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Seminars in Oncology Nursing, Vol 30, No 4 (November), 2014: pp 268-279

PALLIATIVE CARE AT THE END OF LIFE MAUREEN T. LYNCH OBJECTIVES: To describe the process of symptom management in the care of oncology patients with advanced cancer. DATA SOURCES: Journal articles, evidence-based reviews, textbooks, and clinical guidelines.

CONCLUSION: Symptom management is an essential component of oncology nursing practice that improves quality of life for patients and families throughout the cancer trajectory. IMPLICATIONS

FOR

NURSING PRACTICE: Effective symptom management

requires that oncology nurses holistically assess the patient’s symptom experience and goals of care, formulate specific symptom diagnoses, and develop, implement, and evaluate the outcomes of an evidence-based plan of care that is individualized and acceptable to the patient.

KEY WORDS: Symptom management, anorexia, fatigue, palliative care, oncology nursing

O

NCOLOGY nursing and palliative care share common goals of optimizing quality of life and minimizing suffering for patients and families, not just when death is imminent, but throughout the cancer experience as patients cope with the impact of living with this serious, potentially lifethreatening illness, and the decline in health and function that so often accompanies cancer and

Maureen T. Lynch, MS, APN-BC, AOCNÒ, ACHPN, FPCN: Nurse Practitioner, Palliative Care, Dana Farber Cancer Institute, Boston, MA. Address correspondence to Maureen T. Lynch, MS, APN-BC, AOCNÒ, ACHPN, FPCN, Nurse Practitioner, Palliative Care, Dana Farber Cancer Institute, 450 Brookline Ave, Boston, MA 02215. Ó 2014 Elsevier Inc. All rights reserved. 0749-2081/3004-$36.00/0. http://dx.doi.org/10.1016/j.soncn.2014.08.009

its treatments.1-3 There are many dimensions to suffering and quality of life.4 However, patients report that among the major determinants are the number and severity of symptoms and altered functionality.5-7 Patent’s ratings of physical and functional well-being and effective symptom management are some of the measures used to demonstrate that early integration of palliative care into oncology care improves quality of life and reduces suffering, and may even extend survival.8-10 Thus, effective, compassionate symptom management is essential to the goals of palliative care and oncology nursing.2,6

CASE STUDY Glenn is a 57-year-old married, childless, agnostic construction manager who was

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diagnosed with renal cell cancer 6 years ago. He was initially treated with nephrectomy and followed carefully over time. Three years ago, he was found to have metastatic disease in his lungs, regional lymph nodes, and L3 and 4 vertebrae. He received radiation to the vertebral disease and began treatment with sutinib. As his disease progressed, he had multiple systemic therapies including temsirolimus, bevacizumab, and axtinib.

When he was diagnosed with metastatic disease, Glenn acknowledged that he would die of his cancer but wanted to, ‘‘keep things normal and see how it goes.’’ His consistent goal was to feel well enough to work for as long as possible and to enjoy time with his wife, Linda, who was his healthcare proxy and his primary psychosocial support. Linda provided their health insurance coverage through her administrative position at an insurance company. Glenn had no significant past medical history or drug allergies. Throughout his disease course, his oncology providers consulted with palliative care to manage his primary symptoms of pain, constipation, fatigue, and anorexia.

SYMPTOM MANAGEMENT Symptoms are subjective, multidimensional experiences of change in normal bio-psychosocialspiritual function, sensation, appearance or cognition perceived by the individual as indicative of illness.11,12 The individual’s symptom experience goes beyond the label or description of the symptom to include the level of distress and suffering associated with the symptom. The meaning of the symptom(s) to the individual, and its impact on function and quality of life, and the individual’s emotional response and coping are dimensions of symptom distress.12 Symptom management is a process of care focused on identifying and alleviating symptom distress to reduce suffering and maximize function and quality of life. Nursing’s holistic approach to knowing the patient as a bio-psychosocial-spiritual being and the nursing process (assessment, planning, intervention, and evaluation) provides not only nurses

