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Supporting Families in Palliative Care 

Supporting Families in Palliative Care
Chapter:
Supporting Families in Palliative Care
Author(s):

Rose Steele

and Betty Davies

DOI:
10.1093/med/9780190244132.003.0003
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date: 11 December 2019

This chapter addresses family-centered care as central to the philosophy of palliative care. Illness is incorporated into every aspect of family life. Family and illness can be considered a biopsychosocial model—the fit between family strengths and vulnerabilities in relation to the psychosocial demands over time of the illness. Geographic and cultural factors influence who is included as “family.” Expectations of roles, patterns of behavior, and rules of emotional expression vary considerably. As a basis for offering optimal support to families in palliative care, the main focus of the chapter is on findings of a research program that prospectively examined the experiences of such families. Particular attention is paid to the transition of “fading away.”

Who Is the Family?

The family is a group of individuals inextricably linked in ways that are constantly interactive and mutually reinforcing.1,2 Family can mean direct blood relatives, relationships through an emotional commitment, or the group or person with whom an individual feels most connected.3 Moreover, family in its fullest sense embraces all generations—past, present, future; those living, those dead, and those yet to be born. Shadows of the past and dreams of the future also contribute to the understanding of families.

Although palliative care programs are based on the principle that the family is the unit of care, in practice the family is often viewed as a group of individuals who can either prove helpful or resist efforts to deliver care. The best outcomes can be achieved if appropriate interventions are directed at the family members both individually and as a group.4,5 It is important to understand how all family members perceive their experience and how their relationships fit together. Research has focused on the family’s perceptions of their needs6,7,8,9; experiences and challenges faced6,7,8,9,10,11,12; adaptation and coping skills required for home care6,11,13,14,15,16; the supportiveness of nursing behaviors17 or physician behaviors18; and satisfaction with care.19 Though past research focused primarily on families of patients with cancer, family research on other diagnostic populations, such as Parkinson’s disease,20 cardiac disease,21 motor neuron disease,22 dementia,23 and neurodegenerative diseases,7 as well as advanced age24 is becoming available. Family members expect health professionals to meet their own needs for information, emotional support, and assistance with care.18 Recent research suggests that the most effective way to support family caregivers may be to help them be successful in their caregiving role rather than to focus on personal needs.12

As a basis for offering optimal support to families in palliative care, this chapter focuses on describing the findings of a nursing research program that prospectively examined the experiences of such families.25 Nurses in a regional cancer center constantly had to attend to the needs of not only patients but also patients’ families, particularly as they moved back and forth between hospital and home. In searching the literature for guidelines about family-centered care, they found that many articles were about the needs of patients and family members, about levels of family members’ satisfaction with care, and about family members’ perceptions of nurses, but nothing really described the families’ experiences as they coped with the terminal illness of a beloved family member. The research study25 included patients with advanced cancer, their spouses, and at least one of their adult children (>18 years of age). Since the completion of the original research, families with AIDS, Alzheimer’s disease, and cardiac disease have provided anecdotal validation of the findings from their experiences. In addition, families of children with progressive, life-threatening illness have provided similar validation. The findings from this research program form the basis for the description that follows. References to additional research studies are also included to supplement and emphasize the ongoing development of knowledge in the field of family-centered end-of-life care.

The Transition of Fading Away

A common view is that transitions are initiated by change, by the start of something new. However, most transitions actually begin with endings.26 This is true for families living with serious illness. The transition described as “fading away” described by families facing terminal illness began with the ending of life as they knew it. They came to realize that the ill family member was no longer living with cancer but was now dying from cancer. Despite the fact that family members had been told about the seriousness of the prognosis, and had experienced the usual ups and downs associated with the illness trajectory, for many the “gut” realization that the patient’s death was inevitable occurred suddenly: “It struck me hard—it hit me like a bolt. Dad is not going to get better!” The awareness was triggered when family members saw, with “new eyes,” a change in the patient’s body or physical capacity, such as the patient’s weight loss, extreme weakness, lack of mobility, or diminished mental capacity. Realizing that the patient would not recover, family members began the transition of fading away. As one patient commented, “My body has shrunk so much—the other day, I tried on my favorite old blue dress and I could see then how much weight I have lost. I feel like a skeleton with skin! I am getting weaker. … I just can’t eat much now, I don’t want to. I can see that I am fading. … I am definitely fading away.”

The transition of fading away is characterized by seven dimensions: redefining, burdening, struggling with paradox, contending with change, searching for meaning, living day by day, and preparing for death. The dimensions do not occur in linear fashion; rather, they are interrelated and inextricably linked to one another. Redefining, however, plays a central role. All family members experience these dimensions, although patients, spouses, and children experience each dimension somewhat differently.

Redefining

Redefining involves a shift from “what used to be” to “what is now.” It demands adjustment in how individuals see themselves and each other. Patients maintained their usual patterns for as long as possible and then began to implement feasible alternatives once they realized that their capacities were seriously changing. Joe, a truck driver, altered his identity over time: “I just can’t do what I used to. I finally had to accept the fact that the seizures made it unsafe for me to drive.” Joe requested to help out at his company’s distribution desk. When he could no longer concentrate on keeping the orders straight, Joe offered to assist with supervising the light loading. One day, Joe was acutely aware he didn’t have the energy to even sit and watch the others: “I couldn’t do it anymore,” Joe sighed. “I had reached the end of my work life and the beginning of the end of my life.” Another patient, Cora, lamented that she used to drive to her son’s home to babysit her toddler-aged grandchildren; then her son dropped the children off at her house to conserve the energy it took for her to travel; and now, her son has made other child care arrangements. He brings the children for only short visits because of her extreme fatigue. Both Joe and Cora, like the other patients, accepted their limitations with much sadness and a sense of great loss. Their focus narrowed, and they began to pay attention to details of everyday life that they had previously ignored or overlooked. Joe commented, “When I first was at home, I wanted to keep in touch with the guys at the depot; I wanted to know what was going on. Now, I get a lot of good just watching the grandkids out there playing in the yard.”

