In Review
Palliative Care for Families: Remembering the Hidden Patients Linda J Kristjanson, RN, BN, MN, PhD1, Samar Aoun, BSc, MPH, PhD2 Families of patients receiving palliative care are profoundly affected by the challenges of the illness. They observe care that the patient receives, provide care for the patient, and receive support from health professionals in the form of information, counselling, or practical assistance. As they witness and participate in the patient’s care, they judge the quality of care that the patient receives. They often see themselves as the patient’s care advocates and may harbour regret and guilt if they believe that the patient did not have the best possible care. The illness experience profoundly affects family members’ psychological and physical health; recognition of this has coined the term “hidden patients.” This article briefly synthesizes empirical work that suggests how to best support families in a palliative care context. We discuss how to define the family, emphasizing a systems approach to family care. We describe the impact of the illness on the family in terms of family members’ health, family communication issues, psychological issues, needs for information, physical care demands, and family costs of caring. (Can J Psychiatry 2004;49:359–365) Information on author affiliations appears at the end of the article.
Clinical Implications · The impact of terminal illness on the family may have significant and enduring effects on the physical, mental, and financial well-being of family caregivers. · Family caregivers have unmet needs for information, support, and communication. · It is critical to monitor the needs and well-being of family caregivers and target those most in need with therapeutic interventions. Limitations · This review is not exhaustive of all the relevant literature, although the issues covered represent those identified in the literature. · Empirical work related to families in a palliative care context is quite recent and is only beginning to be seen as an important area within the domains of clinical practice and research.
Key Words: families, palliative care, family health, psychosocial care, family caregivers, caregiving burden amilies of patients receiving palliative care are profoundly affected by the challenges of the illness. They must manage daily caregiving expectations, alterations to their roles, and changing responsibilities within the family. They also confront shifts in their understanding of the meaning of life and relationships as they come to recognize the terminal end point of the patient’s illness. Family members manage physical care changes and practical difficulties with daily living while they handle their own emotional distress about the patient’s care and concerns about the future.
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Families bring with them diverse histories and different approaches to coping. Some may experience the palliative care phase of an illness as a time of closeness, reflection, and enhanced family interactions. Others may bend under the burden of the illness and communication difficulties, and dysfunctional family patterns may emerge. Memories about the palliative care experience follow families in the bereavement period, sometimes complicating their grief and leaving them with feelings of regret. A family’s perceptions of the care experience may also affect their health and family functioning 359
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(1). This article briefly synthesizes empirical work that suggests how to support families in a palliative care context.
Palliative Care: Variations on a Theme Palliative care is the specialized treatment of people with incurable illnesses. Its major goals are to provide comfort and care for terminally ill patients and their families and to allow patients to die peacefully in the setting of their choice (often their own home) while receiving all necessary nursing, medical, psychosocial, and spiritual care. Until recently, palliative care has tended to focus on the needs of cancer patients and their families. Lately, however, palliative care has been expanded to the care of individuals with other progressive terminal conditions. Consequently, the types of patients and families who require support have become more diverse, with potentially different needs for support, information, and practical assistance. Palliative care support that patients and families may encounter falls into 2 broad categories: specialist palliative care services and a more general palliative care approach offered by nonspecialists. The patient’s and not the family’s needs determine palliative support received, because referral to a specialist palliative team is usually determined by the level of the patient’s symptom distress or the complexity of care needs at the terminal stage of the illness. Specialist palliative care services have palliative care as their core specialty. They are needed by a minority of people whose deaths are anticipated; they may be provided directly, through the specialist services, or indirectly, through advice to a patient’s professional caregivers. These palliative services provide physical, psychological, social, and spiritual support and involve practitioners from a broad range of disciplines, including medicine, nursing, social work, mental health, pastoral care, physiotherapy, occupational therapy, pharmacy, and related specialties (2). When physical symptoms severely distress patients or when patients have