Hospice Social Work
10.1177/000276402237768AMERICAN BEHAVIORAL SCIENTISTConnor et al. / INTERDISCIPLINARY APPROACHES
Interdisciplinary Approaches to Assisting With End-of-Life Care and Decision Making
STEPHEN R. CONNOR National Hospice and Palliative Care Organization
KATHLEEN A. EGAN The Hospice Institute of the Florida Suncoast
DONNA M. KWILOSZ Ireland Cancer Center, University Hospitals of Cleveland, Ohio Case Western Reserve University
DALE G. LARSON Santa Clara University
DONA J. REESE University of Arkansas, Fayetteville
The importance of interdisciplinary care for patients and families facing the end of life is examined. Descriptions of varying forms of team functioning are provided with an emphasis on the characteristics of high-functioning interdisciplinary teams. The value of empowering the patient and family to direct the care they receive from their team is emphasized. Interdis- ciplinary team interventions in end-of-life care focus on the biopsychosocial and spiritual dimensions of human experience and facilitate growth and development in the last phase of life. Despite its great promise for improving patient care, the interdisciplinary model is not— with the exception of hospice care—widely implemented in today’s health care system. The contributions of interdisciplinary teams to end-of-life care can be enhanced through the development of interdisciplinary team training programs, the creation of payment structures that support the interdisciplinary team model, and continuing research assessing the dynam- ics of team functioning and the benefits that interdisciplinary team care provides to patients and families near the end of life.
Interdisciplinary team care is in general not well represented in either the health care system or in the published literature that studies this system. How- ever, interdisciplinary team care is a key ingredient in health care for patients with chronic or life-threatening illness because these patients present a range of problems that affect all dimensions of human experience and that require the expertise of many professional disciplines. How these disciplines work together
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AMERICAN BEHAVIORAL SCIENTIST, Vol. 46 No. 3, November 2002 340-356 DOI: 10.1177/000276402237768 © 2002 Sage Publications
in the care of the vulnerable patients and families they serve is the subject of this article.
This article will review what is known about interdisciplinary care and more important, will highlight what distinguishes effective from less effective team practice. Why do we need interdisciplinary care? Our health care system is designed to provide acute care focused on the treatment of a specific illness or symptom (Robert Wood Johnson Foundation, 1996). The reality, however, is that the bulk of care being delivered in the health care system today is for patients with chronic conditions and multiple comorbidities.
In the decades ahead, an expanding aging population will dramatically esca- late this challenge to the health care system as it seeks to respond to the explo- sion in the numbers of patients with chronic conditions manifesting as organ failure, frailty, and impaired cognition. These medical conditions cannot be addressed without also attending to the psychosocial and spiritual needs of the person. The need for effective care delivery structures for these challenging pop- ulations will only increase with time.
At the present, we find few examples of effective team functioning in the health care system, which is largely organized and run in a hierarchical manner with physicians directing care that is focused primarily on the person’s medical condition. Psychological, social, emotional, practical, or transcendent human needs are frequently not addressed.
This article will discuss the extant literature on how teams operate and will look at different types of team functioning. We will stress the importance of interdisciplinary teamwork that is guided by the goals of patients and families, attends to all dimensions of the human experience, and recognizes the opportu- nities for growth and development near the end of life. We will examine the experience of hospice as a model for team functioning and will explore how effective interdisciplinary care can be achieved.
LITERATURE REVIEW
Use of a team approach has been established in several fields including geri- atrics (Miller, Miller, Mauser, & O’Malley, 1998; Zeiss & Steffen, 1996), hos- pice (Brandt, 2001; Connor, 1998; Egan & Labyak, 2001; Lattanzi-Licht & Connor, 1995; Sherman, 1999), and mental health settings (Marett, Gibbons, Memmott, Bott, & Duke, 1998).
