7. Clients Receiving Home Health & Hospice Care PDF

‫إن الحاجة إلى الرعاية الصحية في املنزل تتزايد بشكل متسارع‪.‬وقد ساهمت التغييرات‬ ‫الجذرية في التمويل وزيادة عدد األشخاص الذين يعانون من أمراض معقدة في هذا‬ ‫االتجاه‪.‬على سبيل املثال‪ ،‬أجبرت حاالت الخروج املبكر من املستشفى الناتجة عن جهود‬ ‫الجهات الدافعة الخارجية نحو احتواء التكاليف العمالء ع...

‫إن الحاجة ‫الجذرية في التمويل وزيادة ‫االتجاه‪.‬على سبيل املثال‪ ‫الجهات الدافعة الخارجية ‫للتعافي من العمليات ‫يعيش عدد ‫معقدة تهدد ‫يتم توفير التقنيات ‫الحيوية الوريدية‪ ‫امليكانيكية ‫مع تقدم السكان في السن‪ ‫املواليد في سنواتهم املتقدمة‪ ‫تحديًا يتمثل في االستجابة ‫تسعى وكاالت الرعاية الصحية ‫استقالل العميل وتقليل آثار ‫غير املؤسسية‪.‬‬ 32 Clients Receiving Home Health and Hospice Care “People from all walks of life agree KEY TERMS CMS (Centers for Medicare Hospice and Medicaid Services) Medicare home health Community-based long-term benefit care Medicare hospice benefit Homebound LEARNING OBJECTIVES Upon mastery of this chapter, you should be able to: Summarize the history and contemporary circumstances of home health and hospice care. Describe Medicare standards for home health and hospice programs. Explain family caregiver burdens of providing home care. Explain how Medicare reimburses home health and hospice care. Describe essential characteristics of home hospice nursing practice. 1042 UNIT 8 Settings for Community A home health nurse sits in an upscale condominium oxygen unit and suffering air hunger as he struggles full of vigor, and taking on the world. During sure sore that has become smaller and cleaner through with wound care teaching. Next, she monitors discharged to his aging bungalow, detecting early home in close collaboration with his physician. family chaos with a mother in pain and vomiting and the patient comfortable. These are the kinds work with home care and hospice clients. Indeed, practice what some see as the very heart of compassionate care and hospice programs are expanding and are Home health care is discussed in the first care. The reader is also referred to the discussions violence in families, Chapter 24 on care of the OVERVIEW OF HOME HEALTH CARE The need for health care at home continues to acceler- ate. Drastic changes in financing and more people liv- ing with complex illness have contributed to this trend. For example, early hospital discharges resulting from third-party payers’ efforts toward cost containment have forced clients to return home quickly to recuperate from surgeries and severe illnesses. Likewise, a grow- ing population survives and yet suffers from complex chronic and life-threatening illness that they struggle to manage at home. Advanced technologies such as tele- health monitoring, intravenous (IV) antibiotics, total parenteral nutrition (TPN), dialysis, and mechanical ventilation are routinely provided and maintained in the client’s home. As the population ages, and particu- larly now that the baby boomer generation is entering their elder years, home health nursing is challenged to respond. Professional home health care agencies seek to maximize the client’s level of independence and to mini- mize the effects of existing disabilities through noninsti- tutional services. Professional home health services aim to decrease rehospitalization and prevent or delay insti- tutionalization (National Association for Home Care and Hospice [NAHC], 2010; Wajnberg, Wang, Aniff, & Kunins, 2010). The NAHC Web site provides a variety of direct services to members, including the publication Caring and monthly newsletters. This section explores the evolution of home health care in the United States; describes home health agen- cies, clients, and personnel; and examines Medicare criteria and documentation. Finally, the unique charac- teristics of home health nursing are explored. HISTORY AND POLITICS OF HOME HEALTH Throughout human history, health care has been provided at home by family members. In the United States, the Ladies Benevolent Society in Charleston, CHAPTER 32 controlled their own practice, services under the new benefit were viewed as extensions of medical care, with physicians certifying needed services for short-term treatment of sickness. The number of Medicare-certified home care agen- cies grew rapidly until enactment of the Balanced Budget Act (BBA) of 1997, which sought explicitly to reduce fed- eral payments for home health care. To achieve this, pay- ment to providers was changed from reimbursement for each visit to the Medicare prospective payment system that determined Medicare payment rates based on patient characteristics and need for services (Kulesher, 2006). The BBA resulted in a closure of 30% to 36% of the nation’s Medicare-certified home health agencies and a dramatic decline in the number of patients served, with particular impact on the most vulnerable patients over 85 years old who needed intensive services. As a result, some agen- cies denied care to those whose complex nursing needs exceeded expected reimbursement. Both cost and num- ber of visits declined while rates of wound healing fail- ures, incontinence, and psychosocial problems worsened (Schlenker, Powell, & Goodrich, 2005). The long-term effect on emergency care and hospitalization, as well as diminished patient contact and increased documentation associated with these restrictive Medicare policies, was felt. This shift in service provision also impacted home health nurses, who are most satisfied when they have control over their practice and able to provide quality patient care (Ellenbecker, Boylan, & Samia, 2006). With enactment of the Patient Protection and Affordable Care Act, many provisions are currently and will likely continue over the next decade to impact the provision of home health care. Although many of the Medicare policies for home care are unchanged, the act includes a number of new programs that if well imple- mented, will have a positive impact on home care. For instance, supplemental payments for rural home care providers have been reinstated for 2010 to 2015. This was done to address the lower ratio of home care pro- fessions in rural areas throughout the United States as compared to more urban areas (Centers for Medicare and Medicaid Services [CMS], 2010). New innova- tions included in the act are two programs that directly impact the provision of care in the home (CMS, 2012d): Community First Choice Option allows states to offer home- and community-based services to dis- abled people through Medicaid rather than institu- tional care in nursing homes. Community Care Transitions Program helps high- risk Medicare beneficiaries who are hospitalized avoid unnecessary readmissions by coordinating care and connecting patients to services in their communities. While the new provisions can enhance the capacity of agencies to provide care, as with any change the new rules and regulations will undoubtedly be a challenge. One concerning aspect for home health care provid- ers is the 2012 ruling by the Supreme Court (National Federation of Independent Business et al. vs. Sebelius, Secretary of Health and Human Services) that allows for 1044 UNIT 8 Settings for Community money, they reinvest it back into the agency. Voluntary agencies are usually governed by a voluntary board of directors; they are considered community-based because they provide services within a well-defined geographic location. Whereas in the past VNAs were assured of receiving almost all of the home care referrals in their community, the proliferation of other agencies has eroded their traditional base and put them in a competi- tive mode. The number of nonprofit home health agen- cies is diminishing across the country. Hospital-based agencies comprise about 13% of Medicare-certified agencies (NAHC, 2010). A hospital may operate a separate department as a home health agency. It may be nonprofit or generate revenue for the hospital. Hospital-based agencies are governed by the sponsoring hospital’s board of directors or trustees. The referrals to such hospital-based agencies usually come from the hospital staff, and the missions of the agency and the sponsoring hospital are similar. The same is true for rehabilitation and skilled-nursing facilities with home health departments. For-profit proprietary agencies can be governed by individual owners, but many are part of large, regional, or national chains that are administered through cor- porate headquarters. Proprietary agencies are expected to turn a profit on the services they provide, either for the individual owners or for their stockholders. They are required to pay taxes on profits generated. Although some participate in the Medicare program, others rely solely on “private-pay” clients. For-profit home care agencies now comprise over 60% of all Medicare- certified agencies and over 70% of all certified free- standing agencies (NAHC, 2010). Some city and county government agencies also pro- vide home care services. They are created and empow- ered through statutes enacted by legislation. Services are frequently provided by the nursing divisions of state or local health departments and may or may not combine care of the sick with traditional public health nursing services, including health promotion, illness prevention, communicable disease investigation, environmental health services, and maternal–child care. Funding comes from taxes and is usually distributed on the basis of a per capita allocation. Many agencies providing services in the home remain outside the federal Medicare system that reim- burses skilled nursing. These noncertified agencies are usually private and derive their funding from direct payment by the client or from private