Patients were eager to reinforce that they were still the same on the inside, although they acknowledged the drastic changes in their physical appearance. They often became more spiritual in their orientation to life and nature. As Joe said, “I always liked being outside—was never much of an office-type person. But, now, it seems I like it even more. That part of me hasn’t changed even though it’s hard for some of the fellas (at work) to recognize me now.” When patients were able to redefine themselves as Joe did, they made the best of their situation, differentiating what parts of them were still intact. Joe continued, “Yeah, I like just being outside, or watching the kids. And, you know, they still come to their Grandpa when their toy trucks break down—I can pretty much always fix ’em.” Similarly, Cora commented: “At least, I can still make cookies for when my family comes, although I don’t make them from scratch anymore.” Patients shared their changing perceptions with family members and others, who then were able to offer understanding and support.

“Nothing’s wrong with me, really. … We are being accredited this year. There’s a lot to do to get ready for that.” Ralph insisted on going into the office each day to prepare the necessary reports. His increasing confusion and inability to concentrate made his reports inaccurate and inadequate, but Ralph refused to acknowledge his limitations or delegate the work. Instead, his colleagues had to work overtime to correct Ralph’s work after he left the office. According to Ralph’s wife, anger and frustration were commonplace among his colleagues, but they were reluctant to discuss the issue with Ralph. Instead, they avoided conversations with Ralph, and he complained to his wife about his colleagues’ lack of interest in the project.

Patients who were unable to redefine themselves in this way attempted to maintain their regular patterns despite the obvious changes in their capacity to do so. They ended up frustrated, angry, and feeling worthless. These reactions distanced them from others, resulting in the patients feeling alone and, sometimes, abandoned. Ralph, for example, was an educational administrator. Despite his deteriorating health, he insisted that he was managing without difficulty.

Supporting Families

For the most part, spouses took the patient’s physical changes in stride. They attributed the changes to the disease, not to the patient personally, and as a result, they were able to empathize with the patient. Patients’ redefining focused on themselves, the changes in their physical status and intrapersonal aspects; spouses’ redefining centered on their relationship with the patient. Spouses did their best to “continue on as normal,” primarily for the sake of the patient. In doing so, they considered alternatives and reorganized their priorities.

Wittenberg and colleagues4 described the “reciprocity of suffering” that family members experience, which results from the physical and emotional distress that is rooted in their anguish of dealing with the impending death of the loved one, and in their attempt to fill new roles as caregivers. The degree to which family members experienced this phenomenon varied according to patients’ redefining. When patients were able to redefine themselves, spouses had an easier time. Such patients accepted spouses’ offers of support; patients and spouses were able to talk about the changes that were occurring. Spouses felt satisfied in the care that they provided. But when patients were less able to redefine, then spouses’ offers of support were rejected or unappreciated. For example, Ralph’s wife worried about his work pattern and its impact on his colleagues. She encouraged him to cut back, but Ralph only ignored her pleas and implied that she did not understand how important this accreditation was to the future of his school. Even when Ralph was no longer able to go to the office, he continued to work from home, frequently phoning his colleagues to supervise their progress on the report. His wife lamented, “For an educated man, he doesn’t know much. I guess it’s too late to teach an old dog new tricks.”

In such situations, spouses avoided talking about or doing anything that reminded the patient of the changes he or she was experiencing but not acknowledging. The relationship between the spouse and patient suffered. Rather than feeling satisfied with their care, spouses were frustrated and angry, although often they remained silent and simply “endured” the situation. The ill person contributed significantly to the caregiver’s ability to cope. Indeed, the ill person was not simply a passive recipient of care but had an impact on the experience of the caregiving spouse. Similarly, in their study of factors that influence family caregiving, Stajduhar and colleagues27 found that the ill person contributed significantly to the capacity of the spouse to continue to provide care despite their experience of overwhelming emotional and physical strain. Caregivers drew strength from the dying person when the ill person accepted the impending death, had an understanding of the caregivers’ needs, and had attitudes, values, and beliefs that sustained their caregivers.

Adult children also redefined the ill family member; they redefined their ill parent from someone who was strong and competent to someone who was increasingly frail. Children felt vulnerable in ways they had not previously experienced. Most often, children perceived that the changes in their ill parent were the result of disease and not intentional: “It’s not my father doing this consciously.” Younger adult children were particularly sensitive to keeping the situation private, claiming they wanted to protect the dignity of the patient, but seemed to want to protect their own sense of propriety. For example, one young woman in her early twenties was “devastated” when her father’s urinary bag dragged behind him as he left the living room where she and her friends were visiting. It was difficult for some young adults to accept such manifestations of their parent’s illness. Adolescents in particular had a difficult time redefining the situation. They preferred to continue on as if nothing was wrong and to shield themselves against any information that would force them to see the situation realistically.

When the ill parent was able to redefine to a greater degree, then children were better able to appreciate that death is part of life. They recognized their own susceptibility and vowed to take better care of their own health; older children with families of their own committed to spending more quality time with their children. Joe talked, although indirectly, with his son about the situation: “I won’t be here forever to fix the kids’ toys.” Together, Joe and his son reminisced about how Joe had always been available to his son and grandchildren as “Mr. Fix-it.” Joe’s son valued his dad’s active participation in his life and promised to be the same kind of father to his own sons. In contrast, when the ill parent was unable to redefine, then children tended to ignore the present. They attempted to recreate the past to construct happy memories they never had. In doing so, they often neglected their own families. Ralph’s daughter described her dad as a “workaholic.” Feeling as if she had never had enough time with her dad, she began visiting her parents daily, with suggestions of places she could take him. He only became annoyed with her unfamiliar, constant presence: “It’s okay she comes over every day, but enough is enough.”