Patients near the end of life report that they are concerned about spiritual, existential, family, and emotional aspects of their illness, which are rarely the focus of care in medical settings (Greisinger, Lorimor, Aday, Winn, & Baile, 1997). The most effective way to provide symptom management (Watanabe, Carmody, & Bruera, 1997) and improve quality of life for the terminally ill and their families is to incorporate the expertise of a collaborative team of profes- sionals (Coyle, 1997; Greisinger et al., 1997; Llamas, Pickhaver, & Piller,
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2001). In addition to providing the best care for patients, a team approach is more likely to decrease potential for burnout and maintain a sense of personal worth for medical professionals who work with dying patients (Vachon, 1998).
Abrahm, Callahan, Rossetti, and Pierre (1996) evaluated whether a hospice consultation team would provide improved care for hospitalized cancer patients at a Veterans’ Affairs medical center. They found that a large number of medical, psychosocial, and spiritual problems not previously identified were found by the team, and a majority of these problems were resolved, including insurance and home care issues, providing cost savings. These findings suggest the importance of including social work (Monroe, 1998; Reese & Raymer, in press; Reese & Sontag, 2001), psychology, and psychiatry in interdisciplinary teams (Marwit, 1997; Turk & Feldman, 2000).
Reese and Raymer (in press) defined team functioning in terms of full utiliza- tion of all disciplines on the team, high levels of morale, effective communica- tion skills, support and trust between members, and effective conflict resolution strategies. In a survey of a national random sample of 66 hospices, they found that higher levels of team functioning predict lower average hospitalizations per patient, home health costs, nursing costs, labor costs, and overall hospice costs.
Hearn and Higginson (1998) reviewed studies that used specialist-palliative care teams caring for advanced cancer patients to determine improved health outcomes. For the 18 studies identified, they found that compared with conven- tional care, the specialist-coordinated approach resulted in similar or improved outcomes in patient and family satisfaction, care being provided where the patient wished, family anxiety, and patient pain and symptom control. Reduc- tions in hospital inpatient days and more time at home were reported in several of the studies.
Higginson and colleagues (2002) reviewed studies evaluating hospital-based palliative teams using qualitative meta-synthesis and quantitative meta- analysis. They found that the nature of the interventions varied across the 13 studies analyzed; only 1 study was a randomized clinical trial. A majority of studies showed a positive effect size, suggesting that hospital-based palliative care teams provide some benefit to patients with advanced illness. Overall, they found evidence-based research lacking and made recommendations that future research include evaluations to determine optimum composition and size of a team, attention to cost-effectiveness, comparison of different models, and use of standardized outcome measures.
Teno (2002) also addressed the importance of evaluating the work of pallia- tive care teams. Regarding the past, present, and future of hospice and palliative medicine, she made a strong recommendation for research with improved out- come measurements across multiple domains. Similarly, in reviewing the litera- ture from eight health-related fields, Schofield and Amodeo (1999) acknowl- edged the discrepancy between the enthusiasm for interdisciplinary teams and the data demonstrating the efficacy of this approach to care. They recom- mended that future research clarify terminology, provide better docu-
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mentation by team members, and provide more sophisticated research design and conceptualization.
THE SPECTRUM OF TEAM FUNCTIONING AND DEVELOPMENT
The development of interdisciplinary health care teams is closely related to the emergence of the biopsychosocial model (Engel, 1977), broader efforts to improve health professional/patient communication and relationships, and the need for family-focused care (Teno, Byock, & Field, 1999) near the end of life. The biopsychosocial model (Engel, 1977) has gradually replaced the traditional biomedical model as the guiding framework for understanding health and ill- ness. The biopsychosocial model recognizes the complexity of the forces that influence illness, health, and healing and considers biological, psychological, and social factors in the treatment of any health problem. It says that the whole person in his or her social context is the appropriate focus of these interventions. Interdisciplinary teams are natural clinical counterparts to this biopsychosocial model as they draw on the expertise of specialists in each of these separate domains—biological/medical, psychological, and social—to diagnose and treat the whole person in the context of the illness.
