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Grieving and Coping With A Dying Loved One: A Serious Challenge

By Maryse IsmaSpecial to CSMS Magazine         This report is part of an extensive research on terminal illness done by Maryse Isma for the Center For Strategic and Multicultural Studies. Some readers might find it very sad, but it is based on facts. For Security purposes, the names of the participants were changed.  Terminal illness, the impact of these two words can vary greatly from person to person. Some know exactly what to do as a result of past life experiences, education or the grace of God. Others are devastated and feel helpless and powerless to do anything. Many handle grief and loss poorly, merely out of fear of doing the wrong things.      According to Barsivic (2004), families face a number of relatively common problems and issues in terminal illness; and the wrenching up and down process of illness is similar to that, which the patient experiences. One primary difference is that while the patient is going through his or her trials, family members must watch helplessly. Family members going through the process at different speeds often complicate the situation. Sometimes the variations in experience result in-patient and family having difficulty supporting one another. (Pp.668-667).Dole (1999) stated, “ Most people do not just suddenly become terminally ill. Instead, there is usually some variation of a series of events or an up-and-down process that includes many physical changes, spiritual crises, and virtually all-human emotion”. (Pp. 305).        While some people learn that they have a serious illness in the course of a routine exam, more often the process begins with an ominous or persistent symptom such as unexplained pain, fatigue, cough, lump, bleeding, and so on. Some try to deny the potential seriousness of the symptom and hope it will go away, while others seek help immediately. In either case, diagnosis nearly always includes extensive testing and consultations, sometimes surgery, and waiting with fear and hope.            According to the journal of Psychiatric American (2000), terminal illness may also have a tremendous impact on the roles people play in their family. A person whose main role is resourcefulness or problem solving may find him or her unable to deal effectively with the situation. A person, who has always been dependent, may suddenly be called on to take charge of enormous responsibilities and momentous decisions. To some extent, the patient must become more dependent, an especially difficult role for those who are accustomed to independence.            For most people, it is not easy to be ill, especially terminally ill. The illness itself brings new and formidable challenges to life. While some old problems or issues that once seemed important fall away, other problems or issues that seemed unimportant or forgotten may reemerge. Among the more common problems at this stage of life are feelings of grief, loneliness, depression, anger, anxiety, and spiritual distress – any or all of which may be unrecognized by providers.            According to Buckman (1999), some people may experience recovery from their disease and thus deal with the psychological, social, physical, spiritual, and financial after-effects of a disease. Other individuals encounter a final, or terminal phase of illness when death is no longer just possible, but inevitable. At this time medical goals change from curing illness or prolonging life to providing comfort and focusing on palliative care. The tasks during this final phase reflect this transition and often focus on spiritual and existential (Pp.309).            While there is no universal pattern of stages or responses that every person goes through in the process of dying, there are many commonalities. Not all of these occur in every person, nor do they occur in any particular order. These are simply some of the ways many people go through or respond to terminal illness. Death is an unknown frontier that we probably will never be able to explore. Its mystery and finality strike fear in the hearts of some and sadness in the hearts of others. One of the hardest things to deal with outside of dealing with one’s own death is the death of a sick loved one.This is especially true when a loved one passes due to a terminal illness. Watching declining health makes dealing with terminal illness difficult. What is important to realize is that the family member is going to die and that it is important to make their passing as peaceful as possible. In order to effectively help a loved one on their way, good financial, emotional, and legal planning is necessary. As a clinician, there are several ways you can help a terminally ill client is by providing Grief therapy, Solution Focus brief therapy, Behavioral Cognitive therapy, Family therapy and also Bereavement therapy. According to Dole (1999), the most common problematic response to terminal illness is a mix of anxiety and depression, and the underlying process is grief. Grief is the normal response to loss, and we lose a lot when we die. Among the common losses are physical health, the illusion of security and living indefinitely, loved ones, comfortable roles in life, independence and control, the future, and more. (Note, however, that while physical health is lost, there are other and ultimately more important forms of health, spiritual, for example.) The grief of family members and other survivors are playing a major role in the equation. (Pp.115).

