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Role of the oncology nurse in home care: Family-centered practice
Role of the Oncology Nurse in Home Care: Family-Centered Practice Lynne E. McEnroe
Objectives: To provide an overview of the role of the oncology nurse in home care with emphasis on familycentered practice. Data sources: Review articles, book chapters, and case records. Conclusions: The expansion of care from the hospital to the home has resulted in increasing complexity of cancer care at home. The goal of home health care is to initiate, manage, and evaluate the resources necessary to promote the patient's optimal level of wellness. The
family as the unit of care is essential in achieving this goal. Implications for nursing practice: The acuity level and complex needs of cancer patients at home requires home care nurses to have a broad knowledge base and to be efficient in high-technology skills. Competency in family assessment, teaching, counseling, supervising and coordinating community and family resources are essential to provide effective home care. Copyright © 1996 by W.B. Saunders Company
NCOLOGY NURSING continues to be shaped by the evolving health care environment. Prospective payment and managed care systems have encouraged the expansion of care from the hospital to the home, resulting in the increasing complexity of cancer care at home. Today, the care required for cancer patients at home goes beyond the scope of the traditional community health nurse. The acuity level and complex care needs of cancer patients at home requires home care nurses to be efficient in high-technology skills. In an effort to optimize continuity of care and influence positive patient outcomes, the oncology home care nurse needs to be able to integrate the skills needed in the acute care setting into community health strategies directed towards promoting health and managing chronic illness. Home care is firmly rooted in community health nursing's tradition of providing care directly to the sick as well as teaching families principles related to the proper care of the sick. 1 The home health nurse is expected to assess patient problems, identify nursing diagnoses, implement nursing interventions, and evaluate outcomes of care. Assessment includes the patient's actual and potential health problems as well as characteristics of the patient-family system. When planning
interventions and evaluating outcomes of care, one must consider the impact of the family and social, economic, and physical environment on the patient's health status and care needs. 2
O
From Karmanos Cancer Institute, Detroit, M1. Lynne E. McEnroe, MA, MSN, RN: Associate Administrator, Karmanos Cancer Institute--Home Care and Hospice Programs, Detroit, MI. Address reprint requests to Lynne E. McEnroe, MA, MSN, RN, Karmanos Cancer Institute, 110 E Warren Ave, Detroit, MI 48201. Copyright © 1996 by W.B. Saunders Company 0749-2081/96/1203-000355.00/0 188
SCOPE OF PRACTICE Within the health care continuum, patient care requirements in the home setting vary from acute care to rehabilitative care and long-term health maintenance, as limited by insurance eligibility) In home care, the family as the unit of care is essential to the establishment of achievable goals. Cancer rehabilitation goals are defined within the context of life expectancy, degree of disability, as well as psychosocial and economic support. 4 The global goal of home health care is to initiate, manage, and evaluate the resources necessary to promote the patient's optimal level of wellness. Nursing activities to achieve this goal are centered on secondary prevention strategies facilitating early diagnosis of health problems and prompt intervention to limit disabilities, provide assistance to families, and oversee coordination of community resources. Premises underlying the practice of home health nursing are guided by shared values of the discipline of nursing, as summarized in Table 1.5 Home health nursing practice focuses on the care of individuals, in collaboration with the family and designated informal caregivers. During an episode of care, technically precise nursing procedures may be required in conjunction with teaching, counseling, care management processes, and resource coordination. Ongoing data collection and analysis guide the episode of care. Home health nursing is characterized by autonomous, interdependent practice; comprehensive decision-making, multidisci-
Seminars in Oncology Nursing, Vo112, No 3 (August), 1996: pp 188-192
ROLE OF THE ONCOLOGY NURSE IN HOME CARE Table 1. Selected Beliefs Guiding Home Health Practice Home health nursing is both episodic and continual. A patient's home is an appropriate setting for care, as long as care can be rendered safely and effectively. Home may be the patient's preferred setting to receive care, to restore, improve or manage illness, or manage peaceful death. Nurse advocacy promotes and empowers patient autonomy. Patients in collaboration with the nurse determine the need for services. Data from reference 6.
plinary coordination, and collaboration strengthen the nurses ability to meet the care needs of home health patient. 5 Preparation of the home health oncology nurse must include specialized knowledge of the disease process, treatment protocols, psychosocial aspects of cancer, and strategies for the delivery of nursing care in the home setting. RESPONSIBILITIES OF THE HOME HEALTH NURSE According to the American Nurses Association, the professional home health nurse practices at the generalist level and is prepared at the baccalaureate level. 5 Home health nursing requires a broad knowledge base and skills. 5 Table 2 summarizes home health nursing skills. Nursing care to promote self-care competence, nutritional adequacy, effective symptom management, and health promotion requires teaching and counseling support of the patient and family caregivers.