Second, the development of the interdisciplinary health care team is linked to broader efforts to improve health professional/patient communication. Health professionals often do not have extensive training in interpersonal skills, and patients have expressed dissatisfaction with the quality of communication with them (Spencer, 1990). Communication is a key focus of mental health profes- sional education, on the other hand, and full utilization of these disciplines may increase client satisfaction (e.g., social work: Reese & Raymer, in press).
One element of communication important to client satisfaction but often lacking is elicitation and respect of treatment choices (Ley, 1988). Advocacy for client self-determination is a major focus of social work training, however. In addition, research and theory within the field of psychology on effective inter- personal care is identifying elements of patient-centered medicine (Laine & Davidoff, 1996; Larson & Tobin, 2000) characterized by mutual participation relationships that encourage informed choice, patient autonomy, and mutual decision making between health providers and patients. At the heart of the patient-centered approach is understanding the meaning of the illness for the patient, a central goal of any whole-person approach to end-of-life care.
Finally, the development of interdisciplinary teams is a response to the need for family-focused care (Teno et al., 1999) near the end of life. Social work prac- tice is based on an ecological framework (Germain & Gitterman, 1996) that is directed not only toward the individual but also toward improving interaction between people and their environments. Indeed, in hospice, the family is viewed as the unit of care and is considered part of the health care team.
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It is useful to view the interdisciplinary health care team as representing one point or level in a developmental sequence or spectrum of team development, from unidisciplinary (no team at all), to multidisciplinary (independent disci- plines function largely unaffected by one another, with the physician usually at the center of the process), to interdisciplinary (the interaction of the team is required to produce the final product and is organized around solving a common set of problems—often referred to as interprofessional) (Hall & Weaver, 2001). Some authors have even discussed a transdisciplinary stage of team develop- ment in which team members train one another, and roles and responsibilities are shared without role confusion (Bailey, 1984; Hall & Weaver, 2001). How- ever, here we consider these characteristics of transdisciplinary team function- ing as components of high-functioning interdisciplinary teams, with the recog- nition that working together in a truly interdisciplinary fashion is an ideal state to which caregiving teams can aspire but not all can achieve. In hospice and pallia- tive care, which is necessarily and profoundly family focused, the caregiving team can be conceptualized as including the patient’s family and loved ones.
Further distinctions between multidisciplinary and true interdisciplinary team functioning were offered by Hall and Weaver (2001). According to these authors, teams function along a continuum based on the degree of interaction among members and the responsibility for patient care. Hierarchically orga- nized multidisciplinary teams are traditionally led by the highest ranking mem- ber, with different disciplines working independently to assess patients, set goals, and make recommendations for care (Cummings, 1998; Young, 1998; Zeiss & Steffen, 1996). There may be meetings to discuss progress, but usually there is minimal direct communication among team members who work in par- allel to each other, using the medical record to share information (Cummings, 1998; Hall & Weaver, 2001; Larson, 1993).
Interdisciplinary teams are organized around solving common problems and are composed of members who work collaboratively and interdependently to develop goals and a common treatment plan (Young, 1998). They actively engage and learn from each other and attend regularly scheduled meetings where members participate in problem solving and share information. The intention is to provide coordinated, thorough evaluations and better planning, follow-up, and outcome for patients. Identification as a cohesive team is viewed as more important than individual identities, and leadership functions are shared (Cummings, 1998; Hall & Weaver, 2001; Larson, 1993; Lattanzi-Licht & Connor, 1995; Zeiss & Steffen, 1996).
INTERDISCIPLINARY TEAMS: REFLECTING THE PATIENT/FAMILY END-OF-LIFE EXPERIENCE
To be most effective, care teams must be designed to honor the experience of the patients and families they serve. End-of-life care teams, the disciplines that
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comprise the interdisciplinary team, and how they function as a collaborative team mirror the patient’s and family’s complex experience of life-limiting ill- ness, dying, death, and bereavement. Collaboration as an interdisciplinary team focuses on transforming the patient’s and family’s end-of-life experience. The critical components of this interdisciplinary model can and should be offered in all settings caring for patients and families near the end of life.
