Caregiving in the Home

Betty Ferrell

Jo Hanson

CAREGIVING

Background

In the United States, caring for the patient in the home setting has undergone marked shifts over the last 30 years. Prior to the 1980s, most home care was provided by informal (family/unpaid) caregivers (1). Home care consisted mainly of noncomplex interventions, such as administering oral medications or changing simple dressings. Patients requiring more complicated care remained as inpatients in the hospital.

In the mid-1980s, with large increases in access to and use of Medicare, home care shifted toward the formal (unlicensed or licensed paid) caregiver, that is, home health, to provide patient care and to support the family. The formal and informal caregivers worked as a team managing the patient’s needs. It was common for a home health nurse to visit the patient’s home prior to discharge. The visit provided an opportunity for the nurse to meet the family, to introduce the treatment plan, and to assess the home for any potential care issues. Meeting the nurse and reviewing the treatment plan greatly alleviated the family’s anxiety concerning their loved ones’ special home care needs. When the patient came home, the supplies and/or medications were already in place and the nurse-family caregiver team was prepared to start the treatment plan.

The Balanced Budget Act of 1997 enactment initiated a shift away from the formal caregivers (2). Although home health benefits were not eliminated, for many they were greatly reduced. Eligibility parameters were narrowed and frequent and complicated documentation was required. The newly enacted Budget Act, along with the combination of the increasing trend toward managed care and growing reimbursement restrictions on hospital and home care services, accelerated the shift toward the family caregivers shouldering the home care responsibilities (3,4). Patients were discharged earlier, sicker, and with fewer support resources; suddenly family caregivers were overwhelmed and ill prepared to meet the demands of the complex and multiple responsibilities thrust upon them (5,6,7,8). With minimal support or training, family caregivers struggled to manage pain and other symptoms, dispense medications, support emotional needs, pay bills, run errands, administer complex and highly technical treatments, coordinate care, communicate with multiple providers, provide meals, change dressings, and transport as needed (4,9,10,11).

In the 21st century, new technologies, innovative surgical techniques, and advances in medication modalities are changing how and where cancer care is delivered. In contrast to just 10 years ago, the majority of care is now provided in freestanding or outpatient hospital clinics, offices, ambulatory care centers, or outpatient surgical units. For example, a newly diagnosed non-surgical lung cancer patient, scheduled for several months of chemotherapy followed by weeks of daily radiation, may receive all tests, procedures, and treatments in the outpatient clinic or in an ambulatory cancer care center. While keeping people out of the inpatient hospital setting is a positive trend, it creates an even greater need for more support from the healthcare system for the patients and the families providing care in the home setting (12).

Complex Care in the Home Setting

In the past, most studies of symptom management have been largely concentrated on major symptoms, such as cancer pain, and acute care settings. More recent studies have focused on the broader needs of patients in the home settings (13). Several factors influence home care, especially the delivery of palliative care. Heavy reliance on the family caregivers, access to diagnostic facilities, and often the limited pharmacy services influence the effectiveness of pain and symptom management at home (12).

It is often assumed that comfort is enhanced in home setting, as it has been considered preferable to institutional settings. In fact, patients, families, and healthcare professionals frequently elect care at home assuming patients will be more comfortable (14,15). As researchers have extended studies into the home care setting, barriers that impede pain management have been revealed. Issues of patient and family fears of addiction, failure to report pain, and limited access to needed services have limited the effectiveness of pain management (11). When planning cancer home care, consideration must be given to the accessibility of services and to family caregivers’ knowledge, values, and abilities. If potential home care issues have not been identified, not only can patient comfort level be compromised but also it can evoke a sense of inadequacy and despair in family caregivers.

Symptom management at home is different from that in the hospital and other institutional settings. Hospitals provide technical equipment and services for acutely ill patients. For patients with complex problems, inpatient care includes a variety of aggressive or invasive strategies for diagnosis and definitive treatment of the underlying conditions. With immediate access to specialists and high-tech equipment, an appropriate plan can be determined and immediately
initiated. In contrast, care provided in the home is slow to change and relies mostly on low-tech strategies that concentrate on symptom management. The dynamic nature of cancer and its treatment side effects make effective symptom management especially challenging for home care patients and family caregivers. A change in symptoms may indicate disease progression or treatment-related side effects. Determining the best overall strategies for symptom management in the home setting is difficult. Further research is needed to better understand and support the inherent challenges of providing cancer care in the home (16,17).

Cancer as a Family Experience

A cancer diagnosis is recognized as a disease that affects the whole family (7,11,17,18,19). As cancer care shifts toward the outpatient setting, there is a heightened awareness of the importance of families and their understanding of and involvement in the total care needs of the patient (11,20). It is remarkable that care which only a decade ago was reserved for intensive care units (ICUs), to be delivered by specially trained healthcare providers, is now delegated to families in the home who have had little or no preparation for the physical and emotional demands of caregiving (21,22). Family caregiving has advanced from caring for patients with mostly low-tech needs to providing high-tech active treatments, such as chemotherapy regimens, intravenous fluid administration, complex wound care, and many other technical procedures (17). Recent literature has acknowledged the intense demands of family caregiving at home, especially in the areas of technical care, acquisition of skills, and provision of intense 24-hour physical caregiving (11,23). Less emphasis has been placed on the family caregiver’s emotional burdens of assuming responsibilities for the patient’s well-being or peaceful death in the home (16,19,24,25,26). Studies have found that family caregivers report feelings of unpreparedness, uncertainty, and extreme anxiety in providing care and a home death. Further research is needed to understand the family caregivers’ feelings and to develop interventions that will provide the needed support (27).

Care in the home setting can be a delicate balance for families. At one end of the spectrum are the many patient needs; if out of balance, it can result in intense burdens for family caregivers and compromised care for patients (8). At the other end of the spectrum are the many benefits of providing the care at home (28,29). Home care may offer the patient improved physical comfort and the psychological well-being of familiar surroundings. Together patients and families may find opportunities to heal relationships, to benefit from the compassion of giving and receiving comfort care, and to share in the transition from life to death (13,25).

Families have been greatly impacted by their limited ability to choose the primary healthcare setting. In the late 1970s and early 1980s, patient and family preferences and abilities were major considerations when healthcare professionals determined whether to discharge a patient to the home setting or extend the inpatient stay. In the 1990s, care began to shift to the home as the primary setting for active treatment as well as palliative care. Insurance and managed care benefits became the driving force in the care setting decision, leaving patient and family choices as secondary considerations. Although many patients and families may volitionally have chosen home as the primary care setting, others had no choice; the healthcare system or hospital relegated care to the home.

The outcomes of home caregiving may best be evaluated by the effects on families following the death of the patient and during bereavement. Hospice providers have long recognized that positive experiences with caregiving in the home result in positive bereavement and adaptation by family members after the patient’s death. However, feelings of inadequacy in providing care in the home, patient complications, and deaths that are less optimal than anticipated can result not only in the patient’s diminished quality of life (QOL) or quality of death but also in long-term consequences for the family (13,27,30).

Case Study

To further illustrate cancer as a family experience and the longterm consequences, a case study is included.

Six-year-old Trevor was diagnosed with acute lymphoblastic leukemia 3 months ago. He has two older sisters, 8 and 10 years old. His parents, Amy and Sam, both teach in an inner city high school 45 minutes from their home. For the first 6 weeks, Sam took time off to be with Trevor while he was an inpatient receiving high-dose chemotherapy. He has no more paid time off. Trevor’s mother is worried about taking time off now, in case he gets “really sick from the chemo” and has to go back into the hospital. He has two more years of outpatient chemotherapy.

On discharge, his parents were given the 35 medications and a 2-page list of instructions on diet, activity, infection prevention, and signs of infection, such as redness, tenderness, or pus at his Port-a-Cath site or if the temperature was >38.3°C they were to rush him to the hospital immediately. He started his outpatient chemotherapy a month ago. Since then he has been to the emergency room twice and admitted to the hospital once for 4 days.

Fortunately, they live in a closely knit neighborhood that has reached out to support the family. Transportation for the sisters’ school and activities has been organized by their neighbors who have also insured that the food is well supplied and have cared for the dog. Amy’s parents live nearby and spend the day with Trevor while the rest of the family is away at work and school.

Amy no longer allows the girls to have friends over to their house, fearing they may bring germs into the house. She disinfects the whole house twice a day and has established “Trevor only” items such as keyboards, toys, and furniture. Upon their return from work and school, everyone has to shower before they are allowed in the same room with Trevor. Other than work and school, the family has stopped outside activities,
including church. Even the dog, which has always slept in the girls’ room, is no longer allowed in the house.

Sam is anxious to keep Trevor “normal” during his 2-year treatment period. He feels like Amy is overreacting and is making the girls feel as if they don’t matter. When Sam tries to discuss this with Amy, she gets defensive telling him he doesn’t care about his son. She says it’s just for 2 years and that he and girls will just have to adjust.