The extent to which spouses and adult children commented on the important contribution made by the dying family member underscores the importance of relationships among and between family members in facilitating their coping with the situation of terminal illness.

Burdening

Feeling burden for their family is common among patients.28 If patients see themselves as purposeless, dependent, and immobile, they have a greater sense of burdening their loved ones. The more realistically patients redefined themselves as their capacities diminished, the more accurate they were in their perceptions of burdening. They acknowledged other family members’ efforts, appreciated those efforts, and encouraged family members to rest and take time to care for themselves. Patients who were less able to redefine themselves did not see that they were burdening other family members in any way. They denied or minimized the strain on others. As Ralph said during the last week of his life, “I can’t do much, but I am fine really. Not much has changed. It’s a burden on my wife, but not much. It might be some extra work. … She was a nursing aide, so she is used to this kind of work.”

Most spouses acknowledged the “extra load” of caring for their dying partner, but indicated that they did not regard the situation as a “burden.” They agreed that it is “just something you do for the one you love.” Spouses did not focus on their own difficulties; they managed to put aside their own distress so that it would not have a negative impact on their loved one. They sometimes shared stories of loneliness and helplessness, but also stories of deepening respect and love for their partner. Again, spouses of patients who were able to redefine were energized by the patient’s acknowledgment of their efforts and were inspired to continue on. Spouses of patients who were not able to redefine felt unappreciated, exhausted, and confessed to “waiting for the patient to die.”

The literature provides a comprehensive description of the multidimensional nature of burden experienced by family caregivers, but little attention has been given to burdening felt by patients or adult children specifically. Caregiver burden, usually by spouses, has been described in terms of physical burden, which includes fatigue and physical exhaustion, sleeplessness, and deterioration of health.4,10,11,12,13,14,15,16 Social burden encompasses limited time for self and social stress related to isolation.10,11,12,13,14 Regardless of the type of burden, however, most caregivers, including the ones in the fading away studies, expressed much satisfaction with their caregiving.4,14 Despite feeling burdened, most caregivers would repeat the experience: “Yes, it was difficult and exhausting, and there were days I didn’t think I could manage one more minute. But, if I had to do it over again, I would. I have no regrets for what I am doing.”

Children, too, experienced burdening, but the source stemmed from the extra responsibilities involved in helping to care for a dying parent, superimposed on their work responsibilities, career development, and their own families. As a result, adult children of all ages felt a mixture of satisfaction and exhaustion. Their sense of burdening was also influenced by the ill parent’s redefining—if the ill parent acknowledged their efforts, they were more likely to feel satisfaction. However, children’s sense of burdening was also influenced by the state of health of the well parent. If that parent was also ill or debilitated, the burden on children was compounded. If children were able to prioritize their responsibilities so that they could pay attention to their own needs as well as helping both their parents, they felt less burdened. Children seemed less likely than their well parents to perceive caregiving as something they themselves would do. They did not have the life experience of a long-term relationship that motivated the spouses to care for their partners.

Supporting Family Caregivers

Finding effective ways to support family caregivers is critical. An increase in the proportion of elderly people in the population means growing numbers of people with chronic, life-threatening, or serious illness require care. The responsibility for the care of such individuals is increasingly being placed on families. Respite care is often suggested as a strategy for relieving burden in family caregivers.6,20 Although respite and other resources or services should be offered to families, each family must decide what will actually be helpful to them. For some families, inpatient respite services during the last year of life may help relieve their burden, while other caregivers may experience feelings of guilt and increased stress because of worrying about the quality of care provided.29 Caregivers may be supported in their role simply by knowing there are resources and support available to them, even if they do not make use of these resources.6

Potential factors influencing the success of respite care include the dynamics within the family, in particular between the patient and family caregivers. Support from informal and professional caregivers was found not to be sufficient to balance the stresses of caregiving.27 The missing element may be internal to the family. These findings encourage greater exploration into respite care and its meaning to caregivers. Family members may value cognitive breaks during which they can remain within the caregiving environment, but physical separation from the caregiving environment may be valuable only if it contributes in some meaningful way to the caregiving.

Struggling With Paradox

Struggling with paradox stems from the fact that the patient is both living and dying. For patients, the struggle focuses on wanting to believe they will survive and knowing that they will not. On “good days,” patients felt optimistic about the outcome; on other days, they succumbed to the inevitability of their approaching demise. Often, patients did not want to “give up” but at the same time were “tired of fighting.” They wanted to “continue on” for the sake of their families but also wanted “it to end soon” so their families could “get on with their lives.” Patients coped by hoping for miracles, fighting for the sake of their families, and focusing on the good days. As Joe said, “I like to think about the times when things are pretty good. I enjoy those days. But, on the bad days, when I’m tired, or when the pain gets the best of me, then I just wonder if it wouldn’t be best to just quit. But you never know—maybe I’ll be the one in a million who makes it at the last minute.” He then added wryly, “Hmmm, big chance of that.”

Spouses struggled with a paradox of their own: they wanted to care for and spend time with the patient, and they also wanted a “normal” life. They coped by juggling their time as best they could, and usually put their own life on hold. Spouses who tended to their own needs usually were less exhausted and reported fewer health problems than spouses who neglected their own needs. For years, Joe and his wife had been square dancers. They had not been dancing together for many months when his wife resumed going to “dance night as a sub” or to prepare the evening’s refreshments. “Sometimes, I feel guilty for going and leaving Joe at home, but I know I need a break. When I did miss dance night, I could see I was getting really bitchy—I need to get out for a breather so I don’t suffocate Joe.”

Children struggled with hanging on and letting go to a greater extent than their parents. They wanted to spend time with their ill parent and also to “get on with their own lives.” Feeling the pressure of dual loyalties (to their parents and to their own young families), the demands of both compounded the struggle that children faced.

