JOURNAL OF PALLIATIVE MEDICINE Volume 14, Number 7, 2011 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2010.0413
Family Caregivers and Palliative Care: Current Status and Agenda for the Future Peter Hudson, R.N., B.N. (Hons), Ph.D.1 and Sheila Payne, B.A. (Hons), DipN, R.N., Ph.D., CPsychol 2
Abstract
The quality of life of the person confronting the end stages of their life may be severely compromised without the support of family caregivers. Indeed, most people requiring palliative care would not be able to fulfill their preferences, such as care at home, without significant family caregiver input. As a consequence, health services are mandated to support the family alongside the person diagnosed with a life-threatening illness. In short, palliative care is supposed to be family centred. However, the quality and type of support made available to family caregivers has been questioned. The purpose of this review is to outline a succinct and empirically informed account of family caregiving within the context of palliative care and to propose an agenda for the future. The appraisal is underpinned by several systematic reviews, and other seminal publications from the last decade.
Introduction
T
he World Health Organization advocates that palliative care should not only improve the quality of life for patients but also for their families. Health care services and systems should aim to enhance family members’ coping during caregiving and through to bereavement.1 Accordingly, many nations have established standards for palliative care provision that are commensurate with these recommendations.2–4 For example, The American Academy of Hospice and Palliative Medicine has made family-centred care explicit within its ‘‘clinical practice guidelines for quality palliative care’’5 and guidelines in the United Kingdom advocate that family caregivers’ needs should be assessed and addressed.6,7 This review aims to provide an analysis of the current status of family caregiving in palliative and hospice care and to propose an agenda for the future. The purpose of the review is to outline a succinct and empirically informed account of family caregiving that in turn may provide a justifiable basis for clinicians, academics, and policy makers to enhance caregiver support. Our review is underpinned by several systematic reviews, other seminal publications from the last decade8–30 and a recently conducted project that identified family caregiver research priorities.31 The process for identifying publications to inform the review incorporated searching typical databases
for papers that focused on systematic literature reviews related to family caregivers of palliative care patients undertaken in the last decade. The reference lists of these publications were also reviewed. We commence by outlining why support for family caregivers is so important and then appraise the quality of support actually being provided. Thereafter we outline an agenda for the future. Why Supporting Family Caregivers Is Important There are multiple reasons why governments and health and social care services should offer support to family caregivers of palliative care patients. A summary of these reasons is provided in Table 1. Current Level of Support for Family Caregivers Even though there is a requirement for health and social care professionals to support family caregivers, the reality is that in many instances this support is suboptimal. A review of interventions to reduce caregiver strain and burden in those caring for cancer patients could not identify a suitable intervention to recommend for practice.21 Another author concluded that ‘‘at present, the evidence barely supports the claim that palliative care services provide effective support for informal caregivers’’ (43, p.162). A recent systematic review of
1 Centre for Palliative Care, St Vincent’s Hospital & Collaborative Centre of The University of Melbourne, Australia, and Queens University, Belfast, United Kingdom. 2 International Observatory on End of Life Care, Division of Health Research, School of Health and Medicine, Lancaster University, Lancashire, United Kingdom, and Monash University, Melbourne, Australia. Accepted January 22, 2011.