complex psychological concerns and family communication is strained, referral to and involvement of a specialist palliative care team can be extremely beneficial. Family members who witness a loved one’s uncontrolled suffering can experience vicarious suffering that is relieved by prompt, expert symptom treatment (3). Many other patients may benefit from a palliative care approach. Aiming to promote quality of life for individuals and their families facing the problems associated with life-threatening illness, this approach seeks to prevent and relieve suffering through early identification, assessment, and treatment of pain and other physical, psychosocial, and spiritual problems (4). It may be given concomitantly with other services in a range of care settings (that is, home, hospital, and nursing home) by general practitioners and nurses with expertise in palliative care. In these situations, families can benefit 360
from the care management advice of the health team, from respite support, from assistance with learning how to provide care to the patient, and from an opportunity to discuss their concerns and fears related to the progressive illness. A palliative approach emphasizes supporting the choices of patients and their families and has created some expectations regarding the patient’s choice to die at home. The family’s ability to meet this request depends on family composition and resources, their confidence in providing care, and access to appropriate care support (5). It is estimated that between 50% and 70% of terminally ill patients prefer to die at home in the comfort of familiar surroundings (6). A 1997 Angus Reid poll indicated that 90% of Canadians wish to remain in their own homes, yet only 6% of caregivers feel they can adequately care for their loved ones without hospice palliative care support (7). The preference for a home death is compatible with many health funders’ aims to shift health care from institutions to the community. As well, there is compelling evidence to indicate that home-based palliative care is more cost-effective than hospital-based palliative care (8). However, it is important to note that studies of the costs associated with the location of death have not for the most part taken into account the indirect costs to the family in terms of home care and lost income. Therefore, expectations and efforts to provide home-based palliative care must take into account the financial strains on families and the caregiving burden that family members may experience, so that family caregiver health is not compromised. Regardless of the palliative care service provided, the family’s role as both caregiver and care recipient must be considered.
Defining the Family The palliative approach generally refers to the family as the “unit of care.” The Canadian Palliative Care Association defines family as “those closest to the patient in knowledge, care and affection. This includes the biological family, the family of acquisition (related by marriage/contract), and the family of choice and friends (not related biologically, by marriage/contract)” (9). According to this definition, families may comprise different individuals who may or may not be related through blood or legal ties. Families may include a couple or a large network of relatives, close friends, and neighbours. Families have their own distinctive biographies formed by the backgrounds, interactions, options, and values that they interlink to define themselves as a family unit. Family members will have various needs, obligations, histories, and resources. From a clinical perspective, the most practical approach to defining the family affected by the patient’s illness is to permit patients and their family members to self-define it. W Can J Psychiatry, Vol 49, No 6, June 2004
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Failure to recognize the distinct characteristics or membership of families may exclude some family members who may need support. This error may be more common when families do not fit a traditional definition. Individuals in homosexual relationships, blended families, families who live geographically apart, and those without apparent formal ties may be neglected in the family care approach if their relationship to the patient is not understood and respected (10–12). Therefore, supportive palliative care to families begins with careful consideration of who constitutes the family.
The Family as a System Family systems theory is helpful for understanding the impact of a terminal illness on the family. It specifies that family members make up the family system and that a change in one part of the family system changes the rest of the system (13). Family system boundaries vary in permeability: some families have rigid and closed boundaries, whereas others have more open and diffuse boundaries (13). Both extremes of this boundary continuum can be unhealthy. Families with extremely rigid boundaries function in an isolated and nonadaptive manner; they allow little individuality within the family and are resistant to new information and ideas. At the other extreme of the continuum are families with boundaries so diffuse that the family appears to have little identity; they function chaotically, with little sense of connection among members (13). Families who are able to support each other and allow individuals to express their own forms of individuality while still maintaining a sense of connection are better able to adapt to changes that impinge on the family system (13).
Health of the Family Members Family members are in a unique position of both giving and needing support (14). They tend to be overlooked by health professionals and are often referred to as “hidden patients” (15). Family members who witness the patient’s distress may experience psychological anguish and guilt if they are unable to comfort the patient or obtain the necessary medical assistance to relieve the patient’s suffering (3). As well, the burden of caring may adversely affect family members who lack adequate resources or are poorly prepared for the caregiving role (16–18). Families of palliative care patients experience several health changes, both during the patient’s illness and in the bereavement period (19–20). Chronic illnesses (for example, hypertension) may be exacerbated. Evidence also indicates that children may experience more illnesses and accidents during a family member’s terminal illness (21). Kristjanson and colleagues demonstrated that family members experience deteriorating health during the palliative care phase and also in the bereavement period (19). Their study found that health status Can J Psychiatry, Vol 49, No 6, June 2004 W
of these individuals was much poorer, compared with a “normal healthy” population. Deteriorating health was most evident in mental health changes (for example, difficulty concentrating, depressed mood, and anxiety). The extent to which these changes were indicators or precursors of more serious clinical depression or anxiety disorders was not determined. However, the findings suggested that referring these family members for further assessment was warranted. Family members who experienced deterioration in health during the palliative care phase also reported similar deterioration in the bereavement period 3 months after the patient’s death. Other researchers have described similar mental health changes (22,23). Health changes most frequently present as psychological difficulties (for example, depression and sleep disorders) and cognitive changes (for example, difficulty concentrating) (24,25). Therefore, attention must be paid to the health needs of family members.
Psychological Issues Prompted by the Patient’s Illness Three common psychological issues are often triggered by the patient’s illness: questions about the meaning of the illness, feelings of loss or threatened loss, and a sense of isolation (10,11,26). Meaning of the Illness The diagnosis of a progressive terminal illness touches basic aspects of an individual’s orientation to living: time, purpose, inclusion, and sense of future. The diagnosis is a decidedly unwelcome event that is not part of the normal expectations about the family’s life course. It is all-encompassing, at least for a time, and usually captures most of the patient’s and family members’ energies. Family members will reexamine their views about the future, the quality of their relationships, and the choices they have made up to the time of diagnosis. They may search for an explanation (for example, in diet and heredity) that will make sense of this occurrence in their lives. They may look for someone or something to blame (for example, delayed diagnosis and poor self-care on the part of the patient). They may also blame themselves if they feel they did not encourage the patient to seek medical attention earlier. These questions may create guilt, tension, anger, and distrust that make it difficult for family members to receive support (11). Conversely, family members may also look for a positive interpretation of the illness experience. They may reinvest in relationships with each other and may adjust their activities or goals to allow more time to be spent with the patient. The challenge for health professionals is to listen carefully for the meaning that family members may create for the event in response to the illness. Sensitive attention to the various questions and fears that may surface in this search for meaning will 361
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allow health professionals to provide information and reassurance that will help families interpret the event (11). Feelings of Loss or Threatened Loss The diagnosis of terminal illness in a family member prompts feelings of loss or threatened loss. These feelings may be rooted in fears of losing a significant person and in a sense of loss regarding hopes and plans that may no longer appear feasible. Family members themselves may become more aware of death as a concrete possibility and may consequently face issues regarding their own lives, such as choices made or not made and questions about the quality of their relationships. Family members may feel alone in the world as they abruptly face the finite temporal dimension of life. Awareness of loss can trigger grief, depression, and anxiety. Ramirez and others reported that the prevalence of anxiety among family caregivers was as high as 46% and the prevalence of depression was as high as 39% in the year before the death of a cancer patient (27). Approximately one-half of caregivers reported problems sleeping and about one-third reported weight loss during the year. Both patients and families rated family caregiver anxiety as the most severe problem next to patient symptoms. The extent to which these psychological symptoms were treated was not clear from the report. Longitudinal studies of their impact on families are needed. Isolation The family may be isolated when friends and other