Social & Background information:

             The names used in this paper are all aliases. This is a case on Mrs. Cathy Giganti a 34 years old white female who currently resides at 1343 NW 98 terrace, Sunrise, Florida. She is living with her husband and her two children. University of Miami Jackson Memorial Hospital referred her case to Vitas Innovative Hospice Care. Mrs. Giganti moved from Philadelphia Pen Sylvania 30 years ago with her parents. Mrs. Giganti is a white female, who married her High School sweet heart Tom Giganti on December 1998. The couple has two children, eight-year old, Tom Jr. and two-year old, Carina. Cathy was born in Philadelphia Pen Sylvania on October twenty, nineteen-seventy one. She is the daughter of David and Katherine Rozony. Her family’s religion is Roman Catholicism. Cathy is the youngest of four siblings. She has a sister named Joan and two brothers, Miky and Gene. Cathy’s father passed away in 1978, just two years after the family moved to South Florida. Cathy is very closed to her family; she maintains contact through frequent telephone calls and regular visits. Her families always meet on special holidays and on birthdays. Her main support comes from her family and her husband.            Based on information provided by Cathy, her mother frequently complained during her pregnancy that she did not feel well. She always believed something was wrong about the baby. She felt throughout the pregnancy that something was abnormal. After discussing her concerns with her doctor, her complaint was dismissed, as the doctor cited that she was being overly nervous about the upcoming baby. When Cathy was born, she was a healthy normal baby girl named Cathy Patricia Ronzony. Her family ethnicity is Italian.

Educations History:

   Cathy attended St Gregory Catholic School in Plantation Florida. She was later transferred to St Thomas High School in Fort Lauderdale. In her senior year, she received a full academic scholarship from University of Miami. She was enrolled there, and she stayed at the University’s dormitory. In her junior year, Cathy was experiencing some discomforts and had severe body ache. Her mother came and went back home with her. Cathy came back to school and graduated; she has a bachelor degree in Communication.Medical & Physical History:At the age of nineteen, Cathy was diagnosed with of Ewing Sarcoma. She had surgery and immediately she underwent Chemotherapy and Radiotherapy. After three months, the cancer was in emission. For Cathy’s family, things could not be better. She got married, and the marriage produced two children. Every thing seemed to have been falling into the place. She had a bright future in front of her. On June 2004, just days after she gave birth to her daughter, she started to experience some discomforts in her right knee. The discomfort gradually turned into some excruciated pain. She went to her doctor, who ran some tests on her. The results were worst than expected. She was diagnosed with OsteoSarcoma.Cathy and her family were devastated. She immediately underwent surgery. Doctors tried to remove the cancer, but they could not. It was already too deep into the femur bone. They removed most of it, and later tried Radiotherapy and Chemotherapy. To some degree, the pain was alleviated. Somehow, she could tolerate the pain. Cathy’s Ewing’s Sarcoma cancer was in emission for more than ten years. OsteoSarcoma is a vicious cancer. Often, it is the result of Ewing Sarcoma. Cathy stated, “The doctors explained to me that because I was diagnosed with Ewing Sarcoma and treated with Chemotherapy and Radiotherapy, the doctors knew that there was in eighty percent chance the cancer would be back. They were simply making a human and a scientific decision. I was only nineteen, and going under Chemo and Radiotherapy was the only way to extend my life.”              At this instant the cancer is taking over her life. She is in severe pain all the times. Even though she is on heavy narcotic pain medications, she cannot sit for a long period of time. She cannot lie down either. She is using a wheelchair and has a nurse around the clock to monitor her medications. She is currently taking medications such as: Neurontin 600 mg three time a day, thorazin 10mg for hiccup, as needed. She is also taking Koanopin 0.5 mg three time a day, elavil 200 mg at bedtime, crestor 10 mg daily, Actonel 45 mg daily, MS contin 200 mg every 12 hr, Fentanyl patch 200 mg every 72 hr, Fioricet as needed for headache, Dilaudid 40 mg every two hr for breakthrough pain and Milk of Magnesia as needed.Although all of these drugs have side effects, Cathy does not have any reaction from none of them. Her pain level is between eight and ten. Cathy’s extremities have multiple scars; her entire back has indistinguishable landmarks because of her surgeries and grafts of her knees. There are no deep wounds, but they are extensive, covering probably one half to two-third of her back.

Financial History:

             Due to medical problems, Cathy is unable to work. She is receiving $400.00 from disability. Right after her graduation from UM, Cathy used to work for AT&T in the communication department as assistant management. Her husband is working for a Development Firm as an architect. His salary is the main source of income for the family. According to Cathy, her husband salary is just enough to meet the obligations around the house. Sometimes her family helps by providing groceries and clothings for the kids.Past Psychiatric History:None, past or present psychiatric admissions were denied by Mrs. Giganti.History of Substance Use:Cathy denied of using any Substance rather than her narcotic pain medications.Mental Status Observations: As specified in Cathy’s case file: her motor activity is within normal limits. Her speech is appropriate- directed and fluent—with no indication of cognitive deficits. Her mood is in the normal range, though process is organized. No delusional content is observed and no support of obsession is noted. Cathy denied any suicidal thought, or intent. Insight/ Judgment is excellent.DSM-IV Multi-axial Evaluation:Axis I      V71.09   No Diagnosis or ConditionAxis II     V71.09   No DiagnosisAxis III    198.5     OsteoSarcoma, bone cancer Axis IV                 Unemployment                              Under some stress such as physical condition                              Economic problems (living on a fixed income)Axis V      GAF-45Case Formulation:              Cathy is suffered with OsteoSarcoma. It is a condition in which malignant cancer cells are found in the bone. It is the most common type of Bone Cancer. Children tend to commonly have this cancer, which usually occurs in the bones around the knee. The most common occurrences of Osteosarcoma are in adolescents and young adults. Other type of Bone cancer is Ewing ’s sarcoma (different shaped cancer cells). Unfortunately Cathy was previously diagnosed with Ewing’s Sarcoma when she was nineteen. The cancer was detected early. She had surgery and underwent chemotherapy and radiotherapy. Miraculously, the cancer was in emission. She had a normal healthy life for a period of ten years. According to Cathy, she thought the cancer would return after receiving treatment for Ewing’s Sarcoma, a team of oncologists informed her family that there is a greater chance down the road in the future that the cancer might return to another type of bone cancer. Since Cathy was very young, the doctors seized the opportunity to extend her life’s span by treating her with chemotherapy and radiotherapy simultaneously. That was a very aggressive treatment, which was necessary to save her life. The doctors had full knowledge that this type of cancer would reappear in a different form, one-way or the other.Cathy tries to live her life one day at the time; at the same time she is very scared and furious, knowing her children could be motherless at any moment; she always mentioned to me that she is not afraid to die, but she is frightened for her children, especially for her tow- year- old daughter Carina. Cathy (Giganti C. Personal Communication July 30, 2006). Cathy is receiving hospice care at her own home from Vitas Innovation Hospice Care. Right now Cathy is going through the grieving process. Her husband is an instrumental griever. Whenever I come to the house, he always keeps himself busy and avoided to talk about his wife. The twelve-year-old, Tom Jr., is very angry about the situation, and tried to ignore what is going wrong with his mother.  The whole family is grieving, except Carina, the two-year-old because she does not understand what is going on with her mother. Right at this moment, Cathy is in extreme physical pain due to her cancer. Recently the doctor increased her pain medication, morphine 800 mg every time she needs it. Some time she takes it every twenty minutes. It is a matter of time for her heart to give up, according to the doctor. Cathy stated,  “The only reason I am still alive is because I am young. My heart is strong, and I have a strong will to live for my children.”As a professional clinician, I tried very hard not to breakdown in front of her. I explained to her that I am here to provide support for her and her family; and I will be there for Bereavement therapy if they need it. I also mentioned to her that I would like to provide some kind of therapy for her as well as her family, especially her son, Tom Jr. in order to smooth the grieving process and get the family ready for the ultimate outcome. Cathy stated that she understands that her terminal illness is affecting her son Tom Jr., and she believes that therapy will help the gloomy process. Tom Jr. does not know how to manage emotional issues effectively or how to deal with the grieving process. Coping skills, which includes Cognitive Behavioral therapy, Solution Focus Brief therapy and Grief therapy can be used with this family, especially with Tom Jr. I believe Family System Theory can play a major role and would benefit this family immensely. One cannot see Cathy without thinking about her children and her husband.Explanatory Theory /Evidenced Based InterventionsThe explanatory theories chosen for the conceptualization of terminal illness are Grief Therapy/ Family System Theory, and Cognitive Behavioral Theory. In Grief therapy, there are several different therapeutic perspectives that deal with a terminal ill family member during the grieving process. The most imperative aspect of this process is that the family has to understand that grief is an inevitable and normal part of terminal illness. They should do among other things:

