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Home Healthcare Nurse:
doi: 10.1097/01.NHH.0000311034.00721.73
HOSPICE & Palliative Care

The Challenges of Family Member Caregiving: How the Home Health and Hospice Clinician Can Help at the End of Life

Ruder, Shirley RN, MS, MSN, EdD

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Author Information

Shirley Ruder RN, MS, MSN, EdD, is Assistant Professor at the School of Nursing, Florida Gulf Coast University, Fort Myers, Florida.

Address for correspondence: Shirley Ruder, RN, MS, MSN, EdD, School of Nursing, Florida Gulf Coast University, 10501 FGCU Boulevard South, Fort Myers, Florida 33965 (e-mail:

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In the current healthcare system, family caregiving usually is at the core of end-of-life care. The home health clinician can play an important role in easing the burdens often experienced by the caregiver. This relationship may provide some challenges and some opportunities. This article describes some potentially helpful interventions that home health clinicians can use to improve the experiences of patients and caregivers.

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The Caregiver's Story

Mr. L was a 62-year-old man with prostate cancer diagnosed in 1997 as stage IV. He was treated with hormone therapy and later with radiation for gynecomastia resulting from the hormone therapy. Over the last 2.5 years of his life, his care was provided by hospice at home. Mrs. L, his wife and a nurse, was his primary caregiver. Despite her own full-time work and health issues, she was determined to provide his care. Over a 9-year period, she struggled to care for him physically and mentally as his condition worsened.

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Family Caregiving: An Overview

This story is not unusual. In the current healthcare system, family caregiving usually is a central part of end-of-life care. A 2000 survey by the Kensington, Maryland-based National Family Caregivers Association found that more that 54 million Americans spend an average of 18 to 20 hours a week caring for an adult loved one (U. S. Department of Health and Human Services, 2000). According to the American Association of Retired Persons, this number is predicted to reach 39 million by 2007 (National Alliance for Caregiving and AARP, 2004).

One reason for this increase is the large number of baby boomers who are growing older and living longer. Many of the health professions also are experiencing shortages that are expected to become more critical in the next few decades. Also, with the high cost of care, many people cannot afford round-the-clock professional care or to be cared for in inpatient health facilities. Family caregiving is estimated to provide approximately $306 billion annually in home services (Arno, 2006). On the basis of these numbers, caregiving has been identified as a major health issue for the 21st century.

Caregivers often are family members or friends who help those they care about to face chronic illnesses, disabilities, or death (U. S. Department of Health and Human Services, 2004). Approximately 60% of family caregivers are women (National Alliance for Caregiving and AARP, 2004). Many are spouses who are elders themselves and may have their own significant health problems.

Like Mrs. L, the typical family caregiver is a 46-year-old woman who is married and employed and spends approximately 18 hours a week providing care (National Alliance for Caregiving and AARP, 2004). It is certain that the number of family caregivers will increase as baby boomers age and life spans are extended. People older than 65 years are expected to increase at a rate of 2.3%, whereas the number of family members available to care for them is expected to increase by only 0.8% (Mack, Thompson, & Friedland, 2001).

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Supporting the Caregiver

Once the diagnosis is established and the patient is admitted for hospice care, it is important that early support and education be provided to the patient and the patient's caregiver. The patient and caregiver need to be active partners in planning and implementing the plan of care.

Taking care of a family member at home can be a very frightening prospect. In conjunction with other members of the health team, the caregiver should be educated in understanding the disease, what to expect, how to provide for patient care, what supports are needed, how to be an advocate when needed, what resources are available, and how these can be contacted.

The hospice nurse caring for patients at home plays a key role in providing symptom management. Caregivers need to be educated in the principles of managing pain and other common end-of-life symptoms. They also need to know guidelines for handling certain situations as well as what situations warrant calling the health provider and which provider to contact. In addition, patients and families need ongoing reassurance that the hospice nurse and other team members are there to assist and promote the patient's ability to remain as independent as possible and free of distressing symptoms.

A study by McMillan (2006) showed that surveyed hospice nurses depended on the caregivers to give patient symptom data 85% of the time even when the patient was alert and oriented. Using the caregiver as the main source of information about patient symptoms was found not always to result in accuracy. To learn best about patient's symptoms, the hospice nurse should ask the patient, using the family caregiver to give information about patient symptom data only if the patient is unable to respond (McMillan, 2006).

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Management of Common End-of-Life Symptoms

Caregivers need to be instructed in managing common care and comfort issues as they prepare to care for the patient. The fundamental components discussed in the following sections should be included in this instruction.

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Pain Assessment and Management

Caregivers need to understand common sources of pain and how to assess and manage pain. This assessment includes both verbal and nonverbal signs of pain. Tools such as the 1 to 10 pain intensity scale or the FACES pain rating scale (Hockenberry, Wilson, & Winkelstein, 2005) should be used consistently. Caregivers should be instructed in proper administration of pain medications including the frequency, dosing, and other parameters for controlling pain. Instructions on other interventions that can assist in controlling pain or other symptoms also are helpful to the caregiver.