Contending With Change

Those facing terminal illness in a family member experience changes in every realm of daily life—relationships, roles, socialization, and work patterns. The focus of the changes differed among family members. Patients faced changes in their relationships with everyone they knew. They realized that the greatest change of their life was underway and that life as they knew it would soon be gone. They tended to break down tasks into manageable pieces, and increasingly they focused inward. The greatest change that spouses faced was in their relationship with the patient. They coped by attempting to keep everything as normal as possible. Children contended with changes that were more all-encompassing. They could not withdraw as their ill parent did, nor could they prioritize their lives to the degree that their well parent could. They easily became exhausted. As Joe’s son explained, “It’s a real challenge coming by this often—I try to come twice a week and then bring the kids on the weekends. But I just got a promotion at work this year, so that’s extra work too. Seems like I don’t see my wife much—but she’s a real trooper. Her dad died last year so she knows what it’s like.”

Searching for Meaning

Searching for meaning has to do with seeking answers to help in understanding the situation.30 Patients tended to journey inward, reflect on spiritual aspects, deepen their most important connections, and become closer to nature: “The spiritual thing has always been at the back of my mind, but it’s developing more. … When you’re sick like that, your attitude changes toward life. You come not to be afraid of death.”

Spouses concentrated on their relationship with the patient. Some searched for meaning through personal growth, whereas others searched for meaning by simply tolerating the situation. Some focused on spiritual growth, and others adhered rigidly to their religion with little, if any, sense of inner growth or insight. Joe’s wife commented, “Joe and I are closer than ever now. We don’t like this business, but we have learned to love each other even more than when we were younger—sickness is a hard lesson that way.” In contrast, Ralph’s wife said with resignation, “He’s so stubborn—always has been. I sometimes wonder why I stayed. But, here I am.” Spouses and patients may attribute different meanings to other aspects of their experience as well. For example, when seeing their loved one in pain, many spouses felt helpless and fearful. Once the pain was controlled, they felt peaceful and relaxed and interpreted this as an indication that the couple would return to their old routines. The meaning attributed to the patient’s experience also influences spousal bereavement. For example, spouses who witnessed distressing sights and sounds as the patient was dying experienced posttraumatic stress and much distress after the death.31

Children tended to reflect on and reevaluate all aspects of their lives: “It puts in perspective how important some of our goals are. … Having financial independence and being able to retire at a decent age. … Those things are important, but not at the expense of sacrificing today.”

Living Day to Day

Not all families reached the point of living day to day. If patients were able to find some meaning in their experience, then they were better able to adopt an attitude of living each day. Their attitude was characterized by “making the most of it.” As one patient described it, “There’s not much point in going over things in the past; not much point in projecting yourself too far into the future either. It’s the current time that counts.” Patients who were unable to find much meaning in their experience, or who didn’t search for meaning, focused more on “getting through it.” As Ralph said with determination, “Sure, I am getting weaker. I know I am sick. … But I will get through this!”

Spouses who searched for meaning focused on “making the best of it” while making every effort to enjoy the time they had left with their partner. Other spouses simply endured the situation without paying much attention to philosophizing about the experience. Children often had difficulty concentrating on living day to day, because they were unable to defer their obligations and therefore were constantly worrying about what else needed to be done. However, some children were still able to convey an attitude of “Live for today, today—worry about tomorrow, tomorrow.”

Preparing for Death

Preparing for death involved concrete actions that would have benefit in the future, after the patient died. Patients had their family’s needs uppermost in their minds and worked hard to teach or guide family members with regard to various tasks and activities that the patient would no longer be around to do. Patients were committed to leaving legacies for their loved ones, not only as a means of being remembered but also as a way of comforting loved ones in their grief. Joe spent time “jotting down a few Mr. Fix-it pointers” for his wife and son. Ralph’s energy was consumed by focusing on the work he still had to do, so he was unable to consider what he might do for his wife and daughter.

Spouses concentrated on meeting the patient’s wishes. Whatever the patient wanted, spouses would try to do. They attended to practical details and anticipated their future in practical ways. Children offered considerable help to their parents with legal and financial matters. They also prepared their own children for what was to come. A central aspect was reassuring the dying parent that they would take care of the surviving parent. Children also prepared for the death by envisioning their future without their parent: “I think about it sometimes … about how my children will never have a grandfather. It makes me so sad. That’s why the photos we have been taking are so important to me. … They will show our children who their grandfather was.”

Palliative Care for Diagnoses Other Than Cancer

Traditionally, palliative care practice and discussions have focused on families of cancer patients, while care of the patient with cardiac disease has traditionally focused on restoring health and enabling a return to normal life. For most patients with heart disease, and particularly for those with heart failure, the decline in functional status is slower than for patients diagnosed with cancer.21 However, if palliative care is considered only after disease-related care fails or becomes too burdensome, the opportunity for patients to achieve symptom relief, and for patients and family members to engage in the positive and conscious process of fading away, may be lost. Following a model of care where issues of treatment and end-of-life care are discussed early and throughout the illness trajectory facilitates patient and family coping and enables nurses to optimally support families.

Varying disease trajectories for other conditions,32,33 including dementia, also influence the nature of support that nurses provide patients and families. For example, the support needed by families of patients with dementia often occurs before the life-limiting nature of the condition is recognized by families. In dementia care, there may be significantly more need than with other illnesses to form support groups for families, offer respite care, educate families, and try to relieve families’ feelings of guilt.34

Family Involvement According to Location of Care

Over the past century, nursing homes and hospitals increasingly have become the site of death. A landmark national study evaluated the US dying experience at home and in institutional settings.35 Family members of 1578 deceased individuals were asked via telephone survey about the patient’s experience at the last place of care at which the patient spent >48 hours. Results showed that two-thirds (67.2%) of patients were last cared for in an institution; little has changed in the intervening years. Family members reported greater satisfaction with patient’s symptom management, and with emotional support for both the patient and family, if they received care at home with hospice services. Families have greater opportunities for involvement in the care if home care is possible. Family involvement in hospital care also makes for better outcomes.36 Nurses, therefore, must consider how best to include families in the care of their dying loved ones, regardless of the location of care.

