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© 2002 AlphaMed Press
THE SCHWARTZ CENTER ROUNDS |
Between Parent and Child: Negotiating Cancer Treatment in Adolescents
Department of Medicine, Division of Hematology-Oncology, Massachusetts General Hospital, Boston, Massachusetts, USA
Correspondence: Richard T. Penson, M.R.C.P., M.D., Instructor in Medicine, Hematology-Oncology, Cox 548, 100 Blossom Street, Boston, Massachusetts 02114-2617, USA. Telephone: 617-726-5867; Fax: 617-724-6898; e-mail: rpenson{at}partners.org
LEARNING OBJECTIVES
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Learning Objectives
Abstract
Presentation
Dialogue
Discussion
Conclusion
References
After completing this course, the reader will be able to:
Access and take the CME test online and receive one hour of AMA PRA category 1 credit in Risk Management at CME.TheOncologist.com
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ABSTRACT |
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Shortly before his death in 1995, Kenneth B. Schwartz, a cancer patient at Massachusetts General Hospital, founded the Kenneth B. Schwartz Center. The Schwartz Center is a non-profit organization dedicated to supporting and advancing compassionate health care delivery, which provides hope to the patient, support to caregivers, and sustenance to the healing process. The center sponsors the Schwartz Center Rounds, a monthly multidisciplinary forum where caregivers reflect on important psychosocial issues faced by patients, their families, and their caregivers, and gain insight and support from fellow staff members.
Cancer in adolescents presents an extra dynamic of psychosocial complexity. The case of a 19-year-old woman with acute myelocytic leukemia is discussed. Her disease was refractory to allogeneic transplantation, and she died with severe graft-versus-host disease. Ms. P and her mother established very different relationships with the team which supported them through the transitions in her care, and Ms. P was able to die at home, with hospice care. The personal connection with the team enabled a degree of positive adjustment through the nightmare of loss. The epidemiology of cancer in adolescents and paradigms of care are reviewed. Psychosocial aspects of adolescence, opportunities for personal growth and support, and the challenge of end-of-life care are discussed.
Key Words. Leukemia • Hospice • Cancer • Psychosocial • Communication
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PRESENTATION |
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Ms. P is a 19-year-old white female college student who presented with leukopenia and was found to have acute myelocytic leukemia (AML) in her bone marrow. The AML was refractory to induction therapy with cytosine arabinoside/ daunorubicin and mitoxantrone/etoposide, and she was subsequently admitted for busulfan and cyclophosphamide with an allogeneic bone marrow transplantation from her HLA single antigen mismatched donor mother. She developed pleuritic chest pain with intermittent fevers, and a computerized tomography scan demonstrated a 1.5 cm spiculated nodule in a left upper lobe segment. Thoracoscopic resection revealed organizing pneumonitis, and she was treated for suspected Aspergillus infection.
Transplantation was complicated by Lactobacillus bacteremia, hemorrhagic cystitis, and vaginal bleeding requiring high-dose megastrol acetate and severe mucositis treated with continuous infusion morphine sulfate. Bone marrow aspiration and biopsy revealed active trilineage hematopoiesis, orderly erythroid, and myeloid maturation and no evidence of leukemia.
Following engraftment, the patient developed diarrhea refractory to imodium, and rectal biopsy confirmed changes consistent with graft-versus-host disease (GVHD). Steroids, octreotide, cyclosporin, and methotrexate were of limited benefit and she was started on anti-thymocyte globulin (ATG). This was complicated by hemolytic uremic syndrome (HUS), and she developed severe hypoalbuminemia, anasarca, and hepatic GVHD refractory to azathioprine and FK506. She developed gross hematuria, recurrent fever, an extensive very severe bullous rash, worsening microangiopathy and renal function, and required total parenteral nutrition (TPN).
During the multiple medical problems Ms. P became increasingly despondent, frequently expressing wishes to go home and forego any further treatment. Her mood temporarily improved with dextroamphetamine sulfate. However, after discussion with the patient and her mother regarding her poor prognosis and the limited treatment options available for treatment of her GVHD and HUS, such as methotrexate and plasma phoresis, the patient decided to go home with hospice care.
She died 5 days later.
