Beyond Physical: The Wave Effect of Terminal Illness

By Amy R. Williams

Abstract

This manuscript details some of the emotional, mental, and psychological effects of a terminally ill diagnosis. While the individual that is ill must suffer the greatest consequences of such a diagnosis (including death), the family dynamic is also greatly troubled upon diagnosis of a terminal illness. The wave effect of such a grave diagnosis reaches every facet of life including work, family, the will to live (or die), and one’s coping mechanisms. These topics are explored within this manuscript; the author then challenges the direction for future research on each topic followed by drawing relevance to the Boston Counseling profession relating to terminal illness.

Introduction

At first glance, an individual diagnosed with a terminal illness has one major battle to fight, a physical one. Immediately upon hearing of an individual diagnosed with a terminal illness most people envision frail bodies with no hair fighting for physical strength day in and day out. While this is often an accurate picture of terminal illness, it is not a complete assessment of the many facets a terminal illness effects in an individual and family life.

The physical challenges of a terminal illness are undeniable and clearly seen, but the psychological, emotional, and mental disturbances are not. Individuals diagnosed with incurable diseases that are aware of impending death deal with greater questions than ‘will this treatment/medicine make me sick?’ An individual diagnosed with terminal illness also begins to consider such topics as advance directives, financial concerns, anxiety about death, and emotional welfare of family members. Some individuals choose to continue working as long as physical conditions allow, others choose to live out remaining days at home with family, and still others consider hastening death. The mental, emotional, and psychological processes that arise from a terminal diagnoses are complex. While these processes are not prominent in the minds of objective points of view, they are acutely present for individuals diagnosed with a terminal illness.

In addition to a personal battle physically, mentally, emotionally, and psychologically, one must also consider the social and familial challenges of a terminal illness. Whether an individual is highly or minimally involved in a social network, the diagnosis of a terminal illness limits interaction to one degree or another. One such example is demonstrated by an individual receiving chemotherapy for cancer. While an individual is treated with chemotherapy, his or her immune system is not capable of fighting the least of harmful diseases. Therefore, one cannot interact with others to the same degree as before his or her diagnosis. This type of limitation affects family interactions as well. It is also important to note that in some cases those diagnosed as terminally ill are children or have small children. Clearly, the diagnosis of a child or young parent poses significant challenges for the family unit.

The challenges faced by a terminally ill individual prove to be great in all areas of life. Families change, social networks change, mental and emotional attitudes about life change, and death becomes a reality. The following headings detail empirical findings on the subject of the terminally ill and a few of the many facets affected by a terminal diagnosis.

Employment

One of the first considerations by individuals receiving a terminal diagnosis is whether to continue working or not. In some cases, the choice is easy because of physical disabilities that will result from diseases such as Lou Gehrig’s, AIDS, or advanced stages of cancer. These individuals are often unable to return to work upon diagnosis. For others, the choice to work is not apparent upon diagnosis of a terminal illness. Some individuals choose to work normal hours while others choose to stay home indefinitely.

It is logical to question why one would continue working when he or she is facing impending death. However, if one is able to work, it is beneficial to the psychological and emotional health of the individual; “pursuing professional goals may promote psychological well-being, quality of life, and overall adjustment to disease progression” (Westaby & Versenyi, 2005).

A study conducted by Westaby and Versenyi (2005) explored several reasons individuals with terminal illnesses chose the intention to work or not to work. When intrinsic and extrinsic motivations were considered, individuals continued to work for intrinsic reasons more than extrinsic reasons (Westaby et al., 2005). Intrinsic reasons reflect emotions and feelings of fulfillment while extrinsic reasons reflect material benefits of continued work such as wages and health benefits (Westaby et al., 2005). This supports the idea that individuals diagnosed with a terminal illness feel a sense of urgency to contribute to society in an impressionable way.