Large variations exist in the provision of home-based palliative and terminal care across the United States, although the development of hospice home services has enabled increasing numbers of seriously ill patients to experience care at home. However, dying at home can present special challenges for family members.37 Lack of support and lack of confidence have been found to be determinants contributing to hospital admissions and the breakdown of informal caregiving for people with a life-threatening illness. A lack of support from the healthcare system is given as the reason many caregivers have to admit their loved one to the hospital.12 They also report that fragmentation of services and lack of forward planning jeopardizes the success of home care.12

The decision to care for a family member at home has a profound effect on family members (Box 3.1).15,16 Many caregivers believe that providing home care for their loved one is the only option.12 Some make uninformed decisions, giving little consideration to the implications of their decision. Such decisions are often made early in the patient’s disease trajectory or when the patient was imminently dying. The patient’s needs and wishes often drive decisions, with caregivers paying little attention to their own needs.12 Negotiated decisions for home care typically occur if caregivers and patients are able to talk openly about dying, and have done so throughout the disease trajectory. For some families, a home death brings additional burdens, worries, and responsibilities.37

Family members may be reluctant to ask for help or to let their needs be known. They tend not to think of themselves as the target of professional interventions. When working with caregiving families, healthcare providers can facilitate the sharing of perspectives, to allow for decisions that would work well for all concerned. Ideally, such discussions begin early in the disease trajectory. It is important that attention is paid to improving hospital end-of-life care so that families feel they have a meaningful alternative to home care. There is an emotional impact in providing palliative care at home. The task caregiving imposes on family caregivers may seem overwhelming at times. Care must be provided within the framework of an interdisciplinary team38 so that families can benefit from a whole set of services needed to support death at home.

Some simple guidelines for families can serve to encourage their coping. For example, caregivers should be told to keep a small notebook handy for jotting down questions and answers. They should be advised to have the notebook with them whenever they talk with a member of the palliative care team. Family members should be reassured that nothing is trivial. All questions are important, and all observations are valuable. They should be encouraged to say when they do not understand something, and to ask for information to be repeated as necessary. They should reassure family members that asking for help is not a sign of failure, but rather a sign of good common sense. Following such simple guidelines helps keep families from feeling overwhelmed. And, if they do feel “out of control,” such guidelines, simple as they may seem, give family members some concrete action they can take to help with whatever the situation may be.

Caregiving at a Distance

About 89% of all informal caregivers are related to the care recipient,39 but not all caregiving is provided by family members who live with, or are geographically close to, the patient. Distant caregiving, the provision of instrumental and/or emotional support to an ill loved one who lives a long distance from the caregiver, is prevalent in today’s changing society.

Adult children often live far from their parents and find themselves caregiving from a distance. Millions of Americans are distant caregivers, and the number is only expected to increase as baby boomers and their parents age.40 An estimated 15% of caregivers live an hour or more from their loved one.39 These adult children are dealing with the added challenges and stressors associated with living at a distance, such as lack of nearby family support. There is some indication that stress related to the distant caregiving is quite common in caregivers41; otherwise, little is known about their experiences. Most interventions have been designed to support local caregivers. Interventions to decrease caregiver burden and improve caregiver well-being may not be as applicable to distant caregivers, who may need extra flexibility and accommodations, such as increased telephone communication, in order to meet their needs.

Advance Care Planning

Whether care is provided in hospital or by families in the home or at a distance, patients at the end of life may not be able to make decisions about their own care. Family members, therefore, are often asked to make those decisions on the patient’s behalf, yet they may not know explicitly what the patient would want. Advance care planning is a process that allows the patient’s preferences to be made known to the family and to healthcare professionals. It involves discussions between the patient and his or her family and friends, as well as written instructions in the event that a patient can no longer express his or her choices verbally. Advance care planning is best begun while family members are healthy but when someone is ill, then as early as possible in the illness experience and revisited as needed because preferences can change over time.42,43

However, even in the less than 30% of cases when an adult has an advance directive, it may be neither specific enough nor available when needed.44 Clinicians should ask whether advance directives are available, and they might invite family discussion regardless of whether or not such directives are in place. It is important for clinicians to be familiar with a patient’s advance directive and to advocate for the patient if needed. Information about advance directives is available from the American Cancer Society.45

Guidelines for Nursing Interventions

Despite differences across and between cultures, similarities exist in regard to basic needs for support, dignity, and connections with others.46,47,48,49 Much of the nursing literature, which provides guidelines for nursing care, addresses the importance of four major interventions that have relevance for all members of the palliative care team:

  1. 1. Maintain hope in patients and their family members. As families pass through the illness trajectory, the nature of their hope changes from hope for cure, to hope for remission, to hope for comfort, to hope for a good death. Offering hope during fading away can be as simple as reassuring families that everything will be done to ensure the patient’s comfort. Talking about the past also can help some families by reaffirming the good times spent together and the ongoing connections that will continue among family members. Referring to the future beyond the immediate suffering and emotional pain can also sustain hope. For example, when adult children reassure the ill parent that they will care for the other parent, the patient is hopeful that the surviving spouse will be all right.

  2. 2. Involve families in all aspects of care. Include them in decision-making, and encourage active participation in the physical care of the patient. This is their life—they have the right to control it as they will. Involvement is especially important for children when a family member is very ill. The more children are involved in care during the terminal phase, and in the activities that follow the death, the better able they are to cope with bereavement.50,51

  3. 3. Offer information. Tell families about what is happening in straightforward terms and about what they can expect to happen, particularly about the patient’s condition and the process their loved one is to undergo. Doing so also provides families with a sense of control. Initiate the discussion of relevant issues that family members themselves may hesitate to mention. For example, the nurse might say, “Many family members feel as if they are being pulled in two or more directions when a loved one is very ill. They want to spend as much time as possible with the patient, but they also feel the pull of their own daily lives, careers, or families. How does this fit with your experience?”