THE PATIENT/FAMILY VALUE-DIRECTED MODEL OF CARE
One of the significant factors associated with quality end-of-life care centers is the concept of the patient and family truly in control and directing their own care and experiences. To explain this difference, the patient/family value- directed model of care (Egan, 1998) was developed on the following principles:
1. Dying is a unique personal experience belonging to the patient and family. 2. Patients and families experience the last phase of their lives through many related
dimensions. 3. The last phase of life provides continued opportunity for positive growth and
development in the face of suffering.
Principle 1: Dying is a unique personal experience belonging to the patient and family. Individuals experience all stages of life in their own unique way and find their own meaning and purpose in those experiences. The end of life brings its own challenges as each individual adapts to life-limiting illness, dying, and bereavement. How they choose to experience this time is a reflection of the diversity of their individual life experiences, beliefs, and values. These factors become the focus of attention and guide professionals in their delivery of care.
Central to this model is the idea that the patient and family own how they experience the end of life. The focus shifts from what professionals feel is best to the personal wishes, goals, and needs that patients and families identify as important and crucial to their life closure. Their end-of-life goals become the primary goals of the interdisciplinary care planning process and direct the inter- disciplinary team. Each discipline’s expertise and clinical judgment is then focused on assessing and reacting to what is happening within that patient and family situation that is helping or hindering them from accomplishing their end- of-life goals.
The interdisciplinary team then collaborates to support the patient/family strengths that are helping them to reach their own goals and offers choices and options for the factors that may be hindering them from reaching their goals. The focus is taken away from the disciplines and placed on the experience of the patient and family. No one discipline owns any part of the process or care plan. Rather, it belongs to the patient and family, and all disciplines must be able to blend roles and respond to the complex interdimensional experiences of the patient/family as further defined in Principle 2.
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Principle 2: People experience the last phase of their lives through many related dimensions. The dying experience is one that affects all dimensions of a person. To comprehend the nature of suffering experienced during advanced ill- ness, dying, and bereavement, it is essential to understand the dynamic relation- ship involving one’s mind, body, and spirit. Cassell (1991) described a theory of personhood whereby each person is a holistic being with dynamic, interrelated dimensions that are affected by the changes and adaptations experienced with progressive illness and dying. These aspects involve the physical experience of end-stage disease, the emotional experience of one’s relationships, and how one defines spiritual existence.
Care provided using the patient/family value model is designed to support optimal quality of life closure by addressing all of these dimensions through an interdisciplinary team approach. Learning from the experiences of patients and families as a person’s physical and functional dimensions decline, quality of life closure can be enhanced by attention to their interpersonal, well-being, and spir- itual dimensions. These dimensions and appropriate disciplines needed for an optimal end-of-life care team were described by Byock and Merriman (1998). The dimensions and corresponding staff include the following:
physical dimension: physician, nurse, pharmacist, therapists, nutritionist, and volunteers;
functional dimension: nurse, nursing assistant, therapists, and volunteers; interpersonal dimension: counselors, social worker, psychologist, and volunteers; well-being dimension: counselors, social worker, psychologist, chaplain, and
volunteers; transcendent dimension: chaplain, counselors, social worker, psychologist, and
volunteers.
Interdimensional care provided by an interdisciplinary team focuses on the experience of those served and core disciplines that can best support that experi- ence. By changing from a singular discipline to an interdimensional approach, all disciplines attend to all dimensions of the patient’s and family’s experience. For example, the social worker/counselor not only assesses anxiety as an emo- tional aspect of care but broadens the assessment to reflect an interdimensional approach including how anxiety (well-being dimension) is affecting the patient’s breathing (physical dimension) or the patient’s and/or family’s physi- cal, functional, interpersonal, well-being, and spiritual dimensions.
When team members interact with patients and families, they must be com- petent in interdimensional assessment, comfortable responding to all dimen- sions on some level, and capable in collaborating with the other disciplines in the delivery of care. Inherent in this model is accepting the value of interdisciplinary collaboration and the critical role of all disciplines involved. Ultimately, this interdimensional approach is focused on supporting patients and families to come to their own self-determined life closure. Principle 3 provides a frame- work for professionals to attend to the tasks of life completion and life closure.