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DIALOGUE |
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Psychiatrist: When I first met Ms. P, she had already been on the bone marrow transplantation (BMT) unit for several weeks. Although her treatment had not been going as well as she and her mother had hoped, they were still very optimistic about her prognosis. Ms. P had been a successful college student attending university at a considerable distance from home. She and her mother conveyed a sense of pride in her academic successes and her longstanding history of being among the most mature of her peers. I was asked to see Ms. P because staff had concern about adjustment and possible onset of depression.
Our sessions included just the two of us. If her mother was present, she would leave the room. Ms. P acknowledged intermittent dysphoric mood, but did not initially meet criteria for depression. Ms. P engaged eagerly and used the time with me to talk about the difficult experience of being ill. She wanted me to know who she really was: her well-accomplished, and independent self in counterpoint to the ill, dependent person I was seeing in the hospital. She was still regularly engaged with her college classmates, high school friends, and favorite teachers mostly by e-mail. She viewed herself in a somewhat parental role with her younger sibling after her parents' divorce and her father's absence. Speaking about her and her mother as a team, she worried aloud to me about the younger sibling's school performance and adjustment to her illness, wanting my expertise in how to help him.
As she became more medically symptomatic, she recognized that she was becoming depressed. She and I had a couple of conversations about starting an antidepressant, and when she decided she wanted to begin taking selective serotonin reuptake inhibitor, I made the recommendation and she was given the first dose of medication. When I came to see her the next day, her mother was present and very angry with me for starting her on medication without consulting her. I was surprised by her mother's anger. Prior to this episode, I had the impression that mother and daughter had talked about this option, and I had invited mother on many occasions either upon entering or leaving the room to ask me questions, which she had never done. To the contrary, she had reiterated that Ms. P was independent and should have a private relationship with me. However, Ms. P stopped the antidepressant with mother's encouragement.
At this juncture, Ms. P's health was very compromised. She was more angry and less engaged with me and her friends. She deeply resented her loss of privacy, citing the teams of people, especially the males, who were casually examining her back and buttocks because of the GVH skin manifestations. I continued to visit her, but she often sent me away after 5 minutes or less and would now tell her mother not to leave the room. Primarily, she spoke about her symptoms or her wish to return home where she felt she could be herself again, even if this would be only for a very short time.
Social Worker: I first met Ms. P and her mother when she was admitted to the BMT unit. Ms. P didn't really want to talk with me alone, so many of my "sessions" were with the mother and daughter together. Both had related what they had found helpful at the previous hospital, and it became evident that Ms. P would rely on the nurses for her physical and emotional support. Both mom and daughter struck me as being well defended, proud, and private. They used humor to help them cope, and they approached Ms. P's illness as "We are in this together." At the same time, I was struck by how Ms. P's mom deferred to her. Many parents of adolescents seem to jump right in and speak "for the patient," but she had a real respect for her daughter's opinion and worked hard to not "step into" her space or her relationship with her care-providers.
One of the main issues that developed in taking care of this family was balancing the patient's need to know and be in control, and the decisions she and her mother needed to make along the way. One of the first issues that highlighted this was a problem with insurance. Her mother chose at that point to keep some information from Ms. P. She didn't want her worrying about it. This was appropriate at the time, because it was clear that Ms. P needed the transplant, and who paid for it was not an issue with which Ms. P had to wrestle. However, as Ms. P became sicker and needed more medications, the delicate balance between mother and daughter was unsettled. Ms. P had been able to communicate the changes in treatment and medications to her mother as the team of doctors often rounded early in the morning and her mother was usually there in the afternoons when the team rounded again. I think her mother felt increasingly isolated as Ms. P started withdrawing and not asking, or not being able to ask questions of the team. It was often during my conversations in the hallway that her mother would vent and I began to see that her role was becoming unclear to her. I supported her in talking with the team separately if she felt she couldn't ask questions in front of her daughter. As with many families, family members can have a hard time asking difficult questions regarding prognosis. Yet her dilemma was that she didn't want to keep secrets from her daughter.