  4. 4. Communicate openly. Open and honest communication with nurses and other health professionals is frequently the most important need of families. They need to be informed; they need opportunities to ask questions and to have their questions answered in terms that they can comprehend. Open communication among team members is basic to open communication with the families.

These four broad interventions assist healthcare providers in providing good palliative care; the following guidelines offer further direction (Tables 3.1 and 3.2). They are derived from the direct accounts of patients, spouses, and children about the strategies they used to cope with the dimensions of fading away.

Table 3.1 Dimensions of Family Functioning: Examples of the Range of Behaviors

More Helpful

Less Helpful

Integrating the Past

Describe the painful experiences as they relate to present experience

Describe past experiences repeatedly

Describe positive and negative feelings concerning the past

Dwell on painful feelings associated with past experiences

Incorporate learning from the past into subsequent experiences

Do not integrate learning from the past to the current situation

Reminisce about pleasurable experiences in the past

Focus on trying to “fix” the past to create happy memories that are absent from their family life

Dealing With Feelings

Express a range of feelings including vulnerability, fear, and uncertainty

Express predominantly negative feelings, such as anger, hurt, bitterness, and fear

Acknowledge paradoxical feelings

Acknowledge little uncertainty or few paradoxical feelings

Solving Problems

Identify problems as they occur

Focus more on fault finding than on finding solutions

Reach consensus about a problem and possible courses of action

Dwell on the emotions associated with the problem

Consider multiple options

Unable to clearly communicate needs and expectations

Open to suggestions

Feel powerless about influencing the care they are receiving

Approach problems as a team rather than as individuals

Display exaggerated response to unexpected events

Withhold information from or inaccurately share information with other family members

Utilizing Resources

Utilize a wide range of resources

Utilize few resources

Open to accepting support

Reluctant to seek help or accept offers of help

Open to suggestions regarding resources

Receive help mostly from formal sources rather than from informal support networks

Take the initiative in procuring additional resources

Avoid seeking or exploring additional resources on their own

Express satisfaction with results obtained

Express dissatisfaction with help received

Describe the involvement of many friends, acquaintances, and support persons

Describe fewer friends and acquaintances who offer help

Considering Others

Acknowledge multidimensional effects of situation on other family members

Focus concern on own emotional needs

Express concern for well-being of other family members

Fail to acknowledge or minimize extra tasks taken on by others

Focus concern on patient’s well-being

Focus on own self

Appreciate individualized attention from healthcare professionals, but do not express strong need for such attention

Display inordinate need for individualized attention

Direct concerns about how other family members are managing rather than about themselves

Focus concerns on themselves

Identify characteristic coping styles of family unit and of individual members

Describe own characteristic coping styles rather than the characteristic way the family as a unit coped

Demonstrate warmth and caring toward other family members

Allow one member to dominate group interaction

Consider present situation as potential opportunity for family’s growth and development

Lack comfort with expressing true feelings in the family group

Value contributions of all family members

Feign group consensus where none exists

Describe a history of closeness among family members

Describe few family interactions prior to illness

Fulfilling Roles

Demonstrate flexibility in adapting to role changes

Demonstrate rigidity in adapting to role changes and responsibilities

Share extra responsibilities willingly

Demonstrate less sharing of responsibilities created by extra demands of patient care

Adjust priorities to incorporate extra demands of patient care and express satisfaction with this decision

Refer to caregiving as a duty or obligation

Enlist assistance as needed and entrust responsibilities to others

Criticize or mistrust caregiving provided by others

Tolerating Differences

Allow differing opinions and beliefs within the family

Display intolerance for differing opinions or approaches of caregiving

Tolerate different views from people outside the family

Demonstrate critical views of friends who fail to respond as expected

Willing to examine own belief and value systems

Adhere rigidly to belief and value systems

From reference 52.

Table 3.2 Family Functioning: Guidelines for Interventions in Palliative Care

Assessing Family Functioning

Solving Problems

Use dimensions of family functioning to assess families. For example: Do members focus their concern on the patient’s well-being and recognize the effect of the situation on other family members, or do family members focus their concerns on their own individual needs and minimize how others might be affected? Putting your assessment of all the dimensions together will help you determine to what degree you are dealing with a more cohesive family unit or a more loosely coupled group of individuals, and hence what approaches are most appropriate.

Use your assessment of family functioning to guide your approaches. For example, in families where there is little consensus about the problems, rigidity in beliefs, and inflexibility in roles and relationships, the common rule of thumb—offering families various options so they may choose those that suit them best—tends to be less successful. For these families, carefully consider which resource provides the best possible fit for that particular family. Offer resources slowly, perhaps one at a time. Focus considerable attention on the degree of disruption associated with the introduction of the resource, and prepare the family for the change that ensues. Otherwise, the family may reject the resource as unsuitable and perceive the experience as yet another example of failure of the healthcare system to meet their needs.

Be prepared to collect information over time and from different family members. Some family members may not be willing to reveal their true feelings until they have developed trust. Others may be reluctant to share differing viewpoints in the presence of one another. In some families, certain individuals take on the role of spokesperson for the family. Assessing whether everyone in the family shares the viewpoints of the spokesperson, or whether different family members have divergent opinions but are reluctant to share them, is a critical part of the assessment.

Be aware of the limitations of family conferences and be prepared to follow up. Family conferences work well for more cohesive family units. However, where more disparity exists among the members, they may not follow through with the decisions made, even though consensus was apparently achieved. Though not voicing their disagreement, some family members may not be committed to the solution put forward and may disregard the agreed-on plan. The nurse needs to follow up to ensure that any trouble spots are addressed.

