Will my hair fall out?” “Will it hurt?” “Can I still hang out with my friends?” “How's my life going to change?” These are just some of the questions Ms. S asked when she was diagnosed with lymphoma at age 20. Questions regarding quality of life (QOL) become the focus of many, if not all, people diagnosed with cancer.
A person's QOL is impacted from the beginning of the oncology experience, during which he or she encounters many unplanned, life-altering events. First, the person finds out there's something wrong and “it's cancer.” After hearing these words, there's a great deal to learn and think about, not to mention the decisions to be made. Some decisions are difficult, but need to be made quickly depending on the stage of the disease. Next, the person, now better known as the patient, experiences the consequences of those decisions, such as surgery, chemotherapy, radiation, or palliative care. The patient is entangled in this whirlwind of events.
Defining quality of life
QOL is a multidimensional concept that can be difficult to define due to the subjective nature of both positive and negative aspects of life.1 According to UNdata, a division of the United Nations, QOL is defined as a “notion of human welfare (well-being) measured by social indicators rather than by 'quantitative' measures of income and production.”2 For many, QOL refers to the ability to enjoy normal life activities, such as shopping, driving, working, and entertaining. In nursing, we need to remember that some treatments can impair this ability to enjoy a “normal” life without providing substantial benefit. One author stated, “The term 'quality of life' extends not only to the impact of treatment and side effects, but to the recognition of the patient as an individual, and as a whole person; body, mind, and spirit.”3
The Adaptation Model is an applicable theory for addressing oncology patients and their QOL.4 In this model, the human being is described as a biopsychosocial being. There's also the philosophic assumption that humans have faith/spirituality. Adaptation is defined as the “process and outcome whereby thinking and feeling persons use conscious awareness and choice to create human and environmental integration.”5 The patient is in constant interaction with the environment in which there are three types of stimuli that provoke a response: focal stimuli, contextual stimuli, and residual stimuli.
Focal stimuli are internal or external stimuli immediately confronting the person, such as chemotherapy, radiation, and biopsies. Contextual stimuli are stimuli that affect the situation, such as the patient has a history of smoking or the cost of treatment. The person's beliefs or attitudes are residual stimuli that may influence the situation. For example, the patient thinks that after the initial diagnosis, death is soon to follow.
According to this model, the patient adapts in four modes based on basic needs to maintain integrity: the physiologic-physical mode, the self-concept mode, the role function mode, and the interdependence mode. All the modes impact one another.
The physiologic-physical mode entails the needs of oxygenation, elimination, nutrition, activity and rest, protection, senses, endocrine function, neurologic function, and fluid and electrolyte balances. There are many attacks on the physiologic being during the disease and treatment processes of cancer.
The self-concept mode relates to the physical self and personal self. Physical self includes body sensations and body image.6 Many body image issues exist among cancer patients; for example, when a woman has a mastectomy, a man has a colostomy, or a 20-year-old loses her hair. Personal self includes matters such as self-ideal, self-consistency, and the spiritual self. Oncology patients may experience anxiety related to uncertainty, loss of hope, and even guilt. The impact on the personal self can vary a great deal based on the patient's residual stimuli.
The role function mode emphasizes the need for a person to know who he or she is in relation to others. Social integrity is included in the interdependence mode, balancing independence and dependence of a person in relationships. This mode focuses on love, respect, and value.
Utilizing the nursing process, the goal of the nurse is to promote adaptation in the four modes, contributing to health and increasing QOL. Figure 1 demonstrates the multidimensional process of the Adaptation Model.
Mode 1: Physiologic-physical
Initially, changes in the cancer patient's QOL occur in the physiologic-physical mode. Pain is common in cancer patients and can be related to the disease process and/or treatment modalities. Pain is defined as what the patient says it is.7 Let's take Ms. S, who asked if she would be in pain. After having a bone marrow aspiration, her perceived level of pain was an 8 out of 10. Ms. S responded to this stimulus with a period of inactivity and lack of sleep. After the nurse's intervention of providing a pharmacologic agent, Ms. S was able to return to her previous level of activity.
Ms. S's treatment regimen included chemotherapy. As an adverse reaction of the regimen, she had a change in the way food tasted, which affected her nutrition status. Previous to this alteration in taste, Ms. S enjoyed Mexican cuisine, but the spices in the food became too much for her to tolerate. Her diet while in the hospital was changed to a bland diet, which she didn't like. She was able to reach a compromise by returning to her favorite Mexican foods that were cooked without excess spice.
Another effect of the chemotherapy that altered Ms. S's QOL was alopecia. Although the loss of hair is temporary, there are many potential sequelae. Ms. S didn't understand why the nurses were preparing her for hair loss. They were telling her to be aware that her natural resistance to infection would be decreased, with loss of her eyelashes and nasal hair. Did they not understand she was losing the hair on her head? Of course they did, the education included possible temperature regulation issues with the loss of scalp hair and the need for wearing protective coverings in the cold and the use of sunscreen. But Ms. S was more concerned with her outward appearance and what she would look like without hair.
