the experience of dying is and what is needed to achieve a peaceful death. With the above viewpoint, then we would say the manner of dying benefit the dying person and the family. The dying need a healthy care philosophy and practice that attends to the physical, psychological, and spiritual needs of the dying. Caregivers should focus on alleviating the physical pain of terminal illness.
They also should help individuals face an impending death and achieve a psychological closure of life. The value of assistance for the dying, Williams the author of Terminal Illness: Opposing Views, points out, “has been largely ignored by the mainstream medical community”(1992, 22).
In this baby boomers age, more family members are providing care for aging parents and relatives. Theses family caregivers are the cornerstones of the long-term care system, providing millions of hours of unpaid services. This assistance runs the gamut from running the occasional errand, such as shopping or picking up medications, to providing significant amount of personal nursing care. Care giving can be gratifying and meaningful, but at the same time, the ongoing responsibilities take a toll on many caregivers’ physical, mental and economic health. Caregivers of these patients are more likely to have depression, a risk factor for many serious health conditions. Policy- makers have to recognize the effect that this trend will have on coming generations. A recent national survey by the National Family Caregivers Association (NFCA) found that more than one quarter (27%) of the adult population has provided informal[2] care for a chronically ill, disabled or aged family member or friend during the past year. That
represents more than 54 million caregivers based on current census data.
Terminal illness care, is an area that even professionals don’t understand too much. Braid compares terminal care as a game with which even doctors are unfamiliar. Rescuing a patient whose condition is unstable is a serious game that we are quite uncomfortable playing (2003, 48). Without a clear understanding of the object (which is to save the life of the patient) of the game or its rules, patients’ care at the end of life is subject to dangerous inconsistency. Coping with terminal illness is more than hard work. It is all consuming and creeps into every corner of people’s life. There are so many people to talk to, so many questions to ask, so much to do. Terminal illness does not only belong to the one who is sick; it affects family members, friends, neighbors, and coworkers too. Each person involved had his or her own set of issues, questions and fears.
As seen in chapter one, people react in many ways to news about the impending death of someone they love or that of their own. They may feel shocked, disbelief, hunger, or fear. Fear of death is so common in all societies. As will seen in this chapter, fear of dying is not one fear but a multiple of fears. Thus, the author has called other fears that follow concerns. There are concerns to do with physical illness and incapacity, concerns of being handicapped, concerns of being a burden on friends and family, and concerns of being unable to contribute to the well being of the family. There are concerns about physical pain, concerns about the ending of life itself, and concerns of dying while some of life’s potential is unfulfilled.
As Buckman observes, “the precise nature of fears and concerns will partly depend on the nature of the relationship of the person dying to the living and /or the nature of one's own (1988,62). Fear is dealing with the unknown. For the loved ones may be frightened of being left alone, of being helpless, of cracking up and failing to cope, of being a hindrance to the dying person when one should be a help, of trying to live without the loved one afterwards and failing, among other fears. Why is fear the dominant factor during dying moments? Murphy points out that, “this is because it has not been easy to say what we need in our family, and to say it without judgments”(1999, 106). When fear dominates, one should focus on what is precisely bringing about the fear. Assemble the list of things that bring fear most, and observe that fears are as a result of the undone things with the dying loved one. Therefore, there needs to be a time for family to come together and discuss feelings, and share what their feelings are. But to most people this is unthinkable. In most cases the idea would be rejected by most of the family. But when stories are told, the dying has the opportunity to die in peace and leave the family in more peace. Assisting the dying, giving time and space to ventilate what is in his or he mind, and staying close while this bring relief to the patient. How soon can this fear of dying be overcome? The answer depends on how fast the individual is able to cope with the realities of death. The fear of living incompetent life must be overcome. Death is a threat largely because it eliminates the opportunity to achieve goals important to our self-esteem, or because it deprives one of a chance to have longed-for experience. Death fear, like anxiety in general, is invariably related to a situation that has not arisen. It is, not an actual one (Shepherd 1975, 124).