family members do not respond with their physical or emotional presence. Family members may also be isolated when some must assume most of the care responsibility while others withdraw or show no understanding of the magnitude of the pain or the process of caring for a loved one. Isolation can be the physical, psychological, or spiritual absence of others (12). One of the most isolating situations occurs when others seek to comfort through inappropriate cheer or try, through inappropriate words, to transform bad into good or pain into privilege (28). Family Communication Issues In the case of cancer patients, poor communication causes more suffering to both patients and families than any other problem, except for unrelieved pain (29). The family’s previous communication patterns determine to a large extent the degree of communication that occurs within the family at the time of the cancer. Some family members may be open and clear in their exchanges about the illness, treatment decisions, and fears and doubts. Others may be reserved, holding back worries, regrets, and uncertainties. Communication is essential to healthy family functioning, and families with limited communication skills are less able to manage stressful situations (13). 362
Relationship strains may occur as the patient and family members try to protect each other from worries and concerns about the illness. Patients may serve as gatekeepers to information, because they usually have primary contact with the health care team. This scenario is particularly common when parents have cancer and are cautious about sharing information with their children (30,31). Family members often rely on the patient to convey important information about the illness that will help them cope with treatment or subsequent phases of the disease; they may feel uncertain or frustrated if they lack information. These protective approaches to sharing information can contribute to conflict, anxiety, and poor communication within the family.
The Quest for Information The literature consistently documents that families of cancer patients report difficulties regarding access to information. These include difficulties in obtaining specific and straightforward information that they can understand. Medical jargon is frequently mentioned as a barrier to adequate communication about the plan of care (32). Language barriers may also be a problem if patients and family members do not share the same language and cultural background as the health care professional (33). As well, differences in educational levels between health professionals and patients or their families can lead to problems with exchange of content (34). Health professionals may overload family members with large amounts of information, or conversely, they may provide information in small amounts in an effort not to overwhelm them with too much detail (35). This can create difficulties, because family members vary in the extent to which they may be able to assimilate and integrate shared information (36). Family members report that they hesitate to bother busy health professionals with questions about care because they believe that health care providers are primarily responsible to the patient and that their needs and concerns are tangential. The lack of time and space allotted for discussing care plans and goals partly indicates the perceived unimportance of communicating with the family and implies that this interchange is not very important. It is not unusual for patients and families to report communication about treatment and care in the hallways of busy hospitals, over the phone, or in small clinic rooms with little privacy or time for discussion (37). Health care professionals may also limit their information sharing with patients and families because of their busy work schedules, because they assume that patient and family have understood the information conveyed, and because they are uncomfortable about communicating difficult and bad news (38,39). W Can J Psychiatry, Vol 49, No 6, June 2004
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Attention to the factors that limit effective communication between family members and health care providers may assist families to fill this information vacuum and feel more confident about coping with the patient’s illness. Families who are well informed are better able to function supportively and experience less illness-related anxiety (11).
person may be singled out as the primary caregiver. An uncertain time trajectory for the illness may also make the demands more difficult: family members may be unsure of how long they will be required to undertake the additional physical tasks, which limits their ability to pace and conserve their energies (11).
Physical Care Demands
Family members may also experience role constriction when the caregiver eliminates other social roles in favour of one role only—that of caregiver. The result can be a kind of “cabin fever” that develops gradually and can affect the caregiver’s health. Family members may need help to identify how much constriction they will tolerate. In sum, families may need help to consider the patient’s level of disability and dependence, their own health, their other responsibilities and roles, and the availability of assistance. Families with rigid boundaries and a strong sense of caregiving duty may be most resistant to external help and may need encouragement to accept resources (11).