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Principle 3: The last phase of life provides continued opportunity for positive growth and development in the face of suffering. Byock (1997) explored the opportunities for growth and development near the end of life. In the face of suf- fering, people are often able to develop a sense of completion, to find meaning in their lives, to experience love of self and others, to say their goodbyes, and to surrender to the unknown.
Byock (1996) conceptualized dying as a stage of the human life cycle that inherently holds opportunities to broaden the personal experience, determine what matters most, influence the outcome for improved quality of life closure, and thus reveal new sources of hope.
By understanding and helping patients and families attend to these tasks in a way they choose, we can support them in affecting their quality of life. Interdis- ciplinary team members assist patients and families in defining what is valuable and meaningful to them in relation to these life closure tasks. This developmen- tal approach to the end of life should not be misconstrued as a set of prescribed requirements. Rather, these tasks become an integrated approach to care that supports patients and families to a self-determined life closure.
CREATING HIGH-FUNCTIONING END-OF-LIFE CAREGIVING TEAMS: SKILLS AND PROCESSES
The creation of truly interdisciplinary teams caring for those near the end of life is not simply a matter of assembling a group of individuals from the different necessary disciplines. There are many challenges and pitfalls to achieving this level of professional functioning. Larson (1993) wrote about the necessity to set aside time early on in the development of a team to discuss and define team val- ues and shared meanings. It is also critical to learn from mistakes and conflicts as the group matures.
Issues, dilemmas, and conflicts that occur are an expected result of working on an interdisciplinary team and may be viewed as opportunities for learning and growth (Larson, 1993). These include lack of appreciation for limits of knowledge that may contribute to the potential for role blurring or overlap of roles, issues of confidentiality, and differences in values and theoretical posi- tions. Some individuals are oriented toward teamwork, others prefer to be more autonomous; some disciplines train professionals to be more action and out- come oriented, supporting the need to fix, whereas others focus on the impor- tance of relationship and presence, especially in situations that may not be fix- able (Cummings, 1998; Reese & Sontag, 2001).
Effective teams are able to focus on areas of convergence, which for all disci- plines is the welfare of the patient. In such teams, sources of conflict are openly acknowledged in an atmosphere of mutual respect. The opinions of all profes- sions represented on the team are incorporated in the treatment plan, and respon- sibility for treatment is shared (Cummings, 1998; Reese & Sontag, 2001).
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Lack of understanding and knowledge of roles among different disciplines and what they can contribute results from professional training in isolation from each other. The need for new, integrated education and training models has been acknowledged, leading to the development of programs for addressing differ- ences among professions (Hall & Weaver, 2001; How, Hyer, Mellor, Lindeman, & Luptak, 2001; Lowry, Burns, Smith, & Jacobson, 2000; Travis, 2001).
PROBLEMS INTERDISCIPLINARY TEAMS FACE
Interdependent collaboration—the key to successful interdisciplinary team- work—is intrinsically difficult. Members of interdisciplinary teams have their work exposed to the critiques of other professionals, and this entails tremendous personal vulnerability. Interpersonal conflicts and other communication prob- lems present the greatest challenges for most caregiving teams. Conflicts within the team are inevitable because there are no simple answers to the ethical, legal, and psychosocial problems that caregiving teams frequently confront, and team members can have diverging views as to the best course of action because of dif- ferences in theory and values between professions (Reese & Sontag, 2001). These conflicts and communication problems can lead to the development of dysfunctional alliances or subsystems within the team, such as factions, conflict between two members, a dominant leader or team member, an isolated team member, or one person who is in conflict with the rest of the team.