Anger at some stage of an illness is very common. Why do people get angry when they are ill? It is actually common in any illness, whether serious or not, even with a simple and self-limiting illness. The single most important reason is loss of control. Most dying patients try hard to have control over most of the things that happen in their lives. At this time it is necessary to reflect on anger as described earlier, that dying people might feel angry. It is not uncommon to hear someone terminally ill ask, “Why is it happening to me?” Some people feel angry with God for allowing them to be sick, other feel angry at their doctors for not being able to find a cure, others still feel angry at the government for putting money into weapons instead of medical research. Rather it is much easier emotionally to find fault with an outside force than to accept death with
calmness (Angel 1987, 79).
If a family member dies unexpectedly, or too young, or as the result of an illness that might have been cured if detected earlier, it is normal for the surviving family members to feel angry. They may vent their anger towards the medical staff that cared for the loved one already dead. Sometimes these feelings have no basis and sometimes lawsuits follow. Other times they are never justified at all. Yet the loved ones are distraught, and use anger as emotional outlet. It is uncommon for loved ones to turn anger unto themselves. This manifests itself as guilt. (Angel 1987, 97). In authors experience as hospital chaplain, he has dealt with many individuals who are angry, over the death of their loved ones, or their own death. One afternoon the was responding to a unit emergency call, only to learn that a patient had died; thus he needed to help the family with emotional and spiritual needs. Family members were all on the hallway shouting, screaming, and running up and down the hallway. One of them said to me that their mum was doing well five minutes ago and she (one of the daughters to the patient) does not know what they have done with her, and they must “fix my mother." This daughter felt angry that the
mother had died and they have not done anything about it. Therefore, the anger was directed to the care - giving team. Kubler -Ross in her book, On Death and Dying indicates that, “when the first stage of denial cannot be maintained any longer, it is replaced by feelings of anger, rage, envy, and resentment” (1969, 88). This stage of anger is very difficult to cope with from the point of view of the family and staff. The reason for this is that this anger is displaced in all directions and projected onto the environment at times almost at random.
The uncertainty about death brings about many unanswered questions to the dying or the family. Immersed in all sorts of feelings, they wonder, whether to talk about it or not, or ever accept the reality of dying. Thus since the above has not been solved in the mind of the dying or the family, death becomes remote, no longer an integral part of life. The problem for most families dealing with death is that it is not easy to say what they need to say in the family setting, and say it without interruptions or judgments. Anything of a painful nature that might cause feelings to be hurt is not disclosed. In this kind of scenario, the family cocoon is not permeable; tears and feelings of all sorts are not allowed to mix with the family dynamics and catalyze healing, with the residue flowing out so that the family within is softened and nurtured (Murphy 1999, 106). The anxiety raised by the question of dying might also induce rage, with an angry demand as to why the dying person is trying to be upsetting. Those in this state move on further, past the tears and anxiety and anger, and probably would say that they would not want their death to be a burden to the family and that they need to get on their own lives as if death was not part of their own life.
Dealing with death and dying
Persons who help dying patients round out their lives expend tremendous energy. This needs replenishing. Patients and friends help in replenishment, but since they come and go, there is need to recognize the importance of ongoing relationship of the Hospice. Little wonder that in the process of dying, when there is often much tension and grief, patient and family feel quite unable to navigate alone and yet may not find the appropriate guidance from their physician or other caregivers. Thinking about death, dying, bereavement, establishes a ministry. Caregivers[3], which mean everyone who attends to the dying, need preparation to care for the dying. According to Murphy, “at the end of life, when all is said and done, the family members who are attending their dying relative as both guides and witness will often encourage their loved one to let go” (1999, 140). Holding on to one another for dear life in bonding dependency is a way of life in many families but this makes it painfully difficult to die. Families not only have to deal with the pain of knowing that a loved one is dying, but they do so in a state of uncertainty, not sure of what to do, how to do it or when. On the other hand death comes too soon sometimes with no time for process of the dying. This can be devastating to the surviving members or the family and all others in social family. Very few health people actually want to die, and very few seriously ill people actually hasten their deaths. We are all programmed to hold on to life for as long as possible. This means that if somebody tells us he or she has an illness that may kill, we find it very difficult to accept it as a fact. Everybody facing the threat of death has to make a painful transition from thinking of himself as a perfectly healthy person to thinking of himself as somebody who might die. One can think of this transition as going from “ It won’t happen to me, to, it really might happen to me.” (Buckman 1988, 29). How can we face the prospect of our own deaths and the deaths of others that we love? In her book Talking About Death Won’t Kill you, Virginia Morris writes,“Death belongs to the dying and those who love them” (2001). Usually it shouldn't. While we know that death happens, we don’t quite believe that it will happen to us, or to those we love, even when we think it will, not in the near future. Many people do not have any vision of what they would do if happen to them. Death has become unfamiliar territory where there is so much more we need to know about it.