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FAMILY CAREGIVERS AND PALLIATIVE CARE Table 1. Reasons Why Family Caregivers Should Be Offered Support (1) Family caregivers typically have unmet needs and problems. Caregivers: Are prone to physical and psychological morbidity. Approximately 50% of caregivers are below population norms on physical health, and rates of probable depression and anxiety in up to 44% of caregivers have been reported.23,32–35 Are responsible for numerous tasks, such as symptom management.33 Are financially disadvantaged.33,34,36 Become socially isolated.9 Report unmet needs (typically aligned with lack of information about the caregiver role).11 Have needs equal to and/or greater than the needs of patients.37 (2) Confounding factors impact upon the caregiving role: Caregivers have very limited firsthand exposure to death and dying.11,33 Caregivers are often excluded from information and care planning and consequently feel underprepared for their role.11,38 (3) Caregivers have the potential for positive outcomes and gains. Caregivers: Can contemporaneously improve the care of palliative care patients.39 Have the potential (with suitable support) to gain positive outcomes from the role.11,34,40 Are pivotal to achieving ‘‘successful’’ home care (where most people prefer to die).12,16,41 Make a remarkable economic contribution to health care.22 May significantly enhance the well-being of patients when they are well supported.41,42
psychosocial interventions for family caregivers revealed that empirical inquiry regarding effective ways to provide support to family caregivers is still in its infancy. The authors acknowledged that unless this matter is redressed there will continue to be a disconnect between policy (that family caregivers’ needs are assessed and adequately responded to) and clinical practice (health professionals operating without a suitable evidence base to support family caregivers).44 Palliative care is also obliged to provide support for bereaved family relatives and it is recommended that bereavement services should be available to promote health, and reduce the risk of distress, dysfunction, or complicated grief.6,45 However, major difficulties are evident in the following areas: ascertaining bereavement support needs, appropriate response strategies, and a lack of consistency between service delivery approaches and the associated skills required for bereavement care.17,45,46 Palliative care services can improve some family caregiver outcomes47,48 when compared with standard care. However, the limitations of satisfaction surveys administered to family caregivers need to be acknowledged. Although such survey results are often favorable, there is no generally accepted conceptual framework for measurement. Additional psychometric tools are therefore needed to accurately examine family caregivers’ satisfaction.49 Hence, the reality is that much more needs to be done if palliative care service providers are to offer evidence-based
865 support designed to meet caregiver concerns. For example, it seems that many services may not be equipped to meet caregivers’ specific needs. They may lack the resources to undertake the assessment and have inadequate strategies to enable a suitable response. Many health professionals are not sufficiently trained in palliative care, funding for services is limited, and support for family caregivers may not be viewed as a priority.50,51 We are also concerned by lack of resources (in countries with seemingly well-developed economies) to provide optimal 24 hour a day, 7 day a week access to specialist palliative care advice regardless of where the person lives.36,52,53 As family support is one of the hallmarks of palliative care, lack of access becomes a major issue because of the potentially serious implications for vulnerable family caregivers.51 An additional concern is that in many countries with wellestablished palliative care systems more than half of those expected to die will not be seen by specialist palliative care services, especially among those who are visible minorities.54,55 Another potentially concerning situation in the specialist palliative care clinical setting is that health professionals may tend to focus attention on the primary family caregiver and not the entire family. The reasons for this are pragmatic: many health services may not be suitably resourced to meet the needs of the whole family.51 Agenda for the Future Research agenda The need for more research to underpin support for family caregivers related to palliative care has been recognized by an international assembly of senior researchers.56 It was also the rationale for the inception of the International Palliative Care Family Caregiver Research Collaboration (IPCFRC).57 Also, findings from a recent systematic review44 concluded that unless there is a major research investment in this area the claim43 that palliative care services provide family caregivers with effective support will continue to be disputed. Research associated with family caregivers is not without its challenges and many of these have been acknowledged elsewhere.51 The future of family caregiver research can only be enhanced through rigorous methodological approaches and an increase in comprehensive evaluation of interventions and needs assessment tools.16 This research should be underpinned by a relevant theoretical framework. One approach that seems to be consistently supported is the transactional model of coping, which asserts that caregivers make cognitive appraisals to determine the possible impact of a potentially stressful event.58,59 The more resilient the caregiver is, or the greater the number of resources at his or her disposal to manage the role, the more likely he or she will adapt. In this way, family caregiving need not necessarily be viewed as an inherently negative experience; it can vary, depending upon the person’s internal resources for coping. Such resources include feelings of preparedness, competence, having adequate information, and focusing on positive aspects of the role. Hence, this model may assist researchers to understand caregivers’ responses to their experience. An important aspect of the model is to enable researchers to design and evaluate interventions that target domains that may assist caregivers to respond more avourably to their role.59,60 Psychometrically sound instruments for use with family caregivers should be available for researchers to evaluate
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interventions and to allow clinicians to effectively elicit, assess, and monitor caregivers’ ongoing needs.22 A systematic review undertaken to identify articles that described the use of instruments administered to family caregivers of palliative care patients (pre and post-bereavement) found that although a considerable variety of instruments have been administered to family caregivers, their validity is often lacking or is still being determined.24 Moreover, the reviewers concluded that apart from a couple of specific areas, researchers should exercise caution before developing new instruments for this population. Findings from reviews of the general caregiving literature (incorporating palliative care)20 have found that the typical reasons interventions have been unsuccessful include: (1) outcome measures utilized have not been sufficiently sensitive to change, (2) the elements of the interventions have not been specific enough to meet caregiver needs, and (3) most interventions have been multidimensional; hence the type of evaluation performed has not been conducive to determining which components of the intervention were more or less effective. The literature demonstrates that interventions aimed toward psychoeducation, problem-solving, and cognitive restructuring can show demonstrable effects on caregiver well-being.20,44 Several other methodological recommendations for improving family caregiver research have been suggested and these are summarized in Table 2. In addition, there is no clear consensus as to whether or not group versus individual interventions are more effective.20,63 Our contention is that this debate is not worth pursuing as it appears that some family caregivers will prefer and possibly be more likely to favorably respond to single approaches and for others, group formats may be more acceptable. Hence, a suite of interventions is required so that caregivers can access the one that best matches their needs and preferences. It would also appear that there are commonalities between different caregiver populations, in terms of the experience of the caregiver role and what helps them.20 This claim supports the view put forward by others51 who argue that there may be ways of designing interventions for supporting caregivers that have generic application, while acknowledging there will always be the need for individual variation.