Other problems are common occurrences for interdisciplinary teams. One is a kind of unhealthy agreement in which dissenting opinions are ignored, result- ing in bad or inferior decisions (Larson, 1993; Varney, 1991). Low trust levels can also exist and further promote not dealing openly with team conflicts and disagreement. Senge (1990) described defensive routines such as “smoothing things over” that protect team members from threat but also prevent learning. Role conflicts, role ambiguity and blurring, and differing views of what the team is trying to do can all lead to team strife. Other negative team norms that may develop include lack of commitment to the team process, lack of willingness to share equally in the work of the team, scapegoating, and power differentials on the team (Reese & Sontag, 2001).
Finally, collaboration is blocked by misunderstandings across professional boundaries, often stemming from a lack of understanding of other disciplines and from well-intentioned desires to control the care of patients. As Hall and Weaver (2001) noted, with increasing specialization there has been less oppor- tunity for interdisciplinary exchange, and each group powerfully socializes its members into a discipline-specific view of the world. The cognitive map that results from this socialization can be a barrier to effective communication with members of other disciplines because team members do not appreciate the potential contributions of other professions to patient care. This kind of interdis- ciplinary myopia and strong desire to provide the best possible care can lead to the phenomenon of the one-person multidisciplinary team in which
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interdisciplinary team members abandon interdependent collaboration and instead try to address all the needs of patients and families without relying on the other team members. Nurses are most likely to enact this role in end-of-life care because they are typically assigned most of the responsibility for patient care. Unaware of other disciplines’ expertise in psychosocial and spiritual care, nurses may believe they have adequate training in these areas to care for these needs as well as the medical needs of patients.
HIGH-FUNCTIONING TEAMS
Team development experts emphasize that certain characteristics tend to typ- ify high-performing or high-functioning teams in different settings (Larson, 1993). First, in high-functioning teams, goals and team roles are clearly under- stood. When there is the kind of role blurring that inevitably occurs at the highest levels of interdisciplinary team functioning, the team can resolve the ensuing conflicts. Second, the interpersonal climate or atmosphere of the high-function- ing team is one of goodwill and trust, and technical and emotional support and challenge are frequently exchanged (Pines & Aronson, 1988; Zimmerman & Applegate, 1992). Gossip and innuendo are minimal, and conflicts are addressed and worked through. Third, leadership functions are shared as each team member makes a unique yet interdependent contribution to optimizing patient care. High-functioning teams are intelligent—they study themselves and learn from their mistakes by participating in meaningful dialogue concerning their collaborative care of patients (Senge, 1990). Finally, the team’s goals are accomplished, and team members grow and learn through their work together while they pursue the team’s shared goals. The high-functioning team has a sense of confidence that it can cope with the demands confronting it, and this high team efficacy sets the stage for the team’s continued success and well- being.
HOSPICE CARE AS A MODEL FOR TEAM FUNCTIONING
IMPLICATIONS OF HOSPICE PHILOSOPHY FOR INTERDISCIPLINARY END-OF-LIFE CARE
The concept of the interdisciplinary team has been fully developed and implemented in the hospice movement. Hospice philosophy holds that to pro- mote quality of life during terminal illness, care must address all dimensions of the human experience, including biological, psychological, social, and spiritual. Pain is experienced in all of these dimensions, and the dimensions influence each other (Reese, 1995-1996). For example, the need for pain medication may be decreased through social work intervention in hospice (Reese & Raymer, in press), and spirituality may decrease death anxiety, which in turn decreases the
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impact of one’s disease on functioning (Reese & Kaplan, 2000). In addition to focusing on the well-being of patients and families, the hospice team also emphasizes interpersonal relationships, resources within the social environ- ment, and the physical environment of the patient and family.
Hospice philosophy also includes principles that govern the approach used by the interdisciplinary team. First, the principle of patient self-determination implies a shift from a focus on treatment of disease to a focus on care governed by patient and family values (Egan, 1998). This approach allows culturally com- petent care, an important aspect of which is honoring diversity of religious and cultural beliefs about end-of-life care.
Second, a humane approach to end-of-life care as defined by hospice philos- ophy includes ensuring patient comfort to the fullest extent possible. Because all dimensions are relevant to patient comfort and needs are met immediately to the extent possible, all disciplines must address all dimensions to promote a com- fortable death.