Familial Challenges

Perhaps the most difficult strain placed on a young family in present society is the diagnosis of a terminal illness. When a child or a parent with a young child is diagnosed with a life-threatening disease, the entire family dynamic is scrambled. Children diagnosed with a terminal illness face significant challenges in dealing with daily life. Acceptance is hard among peers throughout childhood, but harder still if one is facing the obvious differences a terminal illness is certain to bring. Likewise, while the differences vary from that of personal diagnosis, children living with the daily burden of a dying parent also face significant challenges. Parents and children alike must redefine life to revolve around the challenges introduced by such a diagnosis.

The Healthy Parent

Upon the diagnosis of a terminal illness in a family unit, the healthy parent immediately receives several unexpected burdens. The first and most obvious new responsibility is that of helping a sick spouse through physically difficult times. Other responsibilities that present themselves include housekeeping, maintenance of finances, open communication with medical personnel, and daily interaction with well-intended friends, family, neighbors, and community. While all previously mentioned tasks are of importance, perhaps one of the most significant responsibilities of the healthy parent is remaining attentive and available for his or her children during such a difficult trial. Clinical experience shows that parenting taking place during a terminal illness can influence a child’s overall adjustment to loss after the death of a spouse (Bettes, Christ, Mesagno, Raveis, Siegel, & Weinstein, 1990). During the terminal illness of a parent, children’s needs are accelerated beyond normal levels, “children experience a sense of vulnerability and an associated heightened need for emotional support and physical care” (Bettes, et al., 1990, p. 568). Often, while it is the desire to remain attentive to the child, the healthy parent becomes overwhelmed with the responsibilities of caring for an ill spouse and has difficulty gathering enough physical, emotional, and psychological strength to support and discipline children adequately. Lack of strength to provide parental discipline and needed emotional support for children leaves a parent questioning his or her competence as a parent during the terminal illness of a spouse.

Using the Global Parenting Confidence Measure (GPCM), Bettes, Christ, Mesagno, Raveis, Siegel, and Weinstein (1990) examined the perceived competence levels of well parents facing the death of spouse while also trying to remain attentive to the needs of children in the family unit. The GPCM allowed well parents to self-report perceptions of competence in relation to raising a child, or children, while also supporting a terminally ill spouse. Bettes et al. (1990) explored several parent/child relational areas through well parents’ competence perception including, Comfort/Openness, Sensitivity/Reassurance, Promoting Self-Esteem/Independence, Support/Trust, and Setting Standards/Discipline. While confidence levels dropped in most areas, the most obvious decline in parent’s confidence levels came in the areas of Sensitivity/Reassurance and Setting Standards/Discipline (Bettes, et al., 1990). This finding supports logical thought in the case of a parent facing the death of a spouse and trying to raise a child simultaneously.

It is not hard to imagine the small amount of reassurance one parent could offer a child when the other parent is facing imminent death. It is also quite logical to assume it would be harder to establish rules and apply discipline when one’s main concern is whether one’s family unit will remain intact throughout another day or not. The physical, emotional and psychological demands on that of a well parent facing the death of a spouse are inconceivable to others without the same experience. Because well parents are not able to interact with other individuals experiencing the same type of situation, often the well parent struggles with depression and feelings of inadequacy while trying to raise socially adjusted children despite the challenge of caring for a dying spouse (Bettes, et al., 1990).

Child Understanding and Bereavement

As previously mentioned, children also face significant challenges upon a parent’s diagnosis of a terminal illness. Depending upon the age of a child, a terminal diagnosis may or may not be understood completely. According to Feldman (2008), children do not begin to understand the concept of death until around the age of five. Before the age of five, most children do not understand the finality of death, furthermore the universality of death is not usually comprehended until around the age of nine (Feldman, 2008). With this in mind, one must consider whether advance knowledge of the impending death of a parent is beneficial for children in the grieving process. While it is important children are aware of such a diagnosis as terminal illness, it must also be understood that knowledge of coming death does not necessarily better prepare children for the death of a parent.