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but palliative care specialists with a template for effective, individualized symptom management. In 2001, Dodd and colleagues11 described a nursing model of symptom management that emphasized the dynamic nature of the process, subjectivity, and complexity of the symptom experience, and the need for evidence-based interventions. Over time, other nursing models of symptom management emerged that also described the essential elements of clinical symptom management. These elements included individualized assessment of the patient, outcome identification, and planning based on symptom diagnosis and assessment data, intervention, and evaluation.13 Inherent in this process is critical thinking: the assimilation, analysis, and synthesis of patient-specific information and the evidence base for symptom management to create an individualized and rational plan for interventions, and parameters for evaluating the outcomes of care. The first step in the process is to identify the presence of the symptom(s). Symptoms are subjective and patients may be reluctant to report symptoms in the belief that nothing can be done or that symptom management will detract from cancer-directed therapies. Routine screening for common symptoms using symptom inventory tools, such as the Memorial Symptom Assessment Scale or Edmonton Symptom Assessment Scale, assists with symptom identification.14 Comprehensive symptom assessment then seeks to describe the patient, his or her symptom experience, and patient-specific factors that will impact the symptom management plan. Assessment encompasses data collection from multiple sources including patient, family, physical examination, and clinical observation, diagnostic testing, and the medical record. The extent, type, and timing of diagnostic tests are governed by the overall goals of care and an appreciation of how the information that is gained from testing will impact the approach to care. This patient-specific information and the clinician’s knowledge and understanding of the health problems lead to formulation of the symptom diagnosis. This is a succinct statement of the problem(s) and likely cause(s) that will guide the planning and intervention phases of symptom management process. The planning phase of the symptom management process includes identifying the desired outcomes of effective symptom management for

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the individual, and selection of the interventions that will be used to achieve the outcomes. The general goals of symptom management are to prevent, relieve, or modulate symptom distress and improve quality of life and function (physical activity, self-care, cognition, coping, and socialization).11,15 Patient-specific outcomes may be based on function (eg, dance at a daughter’s wedding, eat dinner with the family, walk to the mailbox, sleep without pain), and/or parameters for acceptable symptom control (eg, consistent pain score of 5% over 6 months; a body mass index 2%; sacrcopenia (loss of muscle mass) with weight loss >2%.27 In its final stage, cachexia is considered refractory to

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TABLE 4. Symptom Management Interventions for Anorexia/Cachexia Identification and Management of Contributing Symptoms Patient and family education Psychosocial support Nutrition counseling

Artificial hydration and nutrition

Pharmacology

Lack of appetite and weight loss are often linked to complex changes in the body Patterns of eating and nutritional support will not change the course of the disease but in early stages can improve quality of life and tolerance of cancer-directed therapies Acknowledge the psychological, social, cultural, and religious impact of eating and weight loss as appropriate for patient and family Refer for social work or psychiatric support if needed Mouth care Small frequent meals or snacks Largest meal in the morning or when energy is best Pleasant eating environment Use enriched and fortified foods to increased calories and protein Use of commercial oral liquid nutritional supplements Consultation with qualified nutritionist Generally not tolerated or beneficial in patients who have end stage disease. Individualized goals of the therapy need to be considered. May benefit patients with early stage disease who have temporary limitations in oral nutritional intake (eg, examples are patients undergoing radiation therapy for head and neck cancers; those with GI malfunctions related to cancer or therapies that have high performance status) Extrapyramidal side effects including akathisia may Prokinetic agent for early satiety: occur Metoclopramide 10 mg up to four times daily26 Appetite stimulants: Side effects of edema and thromboembolic events Megestrol acetate is a first-line agent with typical may limit use in some patients onset of effect in 1 week Suggested dose is 160 to 800 mg/day26,32 Corticosteroids: Beneficial effect is short term and the risk of side Mechanism of action unknown effects including gastric upset, muscle wasting, Also considered first-line for anorexia edema, and immune suppression increase over Optimal drug and dose are not established duration of user. Use for symptom management Consider dexamethasone 4 to 8 mg once daily in is usually restricted to short courses of therapy, morning26 or for those nearing death26 Cannabinoids: Side effects include sedation, cognitive slowing, and Dronabinol is FDA-approved for AIDS-related confusion32 anorexia in doses of 5-20 mg/daily initial dose. Its use in cancer related anorexia is under investigation32 Under study: Mirtazapine, a tetracyclic antidepressant, may improve appetite and weight26,32 Olanzapine, an atypical antipsychotic, may act synergistically with megestrol to reduce anorexia26

nutritional support and is characterized by low performance status and an expected survival of 5% over 2 months raising concern of cachexia. He noted that

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he was increasingly limiting his activities because of fatigue. He was asked to resign his position at work and accept disability compensation. With this decision, he acknowledged sadness and sense of loss, although he denied depression. He prioritized social interactions with family and friends in addition to doing, or supervising, small home improvement projects as best he could. He became concerned that weight loss was contributing to fatigue and impacting the success of his cancer therapy. At that point, he agreed to use a calorie/protein supplement drink twice per day. He smoked marijuana for appetite stimulation but felt it worsened his fatigue. He then tried megestrol acetate 400 mg/day as an appetite stimulant with some improvement in oral intake but not weight. His methylphenidate was increased to 15 mg in the morning and early afternoon because of worsening fatigue.