Ward Nurse: I was not the initial primary nurse for this patient. I cared for her many times, but was the associate nurse. I had a good working relationship with her and also her mother. The first primary nurse had conflicts with the patient and her mom, which centered on control issues. The patient decided along with her mom that she did not want this nurse to care for her any more and wanted me to be the primary nurse. Ms. P and her mom asked the social worker how to deal with this situation, and the social worker spoke with the nurse manager, who spoke with the first primary nurse and she was "taken off the case." All very difficult!
As a staff nurse, in this situation one walks a fine line, acknowledging the patient's wishes and balancing them with your commitment to the other members of the team. I wanted to maintain a constructive working relationship with the other nurse. This situation did work itself out with the support of the nurse manager and social worker. We were able to maintain a good relationship and there was also a lot of discussion about why Ms. P made this decision. Was it because of anger, which she took out on this nurse? When I met Ms. P, there was an immediate strong connection. It was very easy to work with her and her mom. Ms. P was bright and articulate. We enjoyed each other's company and had many common interests, such as music and a radio talk show: "Dr. Laura" that she listened to every day. She wanted to maintain her independence and control of her routines. I was impressed at how a 19-year-old dealt with her disease and treatment in such a "head-on" way. She tried to maintain a positive attitude despite the pitfalls. Initially she would write in her journal each day and sign each entry—"I.W.S.L." This stood for "I will survive leukemia." But as she became sicker she became more depressed and withdrawn. It was at this time that the staff felt that she needed an antidepressant. This issue was a struggle for her mom. Mom did not want her taking any antidepressants, but Ms. P said that she would try the antidepressant. It was difficult, and became increasingly harder, to balance the needs of Ms. P and Mom.
There was one experience that I had with Ms. P that really helped forge the trust in the relationship. One weekend day, Ms. P had a strong desire to take a tub bath. She had been very withdrawn that week but this particular day the only thing she wanted was to sit in a hot tub. She was still in the BMT room, neutropenic, minimal strength, numerous i.v.'s, antibiotics, etc. I knew that this request would not be an easy one to fulfill. How and where would I find a tub and how would she get in and out of the tub? But my instinct told me to try to give her this wish. I knew that this would be one of her last wishes. I called over to the labor and delivery unit. They told me that there was an empty room with a Jacuzzi bath available that she could use. Ms. P was so excited. So, along with her mom, I packed her up and we went over to the unit. With lots of assistance, Ms. P was able to get into the hot tub! She was so delighted and said that this was "absolutely glorious." She sat in the tub for at least an hour. This encounter was one of the most positive experiences for this patient during her transplant. This certainly strengthened our relationship and probably helped with the second experience...
The second notable experience occurred when she was told that the treatment for her GVHD was not working and there was no other option. She was going to die. This was an extremely difficult discussion for Ms. P and the team. Ms. P was devastated. She pulled the covers up over her head and did not want to speak to anyone. I told her before I left the room to let me know if or when she wanted to talk. Several hours later her mom came to get me and said that Ms. P wanted to talk only with me. I went into the room. There were just the two of us. Through our tears we talked, for well over an hour. She asked many questions. One question was, "What would you do if it was you?" She desperately needed help to make this decision. Should she "give up" and go home with hospice? We talked about how this was not fair for a 19-year-old, what it would be like to die, what it would be like to be in heaven, how she would be an angel. I also told her that she was very courageous and had taught me about the true meaning of strength.
She asked me to infuse the entire syringe of morphine in her PCA (Patient Controlled Analgesia) before I left the room. She almost panicked, "Let's get it over with, now! Please do it! I am begging you!" I told her that I would not do that, but I would keep her comfortable and help her through this awful situation. I would be there for her and support her, whatever decision she made. Ms. P made her own decision to go home with hospice, and this was arranged the next day.
Oncologist: Ms. P was a really delightful person. As ever when treatment fails someone so young, it is devastating. We felt that we had to be honest with her about her prospects and took time on the evening round to explain the situation, poor prognosis and vanishing options. She took it horribly. She pulled the sheets over her head and just asked us to leave. We felt terrible. But we were fully supportive of her wishes and managed, against all the odds, to get her home.