Mode 2: Self-concept
Ms. S's concern with hair loss impacted her body image. Nursing interventions dealing with alopecia, as it relates self-concept, include resources for wigs and support groups. Sexuality is also a physical domain of the self-concept that affects QOL. This is a difficult concept to address because most people are embarrassed or uncomfortable talking about sexuality. Ms. S was hesitant to discuss the challenges and concerns she had about sexual relations with her fiancé. The nurses caring for Ms. S addressed these issues with sexuality using the PLISSIT model.8
The PLISSIT model is a four-level intervention for dealing with sexuality issues, allowing for the nurse to intervene at the patient's comfort level. The first intervention is permission (P), giving the patient the go-ahead to talk about the topic. The second level is limited information (LI), which allows the nurse to address concerns, myths, or misconceptions and answer questions. The next level of intervention offers specific suggestions (SS). Seasoned nurses and advanced practice nurses are able to intervene in this phase of the model. At this level, suggestions need to take into account the values of all involved. Newer nurses may choose to refer the patient at this level to a seasoned caregiver. The final intervention in the model is intensive therapy (IT). This requires in-depth knowledge and usually involves outpatient treatment, such as a professional counselor, due to the longer-term nature than the nurse-patient interaction allows.
Additional opportunities for nursing to intervene with the patient in the self-concept mode deal with the personal self. Ms. S experienced several challenges in this area. She expressed some uneasiness and fear related to the possibility of a bone marrow transplant. She felt very powerless when it came to her lymphoma. The nurses intervened by listening to her concerns and educating her about options and the transplant procedure.
Ms. S. voiced feelings of guilt because her family and friends had to change their plans to accommodate her illness. The cost of treatment was a burden to her and her family. She didn't feel that she was who she wanted to be. Ms. S coped with these feelings by relying on her spiritual beliefs; while in the hospital, her clergy came to visit regularly. Ms. S's reliance on her spiritual beliefs assisted her in coping and adapting to her cancer diagnosis. Patients who don't have this support will need nurses to listen to them and provide empathy. Providing the patient with a list of local support options is also helpful (Table 1).
Guilt isn't only an emotion affecting the QOL for patients currently fighting cancer, but also for those who've survived and now have a history of cancer. The number of cancer survivors has increased to 11.7 million as reported in 2007.9 These patients may continue to have feelings of guilt, but now the guilt relates to why they survived and others didn't.
Mode 3: Role function
Everyone has a primary and secondary. The primary role, based on age, gender, and developmental stage, determines much of our behavior. The secondary role is achieved and based on developmental stage. Primary and secondary roles are fairly stable roles. The tertiary role can be temporary and freely chosen. We know that Ms. S is a 20-year-old woman who graduated high school and is attending college. She went from feeling good about herself and studying in school to sadness about being a patient. She's newly engaged and went from planning on caring for her future family to being the one cared for. Patients who place a great deal of emphasis on their role will experience greater disturbances in QOL, which can lead to depression.
According to the National Cancer Institute (NCI), 15% to 25% of all cancer patient experience depression.10 The NCI noted that some patients are at higher risk for depression than others. Risk factors may be cancer related or noncancer related (Table 2). It's important for nurses to assess for symptoms of depression in their oncology patients (Table 3). The earlier depression is identified, the earlier it can be treated. Also included in the nurse's assessment is medication reconciliation, including herbal treatments. Herbals, such as the popular St. John's wort, can interact with some chemotherapy agents, lessening their efficacy.11
Mode 4: Interdependence
Finding the balance between dependence and independence in relationships can be a struggle for oncology patients. The equilibrium is offset when patients feel they're taking more than they're giving to the relationship. The support system of the family and significant others can make a difference. If patients feel secure in their relationships, they adjust and adapt better to the cancer experience. If not, they may experience loneliness, increased emotional distress, and hopelessness.
Ms. S had friends that she used to “hang out” with, but they had a difficult time with her diagnosis and treatments. However, Ms. S had other support systems that allowed her to adapt and cope. Again, referring patients to support groups in which to share and listen to others who have experienced the same disease processes may help decrease the patient's loneliness and increase QOL. Interdependence, role function, and self-concept all contribute to a patient's self-esteem. The inability to cope or adapt in one of these modes inhibits the oncology patient's ability to adapt in the other modes.
Palliative care is a specialized approach in healthcare for serious, chronic, life-limiting illnesses. The focus is on relieving and preventing suffering of patients, which improves QOL. Palliative care teams have a multidisciplinary approach, addressing the physical, emotional, social, and spiritual needs of the patients—all of the aspects in the four modes of the Adaptation Model. Palliative care starts at the time the patient is diagnosed and continues until the end of life. Although Ms. S. didn't have the benefit of a palliative care team, she never complained that she had a poor QOL, even at age 21 when her life ended.
The nurse manager greatly impacts a patient's QOL not only through direct contact with the patient, but also indirectly through his or her activities and interactions with the staff. A strong supportive structure for nursing staff is essential. The nurse manager can provide the following supportive roles: approachable, caring, walks the talk, motivates development of self confidence, gives genuine feedback, provides competent staffing, promotes a cohesive team, and constructively resolves conflict.12 Providing nurses with educational opportunities related to cancer symptom management and end-of-life care contributes to this structure.
Although end-of-life education is beneficial, nurses need the opportunity to cope with their emotions related to the loss of a patient. An example of this is establishing a memorial service in collaboration with chaplain services so staff members may bereave the loss of their patients. An invitation to such a service can be extended to family members to assist in the coping of their loss, which will also contribute to the families' QOL.
Quality of life along the continuum
QOL is different for everyone. Nurses have the ability to impact a patient's life with every interaction and intervention. During the time we're assessing our patients for symptoms and intervening, we strive to increase the patient's QOL. Through a holistic approach, nursing provides an empathetic ear, educational information, medication administration and education, and spiritual support to improve QOL for all patients, not just those with cancer.
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