Table 2. Methodological Recommendations for Enhancing Family Caregiver Research in Palliative Care 1. More insight into the effective ‘‘dose’’ of support interventions, the optimal time for their delivery, and the appropriate mode of delivery.20 2. Importance of involving caregivers in the design of the intervention.22 3. More longitudinal projects and randomized controlled trials.22 4. Increased sample sizes of quantitative studies.22 5. Given caregiver interventions are typically complex, advocate utilizing an established framework, for example Medical Research Council (UK) approach to complex interventions.61 6. Exploration of interventions using web-based and other multimedia approaches.41,62
Finally, with regard to methodological recommendations, Eagar and colleagues make a salient point by recognizing that ‘‘a lack of good evidence for whether an intervention is successful or not is not the same as evidence for its ineffectiveness, as often the problems are methodological (with the design of the study) rather than associated with the logic or acceptability of what was offered to the caregiver.’’20 Other more general recommendations for enhancing family caregiver research include fostering research networks and collaborations, developing specific research program areas, dedicated conferences that focus on family caregivers, and lobbying organizations to promote capacity building (Ph.D.s and postdoctoral funding) in this area.31,57,64 A recent international survey to determine the priority research topics for family caregivers and palliative care31 revealed similar findings to those of systematic reviews. There is a demonstrated need for intervention development focused on improving family caregiver support and a recognition that there is already a substantial body of literature on caregivers’ needs.8,22,24 Additional survey results showed that other key areas that warrant research attention include underresearched family caregiver subpopulations (e.g., young caregivers, ethnic minorities), the bereavement experience and support, and assessing unmet needs and development of methods (e.g., assessment tools) to identify family caregivers at risk of poor psychosocial well-being. Future work might focus on elaborating on these areas by comprehensively scoping specific research questions.31 Clinical and social agenda Although a significant proportion of family caregivers experience poor psychosocial well-being, many will identify some positive consequences associated with the role.45,65 This does not mean that most caregivers do not need support. On the contrary, they should be offered support that is targeted according to their needs in a way that will help sustain them in their role and promote optimal psychosocial well-being including during bereavement.51 From a social and policy perspective caregivers need to be supported by care systems that actually lessen rather than increase the burden of caregiving. For example, poor communication, lack of information, inflexible health care appointments (often at different hospital clinics and requiring repeated time off work), and slow response to request for services all add to caregiver frustration. To alleviate some of these burdens, periods of respite might be found in physical rest, social interaction, education, recreation, or employment outside the home.51,66 In addition, caregivers’ financial security is not always given the priority it deserves. Such security may be derived from flexible arrangements to continue work or to reduce work commitments and hours, together with protection of career progression and pension rights. Caregivers’ social inclusion also requires increased attention and appropriate levels of welfare benefits made available. Increased policy recognition of caregivers’ rights, and processes to involve them in major health and social care changes, are some of the means by which caregivers can make their contributions as citizens.51 A public health approach for families is also warranted so that death and dying can be viewed once again as a part of life (rather than, for example, as a medical failure) and the term
FAMILY CAREGIVERS AND PALLIATIVE CARE ‘‘palliative care’’ more widely understood.51 A public health approach should also focus on addressing the lack of support for caregivers in impoverished regions and for minority caregiver groups. Realistic objectives are needed to support family caregivers. Some are of the opinion67 that from a policy and standards perspective it may indeed be quite untenable for health and social care professionals to improve family caregivers’ quality of life (as promoted, for example, by the World Health Organization). In addition, in settings where the time frame that specialist palliative care clinical services are directly involved with family caregivers is short it would seem quite impracticable to set such unachievable goals.51 Where health and social care resources are not sufficient to support the needs of the entire family as well as the patient, care should be directed toward one or two family or friends whom the patient acknowledges to be the most important support people. This is not to say that others ought to be excluded; ideally, the primary caregiver(s) could act as the information sharer and family spokesperson with other members of the family and involve them in key decisions as appropriate.51 We acknowledge that this may not be viable in all clinical and service delivery situations; for example, some families are disenfranchised