Palliative Care Clinical Nurse Specialist: I had heard about Ms. P from the floor nurses at Palliative Care Rounds. They were sad that her GVHD was worsening and she was dying. I was asked to get involved the day the oncologist told her that it could not be stopped and that cure was no longer possible. At 11 a.m. I was paged by her nurse to discuss home care supports with Ms. P and her family. I went into the room to discuss hospice versus home health support. Ms. P, her mother, and uncle all asked appropriate questions about the difference between the philosophies of the two types of care. We discussed the simplification of medications, the change of sterile technique for procedures to clean technique. Although she was matter of fact, Ms. P was clearly struggling with the transition from acute high technological care to home care. Ms. P then brought up two important concerns: her desire to be bathed at home and whether she could be an organ donor. We discussed both issues.
In the next 3 hours, I arranged hospice care. It was a new situation for the hospice had never participated in the transfer of an ICU patient directly to home care. I prepared them for the transition, orientating them to the care Ms. P had received, why there was such an abrupt change in goal, and outlining how the family was doing emotionally. In addition, I made arrangements for equipment including a hospital bed, a mattress, a commode, a wheelchair, and a morphine pump.
In the meantime, many nurses and health care providers went in to say goodbye to Ms. P and her family. At 4:30 p.m. that same day, Ms. P left for home via ambulance, accompanied by the floor nurse caring for her that day. It was an emotional transition for the staff, the patient, and the family.
Psychiatrist: When it was arranged for her to return home with hospice, she and I had a last session alone. I asked her how she was feeling emotionally. Initially she was angry with me for asking, rolled away from me and responded, "How should I feel about dying?" I told her I did not want to assume I knew what it was like for her, and wanted to be sure that if she wanted to talk about her thoughts or fears, I wanted to hear what she was thinking and feeling. She rolled back toward me and began to talk about the fear of dying in pain. She told me she had discussed this with her oncologist and believed her pain would be managed well at home. She then talked about her regrets, about all the things she had hoped to do in her life: graduate from college, have a career, and marry. I told her I appreciated having gotten to know her, especially hearing about all the experiences and accomplishments that preceded her hospitalization. I told her I admired her commitment to maintaining her identity in spite of all the challenges of her illness and treatment, and that I thought she had done a really good job. We exchanged a warm goodbye. Her mother was waiting outside the room when I left. She had a glass of ice water in her hand, and chewed ice to contain her affect. I said how pleased I was for Ms. P that she was getting to return home as she wished, and how sorry I was that she was returning home without the hoped for BMT success. She said a quick goodbye, which ended my interaction with the family.
Ms. P highlights the challenge for the adolescent or young adult who has just begun to consolidate independence from her parent, when a serious illness robs her of the independence so key to her sense of self-worth. Illness challenges every patient's sense of identity. For the adolescent, who is developmentally in the phase of life when identity formation is occurring, it is particularly difficult. As with all patients, Ms. P's experience of her illness and treatment was colored by the experiences that had shaped her prior to the illness. A cornerstone of her self-esteem was her maturity and independence, partially a function of her father's absence and her mother's reliance on her. She and her mother entered the illness trying to preserve their previous relationship, which was based on uncommon mother-daughter equality. As Ms. P became more ill, it became increasingly difficult to maintain this relationship, and her mother became more of the decision-maker as Ms. P became less hopeful and more withdrawn. When I only spoke with Ms. P about starting an antidepressant, and not with her mother, I did not recognize that the mother's role had shifted. Prior to that intervention, mother had greeted me with warmth as a welcome member of the team. After the antidepressant had been started and stopped, though I tried to engage mother and daughter in a discussion of the role of antidepressants in depression caused by severe medical illness, I had ruptured the tenuous alliance I had with the mother and never regained it. I felt fortunate that the mother had a strong alliance with the social worker. I believe an antidepressant may have improved some of Ms. P's dysphoria, hopelessness, and sleeplessness, so I regret that she did not have a full trial of the medication. She did utilize a stimulant with limited benefit.
Patients of any age may or may not come to a sense of peace about impending death. My goal with Ms. P was to validate her personhood (respecting the image she had of her best self) and to give her an opportunity to explore her thoughts, feelings, and explicitly articulate worries about her treatment, palliation, death, and after death. Ideally, I would hope that this invitation could assist her in coming to a place of more comfort about her impending death. But my primary goal was to be sure that if she wanted to talk about death, dying, and her vision of what follows death, that she would not suffer feeling abandoned because it was too hard for others to hear what she might want to say.