insurers. They may be governed by individual owners or by corpora- tions. For instance, some agencies offer “private duty” shifts of registered nurses, licensed practical nurses, various therapists, or home health aides who are usu- ally paid for “out of pocket” rather than reimbursed by insurance or Medicare. Other services include assistance in the home with homemaking or housekeep- ing. Some of these agencies provide live-in personal Some organizations provide durable medical equipment (DME), such as wheelchairs, commodes, beds, or oxy- gen. Other services provide high-technology pharmacy services. CHAPTER 32 agencies. Home care aides, physical therapy staff, pational therapists, social workers, and administrativ personnel comprise the rest of the home health team. The business and office personnel of a home health agency are critical to the agency’s ability to deliver ser- vices to clients. Home health nurses must acquire an understanding of the financial aspects of their clients’ care and provide this information to the agency staff, so that appropriate and full reimbursement can be obtained for the services provided. REIMBURSEMENT FOR HOME HEALTH CARE Home health services are reimbursed by both corpo- rate and governmental third-party payers as well as by individual clients and their families. Corporate payers include insurance companies, health maintenance orga- nizations (HMOs), preferred provider organizations (PPOs), and case-management programs. Government payers include Medicare, Medicaid, the military health system (TRICARE), and the Veterans Administration system. These governmental programs have specific conditions for coverage of services, which are often less flexible than those of corporate payers. For a general description of these reimbursement systems, see Chapter 6. The Medicare policies for home health programs set the precedent for all other reimbursement sources and are discussed below. Medicare Criteria and Reimbursement Medicare is the largest single payer for home care ser- vices in the United States and has set the standard in establishing reimbursement criteria for other payers. Therefore, it is essential that home care nurses seek to understand the complex Medicare home health require- ments and rules for determining eligibility for services. It is important to acknowledge that a person may be in dire need of care at home, yet not ity standards for home health care under Medicare. criteria must all be met to be eligible for reimbursement by Medicare (Display 32.1). Consider the implications of these requirements. Documentation must justify that the plan of care is medically “reasonable and necessary.” The person must be under the care of a physician. He or she must be “homebound” and in need of services that Medicare narrowly defines as “skilled.” A person who is “homebound” must be confined to home except for visits to the physician, outpatient dialysis, adult day cen- ter, or outpatient chemotherapy and radiation therapy. “Skilled” services are restrictively defined and include selected aspects of nursing, physical therapy, or speech therapy. Home visits must be “intermittent” and time limited. Extensive documentation is required according to Medicare specifications. All of these requirements are subject to contradictory interpretations, which can put an agency’s reimbursement at risk. The Medicare prospective payment system (PPS) pays an agency for a 60-day “episode of care.” All services and many medical supplies must be provided 1046 UNIT 8 Settings for Community them. They also required payment adjustment based on agency submission of data on selected quality In 2007, the Medicare Payment Advisory Commission (MedPAC) recommended to Congress that payments be frozen and that patients co-pay for each illness visit (Markey, 2007). These proposals overlooked the real- ity that home health care is a cost-effective alternative to hospital and nursing home care. As home health care is restricted to save money and reduce fraud, greater amounts will need to be spent for inpatient care when people cannot cope in the absence of health care assistance at home (see Perspectives: Voices From the Community). With the implementation of the Affordable Care Act, the provision that certification for Medicare home health services and recertification every 60 days no lon- ger requires a face-to-face encounter by a physician and now provides for certification by a nurse practitioner, a clinical nurse specialist (CNS), certified nurse-midwife, or physician assistant (CMS, 2010). While this change will likely result in a reduction in cost for certification/ recertification, home care agencies without a nurse prac- titioner or certified nurse specialist on staff contract out for those services. Current CNS specialty certification most appropriate for home health care includes adult health, gerontological, and adult-geron tology (pending). Unfortunately, CNS certification is no longer available for home health nursing or public/com- munity health nursing (American Nurses Credentialing Center [ANCC], 2012). The need for advanced practice nurses in these specialties will very likely increase the number of certified nurses working or contracted by home health agencies and increase the need for master’s level educational preparation. PERSPECTIVES VOICES FROM THE COMMUNITY It is vital to develop an expanded vision about of frail elders and the kinds of services that nity. Sometimes, after nurses have been working in Medicare home health for a while, they may begin to identify with the Medicare guidelines. Too often, I have heard experienced say about a patient living with severe chronic deserve services. She doesn’t have skilled would hope knowledgeable nurses would say to sion makers, “She needs and deserves services, but the Medicare home health benefit will not pay for them. Our agency cannot con- tinue to provide care because of the limits everything possible to find help for her, but This kind of insight leads to patient advocacy, munity networks, and becoming outspoken about needed changes in health policy. Visiting nurses witness the ill people living at home; we must not abandon them. —Beth match the plan of care. Likewise, OASIS identified and Plan of Care services must match. HOME HEALTH NURSING PRACTICE The practice of home health nursing has roots in com- munity/public health nursing (see Chapter 3). provides home health nursing care to acute, chronic, and terminally ill clients of all ages in their integrating public health nursing principles that focus on the environmental, psychosocial, economic, cul- tural, and personal health factors affecting family’s health status and well-being. Home unique field of nursing practice that requires of public health nursing principles with the practice of medical/surgical, geriatric, mental and other nursing specialties. The official journal Home Healthcare Nurses Association (HHNA), Home Healthcare Nurse, is the primary source of up-to-date nursing knowledge in this rapidly changing field of practice. The stories of home health nurses emphasize shared humanity and promotion of client autonomy (Stulginsky, 1993a, 1993b). The effective home health nurse must: Deliberately build trust Sense “where people are” and suspend judgment Develop a connection at the first visit Develop “giant antennae” to detect cues in the home Face persistent distractions during home visits Help people solve their own problems Keep priorities fluid Determine how to keep the unstable client safe until the next visit Thoughtfully maintain boundaries between per- sonal and professional life “Make do” with limited supplies Face immense challenges with time management and paperwork demands Constantly think of personal safety in neighbor- hoods and homes Nursing Practice During the Home Visit The practice competencies of home health nurses can be illustrated with the Home Health Nursing Caregiving Wheel (Fig. 32-1). Loca ti n g t h e C l i e n t a n d G e t t i n g Thr ou gh the D o o r The first step in making a home visit is finding where the person lives, which might involve telephone instruc- tions, a map, or a global positioning system (GPS) unit. For most home health nurses, locating clients involves driving their own cars to the home. Sometimes nurses drive agency cars, and occasionally transportation may involve a bus, subway, boat, or airplane. Directions and household identification can be unclear. In rural areas, tracking down clients can involve vague instructions involving barns, bridges, trees, and other colorful local 1048 UNIT 8 Settings for Community From the Case Files I Locating the Client’s Home “You can’t miss our place,” Diane had reassured me on the phone. I slowed in front of the decrepit Sunrise Motel, its roof partially collapsed, and reviewed my notes. I was supposed to turn right on the unmarked gravel road just after the aban- doned motel and continue until the road ended. I proceeded slowly through an evergreen tunnel past an old green truck body resting belly up. A little girl, perhaps 5 years old, came from around the truck and joined two grade-school-aged boys playing Frisbee in a clearing. I asked them where Diane Quimby lived, and they pointed around a curve in the road. In a moment, I came to a stop near a large wood and metal shed with smoke coming out of a crooked metal pipe in the roof. I knocked. No answer. I heard dialogue from “General Hospital” coming from inside. I knocked again and shouted, the nurse.” “Come on in!” a loud voice responded. I pushed open the door. There was no knob. Illuminated by one weak lamp, I could just make out a round face with wire rim glasses and a long gray-blond