In a study conducted by Cain, Kalter, Lohnes, and Saldinger (1999) it was concluded that the advance knowledge of the impending death of a parent is no more beneficial to the bereavement process of a child with a terminal parent than that of child experiencing the sudden death of a parent. There are several reasons this conclusion holds truth. One obvious reason for this result is the mental capacity of young children to cognitively comprehend death as a future result of a terminal diagnosis (Cain, et al., 1999). As previously stated, most children do not fully comprehend death and the finality of death until around the age of five (Feldman, 2008). Another reason is that children often do not receive the same opportunity as adults to say goodbye to a dying parent because of both parents’ wish to avoid the subject of impending death in the presence of the child (Cain, et al., 1999). Thirdly, a child has no need to prepare for a new role in society upon death of parent (Cain, et al., 1999). This is unlike the surviving parent that will immediately take on the role of widow or widower upon death of the spouse (Cain, et al., 1999). This conclusion suggests the importance of being attentive to the emotional and psychological needs as well as the social adjustment of a child affected by a terminal illness before and after a death.

Euthanasia and Physician Assisted Suicide

A critical debate alive and well in the United States and around the world among members of society is that of euthanasia and physician assisted suicide. With the exception of the state of Oregon, no state has legalized either option for individuals wishing to hasten death due to terminal illness or other inflictions. Euthanasia involves a physician administering a lethal amount of medication to an individual wishing to die whereas physician assisted suicide allows a patient to administer his or her own lethal dosage of medication. The underlying assumption driving much of the political debate involving these topics is that terminally ill patients, whom are going to die anyway, should have the right to end suffering before it becomes unbearable. However, research suggests that individuals faced with the decision to hasten death often consider it as a later option, but rarely would choose it immediately if given the opportunity (Allard, Chary, Chochinov, Clinch, De Luca, Fainsinger, Gagnon, Karam, Kuhl, Macmillan, McPherson, O’Shea, Skirko, and Wilson, 2007). Through conducting interviews with open-ended questions, Allard et al. (2007) found that individuals facing a terminal illness were more likely to endorse euthanasia or physician assisted suicide if they, “had lower religiosity and….had no fundamental moral objections…that were grounded in religious tenets” (2007, p. 321). This supports the idea that fundamental Christians, holding the Bible as ultimate truth, have a difficult time supporting hastening one’s own death. However, it is difficult, even in Christian circles, to justify prolonged suffering facing the certainty of death.

Complicating the moral questions of euthanasia and physician assisted suicide are the emotional and psychological uncertainties one is sure to face in the later stages of life. While an individual may be certain of the decision for or against euthanasia and physician assisted suicide in the early stages of a terminal illness, opinions are likely to change with additional physical, emotional and psychological stressors related to impending death.

It is also important to note that while many people support the idea of euthanasia and physician assisted suicide, opinions tend to change when the question is considered on a personal level. Some research has shown that up to 62% of individuals support such actions when considering the general moral principle, while only 4% of individuals facing impending death would actually choose euthanasia or physician assisted suicide if it were made available to them (Cicirelli, 1997). Furthermore, in the state of Oregon only 0.1% of individual’s faced with hastening certain death have chosen to do so (Allard et al., 2007).

While it is true that the underlying assumption that drives the political debate on euthanasia and physician assisted suicide is to alleviate the physical suffering terminally ill patients endure, there is research to suggest that patients are likely to choose hastening death for emotional and psychological reasons more so than physical reasons (Rosenfeld, 2000). A survey of patients in pain because of terminal illness resulted in little difference of opinion than the general public on the legalization of euthanasia whereas, a survey administered to terminal patients experiencing depression reported discussing euthanasia as an option with a physician (Rosenfeld, 2000). The emotional and psychological processes accompanying terminal illness can be described as complicated, at best. It is difficult to assess the emotional and psychological strain placed on individuals facing imminent death. However, it is not hard to understand that one sometimes becomes emotionally and psychologically distressed by a terminal diagnosis to the point of wanting to hasten coming death. Rosenfeld (2000) asserts that the psychology profession and the consideration of the mental, emotional and psychological state of many individuals facing the decision for euthanasia or physician assisted suicide has been largely insignificant in the political debate for legalization of such acts. In other words, it seems the actual mental, emotional and psychological states of individuals in such a position are being overlooked for the sake of political argument and expression.