and others experience significant conflict.68 In such cases palliative care services should provide support where they can in matters related directly to end-of-life care. In our opinion it is not reasonable (unless suitable resources exist) to expect palliative care clinical services to try and reconcile family differences, or to resolve conflict that may have existed for decades. This is not to ignore the need for referral to generic counseling services in some instances; however, unless there is a major injection of funding, therapeutically oriented general family counseling should not be the core function of palliative care services whose priorities lie elsewhere.51 Family caregivers have consistently expressed their need for the following: education to prepare them for their role, about how to respond to the challenges (physical, social, spiritual, and psychological) of the role, and about how to access resources (internal and external) to assist them to maintain optimal psychosocial well-being.33,69 These domains are commensurate with the ‘‘good death’’ literature describing what most family caregivers seem to value in terms of optimal end-of-life care. Families expect that their relative’s symptoms should be managed, that they will be offered emotional, social, and spiritual support, that treatment decisions will be respected, that they will have access to respite care and bereavement support, and preference for site of death will be supported.70,71 We maintain however that this support should be targeted, time limited, evaluated regularly, and based upon best available evidence. For example, we agree that ongoing formal bereavement support may not be required by all family caregivers; rather, it must be based on need and justify prudent use of resources.51,67 Caregiver support will also require input from suitably trained health and social care professionals16 and the agenda for the future should incorporate direct input from family caregivers. Conclusion Palliative care is meant to be ‘‘family centred’’ and the ‘‘unit of care’’ (which includes the patient and the family) is core to
867 all its functions. We have argued that, based on the available evidence, support for family caregivers is often lacking and is in need of a codified framework based on best evidence and empirical research. A comprehensive approach is required to address this situation, incorporating public health, research, clinical practice, and policy initiatives. A significant benefit for caregivers might arise from changes to fiscal policy, such as tax credits for caregiving or enhanced pension rights. Much attention has been placed on direct ‘‘support’’ services to caregivers, however an equally pressing issue relates to the types of support that are most beneficial and timely. These are important research questions. We see the need for improved information, training, and brokerage services for caregivers so they are able to take greater control of their circumstances and utilize those services that are available within their local communities.51 Unless there are substantial and sustained commitments to improve services and resources for family caregivers, by governments, health authorities, and research councils, palliative care will fail to deliver upon its core function of adequately supporting the patient along with the family. Author Disclosure Statement No conflicting financial interests exist. References 1. World Health Organisation: National Cancer Control Programmes: Policies and Managerial Guidelines. 2nd ed. Geneva: WHO, 2002. 2. Ferrell B, Connor SR, Cordes A, Dahlin CM, Fine PG, Hutton N, Leenay M, Lentz J, Person JL, Meier DE, Zuroski K; National Consensus Project for Quality Palliative Care Task Force Members: The national agenda for quality palliative care: The national consensus project and the national quality forum. J Pain Symptom Manage 2007;33:737–744. 3. National Institutes of Health: National Institutes of Health state-of-the-science conference statement on improving endof-life care. December 6–8, 2004. 4. Palliative Care Australia: Standards for Providing Quality Palliative Care for All Australians. Canberra: Palliative Care Australia, 2005. 5. National Consensus Project: National Consensus Project for Quality Palliative Care. Pittsburgh, PA: National Consensus Project, 2004. 6. National Institute for Clinical Excellence: Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer. The Manual. London: National Institute for Clinical Excellence, 2004. 7. Help the Hospices: Identifying Carers’ Needs in the Palliative Setting. London: Help the Hospices, 2009. 8. Harding R, Higginson I: What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med 2003;17:63–74. 9. Stoltz P, Uden G, Willman A: Support for family carers who care for an elderly person at home—a systematic literature review. Scand J Caring Sci 2004;18: 111–119. 10. Adams M: Patient and carer satisfaction with aplliative care services: A review of the literature. ACCNS J Community Nurs 2005;10:11–14. 11. Andershed B: Relatives in end-of-life care—part 1: A systematic review of the literature the five last years, January 1999–February 2004. J Clin Nurs 2006;15:1158–1169 (111 ref).
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Address correspondence to: Peter Hudson, R.N., B.N. (Hons), Ph.D. Centre for Palliative Care c/o St Vincent’s Hospital & Collaborative Centre of The University of Melbourne, Australia P.O. Box 2900 Fitzroy Victoria 3065 Australia E-mail:
[email protected]