In an article in the, Journal of Psychosomatic Research (2000) entitled “Facing death” Hinton cited one study at a tumor clinic where 560 patients were asked whether they would like to know of a fatal diagnosis: 80% desired this information, while 12 % didn’t. The remaining 8% would not give a response. Why do we find this kind of variation? Sharing news of impending death would create too much stress that the patient cannot handle. In fact, even doctors and other medical caregivers cannot handle the death of a patient. This is because many caregivers are not prepared to deal with death and dying. Elizabeth - Kubler Ross, who has worked with over nine hundred dying patients reports that, only 1% are prepared for death (1988, 34). On the same note Shepherd asserts that “people get born and they have to be prepared to die one day” (1975, 35).
During the period author has been hospital chaplain, he come across people who are prepared to die and very much at peace. He also had families and loved ones who found that caring for the dying person, though very difficult, was a rich and gratifying experience that changed their lives. In his book, “When Someone you love is dying” Shepherd observes that, “it is as unrealistic and damaging as denying that time is running out. We can receive comfort, then, in knowing that nearly everyone who has been given the news of incurable illness manages to put to some Creative use.” (1975, 48). This includes the survivors as well. Albom, in his book, “Tuesdays with Morrie” points out that “to know you are going to die and to be prepared for it anytime, that’s better. That way you can actually be more involved in your life while you are living”(1997, 81).
Another difficult aspect of dying is dealing with emotional toll. When the author first became a resident chaplain in one of the leading hospitals in Houston, Texas, he could not understand why every evening after work I got home feeling too tired and worn out. When a patient is dying, all caregivers take the toll of not able to “help” not die. For the patients too, psychological pain is difficult to measure or study. Pain at death is prolonged with a lot of loneliness and frightening. Most disturbing of all is that patients who are dying are typically distanced, both physically and emotionally, from loved ones, who can’t hurdle the physical intrusion of the hospital and who often don’t have any idea of how to help or what to do. They feel powerless and frightened in the face of death. Williams contends, “terminally ill patients should plan for the end of life. Asserting that planning near the end of life is helpful. By thinking ahead about what could happen, and
How one will deal with problems if they do, one can create a better life and a better quality of life for oneself and the people who love and care about you” (2001, 67).
Dying brings with it dramatic physical changes that the dying person, the family and caregivers must anticipate. Some patients will lose the ability to walk, and care for themselves. Most times dying patients will use diapers and bedpans. Family, friends, and caregivers must be prepared to deal with unpleasant sights and odors, especially if a loved one is dying at home. There are physical changes that occur when danger arises, “Fight and Flight.”[4] This happens when there is death and with the subsequent sadness and grief that is experienced with all the changes that occur. There are the physical sensations of grief and they are just as real as the deep heartache of emotional grief. When death is near occurred, many dying patients and grieving family members are struggling with resisting the natural reaction to change. There are so many losses that a dying person deals with, some of which we will not be able to deal with in these hort pages.
Human beings are relational beings attaching themselves to people and things that are, at the same time finite. This combination of attachment and finitude[5] is the occasion for grief. The fundamental human dilemma is that human beings are limited creatures who know that they will die. And the fundamental human longing is that we might keep the unity we had before birth forever. Herbert Anderson in an article entitled, “Moments of Loss, Seasons of Grief” points out that, “When our job, primary relationship, or vacation is pleasurable, we like to think it will never end. Therefore it is not surprising that we struggle with being finite creatures”(Circuit Rider 2005, 21). Even when we believe that death is part of God’s plan, we will rage at death when it is experienced as a thief that robs us of people we love. Every human being is attached to things or relationships which form strong bonds of affection. Some people however will seekLimited attachments because it is too painful to lose what we love. Some kinds of Christian
spirituality support the conviction that we should limit our attachment because this world is not ours, we are but sojourners.