Advance Directives

Similar to the decision of euthanasia or physician assisted suicide is the decision to extend life using medical technologies or not, this decision is often legalized through documents referred to as advance directives. Ditto and Hawkins (2005) document ambivalence toward end of life decisions previously stated when actually faced with looming death. The importance of advance directives such as living wills is great, but Ditto et al. (2005) also suggests one must follow certain steps in order to ensure his or her wishes are met when faced with end of life decisions.

First, an advance directive must be stated in writing, then it must be deemed authentic, does the document authentically represent the individual’s right to choose end of life medical treatment (Ditto et al., 2005)? Thirdly, if a person is designated to make end of life decisions for the individual once incapacitated (deemed a surrogate), the surrogate must be made aware of the advance directive or it is useless (Ditto et al., 2005). Once these barriers are hurtled, the surrogate’s emotional capacity to fulfill an individual’s desire or a doctor’s personal moral obligations could still stand in the way of an advance directive (Ditto, et al., 2005). Thus, even if an individual takes the necessary steps to create advance directives there are still several barriers that may complicate the patient’s wishes (Ditto et al., 2005). Because terminally ill patients are often not coherent enough to make important decisions toward the end of life, it is vitally important for advance directives to be clearly stated and readily available for medical personnel and those responsible for surrogate decision-making.

It is wise to have advance directives in place even for a healthy individual, but why are advance directives more relevant to terminally ill patients than the general public? The answer lies in shortened life expectancy and rapid physical decline among individuals faced with a terminal illness. Often the physical and mental capabilities of a terminally ill individual rapidly decline upon diagnosis. For this reason, it is vitally important for terminally ill individuals to discuss living wills and other advance directives with family and medical personnel as soon as possible upon diagnosis. Despite obvious reasons previously discussed that one should have advance directives in place, less than 25% of Americans have a living will or other type of advance directive in writing (Ditto et al., 2005).

Various Relief Tactics

Terminal illness cuts a difficult path that one must travel despite any wishes to follow another. No one wishes such diseases as Parkinson’s, Lou Gehrig’s, AIDS, or cancer to befall anyone. The truth remains that many individuals are affected day in and day out by the infection of such diseases. What can be done to aid individuals faced with the grave consequences of a terminal illness? How can the quality of life for such individuals improve while awaiting impending death? There are many therapies, support groups, and community agencies to help support individuals with terminal illnesses. Detailed here are three supportive tactics: expressive writing, filial therapy, and hospice care.

Expressive Writing

Terminally ill patients often have trouble sleeping, “Comparisons with the general population indicate that sleep difficulties are approximately two to three time more prevalent in cancer patients than in healthy controls” (Amato, Cohen, Gilani, Hall, Moor, Sterner & Warneke, 2002, p. 618). This is sometimes due to medicines or treatments that must be taken for chronic illness and it is sometimes due to anxiety about one’s impending death (Amato, et al., 2002). Regardless of the reasons one is unable to sleep during terminal illness, a study conducted by Amato, Cohen, Gilani, Hall, Moor, Sterner and Warneke (2002), concludes that the use of Expressive Writing (EW) aids healthy sleep patterns in the terminally ill. In EW, a terminally ill patient writes about his or her experience with cancer including emotions related to the illness (Amato, et al., 2002). These individuals were compared to a control group of terminally ill patients that practiced Neutral Writing (NW) about general health behaviors regarding terminal illness (Amato, et al., 2002). The results concluded individuals in the EW group showed a significant difference in four measures of sleep; total sleep disturbance, Sleep Duration, Sleep Quality, and Daytime Dysfunction (Amato, et al., 2002).