Social Worker: As with many patients, Ms. P's treatment was long and her course rocky. The decision that Ms. P should go home with hospice seemed to happen very fast. Once she decided, the team mobilized to make that happen as fast as possible. One of my concerns was that her mother had done none of the personal care taking of Ms. P while she had been a patient. I recommended that she hire private duty nurses to supplement the hospice services. I remember my conversation with her outside the door to Ms. P's room on her last day at the hospital. It was one of the few times I saw her cry. She eloquently talked of the incredible gift her daughter was and how they as family, she, her daughter, and her son had traveled and tried to live life to the fullest before Ms. P ever became a "cancer patient."
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DISCUSSION |
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Adolescence is a time for separation from parents and new identity formation, physically and mentally, seeking acceptance from peers as opposed to parents, fearing both the loss of childhood and the entry to the adult world. Adolescents often challenge authority, especially parental authority and values, as a way of achieving a sense of greater independence. This transition from being a more obedient and deferential child to a more independent, autonomous teenager has been challenging to adults for centuries. Plato, quoting Socrates in the 5th Century B.C., wrote, "Our youth love luxury; they have bad manners, contempt for authority, they show disrespect for elders and love chatter in place of exercise." Many experts would agree with the Ancient Greeks about the role of a teenager, yet there are more positive advocates. Piaget, the renowned developmental psychologist, wrote about the adolescent as a "philosopher who ponders his place in the world and struggles with his attempt to make sense of life" [1]. Psychoanalysts such as Freud and Erikson characterize adolescents as ascetic, introspective, and idealistic individuals, while many see adolescents with the world as their oyster and standing at the threshold of their future. Positive or negative, this period of life is crucial to cognitive and social development into adulthood.
Adolescence is characterized by struggles over independence and intimacy. The resolution of these conflicts occurs in the context of rapid changes in physical, mental, and social aspects of life [2]. During this time a child begins to develop a sexual identity, becomes more autonomous from parents and dependent on their peers, establishes self-image, and begins to make career plans for the future. Growing from childhood to adulthood is bewildering, and fears and failings are hard to admit and to confront. At this juncture, it is important for the adolescent patient to have people with whom he or she can talk openly, who make the effort to understand her issues and conflicts and who will take the time to listen and engender trust [3].
Adolescence is a very stressful and confusing time and cancer seriously challenges an adolescent's growing independence, accelerating, or derailing "coming of age." Cancer particularly challenges an adolescent's sense of self-esteem, leading to feelings of loss of control at a time when self-image is pivotal to normal development, while straining relationships with peers and family. Sexual development may be affected. Career goals may be put on hold or dashed [4].
Of note however, is that Ms. P was not a defiant teen, and she and her mother had maintained a closeness and sense of shared values through her transition into late adolescence. This case is illustrative of the challenges of specific developmental transitions and the stress that illness precipitates in family relationships.
Epidemiology of Cancer in Adolescents
Above the age of 10, there is an incremental increase in cancer incidence every 5 years with the annual incidence of cancer being 3.5 per 10,000 in children aged 15-19 years [4]. Nervous system tumors and leukemia are more predominant in the 10-14 age group while during the later stages of adolescence, lymphomas are the commonest tumors and the incidence of epithelial cancer increases. The incidence of cancer in females eclipses that of males in the 20s, primarily due to thyroid cancer, cervical and ovarian carcinoma, and an excess of malignant melanoma [4].
Paradigms of Care
In the last 40 years, survival rates for adolescents with cancer have continuously improved [5]. Most children are treated in major academic centers and many are treated on clinical trials. However, a significant minority of adolescents may be treated locally by oncologists with limited data suggesting that they risk being over-treated [4]. Generally, the centralization of care has lead to better outcomes [6]. Specialist centers are also better equipped to handle the particular needs of an adolescent with cancer.