Understanding the pervasiveness of loss gives us the opportunities for learning how to grieve and prepare for death from the beginning of life. Kubler - Ross in her book Death- The Final Stages of Growth, points out that, “Death is a meaningful, growth indicating aspect of life, the experience of death can help enrich and give meaning to existence on earth (1975, 145). During death human beings lose material, role, physical functions, dreams, as well as loved ones. When individuals lose someone or something they love, the grief feelings may be all they have left. Harboring the necessary selfishness of grief will make it possible for people to hold on to their grief, the closest connection they have to the lost person, until it is time to let go of the grief and hold on to a memory.
The death of a member of family is often a major turning point in dealing with issues in the family. The death of a spouse for example can produce some of the most profound and intense experiences of human emotion and thought. Such a loss elicits a wide range of internal responses, which according to Schuchter are at times overwhelming and at times perplexing (1998, 16). Sometimes tremendous growth occurs – renewing of ties, deepening of appreciation, and intensity of love. While this is not the case in all losses, the death of a loved one in the family breaks a kind of a dam within the mind, and almost at once – whether one wishes it or not, there is a flood of memories. Images, incidences, bits of conversation, shapeless feelings, and sometimes - even hallucinations rush forth. The change that comes with death of a loved one sometimes brings with it a particular intense sadness or revulsions at the memory of the departure of the love one. These losses take a long time to heal. This is because death is a loss that is followed by health issues and bereavement. In the aftermath of a parent’s death for example, the stresses may not be just emotional, but physical as well (Myers 1986, 150). One of the most unusual aspects of parental lose are, in fact the potential for positive change in its aftermath. Other forms of loss bring with them a potential for change as well.
It is extraordinary how dying people count their loss as they leave or prepare to die. This includes all what one had acquired in life, may it be relationship, property not only one loved person, but every loved person in ones life, spouse or partner, children, parents, brothers, and sisters, close fiends, co-workers, fellow volunteers, even casual acquaintances. Losing all their long companionship, the touching, words, intimacies, exchange of opinions, sharing and ways of honoring each other and being together. Losses of ones work, life project, and the sense of contributing to the community. The losses of hobbies, arts, and favorite activities, from cycling to walking the world, photography, jewelry making, tutoring. The sense of purpose and all those activities gave to the dying. The many pressures that cheered one in the past, the delights of the
occasional gin and tonic, perhaps chocolate, and most important of all sex in all its variety and possibility. Loss of the future, with all its plans, hopes, expectations, and possibilities. The ability not to attend to matters of the family, i.e. wedding of ones daughter or see how it all turned out. Worst still it dawns on the dying person that no longer can one revise that past. The dying will also suffer from the grief of the loved ones. In the past maybe one confronted the other but now the dying cannot do so. The dreams have changed.
[1] Withholding of water and food
[2] Informal caregiving refers to family members or friends who provide or manage some aspects of the care of the people who need help because they are ill, infirm or living with a disability.
[3] All those who care for the dying – may they be family members, neighbors, hospice or hospital workers
[4] Response to threat
[5] Finitude is a shorthand way of speaking about the limitedness of everything
As will be seen later in this chapter, the hospice industry in the United States and maybe in other countries as well, actively seeks to provide competent care to the terminally ill. The desire to put these people into categories leads to depersonalization. The challenge to care for those with terminal illness is obvious in today’s culture. It is complex, especially when presented with the issue of talking about end of life. The cultural, historical, and theological viewpoint of the individual patient, when assisting them and their family in making or rejecting the choices they have made is paramount. Most families would want to go by the wish of the patient as expressed to them.
However, it also depends on the religious believe of the patient. This in itself become so complex if the patient and family argue on the basis of what they belief. Let us consider some religious beliefs that may lead to complexities of caring for the terminally ill. Terminal dehydration[1] has particular aversion for the Jewish population because of the the Jews view of life and food as of a life sustaining, healing, and comforting agent.The fine line between what is life sustaining verse what is death prolonging and the conflicting viewpoints with the various Jewish sects. Food is closely associated with the value of life for most Jews. The Jews believe it is a duty to live at all costs. The dilemma of withdrawing food and fluids becomes tied into the limited time frame of three days before the death to say that one is a dying person. Thus at this point many Jews have mistrust of the caregivers in the United States, for example. For Jews, perceiving hospice
as a “Christian” movement might bring the thoughts of fear, abandonment and desecration of the body. Fear is because of the past experiences with anti Semitism, abandonment is because the Jewish patient and family might not be aware that hospice death is with dignity (Bairds 2001, 209). Having said this then, notice that there exists a problem since care will not be as effective as the hospice may want.
As difficult as taking care of the terminally ill would be, it is also very difficult to understand the job. In the final hours of dying, the dying person makes demands, gestures and speeches that seem to make no sense. Family members, nurses, doctors, and other caregivers may not understand. As a result they respond with frustrations or with annoyance. They may try to humor the patient or to stop the confusion with medication. Gallanan assert that, “this is done to distance the dying person from those they trust in producing a sense of isolation and bewilderment.” (1992, 22). Keeping open minds and listening carefully to dying people is the only way to understand them. Therefore, when they are understood, they participate more fully in the event of dying. Families and friends can gain comfort, as well as understanding what the experience of dying is and what is needed to achieve a peaceful death. With the above viewpoint, then we would say the manner of dying benefit the dying person and the family. The dying need a healthy care philosophy and practice that attends to the physical, psychological, and spiritual needs of the dying. Caregivers should focus on alleviating the physical pain of terminal illness.
They also should help individuals face an impending death and achieve a psychological closure of life. The value of assistance for the dying, Williams the author of Terminal Illness: Opposing Views, points out, “has been largely ignored by the mainstream medical community”(1992, 22).
In this baby boomers age, more family members are providing care for aging parents and relatives. Theses family caregivers are the cornerstones of the long-term care system, providing millions of hours of unpaid services. This assistance runs the gamut from running the occasional errand, such as shopping or picking up medications, to providing significant amount of personal nursing care. Care giving can be gratifying and meaningful, but at the same time, the ongoing responsibilities take a toll on many caregivers’ physical, mental and economic health. Caregivers of these patients are more likely to have depression, a risk factor for many serious health conditions. Policy- makers have to recognize the effect that this trend will have on coming generations. A recent national survey by the National Family Caregivers Association (NFCA) found that more than one quarter (27%) of the adult population has provided informal[2] care for a chronically ill, disabled or aged family member or friend during the past year. That
represents more than 54 million caregivers based on current census data.
Terminal illness care, is an area that even professionals don’t understand too much. Braid compares terminal care as a game with which even doctors are unfamiliar. Rescuing a patient whose condition is unstable is a serious game that we are quite uncomfortable playing (2003, 48). Without a clear understanding of the object (which is to save the life of the patient) of the game or its rules, patients’ care at the end of life is subject to dangerous inconsistency. Coping with terminal illness is more than hard work. It is all consuming and creeps into every corner of people’s life. There are so many people to talk to, so many questions to ask, so much to do. Terminal illness does not only belong to the one who is sick; it affects family members, friends, neighbors, and coworkers too. Each person involved had his or her own set of issues, questions and fears.
As seen in chapter one, people react in many ways to news about the impending death of someone they love or that of their own. They may feel shocked, disbelief, hunger, or fear. Fear of death is so common in all societies. As will seen in this chapter, fear of dying is not one fear but a multiple of fears. Thus, the author has called other fears that follow concerns. There are concerns to do with physical illness and incapacity, concerns of being handicapped, concerns of being a burden on friends and family, and concerns of being unable to contribute to the well being of the family. There are concerns about physical pain, concerns about the ending of life itself, and concerns of dying while some of life’s potential is unfulfilled.