Listen to the family’s story and use clinical judgment to determine where intervention is required. Part of understanding a family is listening to their story. In some families, the stories tend to be repeated and the feelings associated with them resurface. Talking about the past is a way of being for some families. It is important that the nurse determine whether family members are repeatedly telling their story because they want to be better understood or because they want help to change the way their family deals with the situation. Most often the stories are retold simply because family members want the nurse to understand them and their situation better, not because they are looking for help to change the way their family functions.

Be prepared to repeat information. In less cohesive families, do not assume that information will be accurately and openly shared with other family members. You may have to repeat information several times to different family members and repeat answers to the same questions from various family members.

Evaluate the appropriateness of support groups. Support groups can be a valuable resource. They help by providing people with the opportunity to hear the perspectives of others in similar situations. However, some family members need more individualized attention than a support group provides. They do not benefit from hearing how others have experienced the situation and dealt with the problems. They need one-to-one interaction focused on themselves with someone with whom they have developed trust.

Adjust care to the level of family functioning. Some families are more overwhelmed by the palliative care experience than others. Understanding family functioning can help nurses appreciate that expectations for some families to “pull together” to cope with the stress of palliative care may be unrealistic. Nurses need to adjust their care according to the family’s way of functioning and be prepared for the fact that working with some families is more demanding and the outcomes achieved are less optimal.

From Davies B, Chekryn Reimer J, Brown P, Martens N. Fading Away: The Experience of Transition in Families With Terminal Illness. Amityville, NY: Baywood; 1995.

Summary

Family-centered care is a basic tenet of palliative care. Illness is incorporated into every aspect of family life. The patient’s illness affects the whole family, and in turn the family’s responses affect the patient. Supporting families in palliative care means that nurses must plan their care with an understanding not only of the individual patient’s needs but also of the family system within which the patient functions.

References

1. US Census Bureau. America’s families and living arrangements: 2011. Family status and household relationship of people 15 years and over, by marital status, age, and sex: 2011 (Table A2). Retrieved from http://www.census.gov/population/www/socdemo/hh-fam/cps2011.html.

2. Panke JT, Ferrell BR. The family perspective. In: Hanks G, Cherny N, Christakis NA, Fallon M, Kaasa S, Portenoy RK, eds. Oxford Textbook of Palliative Medicine. 4th ed. Oxford: Oxford University Press; 2010:1437–1444.Find this resource:

3. Field MJ, Cassell CK, eds. Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Press, 1997.Find this resource:

4. Wittenberg-Lyles E, Demiris G, Oliver DP, Burt S. Reciprocal suffering: caregiver concerns during hospice care. J Pain Symptom Manage. 2011;41(2):383–393.Find this resource:

5. Northouse LL, Katapodi MC, Song L, Zhang L, Mood DW. Interventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA: Cancer J Clin. 2010;60:317–339.Find this resource:

6. Stajduhar KI, Martin WL, Barwich D, Fyles G. Factors influencing family caregivers’ ability to cope with providing end-of-life cancer care at home. Canc Nurs. 2008;31:77–85.Find this resource:

7. Aoun S, McGonigley R, Abernethy A, Currow DC. Caregivers of people with neurodegenerative diseases: profile and unmet needs from a population-based survey in South Australia. J Pall Med. 2010;13(6):653–661.Find this resource:

8. Milberg A, Olsson EC, Jakobsson M, Olsson M, Friedrichsen M. Family members’ perceived needs for bereavement follow-up. J Pain Symptom Manage. 2008;35(1):58–69.Find this resource:

9. Milberg A, Strang P. Protection against perceptions of powerlessness and helplessness during palliative care: the family members’ perspective. Pall Supp Care. 2011;9(3):251–262.Find this resource:

10. Corà A, Partinico M, Munafò M, Palomba D. Health risk factors in caregivers of terminal cancer patients: a pilot study. Cancer Nurs. 2012;35(1):38–47.Find this resource:

11. Kenny P, Hall J, Zapart S, Davis PR. Informal care and home-based palliative care: the health-related quality of life of carers. J Pain Symptom Manage. 2010;40(1):35–48.Find this resource:

12. Robinson CA, Pesut B, Bottorff JL. Supporting rural family palliative caregivers. J Fam Nurs. 2012;18(4):467–490.Find this resource:

13. Funk L, Stajduhar KI, Toye C, Aoun S, Grande GE, Todd CJ. Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998–2008). Pall Med. 2010;24(6):507–607.Find this resource:

14. Grande G, Stajduhar K, Aoun S, et al. Supporting lay carers in end of life care: current gaps and future priorities. Pall Med. 2009;23(4):339–344.Find this resource:

15. Stajduhar K, Funk L, Jakobsson E, Ohlen J. A critical analysis of health promotion and “empowerment” in the context of palliative family care-giving. Nurs Inquiry. 2010;17(3):221–230.Find this resource:

16. Stajduhar K, Funk L, Toye C, Grande GE, Soun S, Todd CJ. Part 1: Home based family caregiving at the end of life: a comprehensive review of published quantitative research (1998–2008). Pall Med. 2010;24(6):573–593.Find this resource:

17. Benzein EG, Saveman B. Health-promoting conversations about hope and suffering with couples in palliative care. Int J Palliat Nurse. 2008;14:439–445.Find this resource:

18. Fine E, Reid MC, Shengelia R, Adelman RD. Directly observed patient–physician discussions in palliative and end-of-life care: a systematic review of the literature. J Palliat Med. 2010;13(5):595–603.Find this resource:

19. Rhodes RL, Mitchell SL, Miller SC, Connor SR, Teno JM. Bereaved family members’ evaluation of hospice care: what factors influence overall satisfaction with care? J Pain Sympt Manage. 2008;35:365–371.Find this resource:

20. Hasson F, Kernohan WG, McLaughlin M, et al. An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliat Med. 2010;24(7):731–736.Find this resource:

21. Saunders MM. Factors associated with caregiver burden in heart failure family caregivers. West J Nurs Res. 2008;30(8):943–959.Find this resource:

22. Aoun SM, Connors SL, Priddis L, Breen LJ, Colyer S. Motor neurone disease family carers’ experiences of caring, palliative care and bereavement: an exploratory qualitative study. Palliat Med. 2012;26(6):842–850.Find this resource:

23. Hennings J, Froggatt K, Keady J. Approaching the end of life and dying with dementia in care homes: the accounts of family carers. Rev Clin Geront. 2010;20:114–127.Find this resource:

24. World Health Organization. Palliative Care for Older People: Better Practices. Author 2011. Retrieved from http://www.euro.who.int/__data/assets/pdf_file/0017/143153/e95052.pdf.