When the pain is not being controlled, the caregiver should know to notify the hospice nurse for further assessment or for arranging changes in the medication or dosing. Caregivers should be advised about the importance of regular dosing and adherence to the pain medication schedule. The hospice nurse should dispel any concerns about addiction or dependence on medication that the caregiver might have. Allaying these concerns might prevent the family caregiver from not properly medicating the patient.

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Basic Hygiene and Personal Care

Caregivers need to be instructed on how to provide personal care. This includes how to give a bath and provide general hygiene, provide oral care, keep the patient clean and dry, and safely reposition and turn the patient. Dry mouth caused by medications and mouth breathing often is reported as a common symptom. Caregivers need to know how to provide frequent mouth care to keep the mouth and lips moist. As caregivers provide personal care such as bathing, they need to be aware of measures that promote the patient's privacy, warmth, and dignity while providing comfort.

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Bowel Management

Patients (for as long as they can be the source) and caregivers need to keep track of all bowel movements and report to the hospice nurse the progress and if the patient has not had a bowel movement in the past 3 days. Constipation should be prevented whenever possible. Some key interventions for preventing constipation can include ample fluid intake and high-fiber food (unless fluid or food intake is limited).

Patients receiving opiates should be on a bowel regimen because opioids inhibit peristalsis in the gastrointestinal tract. If a patient is started on opioids, a preventive approach should be used. Stimulant laxatives and stool softeners are useful for constipation associated with opiate use (Ignatavicius & Workman, 2006). It is important that caregivers understand and watch for signs of bowel obstruction such as abdominal distention, cramping, or both.

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Religious and Spiritual Component

Spirituality has been defined as the ability to find meaning and purpose in life (Koenig, 2002). Studies have found that spirituality may help people cope at the end of life (Kruse, Ruder, & Martin, 2007). In this study, the majority of the sample also reported God as extremely important in their lives, with 73% reporting that illness had strengthened their spiritual life and increased their religious practices.

In another study, McMillan (2006) found that 87% of patients identified their relationship with God as the most important aspect of quality of life while receiving hospice home care. This was followed by support from families and friends (86%), home surroundings (83%), receiving of physical care (81%), and hope (81%). Hope has been positively correlated with spirituality. Mickley, Soeken, and Belcher (1992) studied hope and spiritual well-being among women with breast cancer and found a positive correlation between hope and spiritual well-being.

In a study by Duggleby and Wright (2007), caregivers described their hope as peace, a better future, spirituality, and making a difference. They found that hope helped to foster positive relationships, improve communication, provide comfort, and offer hope. This hope was fostered by having adequate resources to care for the family member, feeling they were making a difference, having a supportive relationship with health team members and family, and having their own spirituality and the spirituality of the patient (Duggleby & Wright, 2007). The need for hospice nurses and other health team members to incorporate spirituality and hope into the care of patients who are at the end of life is well supported.

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Signs of Approaching Death

Certain signs and symptoms may be seen in the last hours or days before an expected natural death (Table 1). Caregivers need to understand these signs and what they mean. Often it is a time when the caregiver feels helpless. The caregiver needs to know that these signs can be part of the dying process and are natural changes. The hospice nurse and other team members can assist and supervise as the patient's condition worsens and can educate the family caregiver on how best to respond.

Table 1
Table 1
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Update on Mrs. L

Mrs. L. was a nurse and very knowledgeable about the disease process and how to provide basic physical and emotional care to her husband. She, like many other family caregivers, did not worry about herself and put her husband's needs above her own. She knew that caring for her husband would present many challenges and often was unprepared for many of the challenges she had to face.

Providing basic nursing care started out easy because Mrs. L's husband was able to assist in taking care of himself. But as the disease progressed, Mrs. L found that physically she was exhausted trying to keep up with his needs and care. Caregivers often are at significant risk of physical injury due to these strenuous physical tasks. Several times, Mr. L fell out of bed, and the fire department had to be called to assist putting him back in bed. Mrs. L realized she was not strong enough physically and had to ask for help to move her husband.

Through the illness, several hospice nurses worked with Mr. and Mrs. L in their home. Mrs. L found that if her husband felt safe and comfortable with the nurse, it relieved her and she felt confident that she could leave. There was one nurse who stayed with her husband the longest. Mrs. L counted on that nurse to assist with meeting her husband's needs, preparing her for anticipated changes, and supporting his care with the input and support of the hospice interdisciplinary team. One of the things she respected the most was that the hospice nurse “never gave up” in her efforts to manage symptoms effectively. She was willing to try new things and worked hard to manage symptoms that were not under control.