braid. Here was Diane, sitting on a sagging sofa facing a TV tray ing black-and-white television. I could see a wooden table in prevent it.” Since these well-tested relational strategies for developing caring connections run contradictory to the current Medicare requirements for immediate com- pletion of the lengthy OASIS survey tool on admission, the wise nurse needs to focus on sensitively developing initial connections as well as completion of the OASIS. H u b o f t he Fa m i l y C a r e g i v i n g W he e l: Pro m ot i ng Se l f - M an a gem e nt Home health nursing involves home visits to promote independence rather than dependence on the home health team. Lasting health improvement is only pos- sible when the home health nurse works with the cli- ent/family to make decisions that are truly their own. Although financial incentives push home health nurses to minimize the number of visits and duration of service, pressuring a client or family to adopt the agency agenda denies any sense of partnership and can backfire, result- ing in nonadherence to the therapeutic regimen. This can place a nurse in a no-win situation. Every effort is made to develop capacity for self- care, so that the home team can safely withdraw. Obviously, this is quite appropriate for those recovering from an episode of acute illness, but it can be quite dif- ficult when clients are living with severe chronic illness and do not have adequate caregivers to provide needed care without outside nursing assistance. Pressures to CHAPTER 32 questions are endless. Sometimes the underlying etiolo- gies of illness can be discovered by scrutinizing the “big picture” in the home. The OASIS format provides the baselines for the first visit, and then the nursing assess- ment broadens with each visit as the nurse continu- ally widens his or her lens to take it all in. Home visits reveal discoveries that can never be imagined in clinic or hospital settings. Take for example the client whose refrigerator no longer chills and whose impaired vision prevents awareness of the expanding family of roaches in the kitchen. Spok es of t h e H o m e H e a l t h C a r e giv ing Whe el : C o l l a b o ra t i n g , Mo b i l i z i n g, Stren g the n i n g , Te a c h i n g , S o l v i n g Pro b l em s Home health nursing competencies that radiate from the hub and contribute to promotion of self-care and fam- ily care include collaborating with multiple team mem- bers and mobilizing resources in the community that can sustain the client after discharge. The home health care nurse usually is the coordinator of all other home health team members. Working with the social worker, the nurse proposes needed connections with community services. Likewise, strengthening involves development of self-management or family caregiving ability. People learn that they can give injections, manage IV lines, safely take complex drug regimens, provide rehabili- tation for loved ones after stroke, and perform count- less other skills that they do not believe possible until a nurse shows them and they discover that they can do it themselves. The home health nurse is constantly teaching clients and/or family caregivers through concrete explanation, discussion, and modeling behavior. Teaching facts is no assurance of behavior change and improved manage- ment of a health problem. Underlying factors influenc- ing health behavior must be diagnosed and addressed. Health coaching, also called motivational interviewing, has demonstrated effectiveness in improving chronic disease management by getting the patient and family to be actively involved (Huffman, 2007). Instead of telling people what to do, this involves asking people how they would like to change, “What worries you the most?” Those concerns and relevant feelings must be validated, and the nurse leads the person to consider options for change. The solution develops through a mutual, par- ticipatory process. Ultimately, people are responsible their own health decisions. Finally, home health nursing competency requires flexibility and creativity in solving health care problems and the challenges of everyday living. All outcomes of care can be achieved only by adapting to the skills and resources available in the home. Although people socioeconomic backgrounds present with severe health problems requiring home health nursing, many families live on the margins. Inderwies (in Cohen, 2007) vividly describes her 32 years of visiting the “have-nots, nots, and will-nots” (p. 15). By this, she refers to people living on the margins of society who have few resources, 1050 UNIT 8 Settings for Community debilitated and may be immunocompromised; in addi- tion, many are now dwelling at home with invasive medical devices that make them especially vulnerable to infection. Likewise, nurses are challenged to con- sider how to protect the home health care team, family, and community from a client with contagious disease. In such cases, all people living in the home will need instruction. Some households have inadequate facilities to control disease transmission. There may be no access to running water, no heating unit to boil equipment, or inadequate facilities to dispose of contaminated equip- ment. These conditions necessitate the development of creative solutions to control infection. Complexities of the home environment require the nurse to care- fully consider exactly how microorganisms are likely to exit the body, how might they be transmitted, and how are they likely to enter the body of another indi- vidual. Households cannot be organized like hospital units with isolation rooms. The nurse must decide when gloves are absolutely essential, when protecting clothing with a gown is needed, when a mask should be worn, and what environmental surfaces are likely to be contaminated and must be scrupulously cleaned. How should soiled tissues or dressings, dishes, and laundry be handled? What is realistic and can actually be carried out by client and family? As in the hospi- tal environment, hands are the main vehicle for trans- mission of contagion, and hand hygiene is the main intervention that must be emphasized. To guide the nurse, home health agencies have adapted infection control policies and procedures based on the Centers for Disease Control and Prevention’s (CDCs) isolation precautions for health care settings (Siegel, Rhinehart, Jackson, Chiarello, & Healthcare Infection Control Practices Advisory Committee, 2011). Me d i ca ti on Sa fe ty Home health nurses assume major responsibility for medication safety. The home health client taking mul- tiple medications is at particular risk of multiple errors in self-administration, including incorrect medication, dose, time, interval, or route. Often doses are missed or doubled. Clients may discontinue a drug or not complete the full course. Sometimes, the drug or drugs ordered are inappropriate considering the patient’s con- dition at home. The home presents risks of medication errors that are different from those found in hospital or nurs- ing home. Every visiting nurse has stories of finding drawers and cupboards filled with multiple prescrip- tions from multiple physicians, some current and some many years old. Polypharmacy becomes very obvious in the home setting. Clients taking at least one poten- tially inappropriate medication were found by Bao and colleagues to be at greater risk when they received Medicare- or Medicaid-provided services (Bao, Shao, Bishop, Schackman, & Bruce, 2011). Using data from the 2007 National Home and Hospice Care Survey, 38% of elderly home health clients were taking one or more potentially inappropriate medications and the effects on gait and balance, urinary urgency, impaired hearing or vision, alcohol or drug abuse, and medication effects impairing alertness, balance, urinary frequency, and blood pressure. Clients should be observed as they move through their home and carry out activities of daily living. It is important to investigate factors that obstruct movement or threaten balance. The nurse in the home should inspect sidewalks, stairs, and surfaces outside the home; floor, rugs, electrical cords, stairs, lighting, and clutter inside the home; kitchen safety; and bathroom features including grab bars and a raised seat for the toi- let and safety modifications for the bathtub. Common home modifications, such as eliminating throw rugs and loose mats and the use of nonslip bath mats, have a significant protective effect. Display 32.3 lists teaching guidelines to prevent falls. Te c h n o l o gy at Ho m e Home health nurses teach patients and their family to manage a wide array of complex technologies. Home regimens often require mini-intensive care units. In the past, the average home had a limited capacity nology; medication was swallowed and food and fluid were consumed with the aid of fork and spoon. Now, the IV needle has evolved into venous access plastic IV fluid bags can be stacked in the refrigerator and hung from the arm of a lamp. The household becomes home to dialysis, ventilators, enteric and IV nutrition, and vasopressors—the list goes on. Nurses teach and families to manage it all; we become the guardians DISPLAY 32.3 TEACHING TO PREVENT FALLS Discuss fear of falling as then urge preventive approaches. Identify environmental hazards and explain need for change. Encourage highest possible level of physical activity considering ability. Explain importance of reporting health status changes that increase risk of falls. Explain importance of recognizing sensory changes and correcting immediately. Teach regular blood pressure monitoring. Emphasize slowing down when moving and changing positions. Emphasize