THE FAMILY CAREGIVER

“In 2009, about 42.1 million family caregivers in the United States provided care to an adult with limitations in daily activities at any given period in time; and about 61.6 million provided care at some time during this year. The estimated economic value of their unpaid contributions was approximately $450 billion” (1).

Definition

Family caregivers have been defined as follows:

A relative, friend, or partner who has a significant relationship and provides assistance (physical, social, and/or psychological) to a person with a life-threatening, incurable illness (31).
An unpaid family member, friend, or neighbor who provides care to an individual who has an acute or chronic condition and needs assistance to manage a variety of tasks, from bathing, dressing, and taking medications to tube feeding and ventilator care (11).
Any relative, partner, friend, or neighbor who has a significant personal relationship with, and provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition. These individuals may be primary or secondary caregivers and live with, or separately from, the person receiving care (6).

Commonalities in each definition include (1) significant relationship; (2) unpaid; and (3) breadth of caregiving responsibilities. Throughout this chapter, family caregivers refers to those who provide uncompensated care in the home and who have a pre-existing relationship (either through friendship or kinship) with the person for whom care is being provided. This care can be in any of the QOL domains, including physical, social, psychological, and spiritual care.

Demographics

Today, in the United States, 65 million people are family caregivers. A typical family caregiver is a 49-year-old woman caring for her widowed 69-year-old mother who does not live with her. She is married and employed. Approximately, 66% are women and more than 37% have children or grandchildren <18 years old living with them. They average 20 hours per week caring for loved ones; however, 13% provide care for 40 or more hours per week. More than 3 in 10 households (31.2%) report that at least 1 person has been a caregiver of the last 12 months. They have been in the family caregiver role for an average of 4.6 years, with 3 in 10 having given care to their loved ones for 5 or more years (31%). The majority care for a relative (86%) and 36% are taking care of a parent (9).

Elderly

The changing demographics are of special significance for the cancer family caregiver. Cancer is associated with aging; over half of all cancers occur in those 65 years and older (32). Between the years 2005 and 2030, the number of older adults in the United States will almost double, making up 20% of the population. The 2008 Institute of Medicine (IOM) report warned that the nation is not prepared to meet the elderly healthcare needs (33). The Seer Cancer Statistics Review reported approximately 60% of cancer diagnosis and 70% of cancer mortality occur in patients 65 years of age or older (34). The average adult care recipient’s age is 69.2 years old. Eighty percent of their care is provided by family caregivers and of these caregiver 80% are their spouses (9).

Care for the cancer patient at home becomes far more difficult when the patient and the family caregiver are elderly and also have concomitant illnesses themselves, such as cardiac disease, hypertension, and diabetes, with their associated medications and treatments. The current trend toward earlier discharge from acute care hospitals and the increase in home care leads to more adult children becoming involved in caring for a physically dependent parent. Advances in cancer treatment have led to increased survivorship, which in turn has led to caregiving demands that may exist for several months to years (18). Importantly, the majority of the family caregivers are women, many over the age of 65. They suffer from multiple role responsibilities and co-morbidities, making them especially vulnerable to the significant physical, emotional, social, and spiritual toll of caregiving (35). There is limited attention focused on the special care needs of the geriatric population at home and that of their caregiver. Expanded efforts in attending to complex needs of the aging need to be adopted, especially given the growing percentage of population over the age of 65 (33).

Children

Although there are over 10,000 new childhood cancer diagnoses each year and even though cancer is the leading cause of childhood death due to disease (36), most of the literature regarding family caregivers has focused on the care of adults. The care of children is often perceived to be less demanding or even normal as family caregivers usually provide pediatric home care. However, studies reveal that when a child is diagnosed with cancer, the family equilibrium is disrupted, often with the adverse affects of the family caregivers experiencing post-traumatic stress disorder, anxiety, depression, financial distress, marital discord, social and behavioral problems, and/or prolonged/complicated mourning (37). Expectations of pediatric cancer family caregivers include managing frequent medical appointments and hospital stays; learning rigorous treatment protocols; providing high-tech
medical care in the home; responding to severe side effects; partnering with the medical team for invasive procedures; and getting the child to cooperate/comply with treatments and procedures. The parent-caregiver role/parent-healthcare provider role presents a parental dilemma. Parents view their role as one that nurtures, protects, and avoids suffering; however, in the healthcare provider role, the parent is often providing or assisting in painful care. Parents struggle with the desire to reflect child’s preferences, to receive positive feedback from the staff concerning the wisdom of decisionmaking, and to still feel like they are still being a “good parent” (38).