Ms. P was treated on an adult medical unit. At the onset of her inpatient treatment, she was functioning as an autonomous adult. While her mother was present during the presentation of options for medical treatment, Ms. P clearly functioned as an independent decision-maker and consented to her treatment plan. As Ms. P became sicker, she began to function more like a teenager, deferring to her mother on treatment decisions. Only a minor regression on her part returned her to this dependent status. Pediatric units routinely work with parents and older children, presenting medical information to both, but looking to parents to be the final decision-makers with the child's consent or assent to the treatment plan. The normal fluctuation between autonomous decision-maker and dependent child makes treatment of the older adolescent or young adult challenging, whether on a pediatric unit or an adult unit. Adult unit staff may feel particularly uncomfortable taking direction from a parent who is not seen as having authority to make decisions on behalf of a child of 18 or older. Yet developmentally, a 19-year-old may present more like a younger teenager in the face of the demands of life-threatening illness. The question of when to transition adolescents with chronic illnesses such as cystic fibrosis or inflammatory bowel disease to adult treatment settings is a subject of significant debate for this reason.
Psychosocial Outcomes
The morbidity associated with cancer and its treatment in adolescents can have profound and long-term effects. For example, survivors of cranial irradiation typically score more poorly in the areas of non-verbal intelligence, perception, and short-term memory [7]. A life-threatening illness can destabilize the emotional equilibrium, with depression, labile mood and anger, anxiety, and withdrawal [8]. Adolescents with cancer may be socially handicapped, isolated from school and with friends who do not know how to respond to their illness. They feel inadequate with respect to future career opportunities and educational advancement, more despondent, more tense, and less attractive than "normals" [4]. Interestingly, studies have reported that cancer survivors are less likely to marry [7]. All these factors serve to drive adolescents into the privacy of their home and family, and their own world, the reverse of what usually occurs during this time in a young person's life.
Patients with cancer may have a high incidence of psychiatric disorders. However, one very instructive study assessed 102 survivors of childhood cancers, with no relapse for 5 years, compared to 102 healthy controls, using standard measures of psychiatric disorder, interpersonal performance, and intellectual ability. The investigators found no increased risk of psychiatric disorders [7]. The study did, however, show that survivors were more likely than controls to have a combination of deficits in the establishment and functioning of close relationships and day-to-day coping [7].
Survivor guilt is common and compounded by an existential dimension. Survivors often describe the need for restitution, feelings of responsibility, and a life-long search for meaning. Parents and bone marrow donors are particularly vulnerable [9]. Ms. P's mother had been Ms. P's bone marrow donor, and her sense of loss may have been exacerbated by a perception that her efforts had failed her daughter. This was never addressed in the drive to deliver maximal care and the best chance of cure.
Personal Growth and Support
Conversely, the adolescent with cancer may have a greater appreciation for the important things in life, things that the average person of their age will take for granted. They may establish greater intimacy with immediate family and friends, be more aware of their surroundings, and mature more quickly [10]. There are many avenues that the individual can take to help them feel better on a psychological and social level. With specialized attention and treatment in cancer survivors, positive results have been seen in areas of education, employment, and psychological issues [7]. "Self-esteem is the most significant predictor of hopefulness" [11]. An adolescent faced with cancer needs to have a good support system of family, friends, doctors, and nurses, especially during a time in their lives where self-esteem is already vulnerable. Although the adolescent's social support extends beyond the family, a mother's role remains very significant [12]. No matter the age, when something goes wrong in life, especially when a person is sick, the reflex is to return to mother for help. Integration of the family into proactive support is important, with pilot projects reporting diminished fears and improved coping [13].
One U.S. program providing psychosocial support for adolescents with cancer and their parents is called "Lasting Impressions." The program provides many therapeutic activities, including scrapbooking, a patient newsletter, peer visitation, and a speaker's bureau [2]. Altruism and solidarity are promoted because participants not only receive support, but are encouraged to help each other [2].
Making End-of-Life Decisions
Dealing with cancer often means dealing with death. Facing death is even harder for young people on the threshold of their life. Parents of adolescents with incurable cancer report that the decisions that they have to make at the end of their child's life are the hardest part of the whole experience. Factors reported as important in enabling end-of-life decision-making include: information, an assurance that all curative options have been attempted, trust in the health care team, and support from health care providers [14].
Although the patient's parents may make the ultimate decisions as proxy, many adolescents take a fully active role in making the choices for themselves: their life in their hands.