  • Recognize and express the losses inherent in terminal illness.
  • Explore the losses and their meaning.
  • Work to resolve conflicts and relationships.
  • Accept that some conflicts and relationships cannot be resolved.
  • Explore what is possible for the future.

 According to Fallowfied, Jenking & Beveridge (2002), grief is the most common problematic response to terminal illness. It is a mixture of anxiety and depression, and the underlying process is grief. Grief is the normal response to loss, and we lose a lot when we die. Among the common losses are physical health, the illusion of security and living indefinitely, loved ones, comfortable roles in life, independence and control, the future, and more. (Note, however, that while physical health is lost, there are other and ultimately more important forms of health, spiritual). (Pp. 297-298).Massie & Holland (1999) stated, “There are a number of theories of grief and most include some variation on typical stages. In general, the stages include (1) shock and attempts to avoid the pain, (2) a period of disequilibrium in which the above manifestations are prominent; and (3) in most cases, a period of readjustment. Stages are a way of helping us understand complex concepts. Few people go through these or other stages in life in a very quick fashion. Most people bounce around from stage to stage or spend most of the time in a particular stage; and few people manifest stages exactly as they are set out.” (Pp. 99-101).This explanatory theory would benefit this family. Helping in the process of grief includes understanding the nature and manifestations of grief. Grief is normal for everyone involved in a terminal illness. Indeed, a sign that a particular person may have difficulty with grief is for that person to deny all feelings of sadness, anger, etc.         The explanatory Family System Theory would play a major role by working with terminal illness family, by sharing their emotional feelings among each other. Grief Therapy and Family System Theory are linked together. The concept of “family” reflects an implicit attempt to bring all sanguineous relative together to share a common destiny in life, for good or for bad. In addition, family is a system that works together whenever the family is in a crisis situation. The members close rank in order to give help to one another. From my understanding, this is the way this system works.                      To elaborate on family system, Bradshaw (1998) also spoke of family system in simple terms. He used such terms as: wholeness, relationships, family roles, and family rules. The first principle of systems is the system of wholeness. The whole is greater than the sum of its parts. This means that the element added together do not produce the system. The system results for the interaction for the elements.  Without the family interaction, there is no family system (Pp. 28).  Therefore, understanding the wholeness of the family will help to work effectively with Cathy’s family.            According to Kirst-Ashman ad Hull (2001), the family remains a significant force in people’s lives. Family relationships are intimated and complex. In some ways, working with families in social work practice is different than working with individuals, other groups, or larger system. Working with families is often considered to lie somewhere on a continuum between micro and mezzo practice (p.298).I do believe working with this family as a whole with help Cathy’s husband Tom greatly, that would help him to let his anger or his fear of loosing his wife. Tom is an instrumental griever. He always avoids talking about Cathy’s condition. Every time I come to the house, he always busy doing something. He would point to his wife and state, “I am busy with the pool. Talk to Tom Jr. and Cathy. I can’t talk to you, right now. Have a nice day.”  I also believed Cognitive Behavior Therapy would be a great benefit. Turner (1996) In Cognitive Behavioral Theory, fears associated with Grief develop through classical conditioning, i.e. an unconditioned stimulus produces an unconditioned response, which become associated with a conditioned stimulus. These new classical, condition fears are maintained through operant conditioning. (Pp. 203-204).Cognitive Behavioral Therapy (CBT) is a form of psychotherapy that emphasizes the important role of thinking in how we feel and what we do.  Cognitive-behavioral therapist teaches that when our brains are healthy, it is our thinking that causes us to feel and act the way we do.  Therefore, if we are experiencing unwanted feelings and behaviors, it is important to identify the thinking that is causing the feelings / behaviors and to learn how to replace this thinking with thoughts that lead to more desirable reactions.  Horwin (2006)Turner (1996) claims that in essence cognitive theory explains that thoughts do not cause emotions, alterations in cognition do. An individual may have cognitive distortions or automatic thoughts, which make up a particular cognitive schema. Cognitive therapy can last from six to twelve sessions and is and active and problem focused process. Later Turner (200) indicates that the therapist identifies dysfunctional thoughts and underlying schema and then tests these automatic thoughts for validity. The therapist at time challenges these thoughts the individual has another role the therapists has with the particular therapy is to assign the individual home work to work on between sessions. (Pp. 359-378)