As Buckman observes, “the precise nature of fears and concerns will partly depend on the nature of the relationship of the person dying to the living and /or the nature of one's own (1988,62). Fear is dealing with the unknown. For the loved ones may be frightened of being left alone, of being helpless, of cracking up and failing to cope, of being a hindrance to the dying person when one should be a help, of trying to live without the loved one afterwards and failing, among other fears. Why is fear the dominant factor during dying moments? Murphy points out that, “this is because it has not been easy to say what we need in our family, and to say it without judgments”(1999, 106). When fear dominates, one should focus on what is precisely bringing about the fear. Assemble the list of things that bring fear most, and observe that fears are as a result of the undone things with the dying loved one. Therefore, there needs to be a time for family to come together and discuss feelings, and share what their feelings are. But to most people this is unthinkable. In most cases the idea would be rejected by most of the family. But when stories are told, the dying has the opportunity to die in peace and leave the family in more peace. Assisting the dying, giving time and space to ventilate what is in his or he mind, and staying close while this bring relief to the patient. How soon can this fear of dying be overcome? The answer depends on how fast the individual is able to cope with the realities of death. The fear of living incompetent life must be overcome. Death is a threat largely because it eliminates the opportunity to achieve goals important to our self-esteem, or because it deprives one of a chance to have longed-for experience. Death fear, like anxiety in general, is invariably related to a situation that has not arisen. It is, not an actual one (Shepherd 1975, 124).
Anger at some stage of an illness is very common. Why do people get angry when they are ill? It is actually common in any illness, whether serious or not, even with a simple and self-limiting illness. The single most important reason is loss of control. Most dying patients try hard to have control over most of the things that happen in their lives. At this time it is necessary to reflect on anger as described earlier, that dying people might feel angry. It is not uncommon to hear someone terminally ill ask, “Why is it happening to me?” Some people feel angry with God for allowing them to be sick, other feel angry at their doctors for not being able to find a cure, others still feel angry at the government for putting money into weapons instead of medical research. Rather it is much easier emotionally to find fault with an outside force than to accept death with
calmness (Angel 1987, 79).
If a family member dies unexpectedly, or too young, or as the result of an illness that might have been cured if detected earlier, it is normal for the surviving family members to feel angry. They may vent their anger towards the medical staff that cared for the loved one already dead. Sometimes these feelings have no basis and sometimes lawsuits follow. Other times they are never justified at all. Yet the loved ones are distraught, and use anger as emotional outlet. It is uncommon for loved ones to turn anger unto themselves. This manifests itself as guilt. (Angel 1987, 97). In authors experience as hospital chaplain, he has dealt with many individuals who are angry, over the death of their loved ones, or their own death. One afternoon the was responding to a unit emergency call, only to learn that a patient had died; thus he needed to help the family with emotional and spiritual needs. Family members were all on the hallway shouting, screaming, and running up and down the hallway. One of them said to me that their mum was doing well five minutes ago and she (one of the daughters to the patient) does not know what they have done with her, and they must “fix my mother." This daughter felt angry that the
mother had died and they have not done anything about it. Therefore, the anger was directed to the care - giving team. Kubler -Ross in her book, On Death and Dying indicates that, “when the first stage of denial cannot be maintained any longer, it is replaced by feelings of anger, rage, envy, and resentment” (1969, 88). This stage of anger is very difficult to cope with from the point of view of the family and staff. The reason for this is that this anger is displaced in all directions and projected onto the environment at times almost at random.
The uncertainty about death brings about many unanswered questions to the dying or the family. Immersed in all sorts of feelings, they wonder, whether to talk about it or not, or ever accept the reality of dying. Thus since the above has not been solved in the mind of the dying or the family, death becomes remote, no longer an integral part of life. The problem for most families dealing with death is that it is not easy to say what they need to say in the family setting, and say it without interruptions or judgments. Anything of a painful nature that might cause feelings to be hurt is not disclosed. In this kind of scenario, the family cocoon is not permeable; tears and feelings of all sorts are not allowed to mix with the family dynamics and catalyze healing, with the residue flowing out so that the family within is softened and nurtured (Murphy 1999, 106). The anxiety raised by the question of dying might also induce rage, with an angry demand as to why the dying person is trying to be upsetting. Those in this state move on further, past the tears and anxiety and anger, and probably would say that they would not want their death to be a burden to the family and that they need to get on their own lives as if death was not part of their own life.