This study is just one proof that humans are emotive creatures that require balance between overly expressing emotions and holding emotions back to an unhealthy level effecting important aspects of life such as sleep patterns. The idea of Expressive Writing supports the biblical principle of expressing one’s self through prayer in an honest and forthright manner. God desires for humans to relay thoughts and emotions about current life experiences to Him through prayer as evidenced in Jesus’ prayer to His Father before His crucifixion. This same principle is also expressed in the psalms that contain the ebb and flow of positive and negative emotional prayers to the Lord. As exemplified in many of the Psalms, burdens were lifted after expressing emotions to the Lord. One such example is when David cried out to the Lord for relief in Psalm 69, “but I am afflicted in pain; may Your salvation, O God, set me securely on high” (New American Standard Bible, 2000). David then continues a few verses after that to call for all the earth to praise the Lord. This example supports expressing one’s emotions to aid in the lifting of life’s burdens and improving psychological health just as in the case of Expressive Writing aiding in healthy sleep patterns.

Filial Therapy

While Expressive Writing can improve the quality of life for many adults facing an impending death due to terminal illness, there are also techniques in helping the parents of seriously ill children learn to cope with life despite illness. Having a terminal ill child places great stress on the life of parents. In addition to the emotional stress that results from knowing a child is facing death, one must also consider a parent’s strong desire to help a child adjust to society despite an illness. Children diagnosed with a serious illness have more difficulties adapting to the world around them, “chronically ill children have an increased risk for developing anxiety and depressive symptoms, as well as general behavioral and adjustment difficulties” (Joiner, Landreth, Solt, & Tew 2002, p. 81).

One technique designed to help parents deal with the emotional stress of an ill children that of filial therapy. Filial therapy allows parents to engage in different types of play therapy with his or her child (Joiner et al., 2002). In a study conducted by Joiner, Landreth, Solt and Tew (2002), filial therapy was examined to be an effective tool in helping parents manage overall emotional stress levels in relation to the illness of a child. It is logical to conclude that as a result of lowered emotional stress levels through filial therapy, a parent is likely to be more attentive to the needs of the ill child. Because of outlets such as that of filial therapy, a parent is able to contribute higher levels of emotional strength to the social adjustment of an ill child.

Hospice Care and Volunteers

Many therapies and techniques require great emotional and physical strength from those inflicted with terminal illness and the families affected by an individual’s diagnosis. However, entities such as hospice medical care and hospice volunteers offer support beyond that of the immediate family. Hospice care not only provides practical support for terminally ill patients, but also emotional, psychological, and often spiritual support as well. While some hospice care is provided in facilities designed for inpatient hospice care, there is also a facet of hospice care that provides support in the homes of the terminally ill. Hospices and hospice agencies are staffed with doctors, nurses and other medical personnel to provide physical comfort to patients during a terminal illness. These agencies also employee social workers, chaplains, and provide volunteers as well.

Volunteers play an important role in the functioning of hospice care. Volunteers are available to families facing the death of a loved one for various relief tasks such as household chores, reading to the terminally ill and sitting with a terminal patient while the primary caretaker attends to duties not otherwise manageable. Some hospice volunteers are also trained to provide additional emotional support to individuals and families facing imminent death. According to a study conducted by Herbst-Damm and Kulik (2005), the involvement of hospice volunteers play a role in the survival times of individuals diagnosed with a terminal illness. Herbst-Damm et al. (2005) studied the effects of volunteer support on individuals with a prognosis of six months or less to live. Hospice volunteers present in the homes of dying patients proved to be a factor in the longevity of terminal patients. Individuals and families that accepted hospice volunteers extended survival times of the terminal patient by an average of 80 days (Herbst-Damm et al., 2005). This is a remarkable conclusion that should encourage many more individuals towards involvement in agencies providing hospice care in communities around the country.

Conclusion

Future Directions

The diagnosis of a terminal illness affects the lives of many individuals day in and day out. The physical restraints of such an illness are undeniable, but the emotional, mental and psychological changes that take place upon a diagnosis of terminal illness loom as well. No area of one’s life is untouched by the effects of a terminal diagnosis. Employment must be reconsidered, the family structure is shaken, individuals must consider end of life decisions (perhaps for the first time), and techniques to help cope with a new way of life must be introduced. Realizing these topics are just a few of the many areas touched by the new of a terminal illness, it is important to challenge further research in each of these areas.

In the area of work, it is interesting to note the benefits of working despite the infliction of a terminal illness. The intrinsic motivations noted that urge people to continue working pose further research questions. If given the opportunity to invest in future generations in ways other than career, would terminally ill individuals choose to do so? Perhaps community organizations should offer activities for terminally ill patients to give back to the local community through investing time in other’s lives.

As if the family structure were not complicated enough in today’s society, the diagnosis of a terminal illness complicates this delicate structure even more. The strain placed on every member of a family involved with a terminal illness is draining in all areas of life: physically, emotionally, mentally and psychologically. Determining the next course of research involving the family structure and terminal illness should involve family therapy revolving around the terminal illness and its many effects. Expressive Writing and filial therapy seem to have benefits for improving the quality of life for those affected by a terminal illness. It is important to acknowledge the benefits of the therapies previously discussed while also researching new ways to help individuals and families cope with a terminal diagnosis. Research is slim in the area of whole-family support during such difficult times. Suffering family members are often overlooked when the physical pain of the diagnosed individual is evident. Further research on the dynamics of family life during a terminal illness would help establish coping strategies. It would then be beneficial to implement the identified coping strategies. The available training for these coping strategies could then be publicized through oncologists’ offices and terminal illness organizations.

While research regarding euthanasia and physicians assisted suicide is not lacking, it is an interesting fact that much of the debate centers on physical pain. As noted earlier, psychological and emotional factors seem to be greater determinates as to whether either of these methods are actually used. It stands to question whether proponents of legalizing such acts are advocating for the reduction of pain for loved ones or the reduction of the length of time one must see a loved one suffering. Perhaps, it is the psychological and emotional factors of those advocating for legalization of euthanasia that fuel the passion. Physical deterioration is clear in those suffering from a terminal illness, but one must also consider the emotional and psychological processes involved before advocating for euthanasia or physician assisted suicide. It would be beneficial to see more research reflecting the emotional and psychological processes supporting or rejecting euthanasia and physician assisted suicide in terminally ill individuals.

Another aspect gaining consideration is that of advance directives as discussed previously. Advance directives have obvious benefits in the life of an individual facing a terminal illness, but more individuals must begin using them. With the benefit of advances directives, families carry less of a burden in end of life decisions. To prevent advance directives from being ignored, it may be helpful for health care professionals to advocate for a clear definition and process to place advance directives in writing. Family members should be informed of the location of such advance directives as living wills and have access to them.

Boston Counseling Implications

It is important that counselors gain knowledge in the area of dealing with terminally ill patients. While not all clients are affected by a terminal illness, there is a great possibility that one of its many facets touches some. Counselors must look beyond the physical effects of a terminal disease and consider the emotional, mental, psychological and spiritual effects of such a diagnosis on an individual and the family involved.

The aspects of a terminal illness detailed here can be practically applied to the Boston Counseling office in several ways. What if a client asked whether or not to continue working in the face of impending death? What if a client had a spouse, child or loved one with a terminal illness complicating his or her existing severe emotional problems? What is a client posed the idea of hastening impending death? These are all relevant questions likely to occur in the Boston Counseling office upon the terminal diagnosis of one’s self or a family member. One must be well informed of the looming emotional, mental, psychological and spiritual effects of terminal illness in order to provide adequate counsel to individuals faced with a terminal illness.

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