Family Assessment Family assessment includes information about the family members and their relationships to Table 2. Home Health Nursing Skills Skill Assessment of patient/caregiver resources Coordination of community resources Data collection and analysis
Outcome
Development of a goal-directed plan of care Support necessary to achieve optimal outcome Evaluate progress towards goals of care Instruction and counseling of Promote self-care patients and caregivers Health promotion teaching Minimize disability Collaboration through disPromote continuity charge planning, care management and advocacy Technical intervention Provide direct care Monitor and guide caregiver Promote achievement of participation goals of care
189
identify roles and activities of the individuals with whom the patient interacts. The family is not limited to the idealized or traditional nuclear family structure, but often includes other family members and close friends. Important considerations of the family assessment are the organization, behavior, adaptability, and communication patterns of the family. Family organization is influenced by communication processes, such as decision making and problem solving. Family behavior can be described in terms of adaptability, cohesion, and communication. Family adaptability is the ability to change the role relationships, relationship rules, and power structure in response to developmental and situational stress. Family cohesion is the emotional bond that members have toward one another. Family communication and patterns of interaction enhance or restrict movement within the adaptability and cohesion dimensions. 6,7 Patterns and predominant styles of adapting and coping with stress are helpful in understanding how a family system has managed in the past and how they will likely manage the demands associated with cancer. Family routines and individual members choosing to participate in these routines reflect patterns of family interaction. 8,9 Patient/caregiver knowledge, family values and beliefs, motivations, and expectations need to be explored to identify achievable goals of care. Healthy family systems adjust to changes by implementing strategies to use internal and external resources. The home health nurse must assess the family structure and communication processes to design interventions that fortify a family's internal resources and mobilize access to external community resources to support the caregiving role. The patient's family is vulnerable to physical, personal, and social disruptions due to the chronic nature of the care demands of cancer and the potential for perceived loss of control over the family unit. 2,~° Availability of family caregivers and their functional, psychological, and financial ability to assume caregiving responsibilities are crucial dimensions of the family system. Availability and ability of caregivers impact the potential viability of the home setting as the most appropriate care environment.
Case Study Mr L.R, a retired 64-year-old truck driver, was initially referred to the Home Care Agency in late August after a 7-week term of hospitalization.
190
Medical history included (1) poorly differentiated large cell carcinoma of the lung (left upper lobe resection 4 years ago); (2) metastasis to mesentery wall and large bowel (resection 4 months ago); (3) metastasis to esophagus and mediastinum; (4) esophageal obstruction; (5) deep vein thrombosis (left subclavian vein; (6) bronchoesophageal fistula; (7) pneumonia; (8) neutropenia (resolved); (9) disseminated herpes zoster (treated); and (10) cellulitis (treated). Continuing care needs identified by the hospital discharge planner included jejunostomy tube (J-tube) feeding at 75 mL/h around the clock via kangaroo pump, gastrostomy tube (G-tube) to drainage, dressing change as necessary at fistula site, administration of medications, bladder and bowel incontinence, and assistance with activities of daily living and ambulation. Assessment of the family revealed that the wife would continue as the decision-maker and function as the primary caregiver. Other family members included three adult children who lived in neighboring communities; none of the children currently participated in household or caregiving routines. The impact of the stress due to the patient's illness and care needs would require continual evaluation. Although family cohesion appeared to be low, adaptability of role relationships would need to be explored in an attempt to support the wife's caregiving responsibilities. On the initial visit, the Home Care Nurse was able to determine that the caregiver's chief concern and goal of care was "how to care for the patient at home." The wife did express apprehension about caring for the patient. The physical environment was briefly described as a one-story "cluttered and run-down" home. A walker, bedside commode, and hospital bed had been delivered; the equipment was set up in the living room. Further assessment revealed that the wife was able to administer the tube feedings. Her attitude was receptive towards learning other aspects of care. Instruction during the initial home visit emphasized pump function for the J-tube feeding and emptying and flushing of the G-tube with half-strength normal saline. The need for a social work referral was identified to assist with longrange planning and provide short-term counseling, however, the service was refused by the patient and caregiver. Home health aide services to assist with personal care or treatments was declined. During a period of approximately 3 weeks, a total of eight home care nursing visits were made to
LYNNE E. McENROE