25. Davies B, Chekryn Reimer J, Brown P, Martens N. Fading Away: The Experience of Transition in Families With Terminal Illness. Amityville, NY: Baywood; 1995.Find this resource:

26. Bridges W. Transitions: Making Sense of Life’s Changes. Reading, MA: Addison-Wesley; 1980.Find this resource:

27. Stajduhar KI, Martin WL, Barwich D, Fyles G. Factors influencing family caregivers’ ability to cope with providing end-of-life cancer care at home. Cancer Nurs. 2008;31(1):77–85.Find this resource:

28. Fitzsimons D, Mullan D, Wilson JS, et al. The challenge of patients’ unmet palliative care needs in the final stages of chronic illness. Palliat Med. 2007;21(4):313–322.Find this resource:

29. Wolkowski A, Carr SM, Clarke CL. What does respite care mean for palliative care service users and carers? Messages from a conceptual mapping. Int J Palliat Nurs. 2010;16(8):388–392.Find this resource:

30. Hexem KR, Mollen CJ, Carroll K, Lanctot DA, Feudtner C. How parents of children receiving pediatric palliative care use religion, spirituality, or life philosophy in tough times. J Palliat Med. 2011;14(1):39–44.Find this resource:

31. Sanderson C, Lobb EA, Mowll J, Butow PN, McGowan N, Price MA. Signs of post-traumatic stress disorder in caregivers following an expected death: a qualitative study. Palliat Med. 2013;27(7):625–631.Find this resource:

32. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005;330(7498):1007–1011.Find this resource:

33. Murray SA, Sheikh A. Care for all at the end of life. BMJ. 2008;336(7650):958–959.Find this resource:

34. van der Steen JT, Radbruch L, Hertogh CMPM, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. July 2013; published online before print.Find this resource:

35. Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of death. JAMA. 2004;291:88–93.Find this resource:

36. Spichiger E. Family experiences of hospital end-of-life care in Switzerland: an interpretive phenomenological study. Int J Palliat Nurs. 2009;15(7):332–337.Find this resource:

37. Stajduhar K. Burdens of family caregiving at the end of life. Clin Invest Med. 2013;36(3):E121–E126.Find this resource:

38. Klarare A, Hagelin CL, Fürst CJ, Fossum B. Team interactions in specialized palliative care teams: a qualitative study. J Palliat Med. 2013;16(9):1062–1069.Find this resource:

39. National Alliance for Caregiving; in collaboration with AARP. Caregiving in the U.S.: A Focused Look at Those Caring for the 50+. Author; 2009. Retrieved from http://assets.aarp.org/rgcenter/il/caregiving_09.pdf.

40. National Institute on Aging. So Far Away: 20 Questions and Answers About Long-Distance Caregiving. NIH Publication No. 10-5496. Bethseda MD: National Institutes of Health, 2011. Retrieved from http://www.nia. nih.gov/sites/default/files/so_far_away_twenty_questions_about_ long-distance_caregiving.pdf.

41. Alzheimer’s Association. Alzheimer’s Disease: Facts and Figures. Author; 2013. Retrieved from http://www.alz.org/alzheimers_disease_facts_and_figures.asp.

42. Robinson CA. Advance care planning: re-visioning our ethical approach. Can J Nurs Res. 2011;43(2):18–37.Find this resource:

43. Robinson CA. “Our best hope is a cure”: hope in the context of advance care planning. Pall Supp Care. 2012;10:75–82.Find this resource:

44. Dunn PM, Tolle SW, Moss AH, Black JS. The POLST paradigm: respecting the wishes of patients and families. Ann Long-Term Care. 2007;15(9):33–40.Find this resource:

45. American Cancer Society. Advance Directives. Author; 2011. Retrieved from http://www.cancer.org/acs/groups/cid/documents/webcontent/002016-pdf.pdf.

46. Yeh P-M, Bull M. Influences of spiritual well-being and coping on mental health of family caregivers for elders. Res Gerontol Nurs. 2009;2(3):173–181.Find this resource:

47. Ferrell B, Otis-Green S, Economou D. Spirituality in cancer care at the end of life. Cancer J. 2013;19(5):431–437.Find this resource:

48. Donovan R, Williams A, Stajduhar K, Brazil K, Marshall D. The influence of culture on home-based family caregiving at end-of-life: a case study of Dutch reformed family care givers in Ontario, Canada. Soc Sci Med. 2011;72(3):338–346.Find this resource:

49. Kongsuwan W, Chaipetch O, Matchim Y. Thai Buddhist families’ perspective of a peaceful death. Nurs Crit Care. 2012;17(3):151–159.Find this resource:

50. Davies B. Environmental factors affecting sibling bereavement. In: Davies B. Shadows in the Sun: Experiences of Sibling Bereavement in Childhood. Philadelphia: Brunner/Mazel; 1999:123–148.Find this resource:

51. Steele R, Robinson C, Hansen L, Widger, K. Families and palliative/end-of-life care. In Kaakinen J, Gedalfy-Duff V, Coehlo D, Hanson S, eds. Family Health Care Nursing: Theory, Practice and Research. 4th ed. Philadelphia: F. A. Davis; 2010:273–306.Find this resource:

52. Davies B, Reimer J, Martens N. Family functioning and its implications for palliative care. J Palliat Care. 1994;10:35–36.Find this resource: