Grace Christ, DSW - Columbia University, School of Social Work
Susan E. Blacker, BSW, MSW, RSW – St. Michael’s Hospital, Toronto, Ontario.
As previously noted Social Workers are the largest group of mental health professionals working with this population in both hospice and palliative care. They encounter individuals with advanced illness in a broad range of health care and social organizations and agencies. Social Work values, knowledge, and skills are inherently consistent with the principles of palliative care: client self-determination, the biopsychosocial/spiritual perspective, family and social systems, cultural competence, and promotion of social justice are a natural fit in the palliative care context. With their psychosocial training, social workers have comprehensive skills, not only as practitioners, but as educators, researchers, and policy makers as well. Social workers are fundamentally trained to practice from a “person in his or her environment” perspective, and this theoretical view is invaluable to the medical care team.
Social work in practice naturally invites collaboration with the family, the interprofessional care team, and the community. Social work’s view includes an appreciation of cultural and spiritual dimensions of the family’s life.
As experts at helping individuals and families maximize coping in crisis and at addressing the psychosocial domains of symptoms and suffering, as well as the experience of grief and loss, social workers are able to provide intensive counseling for those confronted by life-limiting illness and the myriad complex problems imposed by illness (Taylor-Brown, Altilio, Blacker, Christ, & Walsh-Burke, 2001). The profession’s focus on “starting where the client is” encourages exploration of the client’s needs, strengths, and resources that inform the ongoing work of living with advanced illness or end-of-life issues.
The social work role as patient advocate is also critical to palliative care. Linking patients to resources and helping patients negotiate the goals of care are an essential therapeutic focus. Often social workers are part of ethics committees or consult teams (Csikai & Sales, 1998; Taylor-Brown et al., 2001). Upholding the principles of self-determination and autonomy, justice, and access for all within the care delivery system are important elements of social work advocacy. Social workers have played a critical role in many areas of health care policy creation and reform, and in insuring access to quality care for the dying.
Social work researchers have the potential to further expand the focus on palliative and end-of-life care to include areas such as ethnic, cultural, and economic disparities; substance abuse; incarceration; interventions at different stages in the life course; crisis interventions; and interventions in community and organizational contexts. Social work expertise in implementing changes in policy through advocacy and leadership should be used to bring about important improvements in care for people who have an advanced chronic illness or are dying or bereaved (Kramer, Christ, Bern-Klug, & Francoeur, 2005).
Social workers commonly intervene when there are languages, literacy, or cognitive deficits that present barriers to patients’ understanding of complex information.
In summary, as stated in the “National Agenda for Social Work Research in Palliative and End-of-Life Care” (Kramer et al., 2005), social workers have an important role to play, “given their work in varied and divergent practice settings across the life-span, their role in addressing mental health needs, grief, and psychosocial aspects of well-being, and their commitment to promoting culturally competent, effective, and humane care, particularly for the most vulnerable and oppressed members of society” (p. 418).
Surveys of the U.S. population concerning patients’ and families’ needs and preferences for care during advanced illness have supported the expansion of palliative care and continue to inform professionals about the values of the general population, but also have stimulated research on variations among cultural groupings. For example studies of marginalized groups who believe they have been poorly treated by the health care system for other medical issues found that they may refuse to sign advanced directives giving the physician permission to withhold treatment. Social work has often been in the forefront of research into the different views of marginalized subgroups (Bullock, 2006; del Rio, 2006). This knowledge base is used in the individual and family assessment by inquiring about patients and family’s values and preferences and previous experiences with health care.
Although hospice has been accepted by professionals and advocates of better end-of-life care, it was reaching only a small proportion of those dying in the U.S. because of the restrictions on prognosis and curative treatments. Two landmark national studies and an Institute of Medicine (IOM) report (cited below) gave particular momentum to a movement to change the culture of death and expand the palliative care philosophy and approach to include hospitals and the full range of health services.
Two recent surveys by two different research groups had similar findings as the earlier surveys.
The biopsychosocial assessment of older patients in the advanced stages of life-threatening illness begins with the recognition that patients and families are confronting two challenges in a more acute way than they have previously in living with these chronic conditions: a) reorganization and adjustment to change and b) grief and loss. Factors influencing how families cope are incorporated into a social work assessment and include the seven domains discussed below. This framework is a modification of domains identified in Blacker and Rainess Jordan’s chapter on working with families in the book Living with Dying: A Handbook for End-of-Life Health Care Practitioners (Blacker & Rainess Jordan, 2006).
Many older adults with chronic illnesses have gained skills from their challenges and many demonstrate considerable resilience and ability to reconcile themselves to physical decline. Others, however, are overwhelmed by the stress of life threat and ambivalent about the goals of palliative care, i.e., whether they would rather be pursuing curative or restorative treatment goals. Current physical or psychological symptoms (e.g., pain, fatigue, depression, anxiety, and delirium) must be assessed carefully because they frequently occur in patients with multiple chronic conditions. The social work assessment explores how patients understand their symptoms and illness and how they plan to manage this phase (Zabora & Loscalzo, 1996; Blacker & Rainess Jordan, 2006).
Key questions for the clinician to consider:
The presence of symptoms of pain, fatigue, etc. must be assessed from a multidimensional perspective. The social worker considers the nature and quality of these symptoms and also their impact on the patient’s quality of life. Tools for assessing symptoms include, for example, a pain scale or pain diary. More extensive guidelines for assessing the psychosocial aspects of pain and symptom management can be found in (Altilio, Otis-Green, Hedlund, & Cohen Fineberg, 2006; Jerant, Azari, Nesbitt, & Meyers, 2004; Liao & Ferrell, 2000)The Edmonton Symptom Assessment Scale and the Memorial Symptom Assessment Scale are two measures of symptoms and distress that give evidence of providing a brief, but valid, systematic approach to monitoring symptoms, their intensity, and their impact on functioning over time. A selected list of high quality measures of pain and symptom management, functional status, psychosocial care, caregiver assessment, and quality of life currently used in practice and/or research can be accessed at the National Palliative Care Research Center Web site under measurement and evaluation tools (http://www.npcrc.org/resources/resources_list.htm?cat_id=1246).
Many older individuals become resilient as they learn and practice strategies for coping with personal losses and physical declines over time. However, they may also have fewer social, economic, and personal resources to cope with advancing illness and physical decline. The network of informal supports to help care for them may have been seriously diminished by death, illness, and geographic distance. The spouse or partner of the terminally ill older adult may themselves be frail. Therefore, a history of past experiences of illness, disability, and death, as well as of coping and strengths, is helpful not only to the social worker and other members of the team, but also to the older client’s own understanding of their feelings and reactions (Boockvar & Meier, 2006; Hooyman & Kramer, 2006; Hooyman & Kiyak, 2008).
Key questions for the worker to ask in order to consider the family’s developmental stage include:
This can be assessed by exploring seven areas. These areas represent factors that have been found over a broad range of social and psychological studies to be significant in people’s ability to cope with medical illnesses.
Key questions to address in this specific domain of the assessment include:
Because for many people their spiritual beliefs contribute to both the individual and the families’ coping with advanced illness, this is an important area to assess and incorporate into treatment planning. A commonly used assessment tool for spirituality is the FICA defined in the following way (Pulchalski, 2002):
F—Faith or beliefs: What is your faith?
I—Importance: Is it important in your life?
C—Community: Are you a part of a spiritual community?
A—Address: How should this be addressed in your health care?
Key questions for the social worker to consider include in the assessment include:
What are the resources the family has to enable them to manage the care and economic demands of advanced illness? Common problems include financial strain, low literacy level, lack of insurance, lack of transportation, inadequate caregiver situation (for example the frailty of the caregiver), and inappropriate environment for safety in the home. These needs, often addressed by the social worker as discharge planner or case manager, are frequently the most critical to the patient and family’s well being. They are rarely studied systematically in relation to psychosocial outcomes, but are provided because they are widely perceived to be a humanitarian benefit. Among the sparse research that has sought to determine the effects on health or health care of providing logistical or material resources, one study documented that when individuals with cancer lacked transportation, treatment was foregone (Guidry, Aday, Zhang, & Winn, 1997). And studies of people with a variety of chronic diseases have found that environmental barriers such as cost and logistical obstacles interfere with the ability to manage their condition (Bayliss et al., 2003; Vincze, Barner, & Lopez, 2004). Finally better patient and family satisfaction and better quality of care were associated with practical help for advanced illness patients in a review of review articles in palliative care (Mularski et al., 2007).
Practical as well as emotional needs are often heightened at the point of transitions in care, especially during advanced illness. These occur when symptoms progress, treatment is ineffective, the goals of care change, and often the care setting is insufficient to meet the patients needs necessitating additional services or change of site. Interventions that provide information, care coordination, and follow up as well as practical help have been found to improve care and patient and family satisfaction (Coleman, 2003b).
Key questions to investigate in this domain include:
(Blacker & Rainess Jordan, 2006)
Identification of how cultural beliefs contribute to the individual’s and/or family’s understanding and coping patterns requires assessment. The family’s culture, values, and beliefs underlie the patient and family’s perception of the health care system, their understanding of the meaning of the diagnosis and treatment, the roles of different genders and of different family members concerning caregiving responsibilities, the supports and resources available to them, and the particular death rituals required for the last stages of the illness and post-death period (Bullock, 2006; del Rio, 2006; Kagawa-Singer & Blackhall, 2001). Understanding the patient and family culture helps social workers (and the full medical team) to develop effective communication with them, to reduce conflicts and misunderstandings, and to determine how family members are best included in care planning and sharing bad news.
Key questions to consider in the areas of patient’s and family’s cultural background include:
(Blacker & Rainess Jordan, 2006, )
The evolving nature and current state of the evidence base in hospice and palliative care can perhaps best be summarized by four recent reviews beginning with a 2004 AHRQ report on systematic reviews, intervention and observational studies in palliative care(Lorenz et al., 2004; Mularski et al., 2007). This was followed in 2007 by an updated review of outcome measures in end-of-life care (Mularski et al., 2007). In 2008 a systematic review of all randomized controlled trials in which specialized palliative care was the intervention and for which outcomes included quality of life was published in JAMA(Zimmermann, Riechelmann, Krzyzanowska, Rodin, & Tannock, 2008). Finally in 2008, a publication of a large multisite study of cost savings of palliative care programs in hospitals presented their findings of cost effectiveness of this intervention(Morrison et al., 2008).
The 2004 AHRQ review selected 10 systematic reviews, 12 intervention studies and 17 observational studies to identify individual outcome measures most strongly associated with patient and/or family satisfaction with end-of-life care. They found the preponderance of intervention and observational literature support the effectiveness of palliative care for improving patient and caregiver satisfaction. However they indicated an emerging problem with the measurement of outcomes. Those that were developed specifically for palliative care settings and processes were more likely to show positive effects. They suggested inconsistencies in findings of research may relate to the use of more global and nonspecific measures or those developed for other populations.(Lorenz et al., 2004)
The 2004 AHRQ report also reviewed 12 systematic reviews or meta-analyses, 18 intervention studies and 14 observational studies that met their rigorous criteria to identify factors associated with better or worse outcomes. They found evidence of the association of satisfaction and better quality of care with pain management, communication interventions, practical support, and enhanced caregiving. Interventions that improved patient or family satisfaction included those aimed to ameliorate cancer pain, relieve depression, non-pharmacologic interventions for behavioral problems in dementia and those used to foster continuity in cancer and chronic heart failure care.
These articles reflect the challenge of developing both psychosocial and medical research in an area in which both are important and relevant to desired outcomes. For example, a second 2008 review of the effectiveness of interventions in palliative care reviewed 33 systematic reviews and 89 high quality interventions (Lorenz et al., 2008). They found strong evidence of the effectiveness of medical interventions to treat pain and other physical symptoms, and some evidence of the effectiveness of treating depression with psychotherapy. However they regretted that they could not review specific interventions such as patient and family centered approaches, spiritual support and bereavement due to the nomenclature challenges, for example, the lack of consistent words used to describe such interventions, and the breadth of the literature. They found strong evidence of support for multi-component interventions to improve continuity, moderate evidence to support advance care planning led by skilled facilitators who engage key decision makers and moderate evidence to support interventions to alleviate caregiver burden. This documents some of the challenges in a new, interdisciplinary, and evolving research area.
Most measures in palliative care practice and research focus on quality of life, quality of care and symptoms(Lorenz et al., 2004). A more recent review of measures in end-of-life care (Mularski et al., 2007) reported gaps in the development of measures for continuity of care, advance care planning, spirituality, and caregiver well-being. These reviewers supported and updated the Toolkit of Instruments to Measure End of Life Care available at http://www.chcr.brown.edu/pcoc/BIBLIOGRAPHIES.HTM. This toolkit evaluates measurement tools used through 2000. In this resource review we additionally recommend the use of the National Palliative Care Research Center’s (http://www.npcrc.org/)resources on measurement in end-of-life care research. Both reviews of the literature on measurement highlighted the fact that different studies almost always use different measures in the more developed domains. The use of a large number of measures of uncertain quality makes it difficult to compare findings or to synthesize insights across research or quality improvement studies. Therefore more rigorous testing of the highest quality measures is a recommended research direction.
The 2008 review of 22 randomized controlled trials (selected by rigorous criteria) published in JAMA found the most consistent evidence for the effectiveness of palliative care programs in improvement of family satisfaction with care(7 of 10 studies favored the intervention).However, only 4 of 13 studies assessing quality of life and 1 of 14 assessing symptoms showed a significant benefit of the intervention. Again reviewers identified the problem that these studies did not use quality of life measures specific for terminally ill patients and the exact components of their palliative care intervention varied considerably. The most provocative finding for palliative care colleagues was that only one of seven studies showed significant cost savings. Methodological limitations were identified in all trials, including contamination of the control group, and substantial problems with recruitment, attrition, and adherence. The authors concluded that the evidence for benefit from specialized palliative care is sparse and limited by methodological shortcomings. They recommended carefully planned trials, using a standardized palliative care intervention and measures constructed specifically for this population.
This study was shortly followed by a report of a multisite, randomized controlled trial designed to specifically study the cost savings of palliative care by matching 2278 palliative care patients to 18 427 usual care patients from 8 different hospital sites, treated during the same 2 year period of time. They were able to report significant cost reductions and therefore concluded that palliative care consultation does result in considerable cost savings including intensive care and laboratory costs associated with usual care patients.
The large number of recent studies and reviews of studies shows the importance of this intervention as the population ages and the numbers of individuals with advanced disease expands. Clearly quality of care, patient and family satisfaction with care and the costs of care are important outcomes. It also demonstrates the challenges of an evolving research area that is interdisciplinary and requires, even more that most other health areas, the simultaneous use of both psychosocial and medical interventions. If palliative care is viewed as a care coordination model it faces the same challenges as other such approaches: the need to work toward a more clearly described and standardized intervention and development of the highest quality measures that can be used across studies.
Specific psychosocial components of palliative care programs that relate to patient needs and have developed some evidence base in palliative care are described here.
Social work interventions in advanced illness use at least two conceptual frameworks: 1) identifying the tasks of terminal illness and interventions that can help patients and families fulfill those tasks; 2) identifying the psychosocial health needs of patients and families, and the psychosocial health services to address them. Intervention approaches with older adults often rely on an evidence base generally developed with younger patient populations, and most interventions with older adults are drawn largely from the consensus of the practice literature. Future research is required to expand the evidence base for interventions with older adults in the advanced stages of illness.
The tasks for patients with terminal illness can be viewed as comprising four areas. Interventions using this model focus on helping patients fulfill these tasks (Moynihan, Christ, & Gallo-Silver, 1988).
Since the advanced stages of many diseases now span months, sometimes years, patients and families often need to focus on ways to maintain an acceptable quality of life while the patient is dying. This requires considerable effort to manage symptoms and pain, but also to find ways to remain emotionally connected to family and friends. Patients often need to detoxify or become less anxious about death’s inevitability by having opportunities to discuss their fears and concerns. These discussions with formal or informal support providers enables them to maintain a hopeful, but realistic attitude about their condition (Schroepfer, 2006). The long months of waiting can be boring, and patients seek ways to meaningfully fill their time. They often long for communication with others about their fears, but also need support for developing distracting and normative activities that keep them connected to ongoing life. Patients may require help with decisions about continued treatments for their diseases as they weigh the benefits of additional months of life offered by medical advances, but with the possibility of reduced quality of life and additional suffering for themselves and their families.
As the disease progresses, more of the patient’s attention is focused on managing symptoms, pain, and related psychological distress. They require support for mourning losses in function as they occur, but also for recognizing and maximizing remaining strengths and capacities.
As the disease progresses patient’s also confront thoughts about the meaning of their lives, their suffering, and their impending death. Cultural, religious, and spiritual views impact their thinking. Patients struggle with fears of existential aloneness. The search for a positive sense of meaning in one’s life, death, and suffering has received greater attention in recent years, since it has been found to impact the patient’s quality of life as much as physical symptoms. The ability to see oneself in a context greater and more enduring than the self moves many patients from suffering to a sense of well-being, and therefore, a focus on seeking meaning is being incorporated into interventions (Mount, Boston, & Cohen, 2007).
No matter how old the patient is, there may be family or friends left behind. Planning for their care and well being and having final conversations that address final goodbyes, loving connections, forgiveness, and reconciliation can provide important solace for both patients and families.
The tasks for families of individuals in advanced illness stages include the following:
The model that identifies psychosocial health needs of older patients with advanced disease and the psychosocial health services that address these is outlined in Table 1. For some interventions, such as psycho-education, cognitive-behavioral interventions, and family conferencing, an evidence base for treatment exists, but it is mostly with younger populations. Other interventions rely on the consensus found in the practice literature.
Psychoeducation includes teaching patients with advanced disease and families about the illness and treatment process and how they can cope with their disease, the health care system, and at the same time prepare psychologically for the terminal illness. The evidence base suggests that a broad range of teaching assists can be helpful in educating patients, but often need to be tailored to individual preferences and capacities (Elliott, Ross-Degnan, Adams, Gelb Safran, & Soumeral, 2007; Gastona & Mitchell, 2005; Houts, Witmer, Egeth, Loscalzo, & Zabora, 2001; McPherson, Higginson, & Hearn, 2001; Walling et al., 2008). The following topics have been incorporated in these patient and family psycho-education approaches in palliative care:
In the treatment setting, the need for discussion about goals of care and decision-making often occur during certain crisis or transition points in the illness. Clearly attention to well implemented transitions in care is vital to effective care coordination and patient and family well-being (Coleman, 2003a, 2003b; Mayfield, 2004; Parry, Kramer, & Coleman, 2006; Schroepfer, 2006; Walling et al., 2008). Typical transitions include:
Facilitating decisions takes place in the context of concerns of health care professionals and family members, both of whom worry about “taking away hope” (Albinsson & Strang, 2003; McCarthy, Addington-Hall, & Lay, 1997; Raleigh & Boehm, 1994; Schroepfer, 2007).
Crises in medical care are typically situational. Commonly the crisis is related to emotional exhaustion in both patients and family caregivers. The goal of crisis intervention is to enable clients to quickly regain a sense of equilibrium, maintain hope, and focus on meaningful and effective activity. Social workers are uniquely skilled to manage the challenging family dynamics that can occur and to draw on multiple systems of support to help the family and patient solve the problems at hand (Loscalzo & BrintzenhofeSzoc, 1998; Schroepfer, 2007).
Cognitive-behavioral interventions are based on the postulate that mental and physical symptoms are in part a function of underlying thoughts, feelings, and/or behaviors that are of a maladaptive nature. The goal of these interventions is to restructure the individuals thinking and feeling to be more adaptive to the situation. For example to identify realistic goals they can achieve even with their current functional limitations.
A package of cognitive-behavioral interventions may include several of the following techniques. The evidence base suggests that they are effective in improving mood, quality of life, and reducing pain and symptom distress; however, further research is needed to clarify whether one approach is more effective than another during advanced illness. Two examples follow:
A team intervention strategy, a family conference intervention is consistent with the interdisciplinary focus of palliative care practice and acknowledges the unit of care as the patient and their family and support network. Benefits cited by professionals from studies of this intervention include the following (Hudson et al., 2008; Yennurajalingam et al., 2008).
A recent review of the limited practice and research literature on family conferencing found that social workers are the major conveners reported for this interdisciplinary intervention. They recommended much more research to develop definitions, clarify goals and objectives and specify therapeutic processes and desired outcomes (Hudson et al., 2008).
While practical interventions, which are so central to the social work role, are rarely researched, there is such long standing and wide acceptance of these as humane services that there has been little question as to whether they “work.” One study has shown that the absence of information, finances, transportation, and adequate living arrangements do have a negative impact on treatment adherence (Institute of Medicine, 2007). As mentioned above, a 2007 synthesis of findings of end-of-life care outcomes found evidence of the association of satisfaction and better quality of care with practical support, and enhanced caregiving as well as other medical interventions. (Mularski et al., 2007).
What to do for pain and other symptoms, how to make decisions, who to call, what to do after death?
Social work’s specific contributions in education, research, administration, and policy development have more recently become an integral part of the interdisciplinary discussion of appropriate practice parameters in this expanding field. The Social Work Leadership Development Awards from the Open Society Institute’s Project on Death in America and CSWE’s Hartford-funded Gero Ed Center programs have facilitated the creation of Social Work leadership in program development, research, and education. Still the expanding population of patients with advanced illness requires all health social workers be trained in palliative care. The Social Work Hospice and Palliative Care Network (www.swhpn.org ) continues to advance, with the support of stakeholder organizations, the goals that have been established to move the field forward. Over 40 social work leaders were funded from 1999 through 2004 to create new models of service delivery and professional training, and to advance research within their discipline and across disciplinary boundaries (Walsh-Burke & Csikai, 2005).
Below are listed key events in the development of hospice and palliative care within social work (Christ & Blacker, 2005).
As this module documents, the palliative care needs of older adults are expanding exponentially and will become an important part of the social work role in advanced illness going forward. We conclude that at its base palliative care is a comprehensive care coordination intervention model with an emphasis on psychosocial services as its defining characteristic. In addition to advanced interdisciplinary care it involves meticulous pain and symptom management; careful attention to the social, psychological, and spiritual needs of patients and families; and an essential focus on improving care transitions, largely through improved methods of communication and coordination.
Social workers are clearly the major providers of mental health and psychosocial services to older adults with advanced illnesses, including critical services for their informal caregivers. The development of social work specialization in this area emerged from the Project on Death in America’s leadership awards program and the CSWE Gero-Ed Center. Specialization continues to support the development and dissemination of research and training within the profession. However, because the population is expanding, all health social workers require knowledge and skills to intervene with older adults with advanced illness. This is further recognized by NASW’s creation of a credential in this area.
Different reimbursement structures influence what services are available to older adults. At the same time new, potentially cost effective service delivery models are being evaluated.
As the field is a newly emerging one, so is the evidence base. The challenge to social work is not only to demonstrate expertise in biopsychosocial assessment and intervention in advanced illness with older adults, but also to take a leadership role in the development and research of these new integrated models of care as well as specific psychosocial interventions for patients and families.
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