continue assessment, to teach, evaluate learning, and to reinforce the specific care technologies and restorative techniques required to care for the patient at home. In addition, instruction was provided to assist the patient and caregiver in understanding how to access community resources (eg, durable medical equipment, physician, pharmacy, medical transportation) necessary to manage the treatment regimens. Education of the caregiver regarding the possible risks of the treatments and the potential complications of the disease process was a significant component of the nursing intervention. The caregiver was receptive to the ongoing teaching and support provided by the home care nurse. On an average, 8 to 10 hours a day were required by the family caregiver to complete the care needed. Although the family system was under much stress, it was adaptable in meeting the care requirements. At the third nursing visit, it was noted that the esophageal fistula dressing was saturated with thick, clear mucous. A referral was made to the home care agency's enterostomal therapist. Exploration of alternatives to successfully contain the fistula drainage were begun. An adult daughter, who lived outside the patient's household, became involved in the care indirectly by running errands during her lunch hour. The home care episode was interrupted for a planned 5-day rehospitalization for administration of chemotherapy. When home care was resumed, the patient was experiencing continuous diarrhea with progressive weakness during a 1-week period. The caregiver demonstrated a thorough understanding of the changes to report and, with support from the nurse, sought medical intervention and hospitalization due to the apparent dehydration secondary to the side-effects of the chemotherapy. After resolution of the acute symptoms, the home care service was again resumed. The home care nurse assessed that the caregiver was adequately able to care for both the G-tube and the J-tube and was independent in administering the tube feeding. Subsequently, an average of two nursing visits per week were made to assess patient health status and implement revisions in the care plan. An ostomy appliance without a finn backing and faced with a protective transparent dressing was implemented and evaluated to successfully replace the bulky gauze dressings used at the fistula
ROLE OF THE ONCOLOGY NURSE IN HOME CARE
site that had required changing four or more times a day. Nutrition consultation was sought to determine adequacy of the diet. The agency social worker was contacted to assist with financial concerns because of depleting insurance coverage and recent questions raised by the caregiver about potential death at home. Ongoing teaching by the home care nurse focused on complications of the underlying disease process, including signs and symptoms of disease progression. Counseling support from the nurse, in conjunction with the social worker, included exploration of eligibility for hospice care and encouragement to identify a patient advocate and execute a medical durable power of attorney. The patient's health status essentially stabilized after a third course of chemotherapy. The current care goals were met and discharge from home care was concluded after an additional 12 home care nursing visits. Discussion
This complicated case represents the intermittent, episodic nature of home care as well as the acuity of illness and complexity of care needs found in the home care setting. The role of the family caregiver is obviously pivotal to the success of the treatment plan. The home care nurse's ability to assess the family system and provide appropriate educational and emotional support reinforces the familys' ability to function as an adaptable network of caregivers. Patient problems were assessed, interventions implemented, and care outcomes evaluated on an ongoing basis. The technical skills, teaching, counseling, care management with other disciplines, and coordination of resources are exemplified in the care provided to Mr L.P. and his family. The family with a member diagnosed with cancer faces a series of sociological and psychological crises during the course of the disease. The family, as an aggregate and as individual members, will experience the disease in their own unique way. The type and severity of stress experienced by the family will depend on the patient's developmental stage and on the concomitant developmental stages of individual members. For example, the issues related to a cancer diagnosis of a school-age child, a parent in a child rearing family, or an elderly person living alone are widely varied. The periods of crisis experienced by the family are
191
interpersonal and social-psychological, within the context of the family patterns and processes. Adaptation to the uncertainty of cancer as a chronic illness exists as a subtle stressor. The threat of relapse, recurrence, or decline may require further support to strengthen family functioning.~l THE COSTS OF HOME CARE As more is known about providing care for cancer patients at home, the direct and indirect costs of care are becoming more clearly appreciated. The movement to home care from the acute care setting has been fueled by the cost containment mandate. However, a multiplicity of indirect costs have shifted to the patient, the caregiver, and the family. Out-of-pocket financial expenses such as transportation, medications, respite services, as well as psychological morbidity affecting the health of the caregiver, family stability, emotional burden, and impact on the development of children are some of the hidden costs of care at home. Assessment of the needs of the patient and caregiver in the home care environment is essential to determine if the resources available in the home will support successful implementation of the plan of treatment. The functional level of the patient, not the diagnosis or disease status, affects the complexity of the home care plan and, therefore, the costs of care.12-14 The need for physical or supportive care may exceed that which the family can provide. Patients and spouses in particular may experience emotional distress due to the diagnosis of cancer and complicated by the discomfort of side effects of therapy. These stresses include uncertainty, lifestyle disruption, physical care difficulties, role alterations, financial concerns, and difficulty in obtaining information about the disease, treatments and the health care system. When evaluating the cost-effectiveness of home care, the family situation, the complexity of the care required, the ability of the family to provide the care, and the tangible and intangible resources needed for the caregivers care must be considered, if-is Home health agency resources must be developed and allocated to support the patient care staff, including educational opportunities to promote staff competence and measures to optimize worksite safety, especially in unfamiliar neighborhoods and residences. An awareness of safety issues within the community must be maintained.