Clinical Conclusion/Intervention Plan

 The intervention on CBT is based on the formulation that the therapist will be able to implement therapy or intervention techniques appropriate to the presenting problem and to psychological, emotional, and social circumstances of the client. For example Cathy’s family has a lot of anger because of the terminal illness. The family is fully aware that it is a matter of moment that Cathy, the loving wife, the caring mother, the daughter and the sister can die from the disease. According to Worwing (2006), anger is a reaction to fear/threat or anxiety and is thus considered by some as a “secondary” emotion. There is much threat and anxiety in terminal illness, and so anger is not uncommon. Often the anger is displaced to loved ones (and sometimes anger toward this is right on-target). God also receives a share of anger. Anger may be directly expressed with aggressive words or behavior; or indirectly expressed through passive-aggressive behavior, faultfinding, or as noted above, depression. Some anger may be reasonable and adaptive. However, a consistent pattern of anger that has a negative impact on relationships and functioning in life is neither reasonable nor adaptive. A pattern of anger indicates that the problem is within the person who is angry. Unfortunately, it is virtually impossible for most people to recognize this within themselves – the anger is always so justified.Intervention (CBT) would clarify for the family that the function of a consistent pattern of anger is to drive each other away. Anger thus reinforces itself through creating isolation and loneliness, which in turn promotes fear and anxiety, and thus produces more anger.