Family caregiving demands may be substantial when a patient is confronted with a terminal diagnosis. Family members may need to assume duties that the ill person cannot undertake and may experience practical problems associated with transportation to treatments, management of child care, unrelenting work demands that do not take the patient’s illness into consideration, and the challenges of maintaining a normally functioning household. Family members have roles in relation to each other that are based on expectations of what each person should do. They shift and change during the course of a lifetime, but generally, family members have a mental script outlining each person’s role. The script no longer fits when one person’s ability to perform his or her role changes (as in the case of illness) and other family members must undergo reciprocal role changes. Assuming new roles may be stressful as family members learn or accept new parts. Some may welcome taking on a role as caregiver or decision maker. However, the negotiation and shift to new roles often takes time, and the transition for the individual and all family members may be awkward (11). Pressures on family caregivers are also associated with family composition. For example, families with few members, families with young children, and families who are isolated may be particularly burdened by physical caring tasks because there are fewer individuals to share the load. If family members are elderly, they may have their own health problems. These additional stresses may make physical caregiving and the assumption of extra practical tasks more difficult or impossible. Family members often experience caregiver fatigue. New roles may have been assumed gradually, and their feelings of responsibility may prevent them from seeing alternative ways of receiving help with care. Families may require help to solve the demands created by the illness, often beginning with an acknowledgement that family members’ health must also be maintained. Instances of deteriorating health in the family caregiver while caring for an ill member are not uncommon. Caregiver fatigue may occur because caregivers are unaware of available resources that could be called upon to decrease the strain on the family. Some may experience fatigue because an underlying feeling of duty or guilt is satisfied through endless devotion to caring. Caregiver fatigue is not limited to small, isolated families. Caregivers who are members of large families can experience this fatigue as well, because one Can J Psychiatry, Vol 49, No 6, June 2004 W
The Costs of Caring The economic burden of family caregiving is beginning to be documented. England and Wales have more than 5 million unpaid family caregivers; more than 1 million provide care for more than 50 hours weekly. Two-thirds of these unpaid caregivers report that their health has been affected by caregiving, and 40% have an illness or disability themselves (40). According to a recent study conducted in the US, many caregivers of terminally ill patients with moderate or high care needs reported spending 10% of their household income on health care costs, needing to sell assets, taking out a loan or mortgage, or obtaining a second job to pay for health care costs (41). The economic impact of daily family involvement in living with cancer can be profound, especially owing to the lack of support services in many geographic areas (17). Findings from the few cost-estimate studies to date indicate that families are responsible for purchasing medications and home care supplies, for renting equipment, and for paying for transportation and respite services (42). A recent study indicates that, in Canada, patients and their family caregivers bear the financial costs associated with the move from institutional care to home care (43). If the recipient remained in hospital, many of these costs would be absorbed by the government, including expenses related to medical equipment, special meals, renovations to accommodate disabilities, repairs and maintenance of the care setting, and in some instances, prescription and nonprescription drugs. However, Canada has also just introduced legislation that will expand the employment insurance program, ensuring compassionate leave for caregivers who must take time off work to care for a gravely ill child, parent, or spouse (44). 363
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Schofield and others report that family caregiving commitments mean some caregivers are unable to work, work fewer hours, or work in a lower-paid job, with negative financial consequences (45). Children in the family, spouses, and other dependent members may share these worries (30). Family members may worry about the ongoing costs of medications and treatment. Indirect costs associated with caregiving or taking time from work to attend appointments or assist the patient may also be a source of concern (42). Family members may be reluctant to disclose these concerns, or they may feel guilty about having financial worries when the patient is so ill and perhaps suffering. Family members who are preoccupied with financial concerns may be distracted and less attentive to the patient’s care needs (46). A simple question about how families are coping with financial changes or pressures consequent to the illness may elicit these fears and allow health professionals to appropriately refer or help family members identify resources to help them manage. The opportunity to discuss these concerns may also ease the strain for those who may be reluctant to talk about them with the patient or with others.
Conclusion The number of families caring for individuals with progressive disease will continue to increase as we face the caregiving requirements of an aging population. According to the National Survey of Families and Households (47), there were in the US almost 26 million informal caregivers; projections from the 2000 census suggest that the number is as high as 54 million. The average caregiver age in this census was 46 years. More than 75% of family caregivers were women, 66% were married, and 41% also reported having children under age 18 years living in the home. Additionally, 64% of family caregivers indicated that they worked outside the home; 52% of these caregivers were working full-time. Clearly, this large informal caregivers’ group faces notable demands. These demands notwithstanding, family caregivers report that the caring role has benefits and rewards (48). There is also evidence that family caregivers feel a strong sense of duty to provide quality care to a loved one. A recent survey revealed that the most common reasons for being a family caregiver were a feeling of responsibility, believing that the family could provide better care than would otherwise be available, a sense of emotional obligation, and an absence of other family or friends (49). Helping family members to assume the caregiving role in a way that is sustainable and fulfilling should be the aim. Health care providers who view the family as the unit of care are better able to assess and identify supports for those in need of assistance. During a palliative phase of illness, attention to families who may be psychologically 364
vulnerable, lack resources, or have concomitant health issues and concerns constitutes good preventive family care. The role of mental health care professionals in supporting families facing a palliative illness in a relative has been underdeveloped and poorly researched. The psychological distress of families during the patient’s illness and in the bereavement period is clearly reported. However, the extent to which these families have access to mental health services and are receptive to them during the patient’s illness warrants empirical investigation. Of particular concern are family members who may be particularly vulnerable to mental health changes and who experience more mental health distress than would have been the case had they received earlier treatment. Attention to the psychological health of families is needed. To this end, sensitive, simple, valid, and reliable screening methods are also needed to allow caregivers’ appropriate referral to mental health care professionals during the stress of a relative’s terminal illness. If we do not care for these family members at this difficult time in their lives, they may well become our patients later. Funding and Support The first author gratefully acknowledges support from the Cancer Council of Western Australia, which funds her Chair of Palliative Care.
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Manuscript received and accepted March 2004. 1 Professor of Palliative Care, School of Nursing and Public Health, Edith Cowan University, Churchlands, Western Australia. 2 Associate Professor, School of Nursing and Public Health, Edith Cowan University, Churchlands, Western Australia. Address for correspondence: Prof LJ Kristjanson, School of Nursing and Public Health, Edith Cowan University, Pearson Street, Churchlands, Western Australia 6018 e-mail:
[email protected]
Résumé : Les soins palliatifs pour les familles : se souvenir des patients cachés Les familles des patients qui reçoivent des soins palliatifs sont profondément affectées par les problèmes de la maladie. Elles observent le soins prodigués au patient, fournissent des soins à celui-ci, et reçoivent le soutien des professionnels de la santé sous la forme d’information, de consultation ou d’aide pratique. Comme elles sont témoins des soins des patients et qu’elles y participent, elles jugent de la qualité des soins que reçoit le patient. Elles se voient souvent comme étant les défenseurs des soins du patient, et peuvent concevoir des regrets et de la culpabilité si elles croient que ce dernier n’a pas reçu les meilleurs soins possibles. L’expérience de la maladie affecte profondément la santé physique et psychologique des membres de la famille; la reconnaissance de ce fait a donné lieu à l’expression « patients cachés ». Cet article résume brièvement les travaux empiriques qui suggèrent la meilleure façon de soutenir les familles dans le contexte des soins palliatifs. Nous discutons de la façon de définir la famille, en insistant sur une approche des soins à la famille fondée sur des systèmes. Nous décrivons les répercussions de la maladie sur la famille en ce qui concerne la santé des membres de la famille, les questions psychologiques, les questions de communication familiale, les besoins en matière d’information, les demandes de soins physiques et les coûts des soins pour la famille.
Can J Psychiatry, Vol 49, No 6, June 2004 W
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