192
LYNNE E. McENROE
CONTINUITY OF CARE
Table 3. Advantages and Disadvantages of Home Care
As home health care continues to evolve as a significant segment of the health care system, issues related to consumerism and technological options available in the home must be examined. Treatments initiated in the hospital or outpatient setting may require referral to a home health agency for continuation of teaching and support. Home infusion therapy provides the opportunity for patients to assume greater participation in their care and emphasizes the need for them to acquire substantial knowledge about their disease and its management. Assessment and evaluation of the patient's or the caregiver's ability to manage specific care skills is required to determine the feasibility and appropriateness of home health services as a care option. Continuity of care is maintained when patients require ongoing monitoring or continued therapy at home. Home health nurses serve as a pivotal communication link between the patient and other members of the health care team, including the physician, laboratory, and pharmacy. Patient and family teaching, direct patient care, and coordination of services are major responsibilities of the home health nurse. 19 The advocacy role of the home health nurse has expanded substantially as reimbursement structures continue to change in an effort to decrease
Advantages
Disadvantages
Decreased direct expenses Convenience for patient and caregiver Increased sense of control Improved quality of life for patient
Increased out-of-pocket expenses Increased care demands Emotional strain Complicated daily routine
direct health care expenditures. Effective communication with third-party payors, especially within managed care systems, emphasizes the nurse's role in ensuring reimbursement for needed services. As managed care systems continue to influence health care delivery, finite hospital length of stay increases the need for services at home. Table 3 summarizes the advantages and disadvantages of providing care in the home setting. CONCLUSION
As the home is recognized as a principal site for health care, the family and community resources become essential components of the system necessary to achieve positive outcomes of care. The expertise of the home health nurse and the need to empower patients and caregivers to participate in health care decisions and practices reflect the values underlying the current social imperative to c o n t r o l c o s t s . 5,2°
REFERENCES 1. Rose MA: Home care nursing practice: The new frontier. Holistic Nnrs Pract 2:1-8, 1989 2. McNally JC, McEnroe LE: Home health care, in Buchsel PC, Yarbro CH (eds): Oncology Nursing in the Ambulatory Setting. Boston, MA, Jones & Bartlett, 1993, pp 217-245 3. Peters DA: A concept of nursing discharge. Holistic Nurs Pract 2:18-25, 1989 4. Watson PG: Cancer rehabilitation: An overview. Semin Oncol Nurs 3:167-173, 1992 5. American Nurses Association: A Statement on the Scope of Home Health Nursing Practice. Washington, DC, American Nurses Association, 1992 6. Olson DH, McCubbin HI, Barnes HL, et al: Families: What Makes Them Work. Beverly Hills, CA, Sage, 1983, pp 47-80 7. Gershwin MW, Nilsen JM: Healthy families: Forms and processes, in Gilliss CL, Highley BL, Roberts BM, et al (eds): Toward a Science of Family Nursing. Menlo Park, AddisonWesley, 1989, pp 77-91 8. Woodward W, Thobaben M: Special home healthcare nursing challenges. Home Healthcare Nurse 3:33-37, 1994 9. Denham S: Family routines: A construct for considering family health. Holistic Nurs Pract 4:11-23, 1995 10. deMenses MR, Perry GR: The plight of caregivers. Home Healthcare Nurse 4:10-14, 1993 11. Tiblier KB: The family and cancer, in Gilliss CL,
Highley BL, Roberts BM, et al (eds): Toward a Science of Family Nursing. Menlo Park, Addison-Wesley, 1989, pp 332-343 12. White EJ: Homecare of the patient with advanced lung cancer. Semin Oncol Nurs 3:216-221, 1987 13. Handy CM: Home care of patients with technically complex nursing needs. Nurs Clin North Am 3:315-323, 1988 14. Hileman JW, Lackey NR: Self-identified needs of patients with cancer and their caregivers: A descliptive study. Oncol Nurs Forum 6:907-913, 1990 15. Oberst MT, James RH: Going home: Patient and spouse adjustment following cancer surgery. Topics Clin Nuts 7:46-57, 1985 16. Varricchio C: Human and indirect costs of home care. Nurs Outlook 42:151 - 157, 1994 17. Wingate AL, Lackey NR: A description of the needs of noninstitutionalized cancer patients and their primary care givers. Cancer Nurs 4:216-225, 1989 18. Stetz KM: Caregiver demands during advanced cancer: The spouse's needs. Cancer Nurs 5:260-268, 1987 19. Salvaggio MS: Meeting the challenge of home therapy for the patient with cancer. Clin Persp Oncol Nurs 3:1-12, 1995 20. National Health Information: Managed care alters definition of cost effectiveness. Managed Home Care 6:81-96, 1995
Objectives: To provide an overview of the role of the oncology nurse in home care with emphasis on familycentered practice. Data sources: Review articles, book chapters, and case records. Conclusions: The expansion of care from the hospital to the home has resulted in increasing complexity of cancer care at home. The goal of home health care is to initiate, manage, and evaluate the resources necessary to promote the patient's optimal level of wellness. The
family as the unit of care is essential in achieving this goal. Implications for nursing practice: The acuity level and complex needs of cancer patients at home requires home care nurses to have a broad knowledge base and to be efficient in high-technology skills. Competency in family assessment, teaching, counseling, supervising and coordinating community and family resources are essential to provide effective home care. Copyright © 1996 by W.B. Saunders Company
NCOLOGY NURSING continues to be shaped by the evolving health care environment. Prospective payment and managed care systems have encouraged the expansion of care from the hospital to the home, resulting in the increasing complexity of cancer care at home. Today, the care required for cancer patients at home goes beyond the scope of the traditional community health nurse. The acuity level and complex care needs of cancer patients at home requires home care nurses to be efficient in high-technology skills. In an effort to optimize continuity of care and influence positive patient outcomes, the oncology home care nurse needs to be able to integrate the skills needed in the acute care setting into community health strategies directed towards promoting health and managing chronic illness. Home care is firmly rooted in community health nursing's tradition of providing care directly to the sick as well as teaching families principles related to the proper care of the sick. 1 The home health nurse is expected to assess patient problems, identify nursing diagnoses, implement nursing interventions, and evaluate outcomes of care. Assessment includes the patient's actual and potential health problems as well as characteristics of the patient-family system. When planning
interventions and evaluating outcomes of care, one must consider the impact of the family and social, economic, and physical environment on the patient's health status and care needs. 2
O
From Karmanos Cancer Institute, Detroit, M1. Lynne E. McEnroe, MA, MSN, RN: Associate Administrator, Karmanos Cancer Institute--Home Care and Hospice Programs, Detroit, MI. Address reprint requests to Lynne E. McEnroe, MA, MSN, RN, Karmanos Cancer Institute, 110 E Warren Ave, Detroit, MI 48201. Copyright © 1996 by W.B. Saunders Company 0749-2081/96/1203-000355.00/0 188
SCOPE OF PRACTICE Within the health care continuum, patient care requirements in the home setting vary from acute care to rehabilitative care and long-term health maintenance, as limited by insurance eligibility) In home care, the family as the unit of care is essential to the establishment of achievable goals. Cancer rehabilitation goals are defined within the context of life expectancy, degree of disability, as well as psychosocial and economic support. 4 The global goal of home health care is to initiate, manage, and evaluate the resources necessary to promote the patient's optimal level of wellness. Nursing activities to achieve this goal are centered on secondary prevention strategies facilitating early diagnosis of health problems and prompt intervention to limit disabilities, provide assistance to families, and oversee coordination of community resources. Premises underlying the practice of home health nursing are guided by shared values of the discipline of nursing, as summarized in Table 1.5 Home health nursing practice focuses on the care of individuals, in collaboration with the family and designated informal caregivers. During an episode of care, technically precise nursing procedures may be required in conjunction with teaching, counseling, care management processes, and resource coordination. Ongoing data collection and analysis guide the episode of care. Home health nursing is characterized by autonomous, interdependent practice; comprehensive decision-making, multidisci-
Seminars in Oncology Nursing, Vo112, No 3 (August), 1996: pp 188-192
ROLE OF THE ONCOLOGY NURSE IN HOME CARE Table 1. Selected Beliefs Guiding Home Health Practice Home health nursing is both episodic and continual. A patient's home is an appropriate setting for care, as long as care can be rendered safely and effectively. Home may be the patient's preferred setting to receive care, to restore, improve or manage illness, or manage peaceful death. Nurse advocacy promotes and empowers patient autonomy. Patients in collaboration with the nurse determine the need for services. Data from reference 6.
plinary coordination, and collaboration strengthen the nurses ability to meet the care needs of home health patient. 5 Preparation of the home health oncology nurse must include specialized knowledge of the disease process, treatment protocols, psychosocial aspects of cancer, and strategies for the delivery of nursing care in the home setting. RESPONSIBILITIES OF THE HOME HEALTH NURSE According to the American Nurses Association, the professional home health nurse practices at the generalist level and is prepared at the baccalaureate level. 5 Home health nursing requires a broad knowledge base and skills. 5 Table 2 summarizes home health nursing skills. Nursing care to promote self-care competence, nutritional adequacy, effective symptom management, and health promotion requires teaching and counseling support of the patient and family caregivers.
Family Assessment Family assessment includes information about the family members and their relationships to Table 2. Home Health Nursing Skills Skill Assessment of patient/caregiver resources Coordination of community resources Data collection and analysis
Outcome
Development of a goal-directed plan of care Support necessary to achieve optimal outcome Evaluate progress towards goals of care Instruction and counseling of Promote self-care patients and caregivers Health promotion teaching Minimize disability Collaboration through disPromote continuity charge planning, care management and advocacy Technical intervention Provide direct care Monitor and guide caregiver Promote achievement of participation goals of care
189
identify roles and activities of the individuals with whom the patient interacts. The family is not limited to the idealized or traditional nuclear family structure, but often includes other family members and close friends. Important considerations of the family assessment are the organization, behavior, adaptability, and communication patterns of the family. Family organization is influenced by communication processes, such as decision making and problem solving. Family behavior can be described in terms of adaptability, cohesion, and communication. Family adaptability is the ability to change the role relationships, relationship rules, and power structure in response to developmental and situational stress. Family cohesion is the emotional bond that members have toward one another. Family communication and patterns of interaction enhance or restrict movement within the adaptability and cohesion dimensions. 6,7 Patterns and predominant styles of adapting and coping with stress are helpful in understanding how a family system has managed in the past and how they will likely manage the demands associated with cancer. Family routines and individual members choosing to participate in these routines reflect patterns of family interaction. 8,9 Patient/caregiver knowledge, family values and beliefs, motivations, and expectations need to be explored to identify achievable goals of care. Healthy family systems adjust to changes by implementing strategies to use internal and external resources. The home health nurse must assess the family structure and communication processes to design interventions that fortify a family's internal resources and mobilize access to external community resources to support the caregiving role. The patient's family is vulnerable to physical, personal, and social disruptions due to the chronic nature of the care demands of cancer and the potential for perceived loss of control over the family unit. 2,~° Availability of family caregivers and their functional, psychological, and financial ability to assume caregiving responsibilities are crucial dimensions of the family system. Availability and ability of caregivers impact the potential viability of the home setting as the most appropriate care environment.
Case Study Mr L.R, a retired 64-year-old truck driver, was initially referred to the Home Care Agency in late August after a 7-week term of hospitalization.
190
Medical history included (1) poorly differentiated large cell carcinoma of the lung (left upper lobe resection 4 years ago); (2) metastasis to mesentery wall and large bowel (resection 4 months ago); (3) metastasis to esophagus and mediastinum; (4) esophageal obstruction; (5) deep vein thrombosis (left subclavian vein; (6) bronchoesophageal fistula; (7) pneumonia; (8) neutropenia (resolved); (9) disseminated herpes zoster (treated); and (10) cellulitis (treated). Continuing care needs identified by the hospital discharge planner included jejunostomy tube (J-tube) feeding at 75 mL/h around the clock via kangaroo pump, gastrostomy tube (G-tube) to drainage, dressing change as necessary at fistula site, administration of medications, bladder and bowel incontinence, and assistance with activities of daily living and ambulation. Assessment of the family revealed that the wife would continue as the decision-maker and function as the primary caregiver. Other family members included three adult children who lived in neighboring communities; none of the children currently participated in household or caregiving routines. The impact of the stress due to the patient's illness and care needs would require continual evaluation. Although family cohesion appeared to be low, adaptability of role relationships would need to be explored in an attempt to support the wife's caregiving responsibilities. On the initial visit, the Home Care Nurse was able to determine that the caregiver's chief concern and goal of care was "how to care for the patient at home." The wife did express apprehension about caring for the patient. The physical environment was briefly described as a one-story "cluttered and run-down" home. A walker, bedside commode, and hospital bed had been delivered; the equipment was set up in the living room. Further assessment revealed that the wife was able to administer the tube feedings. Her attitude was receptive towards learning other aspects of care. Instruction during the initial home visit emphasized pump function for the J-tube feeding and emptying and flushing of the G-tube with half-strength normal saline. The need for a social work referral was identified to assist with longrange planning and provide short-term counseling, however, the service was refused by the patient and caregiver. Home health aide services to assist with personal care or treatments was declined. During a period of approximately 3 weeks, a total of eight home care nursing visits were made to
LYNNE E. McENROE
continue assessment, to teach, evaluate learning, and to reinforce the specific care technologies and restorative techniques required to care for the patient at home. In addition, instruction was provided to assist the patient and caregiver in understanding how to access community resources (eg, durable medical equipment, physician, pharmacy, medical transportation) necessary to manage the treatment regimens. Education of the caregiver regarding the possible risks of the treatments and the potential complications of the disease process was a significant component of the nursing intervention. The caregiver was receptive to the ongoing teaching and support provided by the home care nurse. On an average, 8 to 10 hours a day were required by the family caregiver to complete the care needed. Although the family system was under much stress, it was adaptable in meeting the care requirements. At the third nursing visit, it was noted that the esophageal fistula dressing was saturated with thick, clear mucous. A referral was made to the home care agency's enterostomal therapist. Exploration of alternatives to successfully contain the fistula drainage were begun. An adult daughter, who lived outside the patient's household, became involved in the care indirectly by running errands during her lunch hour. The home care episode was interrupted for a planned 5-day rehospitalization for administration of chemotherapy. When home care was resumed, the patient was experiencing continuous diarrhea with progressive weakness during a 1-week period. The caregiver demonstrated a thorough understanding of the changes to report and, with support from the nurse, sought medical intervention and hospitalization due to the apparent dehydration secondary to the side-effects of the chemotherapy. After resolution of the acute symptoms, the home care service was again resumed. The home care nurse assessed that the caregiver was adequately able to care for both the G-tube and the J-tube and was independent in administering the tube feeding. Subsequently, an average of two nursing visits per week were made to assess patient health status and implement revisions in the care plan. An ostomy appliance without a finn backing and faced with a protective transparent dressing was implemented and evaluated to successfully replace the bulky gauze dressings used at the fistula
ROLE OF THE ONCOLOGY NURSE IN HOME CARE
site that had required changing four or more times a day. Nutrition consultation was sought to determine adequacy of the diet. The agency social worker was contacted to assist with financial concerns because of depleting insurance coverage and recent questions raised by the caregiver about potential death at home. Ongoing teaching by the home care nurse focused on complications of the underlying disease process, including signs and symptoms of disease progression. Counseling support from the nurse, in conjunction with the social worker, included exploration of eligibility for hospice care and encouragement to identify a patient advocate and execute a medical durable power of attorney. The patient's health status essentially stabilized after a third course of chemotherapy. The current care goals were met and discharge from home care was concluded after an additional 12 home care nursing visits. Discussion
This complicated case represents the intermittent, episodic nature of home care as well as the acuity of illness and complexity of care needs found in the home care setting. The role of the family caregiver is obviously pivotal to the success of the treatment plan. The home care nurse's ability to assess the family system and provide appropriate educational and emotional support reinforces the familys' ability to function as an adaptable network of caregivers. Patient problems were assessed, interventions implemented, and care outcomes evaluated on an ongoing basis. The technical skills, teaching, counseling, care management with other disciplines, and coordination of resources are exemplified in the care provided to Mr L.P. and his family. The family with a member diagnosed with cancer faces a series of sociological and psychological crises during the course of the disease. The family, as an aggregate and as individual members, will experience the disease in their own unique way. The type and severity of stress experienced by the family will depend on the patient's developmental stage and on the concomitant developmental stages of individual members. For example, the issues related to a cancer diagnosis of a school-age child, a parent in a child rearing family, or an elderly person living alone are widely varied. The periods of crisis experienced by the family are
191
interpersonal and social-psychological, within the context of the family patterns and processes. Adaptation to the uncertainty of cancer as a chronic illness exists as a subtle stressor. The threat of relapse, recurrence, or decline may require further support to strengthen family functioning.~l THE COSTS OF HOME CARE As more is known about providing care for cancer patients at home, the direct and indirect costs of care are becoming more clearly appreciated. The movement to home care from the acute care setting has been fueled by the cost containment mandate. However, a multiplicity of indirect costs have shifted to the patient, the caregiver, and the family. Out-of-pocket financial expenses such as transportation, medications, respite services, as well as psychological morbidity affecting the health of the caregiver, family stability, emotional burden, and impact on the development of children are some of the hidden costs of care at home. Assessment of the needs of the patient and caregiver in the home care environment is essential to determine if the resources available in the home will support successful implementation of the plan of treatment. The functional level of the patient, not the diagnosis or disease status, affects the complexity of the home care plan and, therefore, the costs of care.12-14 The need for physical or supportive care may exceed that which the family can provide. Patients and spouses in particular may experience emotional distress due to the diagnosis of cancer and complicated by the discomfort of side effects of therapy. These stresses include uncertainty, lifestyle disruption, physical care difficulties, role alterations, financial concerns, and difficulty in obtaining information about the disease, treatments and the health care system. When evaluating the cost-effectiveness of home care, the family situation, the complexity of the care required, the ability of the family to provide the care, and the tangible and intangible resources needed for the caregivers care must be considered, if-is Home health agency resources must be developed and allocated to support the patient care staff, including educational opportunities to promote staff competence and measures to optimize worksite safety, especially in unfamiliar neighborhoods and residences. An awareness of safety issues within the community must be maintained.
192
LYNNE E. McENROE
CONTINUITY OF CARE
Table 3. Advantages and Disadvantages of Home Care
As home health care continues to evolve as a significant segment of the health care system, issues related to consumerism and technological options available in the home must be examined. Treatments initiated in the hospital or outpatient setting may require referral to a home health agency for continuation of teaching and support. Home infusion therapy provides the opportunity for patients to assume greater participation in their care and emphasizes the need for them to acquire substantial knowledge about their disease and its management. Assessment and evaluation of the patient's or the caregiver's ability to manage specific care skills is required to determine the feasibility and appropriateness of home health services as a care option. Continuity of care is maintained when patients require ongoing monitoring or continued therapy at home. Home health nurses serve as a pivotal communication link between the patient and other members of the health care team, including the physician, laboratory, and pharmacy. Patient and family teaching, direct patient care, and coordination of services are major responsibilities of the home health nurse. 19 The advocacy role of the home health nurse has expanded substantially as reimbursement structures continue to change in an effort to decrease
Advantages
Disadvantages
Decreased direct expenses Convenience for patient and caregiver Increased sense of control Improved quality of life for patient
Increased out-of-pocket expenses Increased care demands Emotional strain Complicated daily routine
direct health care expenditures. Effective communication with third-party payors, especially within managed care systems, emphasizes the nurse's role in ensuring reimbursement for needed services. As managed care systems continue to influence health care delivery, finite hospital length of stay increases the need for services at home. Table 3 summarizes the advantages and disadvantages of providing care in the home setting. CONCLUSION
As the home is recognized as a principal site for health care, the family and community resources become essential components of the system necessary to achieve positive outcomes of care. The expertise of the home health nurse and the need to empower patients and caregivers to participate in health care decisions and practices reflect the values underlying the current social imperative to c o n t r o l c o s t s . 5,2°
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