safe footwear and foot care. Explore strategy for responding to a fall, including calling for help and getting up. Demonstrate safe body mechanics to lift heavy objects and to move immobilized family members. Modified from Stanley, M., Blair, K. A., & Gerontological nursing: Promoting successful (3rd ed.). Philadelphia, PA: F.A. Davis, with 1052 UNIT 8 Settings for Community DISPLAY 32.4 SAFE HOME VISITS Carry a cellular phone. Be sure the agency knows your itinerary. Clarify directions before travel. Carry a map. Make joint visits or request security escort if safety is threatened. Refuse to visit when there is strong evidence of personal danger. Consult the police. Call to schedule the visit and do not go into the home without invitation. Dress simply without expensive jewelry. Do not carry large amounts of cash. Keep wallet or purse locked in the car. Wear an agency badge. Follow family directions about how to get by in their neighborhood and when to come in or leave their home. Patients and families usually will protect their nurse. DISPLAY 32.5 HEALTHY PEOPLE OBJECTIVES Remember that Healthy People 2020 has four overarching goals: (1) to attain high-quality, lon- ger lives free of preventable disease, disability, injury, and premature death; (2) achieve health equity, elimi- nate health disparities, and improve the health of all groups; (3) create social and physical environments that promote good health for all; and (4) promote qual- ity of life, healthy development, and healthy behaviors across all life stages. A vital concept for elders is that of “compressing morbidity.” This means that we seek to promote healthy lives and to diminish (compress) the time they are suffering with disabling health care system developed to provide long-term for the elderly and those with chronic illness should maximize function and independence. How might such a system work? What role does the home care or hospice nurse have in meeting the Healthy People 2020 objectives? Review the Healthy People objectives and see what objectives apply to home care and hospice. These are a sample of specific HP 2020 objectives related to home health and hospice care: Access to Health Services: AHS-1 Increase the proportion of persons with health insurance AHS-2 Increase the proportion of insured per- sons with coverage for clinical preventive services strangers. Uncertainty and denial often prevail during the final stage of life because prognoses are uncertain and many serious illnesses are now treated aggressively until the last breath. The battle against the death seems to be the primary emphasis, with patient, family, and professionals wanting to believe that it is possible to win the final struggle. In the 21st cen- tury, fatal conditions have been turned into expensive chronic illnesses. Too often, discomfort is not relieved and treatment causes further suffering. And as the period of disability extends and the body deteriorates, social isolation develops. The modern preoccupation with action, productivity, and beauty has little inter- est in the process of dying. In dramatic contrast to the dehumanization of death, the hospice movement has developed to humanize the end-of-life experience and provide palliative care. Palliative interventions relieve suf- fering without curing underlying disease. The hospice movement has emphasized four major changes in end- of-life care: (1) Care should attend to body, mind, and spirit; (2) death must not be a taboo topic; (3) medical technology should be used with discretion; and (4) cli- ents have a right to truthful discussion and involvement in treatment decisions (McIntosh & Zerwekh, 2006). Table 32-1 contrasts mainstream medical focus with hospice. This section explores the evolution of hospice care in the United States, describes hospice agencies, Table 32.1 Contrasts Between Home Health and Hospice Hospice Emphasis is on quality of life and comfort. Focus is on health of whole family. Plan of care is guided by client choice. Nurse is case manager until death. Client chooses how to live last days. Intermittent visits increase in frequency as death become imminent. Nurses are expert in symptom control. Sedatives and opioids are expertly adjusted End-of-life disease course is managed to avoid crises. Goal is for symptoms at end of life to be managed at home if possible. Spiritual care is focus of whole team. Survivors have bereavement support. Adapted from Zerwekh, J. (2002). Home care of permission. 1054 UNIT 8 Settings for Community Hospice characteristics have changed over time. Initially, nearly all clients suffered from terminal cancer; presently, people with a variety of end-stage diseases are admitted. Diseases that were once rapid death sentences have now turned into chronic life-limiting diseases. With prognoses difficult to predict and denial of death a continuing issue, hospice referrals are now made very late in the disease process. Brief hospice stays make it difficult to significantly help families and clients before death occurs. Another transition in hospice is the move from charity to business (McIntosh & Zerwekh, 2006). With highly reliable Medicare payment, for-profit hos- pices have expanded and are competing in many com- munities for the hospice “market share.” HOSPICE SERVICES AND REIMBURSEMENT As in home health care, Medicare has determined the way services are provided. The Medicare hospice benefit requires that a client who has a prognosis of 6 months or less must sign up for the comfort-focused hospice benefit and waive the regular hospice benefit. This man- dates that the client acknowledges a terminal prognosis and chooses comforting care instead of life-extending care. When this choice is made, the hospice coordinates care in all settings, functioning both as clinical and financial case manager (McIntosh & Zerwekh, 2006). The government pays a flat rate to the hospice for each day the patient receives care. There are four payment levels: (1) routine home care with intermittent visits, (2) continuous home care when the patient’s condition is acute and death is near, (3) inpatient hospital care for symptom relief, and (4) respite care in a nursing home to relieve family members. Eighty percent of care has to be provided at home or in a nursing home that has become the person’s permanent residence. Hospices coordinate home care and direct inpatient care if needed. The emphasis is on palliation, with a focus on physical, psychosocial, and spiritual comfort. A strong emphasis is placed on caring for the entire fam- ily. The hospice team includes nurse, physician, home health aides, physical and occupational therapists, social workers, volunteers, palliative medication and medi- cal equipment specialists, and bereavement counselors. Staff meet regularly to explore together the challenges of assuring comfort at the end of life. Volunteers fill an important need in hospice care. They act as companions to the client when the family must be somewhere else or is away for short respite. They run errands for family members, shop, organize hot meals prepared by friends and neighbors, provide child care, and perform other services as needed. HOSPICE NURSING PRACTICE The nurse’s role is central in the hospice interdisciplin- ary team. The hospice nurse functions as case manager and visits the client more frequently than other of the team. Nurses work in close collaboration with physicians to assure management of symptoms often FIGURE 32-2. The hospice caregiving tree. providing hospice care. The hospice nurse seeks to understand the emotional and spiritual distress common to the end of life, particularly the progressive experience of loss after loss. Guided by that understanding, hospice nurses emphasize attentive listening to understand each individual’s unique story. This requires quieting your own thoughts to truly hear what is being expressed. Sometimes listening involves simply being present in the moment, paying attention. Having heard the client’s story, it is important for hospice nurses to speak hon- estly when other professionals and family feel obliged to keep being cheerful and positive. Hospice nurses openly seek to speak truthfully about many issues that can be painful to discuss. Speaking truth is visualized as encir- cling the entire top of the caregiving tree. bring up difficult subjects, so that the client is freed to speak about his greatest fears and concerns. Sometimes it leads to joint problem solving and encouraging choice through informed decision-making. After truth has been discussed and the client has made a decision, the hospice nurse often advocates for client wishes against the resis- tance of various authorities. Remember that these are the final decisions in a dying person’s life. Collaborating Interdisciplinary teamwork is an essential branch on the tree. Hospice team members communicate around 1056 UNIT 8 Settings for Community EVIDENCE-BASED PRACTICE Compassion Fatigue Do you wonder how hospice nurses with suffering patients who always die? Abendroth 216 nurses in 22 Florida hospices. They defined helping a person suffering from traumatic events. patient, feeling overwhelmed with work, feeling ing “bogged down” by the system, depression, central theme was intense identification with Staying healthy as a hospice nurse requires of a suffering person to understand his or usefulness and to retain our own emotional value of being able to debrief after experiencing emotionally by their agency and must also recognize sorrow, anger, and fear. Based on the work of Abendroth and Flannery, fatigue. One example you may find is the study survey of clinical, administrative, and allied relation between self-reported compassion satisfaction ciation between burnout and compassion fatigue. cat إلى الرعاية الصحية في املنزل تتزايد بشكل متسارع‪.