It is apparent from the dialogue that exceptional care provides an amazing connection between staff and patient: a relationship that is wonderful and thankfully still not unusual despite this technologic age. "Connectedness" is important. It is vitally important for vulnerable and frightened patients. It is also important for staff. "Connectedness" fuels personal growth and is a powerful force for healing. Reflection prompts personal growth, and is an opportunity for changes in values, goals, or direction; healthier behaviors; an improved sense of self; and increased productivity, energy, and creativity [15]. The "connectedness" of staff and patient speaks against the "observant" distance of the empathic physician [16]. In working with families, a multidisciplinary team allows different family members to establish their own relationship with team members, at the same time it allows members of the team to share the sadness and the challenges of working with the family and to "hold" the emotion that these cases evoke.
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CONCLUSION |
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"In the community of living tissues, the uncontrolled mob of misfits that is cancer behaves like a gang of perpetually wilding adolescents. They are juvenile delinquents of cellular society."
Sherwin B. Nuland, 1994 [17]
Adolescents fight for a foothold in the complex world of the adult. When their fight is a grueling battle with cancer, the painful transitions take on a starker contrast. The health care team's connection with the patient, and her world, facilitated her adjustment as her world fell apart.
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REFERENCES |
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- Offer D, Ostrov D, Howard K. The Adolescent: Self Portrait. New York: Basic Books, 1981:195.
- Heiney SP, Wells LM, Coleman B et al. Lasting impressions. A psychosocial support program for adolescents with cancer and their parents. Cancer Nurs 1990;13:13–20.[Medline]
- Evans M. Interacting with teenagers with cancer. London: BMJ, 1996.
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Lewis IJ. Cancer in adolescence. Br Med Bull 1996;52:887–897.
[Abstract/Free Full Text] - Boyle P, Maisonneuve B. Epidemiology of Cancer in Adolescents. London: BMJ, 1996.
- Stiller CA. Centralised treatment, entry to trials and survival. Br J Cancer 1994;70:352–362.[Medline]
- Mackie E, Hill J, Kondryn H et al. Adult psychosocial outcomes in long-term survivors of acute lymphoblastic leukaemia and Wilms' tumour: a controlled study. Lancet 2000;355:1310–1314.[CrossRef][Medline]
- Harter M, Reuter K, Aschenbrenner A et al. Psychiatric disorders and associated factors in cancer: results of an interview study with patients in inpatient, rehabilitation and outpatient treatment. Eur J Cancer 2001;37:1385–1393.
- Patenaude AF, Rappeport JM. Surviving bone marrow transplantation: the patient in the other bed. Ann Intern Med 1982;97:915–918.
- Daiter S, Larson RA, Weddington WW et al. Psychosocial symptomatology, personal growth, and development among young adult patients following the diagnosis of leukemia or lymphoma. J Clin Oncol 1988;6:613–617.[Abstract]
- Ritchie MA. Self-esteem and hopefulness in adolescents with cancer. J Pediatr Nurs 2001;16:35–42.[CrossRef][Medline]
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Ritchie MA. Sources of emotional support for adolescents with cancer. J Pediatr Oncol Nurs 2001;18:105–110.
[Abstract/Free Full Text] - Stecker R, Schlomer-Doll U, Mucke K et al. Psychooncological provision in a general hospital: the Herford model. Patient Educ Couns 2000;40:21–27.[CrossRef][Medline]
- Hinds PS, Oakes L, Furman W et al. End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines. Cancer Nurs 2001;24:122–134.[CrossRef][Medline]
- Kern DE, Wright SM, Carrese JA et al. Personal growth in medical faculty: a qualitative study. West J Med 2001;175:92–98.[CrossRef][Medline]
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Zinn W. The empathic physician. Arch Intern Med 1993;153:306–312.
[Abstract/Free Full Text] - Neuland SB. How we die: reflections on life's final chapter. New York: Vintage Books, 1995.
This article has been cited by other articles:
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  S. Ameringer, R. C. Serlin, S. H. Hughes, S. A. Frierdich, and S. Ward Concerns About Pain Management Among Adolescents With Cancer: Developing the Adolescent Barriers Questionnaire Journal of Pediatric Oncology Nursing, July 1, 2006; 23(4): 220 - 232. [Abstract] [PDF]
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