Dealing with death and dying
Persons who help dying patients round out their lives expend tremendous energy. This needs replenishing. Patients and friends help in replenishment, but since they come and go, there is need to recognize the importance of ongoing relationship of the Hospice. Little wonder that in the process of dying, when there is often much tension and grief, patient and family feel quite unable to navigate alone and yet may not find the appropriate guidance from their physician or other caregivers. Thinking about death, dying, bereavement, establishes a ministry. Caregivers[3], which mean everyone who attends to the dying, need preparation to care for the dying. According to Murphy, “at the end of life, when all is said and done, the family members who are attending their dying relative as both guides and witness will often encourage their loved one to let go” (1999, 140). Holding on to one another for dear life in bonding dependency is a way of life in many families but this makes it painfully difficult to die. Families not only have to deal with the pain of knowing that a loved one is dying, but they do so in a state of uncertainty, not sure of what to do, how to do it or when. On the other hand death comes too soon sometimes with no time for process of the dying. This can be devastating to the surviving members or the family and all others in social family. Very few health people actually want to die, and very few seriously ill people actually hasten their deaths. We are all programmed to hold on to life for as long as possible. This means that if somebody tells us he or she has an illness that may kill, we find it very difficult to accept it as a fact. Everybody facing the threat of death has to make a painful transition from thinking of himself as a perfectly healthy person to thinking of himself as somebody who might die. One can think of this transition as going from “ It won’t happen to me, to, it really might happen to me.” (Buckman 1988, 29). How can we face the prospect of our own deaths and the deaths of others that we love? In her book Talking About Death Won’t Kill you, Virginia Morris writes,“Death belongs to the dying and those who love them” (2001). Usually it shouldn't. While we know that death happens, we don’t quite believe that it will happen to us, or to those we love, even when we think it will, not in the near future. Many people do not have any vision of what they would do if happen to them. Death has become unfamiliar territory where there is so much more we need to know about it.
In an article in the, Journal of Psychosomatic Research (2000) entitled “Facing death” Hinton cited one study at a tumor clinic where 560 patients were asked whether they would like to know of a fatal diagnosis: 80% desired this information, while 12 % didn’t. The remaining 8% would not give a response. Why do we find this kind of variation? Sharing news of impending death would create too much stress that the patient cannot handle. In fact, even doctors and other medical caregivers cannot handle the death of a patient. This is because many caregivers are not prepared to deal with death and dying. Elizabeth - Kubler Ross, who has worked with over nine hundred dying patients reports that, only 1% are prepared for death (1988, 34). On the same note Shepherd asserts that “people get born and they have to be prepared to die one day” (1975, 35).
During the period author has been hospital chaplain, he come across people who are prepared to die and very much at peace. He also had families and loved ones who found that caring for the dying person, though very difficult, was a rich and gratifying experience that changed their lives. In his book, “When Someone you love is dying” Shepherd observes that, “it is as unrealistic and damaging as denying that time is running out. We can receive comfort, then, in knowing that nearly everyone who has been given the news of incurable illness manages to put to some Creative use.” (1975, 48). This includes the survivors as well. Albom, in his book, “Tuesdays with Morrie” points out that “to know you are going to die and to be prepared for it anytime, that’s better. That way you can actually be more involved in your life while you are living”(1997, 81).
Another difficult aspect of dying is dealing with emotional toll. When the author first became a resident chaplain in one of the leading hospitals in Houston, Texas, he could not understand why every evening after work I got home feeling too tired and worn out. When a patient is dying, all caregivers take the toll of not able to “help” not die. For the patients too, psychological pain is difficult to measure or study. Pain at death is prolonged with a lot of loneliness and frightening. Most disturbing of all is that patients who are dying are typically distanced, both physically and emotionally, from loved ones, who can’t hurdle the physical intrusion of the hospital and who often don’t have any idea of how to help or what to do. They feel powerless and frightened in the face of death. Williams contends, “terminally ill patients should plan for the end of life. Asserting that planning near the end of life is helpful. By thinking ahead about what could happen, and
How one will deal with problems if they do, one can create a better life and a better quality of life for oneself and the people who love and care about you” (2001, 67).
Dying brings with it dramatic physical changes that the dying person, the family and caregivers must anticipate. Some patients will lose the ability to walk, and care for themselves. Most times dying patients will use diapers and bedpans. Family, friends, and caregivers must be prepared to deal with unpleasant sights and odors, especially if a loved one is dying at home. There are physical changes that occur when danger arises, “Fight and Flight.”[4] This happens when there is death and with the subsequent sadness and grief that is experienced with all the changes that occur. There are the physical sensations of grief and they are just as real as the deep heartache of emotional grief. When death is near occurred, many dying patients and grieving family members are struggling with resisting the natural reaction to change. There are so many losses that a dying person deals with, some of which we will not be able to deal with in these hort pages.
Human beings are relational beings attaching themselves to people and things that are, at the same time finite. This combination of attachment and finitude[5] is the occasion for grief. The fundamental human dilemma is that human beings are limited creatures who know that they will die. And the fundamental human longing is that we might keep the unity we had before birth forever. Herbert Anderson in an article entitled, “Moments of Loss, Seasons of Grief” points out that, “When our job, primary relationship, or vacation is pleasurable, we like to think it will never end. Therefore it is not surprising that we struggle with being finite creatures”(Circuit Rider 2005, 21). Even when we believe that death is part of God’s plan, we will rage at death when it is experienced as a thief that robs us of people we love. Every human being is attached to things or relationships which form strong bonds of affection. Some people however will seekLimited attachments because it is too painful to lose what we love. Some kinds of Christian
spirituality support the conviction that we should limit our attachment because this world is not ours, we are but sojourners.
Understanding the pervasiveness of loss gives us the opportunities for learning how to grieve and prepare for death from the beginning of life. Kubler - Ross in her book Death- The Final Stages of Growth, points out that, “Death is a meaningful, growth indicating aspect of life, the experience of death can help enrich and give meaning to existence on earth (1975, 145). During death human beings lose material, role, physical functions, dreams, as well as loved ones. When individuals lose someone or something they love, the grief feelings may be all they have left. Harboring the necessary selfishness of grief will make it possible for people to hold on to their grief, the closest connection they have to the lost person, until it is time to let go of the grief and hold on to a memory.
The death of a member of family is often a major turning point in dealing with issues in the family. The death of a spouse for example can produce some of the most profound and intense experiences of human emotion and thought. Such a loss elicits a wide range of internal responses, which according to Schuchter are at times overwhelming and at times perplexing (1998, 16). Sometimes tremendous growth occurs – renewing of ties, deepening of appreciation, and intensity of love. While this is not the case in all losses, the death of a loved one in the family breaks a kind of a dam within the mind, and almost at once – whether one wishes it or not, there is a flood of memories. Images, incidences, bits of conversation, shapeless feelings, and sometimes - even hallucinations rush forth. The change that comes with death of a loved one sometimes brings with it a particular intense sadness or revulsions at the memory of the departure of the love one. These losses take a long time to heal. This is because death is a loss that is followed by health issues and bereavement. In the aftermath of a parent’s death for example, the stresses may not be just emotional, but physical as well (Myers 1986, 150). One of the most unusual aspects of parental lose are, in fact the potential for positive change in its aftermath. Other forms of loss bring with them a potential for change as well.
It is extraordinary how dying people count their loss as they leave or prepare to die. This includes all what one had acquired in life, may it be relationship, property not only one loved person, but every loved person in ones life, spouse or partner, children, parents, brothers, and sisters, close fiends, co-workers, fellow volunteers, even casual acquaintances. Losing all their long companionship, the touching, words, intimacies, exchange of opinions, sharing and ways of honoring each other and being together. Losses of ones work, life project, and the sense of contributing to the community. The losses of hobbies, arts, and favorite activities, from cycling to walking the world, photography, jewelry making, tutoring. The sense of purpose and all those activities gave to the dying. The many pressures that cheered one in the past, the delights of the
occasional gin and tonic, perhaps chocolate, and most important of all sex in all its variety and possibility. Loss of the future, with all its plans, hopes, expectations, and possibilities. The ability not to attend to matters of the family, i.e. wedding of ones daughter or see how it all turned out. Worst still it dawns on the dying person that no longer can one revise that past. The dying will also suffer from the grief of the loved ones. In the past maybe one confronted the other but now the dying cannot do so. The dreams have changed.
[1] Withholding of water and food
[2] Informal caregiving refers to family members or friends who provide or manage some aspects of the care of the people who need help because they are ill, infirm or living with a disability.
[3] All those who care for the dying – may they be family members, neighbors, hospice or hospital workers
[4] Response to threat
[5] Finitude is a shorthand way of speaking about the limitedness of everything