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Recognition of Caregiver's Emotional Burdens and Mental Health Risks

It is clear that family caregiving can take a toll on the caregiver both physically and mentally. Support for the caregiver is vital. Given the significant risks to family caregivers and the goal of providing comprehensive end-of-life care, the hospice nurse plays a vital role is supporting the caregivers of patients at the end of life. Caregivers often experience an extreme emotional burden for their work. The physical strain, financial strain, continuous caregiving, strained family relationships, and disrupted usual activities can lead to sadness, guilt, anger, resentment, and feelings of inadequacy. Family caregivers who provide care 36 hours or more weekly are more likely than noncaregivers to experience symptoms of depression or anxiety. For spouses the rate is 6 times higher, and caring for a parent carries a rate twice as high (Cannuscio et al., 2002). Older caregivers also are at an usually high risk for depression, are more vulnerable to illness, and have a higher death rate (Schulz & Beach, 1999).

Caregivers also are at risk for burnout. Caregivers are more at risk for burnout because they often lack medical training and are emotionally involved. Burnout can result in health problems, decreased productivity, and social problems. Burnout is stated to be one of the main reasons why caregivers place their loved ones in long-term care facilities. All members of the interdisciplinary team can help to prevent burnout by helping caregivers take care of themselves. This includes encouraging them to maintain their health by eating right and getting enough sleep, listening to what they have to say, and knowing where to find resources to assist them (Table 2). Allowing them to discuss their feelings with you or some other support person can ease the burden. There is not always an answer to a problem, but a sympathetic ear can provide support.

Table 2
Table 2
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Caregivers may need encouragement to delegate responsibility. Often they look for help outside the home including the community, church, neighbors, and friends. The members of the interdisciplinary team are a key source for identifying these and other supports. Encourage caregivers to identify 4 or 5 people or support groups that might help them.

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Mrs. L's Emotional and Mental Challenges

Mrs. L found that at the beginning of her husband's illness, all their friends came to visit and called to check on him. As Mr. L's condition worsened, they quit calling and visiting. She found it a very lonely, isolating time. She found that she quit going anywhere except to work. Emotionally she became very drained.

At first, going to work became Mrs. L's respite because she was able to find relief in getting away. But as Mr. L's condition worsened, he would look at her and say “Do you really have to leave me?” This left her with feelings of guilt and worry. She found she had to be a wife, a caregiver, and a nurse all at once. She stated that she began to feel numb both physically and mentally. The hospice nurse became her primary support system, who in turn was supported by the interdisciplinary team.

One thing that Mrs. L identified as the most powerful intervention for relieving her stress was the hospice team's use of humor. Humor can be a powerful coping tool for reducing stress and improving health. Mrs. L stated that her hospice nurse had a unique ability to make her and her husband laugh. No matter how hard the day had been, the nurse had the ability to turn it into a fun day.

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Grief and Bereavement

The experience of caring for a loved family member at the end of life can cause a profound feeling of sadness and loss. Grief has been associated with increased depression, insomnia, substance abuse, suicide rate, and mortality (Prigerson & Jacobs, 2001). Grief is a dynamic process that occurs in response to loss. It entails physical, emotional, spiritual, cognitive, and social responses to the loss. These responses are highly individual and influenced by several factors that can affect the length and intensity of the grief process. Caregivers must come to terms with frequent losses including loss of function and control, loss of independence, loss of self and sense of dignity, loss of a relationship, and uncertainty about the future.

A key indicator of how the bereaved will cope is the availability and use of caregiving support. A study of 73 adult family caregivers showed that the caregiving support before the patient's death accounted for 29% of the variance in personal bereavement difficulties, whereas bereavement support after the death accounted for only 2% (Bass, Bowman, & Noelker, 1991). The hospice nurse plays a major role in facilitating the grieving process and helping the family caregiver cope with the loss by

* Recognizing feelings of sadness, anger, and guilt and acknowledging and respecting these feelings.

* Encouraging the expression of feelings. Remember that not everyone grieves the same. Let caregivers know that the emotional turmoil does come to an end gradually. Encourage them to participate in behavioral interventions such as engaging in daily activities, writing journals, attending support groups, and receiving grief counseling. Calling them on or around meaningful days such as the anniversary date of the death, the deceased's birthday, or a holiday can be meaningful.

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It is known that the experience of caring for a loved one can be very fulfilling but also very stressful. The demands of family caregiving can be challenging and can take a toll both physically and mentally. Hospice team members can play a significant role in the education and support of family caregivers by recognizing the difficulties, communicating effectively, assisting with decision making, supporting and educating about home care, recognizing and assisting with caregiver physical and emotional needs, and acknowledging grief and bereavement. This can play an important role in easing the burdens often experienced by the family caregiver and help to make the experience more fulfilling.

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Resource: Consensus Document

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