SYMPTOM MANAGEMENT CONSIDERATIONS IN PATIENTS NEARING DEATH As death nears, physiologic functions deteriorate with alterations in organ perfusion, function, and metabolism. Symptoms may change.18 Some symptoms, such as pain or dyspnea, may worsen as a result of disease progression; other symptoms will regress. New symptoms such as delirium may arise. There may be variable therapeutic responses to symptom-management medications.33 For example, poor renal clearance may lead to prolonged drug effect or accumulation of drug metabolites (such as with opioids). Sleeping more with decreased alertness, and possibly slowed cognition may alter the patient’s ability to report and describe symptoms and side effects of interventions.18,33 If the patient is unable to communicate, caregiver reports may be helpful, as will behavioral observations by the clinician, and knowledge of previous symptom issues and disease course.34 With increased weakness, patients commonly spend more time in bed and refuse or minimize oral intake. Swallowing may become difficult, requiring the continuance of only essential medications. Because abrupt discontinuation of certain medications such as opioids and benzodiazepines can cause withdrawal, these should be among the essential medications to continue as appropriate to the patient’s symptoms. Non-oral

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routes of medication delivery such as rectal, transmucosal, transdermal, intravenous, or subcutaneous may be considered. Issues of cost, availability of appropriate and effective dosing forms, and consideration of caregiver burden will influence drug selection and routes of administration.33 In rare cases, a dying patient may experience suffering caused by pain and other symptoms that does not diminish despite optimum use of available symptom-relieving therapies. In these cases, palliative sedation may be considered to relieve suffering after interdisciplinary clinical and ethical-legal assessments.33,35

CASE STUDY Eight months before his death, based on conversations with his oncologist and palliative care team, Glenn decided to stop cancerdirected therapies because of increasing fatigue and weakness. He and Linda agreed about comfort-focused goals of care. Together, they completed medical orders for life-sustaining therapies declining hospitalization, resuscitation, and artificial feeding. His hope for ‘‘a few good months’’ was realized to some extent, with less fatigue and stable weight for a time after stopping cancer treatment. Two months before his death, he noted marked progression in activity intolerance and weight loss. He voiced distress about his appearance, his declining selfcare abilities, and a sense of being a burden to his wife. Despite ongoing discussions with his oncology providers and palliative care team, and encouragement from Linda, Glenn resisted referral to home hospice until 6 weeks before his death. At that point, he required help with all activities of daily living because of increasing weakness, and Linda began a family medical leave from work to care for him full time at home. Glenn worried that Linda would need help but said he was ‘‘okay as long as he could rest.’’ His back pain increased, but was controlled with increased doses of methadone and hydromorphone. As he became even weaker, spending most of his days in bed and eating little, he found even swallowing pills was increasingly difficult, requiring that his medications be converted to liquid and rectal

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forms. In his final weeks, with recognition that his increasing weakness/lethargy and lack of interest in eating were now part of his dying process, megestrol and methylphenidate were stopped. Dexamethasone 4 mg oral elixir daily was added to help with pain. Glenn died comfortably at home.

CONCLUSION Oncology nurses interact with patients throughout their cancer experience. The nursing

focus on the human responses to this experience provides for early recognition of symptoms and implementation of a symptom management plan to improve quality of life. The science of nursing continues to contribute to the expanding evidence base for cancer symptom management, while the art of nursing maintains the focus on the individual’s values, goals, and definition of quality of life. The synergy of palliative care and oncology nursing provides optimal symptom management, clarification of realistic goals of care and therapies, and maximal quality of life for the patient and family.

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27. Fearon K, Strasser F, Anker SD, et al. Definition and classification of cancer cachexia: an international consensus. Lancet Oncol 2011;12:489-495. 28. Del Ferraro C, Grant M, Koczywas M, Dorr-Uyemura LA. Management of anorexia-cachexia in end stage lung cancer patients. J Hospice Palliat Nurs 2012;14:397-402. 29. McCreery E, Costello J. Providing nutritional support for patients with cancer cachexia. Int J Palliat Nurs 2013;19: 32-37. 30. Levin RH. Developing an early intervention model and a ‘‘culture of nutrition’’. In: Marino MJ, Patton A, eds. Cancer nutrition services: a practical guide for cancer programs. Rockville, MD: Association of Community Cancer Centers; 2012: pp. 11-15. Available at: http://www.accc-cancer.org/ publications/pdf/CancerNutritionGuide-2012.pdf. Accessed February 14, 2014. 31. Panke J. Anorexia and cachaexia. In: Dahlin CM, Lynch M, eds. Core curriculum for advanced practice palliative

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Palliative care at the end of life.

To describe the process of symptom management in the care of oncology patients with advanced cancer...
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