Recent studies have explored the experience of parents in caring for a child with cancer. These studies have added a dimension to the previous research related to family caregivers and described the decisions and conflicts of caring for children with cancer. Jones identified the needs of family caregivers who are providing pediatric palliative and end-oflife care. They are as follows: (1) adequate pain control and symptom management; (2) companionship, counseling, and support; and (3) information, control, and advocacy for the medical decisions they must make (37).

Parents of pediatric patients with cancer in pain have reported that healthcare providers did not take their child’s pain seriously and did not provide adequate analgesia to relieve the pain (39,40). This is consistent with literature describing the inadequate assessment and management of pediatric pain and the overall deficiencies in pediatric palliative care. However, when specialized pain teams were involved, they were better able to relieve not only the child’s pain but also the parent’s emotional suffering as well (41). The parents’ role in decision-making varied from allowing the child to have control whenever possible regarding his or her treatment to personally administering nondrug methods of pain relief that temporarily alleviated both the child’s pain and the parents’ feelings of helplessness.

Distance

The number of distance caregivers is rapidly growing. It is estimated that more than 7 million Americans are distant caregivers (8,34). Mazanec defines distant caregiving as the experience of providing instrumental and emotional support to an ill loved one who lives far away (28). In distance caregiving, generally the focus is more on gathering information and available resources, coordinating services, and putting together a team (i.e., friends or paid help) that can provide the care for the family’s loved one rather than providing hands-on care. Caregiver burden increases for many distant caregivers as they struggle to gain information and for some to participate in the care of their loved ones. For instance, an adult daughter caregiver, living 500 miles away from her 89-year-old mother with breast cancer, is unable to participate in her mother’s day-to-day caregiving and is challenged by complicated communication issues. Feelings of guilt and anxiety heighten her already heavy caregiver burden. In a study of caregivers living at least 100 miles from their loved ones, issues concerning lack of control and information were identified as major caregiver challenges (42). More research is needed to change the way information is delivered to distance caregivers and to identify their unique needs in supporting their loved ones.

Roles/Responsibilities

Family caregiver roles and responsibilities are varied and multidimensional, reaching across the QOL domains: physical; psychological; social; and spiritual (43,44) (Table 52.1). Family members’ roles change as they learn and adapt to the nuances of family caregiving responsibilities, such as providing care and support, dealing with stress and grief, and managing finances. One of the most important responsibilities of the cancer family caregiving is that of pain management. In the early stages of cancer 30% to 45% of patients experience pain; by the advanced stages this increases to 75% (7). Although each family navigates the cancer journey differently, all families go through a learning process in determining the best plan in caring for their loved ones.

A primary task of family caregivers is management of medications. It is enlightening to realize that healthcare professionals assume similar responsibilities in inpatient and other settings only after formal courses in pharmacology and with support available from professional colleagues, such as pharmacists, reached by direct access. For family caregivers in the home setting, this is particularly challenging when symptom management is often either accomplished on an as-needed basis for symptoms such as nausea or anxiety or with necessary titration of around-the-clock dosing of medication such as analgesics.

TABLE 52.1 Family caregiver responsibilities

Activity	QOL Domain^a
Symptom management	P, Ps, S, Sp
Medication acquisition/dispensing	P, Ps
Emotional support	P, Ps, S, Sp
Communication with providers	Ps, S, Sp
Coordinating care	P, Ps
Transportation	P, S
Errands/bill paying	P, Ps
Supervision, adherence	P, Ps
Monitoring using electronic devices	P, Ps
Meals and nutritional assistance	P, Ps, S, Sp
^aP, physical; Ps, psychological; S, social; Sp, spiritual. QOL, quality of life.

Management of medications is important not only to preserve the patient’s comfort but also to diminish the burden on the family caregiver and to avoid costly complications such as repeat hospitalizations when medications are not effectively used. Often patients and family caregivers do not have the necessary knowledge to judge indications for administration of medications or the delicate issues involved with titration or the side effects of medications. Healthcare providers can make a valuable contribution to the care of patients at home by insuring that medication schedules are made as simple as possible using single agents rather than multiple drugs and maintaining the simplest possible routes of administration and dosage schedules. Patients and family caregivers require assistance with important decisions regarding the use and titration of medications and practical techniques such as written dosage schedules, use of logs, and provision of guidelines to help in medication choices.

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