Problem description

 Cathy is suffering from OsteoSarcoma. It is a condition in which malignant cancer cells are found in the bone. It is the most common type of Bone Cancer. Children tend to commonly have this cancer, which usually occurs in the bones around the knees. Cathy is receiving hospice care at her own home from Vitas Innovation Hospice Care. Right now Cathy is going through the grieving process. Her husband is an instrumental griever. Whenever I come to the house, he always keeps himself busy and avoids talking about his wife. The twelve-year-old, Tom Jr., is very angry about the situation, and tries to ignore what is going wrong with his mother.  The whole family is now grieving. Cathy is in extreme physical pain due to her cancer.Short term Goals: the family will identify the negative attitude toward the acceptance of the reality that often keeps them from talking to each other.Objectives: 1) the family will identify and share four mistakes that make them angry to each other. 2) The family will identify and share three negative things that keep them from talking to each other. 3) The family will identify sources of ongoing positive communication. 4) Family will develop a written contract post care plan that will support long-term communication.Treatment Intervention: the therapy will help the family to focus on grief management process and increase their communication level. The therapist will also ask for the family to write a journal by using the family album, and write about the good time and the memories they have between each other. Tom Jr. will have to enroll in Soccer at Sunrise Athletic Team. Tom Sr. will have to work out three times a week at the Sunrise Gym Club. Cathy will meditate every time she feels depress.  Tom Jr. will spend time with his peers in the neighborhood. Family will educate further more about terminal illness in order to have a better understanding about Cathy’s condition.Long term Goals:  1) Understand the nature and function of anger.2) Understand one’s own response to anger. 3) Accept that some anger is inevitable in terminal illness. 4) Help or allow the verbal expression of anger. 5) Help identify and deal with the underlying feelings or issues behind anger, e.g., helplessness, fear, and loss of control. 6) Understand that anger is sometimes justified and appropriate 7) improve quality of life by telling each other how much the family means to each other.Process recording   (entering to Cathy ‘s house)Cathy:  I am so glad you stop by.Worker:  Hi, how are you this morning?Cathy: I did not sleep last night.Worker: What was wrong, the pain was too severe last night?Cathy: Yes, you can blame that on the pain.Worker: Cathy, do you want me to call the doctor or the nurse and report how severe your pain become?Cathy: No, it is not only that I am so scared about my kids and my husband. I’m also scared of the fact that I can be gone at any moment. You know I can feel it. I will not be here for long. My son hates me because I am leaving him soon. I am in so much pain. I am hiding it. I don’t know how long I can keep my face like this, as if nothing is wrong.Worker: You are trying to protect your family. I want you to know that it is okay. You are a mother. It is perfectly normal you have a mother instinct. Your first reaction is to protect your loved ones. I understand this is hard for you. Maybe we can work on developing some skills that you can use when you feel depress like this. Instead of crying, we need to work on coping skill, and accept the fact that you have a terminal illness.Cathy: You know that I did not sleep last night. I’m tired.Worker: Of course I do understand. Before I leave, I will give you a relaxation technique that you can use when you feel down, which is very helpful. You can use it until we meet tomorrow.

Legal /ethical Consideration:

 As professional social workers we are required by the code of Ethics to increase our professional knowledge and skills to be of utmost to our clients. In order to work with clients effectively, the social workers should have a clear understanding about the clients’ cultures, belief, and background. As professional social workers, we should always be on the same level with our clients. Due to the complicated and multidimensional nature of grief or loss, there are numerous research studies that address several types of theories. As clinicians, it is our duty to have knowledge on the research and individualize the theories that fit our specific clients.  Our ultimate goal is to promote the welfare of our clients. References:American Psychiatric Association (2000) Diagnostic and Statistical Manual (4th ed., text revision). Washington DC: Author.Barsevick, A.M. & Much, J.K. (2004). Depression. In C.H. Yarbro, M.H. Frogge, & M. Goodman, Cancer Symptom Management (3rd Ed.) Boston: Jones and BartlettBradshaw, J. (1998). A Revolutionary Way of Self-Discovery. The Family Hodge, D. R. (in press). Spiritual assessment: A Review of major qualitative MethodsBukman, I. (1999). Dying Well: Peace and Possibilities at the End of Life. New York: Riverhead Books.Fallowfield, L.J., Jenkins, V.A., & Beveridge, H.A. (2002). Truth may hurt but deceit hurts more: Communication in palliative care. Palliative Medicine, Kirst-Ashman K and Hull G. (2002) Understanding Generalist Practice: Brook/Cole Publishing Inc.Massie, M.J. and Holland, J.C. (1999). The cancer patient with pain: Psychiatric complications and their management. Journal of Pain and Symptom ManagementWorwin E. (2006). A Perspective on Cognitive Behavioral Theory:  Publish by University of Michigan Press.Turner, F. (1996). (2000) The skill of helping individuals, families, groups, and communities (4th ed.) Itasca, IL: F.E. Peacock Publishers. Running head:Note: Maryse Isma is the executive director of the Center For Strategic and Multicultural Studies.

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