‬وقد ساهمت التغييرات‬ عدد األشخاص الذين يعانون من أمراض معقدة في هذا‬ ،‬أجبرت حاالت الخروج املبكر من املستشفى الناتجة عن جهود‬ نحو احتواء التكاليف العمالء على العودة إلى منازلهم بسرعة‬ الجراحية واألمراض الشديدة‪.‬‬ متزايد من السكان ولكنهم يعانون من أمراض مزمنة‬ حياتهم ويجدون صعوبة في إدارتها في املنزل‪.‬‬ املتقدمة مثل مراقبة الصحة عن بعد‪ ،‬واملضادات‬ ،‬والتغذية الوريدية الكاملة‪ ،‬وغسيل الكلى‪ ،‬والتهوية‬ بشكل روتيني وصيانتها في منزل العميل‪.‬‬ ،‬وخاصة اآلن بعد أن دخل جيل طفرة‬ ،‬يواجه التمريض الصحي املنزلي‬ لهذا التحدي‪.‬‬ املنزلية املهنية إلى تعظيم مستوى‬ اإلعاقات املوجودة من خالل الخدمات‬ CHAP TE R that someone who is sick deserves, in principle, compassion and care.” —Paul Farmer, American anthropologist and physician Medicare prospective Palliative interventions payment system Potentially inappropriate OASIS (Outcome and medications Assessment Information Responsive use of self Set) Visiting nurse associations Identify unique challenges of infection control, medication management, fall prevention, use of technology, and nurse safety during home visits. Contrast the goals of home health care and hospice. Explain the gaps in home health care and hospice and the need for a coherent community-based long-term care program in the United States. health and 1041 Health Nursing with a frail, elderly gentleman tethered to his home to speak of the “good old days” when he was young, her next visit to a trailer park, she inspects an infected pres- with each home visit as the client’s wife carefully follows the pulmonary and cardiac status of a patient newly signs of cardiac decompensation and treating them at At that same time, her hospice nurse colleague walks into at the end of her life and then leaves with everyone calm of experiences that make up the daily lives of nurses who home health and hospice programs allow nurses to and highly skilled nursing care. Home health the work settings for more and more nurses. section of this chapter, followed by an overview of hospice in Chapter 19 on working with families, Chapter 20 on older adult, and Chapter 26 on chronic illness. South Carolina, made the earliest known (1813) orga- nized effort to care for the sick poor at home (Buhler- Wilkerson, 2007). Later in the 19th century, it became possible for women to become nurses trained in the manner of Florence Nightingale, and wealthy women began to hire them as visiting nurses and to sponsor visiting nurse services. In 1893, Lillian Wald began home visiting in New York City and is famed for pro- fessionalizing visiting nursing. One of her most famous innovations was the establishment of insurance cover- age for home care. Between 1909 and 1952, 100 mil- lion home visits were made to the policy holders of Metropolitan Life Insurance Company. Then, as now, the need for cost containment and therefore quick dis- charge were in diametric opposition to nursing goals of providing needed care at the patient’s side as long as needed. In the latter half of the 20th century, as hospitals became increasingly effective in providing acute care, more people survived to live with debilitating chronic illness and disability, and referral to home care was used to discharge those nonacute patients from the hospital (Buhler-Wilkerson, 2007). The visiting nurse associations (VNAs) struggled with patched-together community support until 1965, which began the era of the Medicare home health benefit, designed to respond to the medical needs of those convalescing from acute illness. The Medicare home health benefit was established with certain goals in mind. It was designed to provide intermittent home visits, in which nurses and therapists would instruct clients and families in self-care. Home health nursing was clearly differentiated from longer nursing shifts in which nurses stayed in the home for several hours at a time. The period of visiting was to be brief and provide direct personal care just temporar- ily until patients and families could care for themselves. Neither health promotion nor long-term care was val- ued or reimbursed. Families were expected to manage long-term care alone. Whereas nurses had previously Clients Receiving Home Health and Hospice Care 1043 states to opt out of the provision in the act to expand Medicaid services. With a growing percentage of pay- ments for home health coming from Medicaid, this is obviously of concern to care providers and consumers of care. Home health care expenditures from Medicaid are expected to exceed Medicare payments in the com- ing years. How this shift in payment source and the limitation that many states may impose on Medicaid coverage is unknown at this time. The CMS and other government Web sites provide a wealth of information for the providers of care, as well as consumers (CMS.gov; healthcare.gov). Despite the challenges, the recognition of improved outcomes and cost savings associated with home care as opposed to hospitalization and skilled nursing facility (SNF) stays is encouraging. Comparisons between these three forms of care from 2009 data showed that the average Medicare payment for 1 day of hospitalization or SNF were $6200 and $622, respectively, with a per visit cost for a home visit at $135. The cost difference is stagger- ing, especially when considering the improved outcomes from home visiting relative to hospital admissions alone (NAHC, 2010). Other studies provide well-grounded support of home health care services. Rahme et al. (2010) found that home care after hemiarthroplasty was associated with reduced risk of death within 3 months of discharge. Of concern in this Canadian study was the low receipt of home care (16%) at discharge. Stolee, Lim, Wilson, and Glenny (2011) conducted a systematic review to compare rehabilitation measures between home-based and inpatient rehabilitation for musculoskeletal disor- ders. Their findings supported home-based care with equal or improved outcomes in function, cognition, quality of life, and satisfaction with the intervention. The cost-effectiveness of home-based rehabilitation for older patients can be inferred by these findings. It is important to be aware that a distinct difference exists between professional and nonprofessional home care services provided to clients. Professional home care is provided by professionals with licenses, certification, or specific qualifications. These professionals typically work for home care agencies with internal and exter- nal standards that guide the provision of their services. Nurses, social workers, physical therapists, occupational therapists, and home health aides are examples of pro- fessional home care practitioners. In contrast, there are home care organizations that provide nonprofessional home care and those who sell equipment for home care. HOME HEALTH AGENCIES The mix of Medicare-certified home health care agencies includes voluntary nonprofits, hospital-based agencies, proprietary for-profit agencies, governmental agencies, or agencies not federally certified to provide care. Voluntary nonprofit agencies traditionally have a charitable mission and are exempt from paying taxes. They are financed with nontax funds such as donations, endowments, United Way contributions, and third-party provider payments. If nonprofit agencies make any Health Nursing CLIENTS AND THEIR FAMILIES The client in home health care is not only the individual patient but also the family and any significant others. The nurse must consider how the environmental, politi- cal, economic, cultural, and religious dimensions impact the client’s illness and ability to meet the goals outlined in the plan of care. Home care recipients are predominantly White women. More than two-thirds are over age 65 (NAHC, 2010). The most common diagnoses managed at home are diabetes, chronic skin ulcer, essential hypertension, heart failure, and osteoarthritis. Most home health cli- ents are admitted after hospitalization (48%), but an increasing number (38%) are admitted directly from the community (NAHC, 2010) Individuals recovering from severe illness or living with debilitating chronic illness rely on family mem- bers or other sources of unpaid assistance. Almost 30% of the US population provides informal caregiving for an adult family member or friend (National Alliance for Caregiving [NAC], 2012). Two-thirds of these pro- viders are women with an average age of 47, although people can become caregivers at any age. Frail elderly caregivers are especially vulnerable to deterioration of their own health due to their caregiving burden. Family caregiving tasks range from personal care such as bath- ing and feeding to sophisticated skilled care, includ- ing managing tracheostomies or IV lines. Primary caregivers are those who assume the daily tasks of care, while secondary caregivers assume intermittent respon- sibilities such as shopping or transportation. On aver- age family caregivers provide 20 hours per week in the provision of care; 13% provide over 40 hours (NAHC, 2010). These informal caregivers assume a considerable physical, psychological, and economic burden in the care of their loved one at home. When layered on top of existing responsibilities, caregiver tasks compete for time, energy, and attention. As a result, caregivers often describe themselves as emotionally and physically drained and may very much need information about resources to assist them. Likewise, the economic cost of providing home care places a significant burden on informal caregivers. Out-of-pocket expenditures include medications, transportation, home medical equipment, supplies, and respite services. These costs may be nonre- imbursable and are often invisible, but they are very real to families struggling to provide care on a fixed income. While family members compassionately assume their responsibilities, their collective burden in our society as a whole is mounting. Home health nurses must con- tinually assess the strain on caregivers as they seek to develop realistic plans of care. unskilled HOME HEALTH CARE PERSONNEL care. The largest number of home care employees are nurses and home care aides (NAHC, 2010). Registered nurses and licensed practical nurses represent just under half of full time equivalent (FTE) positions in Medicare-certified Clients Receiving Home Health and Hospice Care 1045 occu- e DISPLAY 32.1 MEDICARE HOME HEALTH ELIGIBILITY 1. The type of services and frequency provided must be reasonable and necessary. To deter- mine whether this criterion is met, the client’s current health status, medical record, and plan of care are evaluated. If a care plan has been ineffective with a client over a long period of time, continuation of that care plan would not be considered reasonable. Therefore, compre- hensive documentation is essential to validate that the provided care was both reasonable and necessary. 2. The client must be homebound. This means that the client leaves the home with difficulty and only for medical appointments or adult day care related to the client’s medical care. 3. The plan of care must be entered onto specific Medicare forms. The forms require very specif- ic information regarding the client’s diagnosis, prognosis, functional limitations, medications, and types of services needed. The home health nurse often has the primary responsibility for ensuring that the forms are completed appro- priately. 4. The client must be in need of a skilled service. In the home, skilled services are provided only by a nurse, physical therapist, or speech thera- pist. Skilled nursing services include skilled observation and assessment, teaching, and per- forming selected procedures requiring nursing judgment. 5. Services must be intermittent and part-time. home care meet eligibil- Five under the payment amount adjusted to geographic location and determined by the patient’s clinical and functional status at the start of care, as well as the pro- jected need for services over the anticipated 60-day period (CMS, 2012a). When the patient is admitted, the patient is comprehensively assessed using a lengthy tool called the Outcome and Assessment Information Set (OASIS). Clinical, functional, and service scores are cal- culated from selected OASIS items. The stated purpose of OASIS is to: “represent core items of a comprehensive assessment for an adult home care patient; and form the basis for measuring patient outcomes for purposes of outcome-based quality improvement” (CMS, 2012c). In the ongoing campaign to hold down the federal bud- get by diminishing health costs, home health care faces the ongoing threat of freezes or cuts in payment. For example, in the spring of 2007, the Centers for Medicare and Medicaid Services (CMS) proposed reduction in reim- bursement, justified by their claim that patients’ needs have been exaggerated in documentation submitted to Health Nursing Medicare Documentation measures. Initially, every patient must be assessed using the OASIS tool, which determines reimbursement, is integral to agency surveys and certification, and collects informa- tion used to measure quality. OASIS assessment requires combining observation and interview to determine functional status, since clients often report what they wish to be true, rather than actual ability (Godfrey, 2005). Selected quality outcomes are measured and data released on the CMS Web site (CMS, 2012b), which is accessed as “Home Health Compare” (http://www. medicare.gov/). Display 32.2 identifies selected quality measures. Note that the expectation is that of improv- ing function, not simply stabilizing function, and con- sider the implications of this standard for very disabled patients. The Medicare Plan of Care is also completed by the nurse at admission; it must be signed by the physician. It is then used to assess agency compliance with Medicare and state requirements. Obviously, great pains must be taken to assure accuracy. All follow-up services must may have to - DISPLAY 32.2 SELECTED HOME HEALTH QUALITY MEASURES Higher Percentages Are Better Percentage of patients who get better at walking or moving around Percentage of patients who get better at getting in and out of bed Percentage of patients who have less pain when moving around Percentage of patients whose bladder control improves Percentage of patients who get better at bathing the health care needs Percentage of patients who get better at taking are needed in the commu- their medicines correctly (by mouth) Percentage of patients who are short of breath less often home health nurses Percentage of patients who stay at home after illness, “She doesn’t an episode of home health care ends Percentage of patients with improvement in needs.” In contrast, I status of surgical wound families and deci- Lower Percentages Are Better Percentage of patients who had to be admitted imposed on us. We’ll do to the hospital Percentage of patients who need urgent, resources are limited.” unplanned medical care development of com- Percentage of patients with deteriorating wound status struggles of chronically Source: Medicare Home Health Compare Web site: http://www. medicare.gov/homehealthcompare/%28S%28nkz4x4455wefwsifxsc L., Nursing Instructor vm545%29%29/about/overview.aspx. CHAPTER 32 Clients Receiving Home Health and Hospice Care 1047 needs Solving The nurse homes while Strengthening Promoting Teaching Self- management a client’s and health is a a synthesis ing M t ra theory and ob bo iliz health, lla ing Co of the Locating FIGURE 32-1. Home health nursing caregiving wheel. landmarks (see From the Case Files for an example). When families are unstable, clients may not be stay- ing in households designated on the nurse’s paperwork. They may have moved in with relatives or friends or back home alone, despite major care needs. Locating is especially challenging when neighbors or even family members live in fear, for whatever reason. Even when the wheels stop at the correct household, there is the challenge of getting through the closed door and making the connection. Always remember that you are a guest in the home. Respect and attentive listening are the foundation. Agendas must be laid aside initially as the nurse focuses on the concerns and realities of both client and family. SmithBattle, Drake, and Diekemper (1997) describe responsive use of self as the process expert nurses use to come to understand the lives of vulnerable clients in the community. Assumptions and stereotypes are overturned in the process of discovering how clients live, what they believe, and who comprises their family and community. Other nursing approaches that build the initial therapeutic nurse–client connection include helping with immediate problems that the family identifies. Start where they want in ways that make sense to them. Emphasize positives to the extent possible, rather than telling people what they are doing wrong and need to change. Autonomy should be respected, and the family should be empowered by actions recognizing that they are in charge of their lives. At the same time, the nurse must be up front and truthful regarding the medical and nursing problems that need resolution. For exam- ple, a nurse might say, “You might lose your foot if we cannot work together to figure out a plan of care that works. Let’s think together about what we can do to Health Nursing a corner, three mismatched dinette chairs, and a couple of cots against the wall. The air was hazy with the smell of wood smoke. Diane invited me to pull up a chair. “We’re worried about your infections,” I began. Diane had unstable, insulin-dependent diabetes and high blood pressure. In June, surgeons had removed her gangrenous left foot with an amputation that ended just below the left knee. Now there was an infection in the wound that had not healed despite extended use of antibiotics. During the course of the visit, I learned that Diane had no tub or shower for bathing. She also had no money for dress- ings and no supplies. Since Diane’s vision was impaired, her 9-year-old grandson was doing the dressing changes. Until the latest surgery, Diane worked as a cook in a local “boarding “Hello! It’s home” for frail elders. She was 66 years old and had Medicare coverage. I learned that Diane was the legal guardian for two grandchildren, ages 5 and 9. Apply the nursing process to comprehensively identify and prioritize nursing diagnoses and propose interventions. and watching a flicker- Use the Home Health Nursing Caregiving Wheel to guide your care planning. discharge are resulting in some patients discharged from home health care agencies while unable to manage care at home; indeed, a proportion of elderly clients may be discharged from home health agencies with unresolved wound and incontinence issues (Flynn, 2007). Currently, no governmental program assures long-term care for those people unable to care for themselves. The home health nurse must work closely with agency social work- ers to mobilize resources to care after the agency leaves. R im o f t he Ho m e H e alth Ca r e gi vi ng Whe e l: De te c ting Nurses in the home are challenged by an extraordi- narily complex environment with much to investigate and frequently many distractions to ignore. Detecting is an all-encompassing, never-ending assessment process as the nurse seeks to understand the client’s health in the context of home (Zerwekh, 1991). The nurse keeps her ears and eyes “wide open.” The home environment surrounds the nurse with sounds, sights, and scents that need to be comprehended in light of the client’s needs. Who lives in the home? How do they interact? Who are the caregivers, and how do they care? What is the relevance of culture and religion in the life of the household? How does the physical environment impact patient safety and security? Is there drug paraphernalia in the living room? Can the bathroom tub be used? The Clients Receiving Home Health and Hospice Care 1049 little capability, and frequent resistance to being told what to do. Their housekeeping may be terrible. Their interactions may be abusive. Witnessing lives in some homes requires an awareness of self and every effort to reach beyond preconception and judgment. Caring in the homes of those living “on the ragged edge” of society necessitates a strong commitment to discover- ing and honoring shared humanity (Zerwekh, 2000). Sometimes awareness of our own limitations should lead to referral to another home health nurse rather than imposing our own fear and/or anger on vulnerable clients. Home Health Nursing Case Management The home health nurse is the case manager for each cli- ent and responsible for coordination of the other pro- fessionals and paraprofessionals involved in the client’s care. The nurse plans visit frequency and duration. Will home visits be made twice weekly, once weekly, or every day? For how long will visits continue? As the care is provided and the client’s condition improves, the home health nurse determines whether the frequency of visits should be reduced or whether the client can be discharged. The home care nurse is the primary contact with the client’s physician, collaborating on the initial plan of care, reporting changes in the client’s condition, and securing changes in the plan of care. The nurse conducts case conferences among team members to share information, discuss problems, and plan actions to affect the best possible outcomes for the client. Medicare mandates such case conferences every 60 days in home care. The nurse case manager super- vises the paraprofessionals, such as home health aides, who also serve the homebound client. This may entail visiting the client at a time when the home health aide is present to observe the care provided. The home health nurse must know who is going to pay for services from the first visit to the time of dis- charge from the agency. If the client does not have a source of payment for the care that is needed, the agency must determine whether the client will receive the care free of charge or at a reduced rate. Many agencies have a sliding fee scale, which means that the charge for the services is based on the client’s ability to pay. for Selected Nursing Challenges in the Home Working in the home immerses the nurse in challenges unlike anything encountered in controlled institutional environments. Some of these include infection control, of all medication safety, risk for falls, technology at home, and nurse safety. I nfe c tion Co ntr o l can- Home health nurses frequently need to work with the family to prevent infection in clients who are Health Nursing risk for polypharmacy showed a correlated increase (Bao et al., 2011). Potentially inappropriate medica- tions (PIM) are “medications that generally should be avoided among patients 65 years or older either because they are ineffective or because associated adverse effects outweigh potential benefits or a safer alternative exists” (Bao et al., 2011; Fick et al., 2003). Additional findings from the Bao et al. study were an increased risk of PIM when clients were admitted to home health care from a nursing home or other sub- acute facility, rather than community admission. This not only supports the need for home care but improve- ments to discharge planning from skilled nursing facilities. Even if the client is well organized and taking every drug prescribed, those prescriptions may have origi- nated from several providers over time and may have contradictory side effects. Sometimes medication errors at home include failure to clearly reconcile hospital or nursing home orders with home discharge orders. Although medication boxes can helpfully organize med- ications, they can also confuse new or impaired users. Distraction, visual impairment, forgetfulness, depres- sion, and cognitive impairment are common causes of unintentional medication noncompliance. The home health nurse investigates how the medication is taken by reviewing and reconciling the current list of medica- tions and having the patient explain and demonstrate the process he goes through. Intervention requires clear and repeated instruction, updating the medication list, charting or diagramming the schedule for medication taking, and assuring that the client or caregiver knows how to use the medication box. Some of the reasons for intentional noncompli- ance are knowledge deficit, unacceptable side effects, no immediately obvious consequence when the drug is stopped, resistance to authority, perception of per- sonal weakness if needing medication, and prohibi- tive cost. As the cost of prescriptions is shifted onto people living with chronic illness, drug spending goes down, with partial adherence or total discontinuation of therapy by clients who cannot afford their medica- tion. It is not surprising to note that health then dete- riorates and clients with diseases such as congestive heart failure and diabetes come to need intensive med- ical intervention (Goldman, Joyce, & Zheng, 2007). The home health nurse seeks to nonjudgmentally elicit reasons and mutually figure out solutions that man- age medications at home and prevent intensive medical interventions. R is k for F alls Estimates are that one in three adults 65 years and older will fall each year, with 20% to 30% suffering moderate to severe injuries (CDC, 2012). Elders living at home have a 35% to 40% chance of falling; fear of falling is a serious problem in the aging, especially in those with debilitat- ing illness (Stanley, Blair, & Beare, 2005). Physiological risk factors include orthostatic hypotension and cardiac dysrhythmias, dizziness, neurologic and musculoskeletal CHAPTER 32 Clients Receiving Home Health and Hospice Care 1051 and advocates of complex regimens that require mul- tiple nursing visits. Paradoxically, our primary mission is to be guardians and advocates for the well-being of client and family. Consider the human impact when the machines and the sickbed become the center of house- hold activities. “We can slip so easily into the struggle to keep the technological regime functioning. However, nurses and other professionals in the home are in the pivotal position to witness the impact, to document the impact, and to assist clients to construct their lives in a meaningful way, so that neither illness nor medi- cal regimes are the only reason for being” (Zerwekh, 1995, p. 12). Sometimes, we can foster dialogue with clients and families to consider the benefits and burdens of continuing technologies. Consider four reasons why technology may be inappropriate: (1) the technology is not achieving a therapeutic purpose, (2) the therapeutic purpose can be met more simply, (3) complications of the intervention outweigh benefits, and (4) the resulting quality of life does not justify the technology. Recent information technologies being adopted by home health care agencies significantly improve quality for tech- of client care. These include medical records available instantly on the nurse’s laptop and daily telemedicine monitoring of electrocardiogram, blood pressure, oxy- devices and gen saturation, and other vital measures. As the results of one study caution (Shea & Chamoff, 2012), health care providers may overestimate the value of telemedicine in self-care for chronic conditions. The findings of the study clients support using explicit goals and intensions with clients and to individualize instructions provided. Essentially fre- quency of contact did not mean quality communication. N ur s e S afe t y Every home health care agency should have a carefully developed program to assure the safety of personnel traveling to homes. Many work closely with local police departments to identify the wisest process for visiting normal and dangerous neighborhoods and isolated rural areas. Display 32.4 lists practices for safe home visiting. THE FUTURE OF CARE IN THE HOME In conclusion, it can be seen that present-day Medicare home health care intervenes during brief episodes of acute medical trouble, relies on family at home as caregivers, and is expected to get in and out of the home as inexpensively as possible. Consider instead the true needs of the frail elderly or severely disabled who require prolonged psychosocial support, personal care, housekeeping, promotion of health, prevention of deterioration, and early detection of medical prob- lems. In other words, they need case management that extends over months and years. For this to happen, the United States must develop a community-based long- term care system. Home health care leaders look to a future of reinventing themselves by moving into new Beare, P. G. (2005). lines of business to meet these needs (Cohen, 2007). aging with older adults Some baby boomers will be able to afford these ser- permission. vices by paying out of their own pockets for a network of elder management services. Most baby boomers will Health Nursing need the development of a national community-based long-term care benefit. The Affordable Care Act is one step in that direction, but two programs provided in the act, the Community First Choice Option and the Community Care Transitions Program, do not pro- vide for the long-term care so often required (CMS, 2012d). They are, however, a step in the right direction. Healthy People 2020 provides a number of objectives that support the health and well-being of home health clients and their caregivers. Refer to Display 32.5 for a list of Healthy People 2020 objectives related to home health and hospice care (U.S. Department of Health & Human Services [USDHHS], 2010). After review- ing other categories of objectives in the full document, can you identify any that support the development of a community-based long-term care system in the United States? OVERVIEW OF THE HOSPICE MOVEMENT The contemporary circumstances of death in America are often dehumanizing; most people die in hospi- tals and long-term care institutions, surrounded by 2020 HOME HEALTH AND HOSPICE CARE Dementias, including Alzheimer’s Disease: DIA-2 Reduce the proportion of preventable hospitalizations in persons with diag- nosed Alzheimer’s disease and other dementias Disability and Health: DH-11 Increase the proportion of newly constructed and retrofitted US homes and residential buildings that have visitable features illness. Any Health Communication and Health IT: care HC/HIT-4 Increase the proportion of patients who report that their health care providers always involved them in decisions about their health care as much as they wanted Medical Product Safety: MPS-2 Increase the safe and effective treat- ment of pain MPS-5 Reduce emergency department (ED) visits for common, preventable adverse events from medications Source: U.S. Department of Health and Human Services. (2010). Healthy People 2020: Improving the health of Americans. Washington, DC: U.S. Government Printing Office. CHAPTER 32 Clients Receiving Home Health and Hospice Care 1053 and examines Medicare criteria for hospice reimburse- ment. It concludes with an exploration of the unique characteristics of hospice nursing practice. “evil” of EVOLUTION OF HOSPICE CARE In medieval Europe, hospices were refuges for the sick and dying. The contemporary hospice movement originated in England, where Dame Cicely Saunders founded St. Christopher’s Hospice in 1967 (McIntosh & Zerwekh, 2006). Dr. Saunders was credentialed as a nurse, social worker, and physician. She developed a unique program based both on compassion and skillful relief of physical discomfort through around-the-clock analgesics administered by mouth. It had been previ- ously assumed that only injections, administered spar- ingly, could be used for terminal pain control. The first hospice in the United States was established in 1974 in Branford, Connecticut, by Florence Wald, Dean of the Yale School of Nursing. Because even in the 1970s there was concern about saving money by shortening hospi- tal stays and keeping people out of the hospital, hos- pices in the United States came to focus on providing care in the home. To that end, Congress established the Medicare hospice benefit in 1982, with the intention of keeping people at home, yet receiving comprehensive services that are less expensive than hospitalization. Home Health Emphasis is on rehabilitation and physiological stabilization. Focus is on health of client. Plan of care is determined by medical need. Nurse is case manager until home health discharge. Priority is given to correcting physiologic imbalances. Intermittent visits decrease in frequency as client stabilizes. Symptom control is domain of physician with some nurses having expertise. to eliminate suffering. Sedatives and opioids are used hesitantly to reduce suffering. End-of-life problems tend to be seen as medical crises. Client is brought to hospital for unmanaged symptoms. Spiritual needs are met by own clergy. No bereavement support is provided. the dying. In I. Martinson, A. Widmer, & C. Portillo. Home health care nursing. Philadelphia, PA: W.B. Saunders, with Health Nursing change rapidly as the end of life nears. In addition to home visits focusing on palliation and interdisciplinary planning, hospice nurses rotate through 24-hour call 7 days a week to assure continuous availability by tele- phone and visits for emergent problems reported by client or family. Hospice nursing competencies and chal- lenges are similar to those described for home health nurses, with the added expertise needed to relieve physi- cal and emotional suffering of terminally ill people and their families. The American Nurses Association (ANA), in collaboration with other groups, has published stan- dards of practice for hospice and palliative nursing (2007) and pain management (2005). Through the ANCC (2012), hospice nurses can receive board certifi- cation in pain management. There is no current certifi- cation for hospice or home health nursing. The practice standards and certification process provide guidance in this specialized field of nursing. Hospice caregiving can be illustrated as a tree, strongly rooted in the process of nurses deliberately practicing self-care for themselves (Fig. 32-2). This tree has been drawn to explain the expert competencies of hospice nurses who were interviewed to capture the essence of their practice (Zerwekh, 1995, 2006). Each of the hospice nursing practices visualized by the tree diagram is briefly summarized below. Roots of Hospice Nursing: Sustaining Oneself Effective hospice nurses understand that to care for others, they must care for themselves. Without strong healthy roots, the tree will not thrive. Sustaining oneself requires deliberate effort to maintain one’s own physical, emotional, and spiritual well-being. Knowing oneself, identifying sources of stress, and learning how to care for oneself are important. Expert hospice nurses keep themselves healthy by maintaining a balance between giving and receiving, letting go of predetermined agen- das and idealistic hopes to achieve more than is humanly possible, being emotionally open and clear, and delib- erately replenishing themselves to restore their energy (Zerwekh, 2006). “Rooted in self care, we are able to reach out with courage to the broken and terrified at the end of their lives” (p. 60). Examine the Evidence-Based Practice feature about the risk of compassion fatigue. Of note: The contemporary work environment of most nurses actually causes more stress than everyday wit- nessing of suffering and death (Vachon & Huggard, 2010); emphasis on productivity and finances, with lim- its placed on nurse empowerment and resources, can be quite disheartening. Leaders must seek to develop a car- ing culture that respects nurse autonomy in the face of these challenges. The Trunk Reaching Upward: Connecting, Speaking Truth, and Encouraging Choice members Rooted in self-care, hospice nurses practice connect- ing, which refers to the centrality of relationships in CHAPTER 32 Clients Receiving Home Health and Hospice Care 1055 SPEAKING TRUTH Guiding letting go lly itua spir ing Car Encouraging choice Co m fo rti n ily g f am Co the lla ing bo en r at gth in St ren g Connecting Reaching out to meet fear Sustaining oneself the table and are constantly consulting each other. The hospice interdisciplinary team members share infor- mation and work interdependently. The hospice nurse coordinates the plan of care and day-to-day efforts to provide physical and psychosocial comfort. She supervises practical nurses and nursing assistants. The physician is responsible for medical care and serves as liaison with the client’s primary care physicians. Social workers, spiritual counselors, and volunteers are integral members of the hospice team. The hospice interdisciplinary team is constantly challenged to work creatively together to find solutions for complex end- of-life suffering with emotional, spiritual, and physical components. Hospice nurses Strengthening the Family The death of a family member causes great disrup- tion for all involved. When family members are in a caregiving role in the home, they experience significant personal suffering. They are vulnerable to physical and emotional illness themselves. The process of taking care involves managing the illness and all practical assis- tance, seeking information and resources, and prepar- ing for death itself. Family members often are caught up with family issues and struggles with the health care system. An extremely important hospice nursing role involves strengthening family members’ abilities as Health Nursing sustain compassionate practice as they work day in and day out and Flannery (2006) investigated “compassion fatigue” among compassion fatigue as a traumatic stress reaction resulting from Symptoms in hospice nurses included being preoccupied with the “on edge” due to helping, losing sleep over patient’s trauma, feel- memory loss, headaches, and having “frightening” thoughts. The patients that resulted in vicarious experiences of anxiety and pain. a high level of self-awareness to “purposefully enter into the world her experience, while maintaining enough detachment to be of practical health” (Zerwekh, 2006, p. 50). Abendroth and Flannery note the a patient’s death. Nurses working in this area must be supported their own need to share stories and speak openly about search the literature for more current examples of compassion of the hospice palliative care workforce in Canada using a national health workers and volunteers. The research demonstrated a positive cor- and both compassion fatigue and burnout and a positive asso- Nurses scored higher for Compassion Fatigue than any of the other

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