Third, hospice philosophy views death as a final stage of development with great opportunity for growth in all dimensions (Byock, 1997; Reese, 2001). An interdisciplinary approach to providing care in all dimensions assists patients and families to achieve the growth that is possible during the dying process.
Although each discipline provides comfort in all dimensions, there is recog- nition of the need for a variety of disciplines due to the special expertise of each in certain dimensions. The focus of team members is not on their own profes- sional values, theoretical approaches, and status on the team but on the patient’s and family’s needs and preferences. These are communicated between disci- plines and at frequent interdisciplinary team meetings, and a care plan is agreed on through consultation with the disciplines having special expertise in that area.
The care plan does not restrict intervention in a dimension to a certain team member; rather, it identifies the approach to an issue that will be used by all. Dif- ferences in theoretical or value-based approaches to intervention are overcome by a high-functioning team through identifying areas of shared theory and val- ues—in this case, hospice philosophy (Reese & Sontag, 2001).
THE CASE OF MARY
With this case example, we will illustrate how the three principles of the patient/family directed model of care and the characteristics of high-functioning teams are implemented on a hospice team.
Case summary. Mary, a 50-year-old African American woman with end- stage chronic obstructive pulmonary disease, lived with her 45-year-old sister, Dorothy. Both were widows, the patient’s husband having died under hospice care 3 years earlier. Mary’s son, David, age 30, was very close to his mother and a lay minister at their church. He was married with two children and lived
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nearby. Mary had been on a ventilator several years previously after respiratory arrest and said she did not want to go through that again. She stated she preferred to die at home in her own bed and not go to the hospital if she could avoid it. Based on this treatment preference as well as the prognosis that this patient would most likely die within 6 months, Mary’s primary care physician referred her to hospice. The hospice team assigned to Mary’s case included a physician, nurse, social worker, psychologist, chaplain, home health aide, and volunteer.
Team intervention on the case. The nurse, social worker, and chaplain all made home visits; all cooperated in the intake interview to address the biopsychosocial/spiritual dimensions and to demonstrate their holistic approach to the patient and family. First, the nurse addressed the biological dimension by assessing Mary’s physical status and safety. Dorothy had taken a leave of absence from her job and was able to stay home with Mary during the day; the nurse was confident that Dorothy was attentive to Mary’s needs. He also assessed the environmental dimension and found that Dorothy had arranged the house according to Mary’s preferences. Mary wanted to stay in her private bed- room with her favorite belongings by her bedside instead of laying in the living room with the family. The nurse supported Dorothy in this effort because it reflected the team’s principle that dying is a unique experience for each patient. In assessing the social dimension, the nurse asked whether Dorothy needed some social support. He suggested that the volunteer could sit with Mary occa- sionally and give Dorothy a break. Dorothy welcomed this idea, although she said that because church members sat with Mary quite often she would only need this occasionally.
The social worker further supported the principle of unique patient experi- ence by exploring treatment options with Mary. Mary said that although she did not want to be put on a ventilator and wanted to die at home, she felt uncomfort- able with a do not resuscitate (DNR) order and did not want a living will. The social worker reassured Mary that the hospice would honor her wishes. She explained the alternatives and discussed the risk that without advance directives, the patient might be put on a ventilator. Mary restated the same preferences, however. The social worker promoted patient/family directed care by honoring these wishes, recording them in the chart, and discussing them at the next team meeting. The social worker also assessed the environmental resources of the patient and family by asking about any financial concerns. The patient and fam- ily said their needs were taken care of with the help of their Southern Baptist Church.
At first Mary and David had said they did not need spiritual care from the hos- pice, that they would rather talk with their own pastor. The team supported the principle of the unique experience of the patient by agreeing that their prefer- ences would be honored and that the hospice would work cooperatively with their pastor to provide spiritual care. They then explained the interdisciplinary approach of the hospice and the importance of having the hospice chaplain work
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as part of the team. These statements reflect characteristics of a high-functioning team in that the holistic approach of the team and the role of the chaplain were clearly understood. The vote of confidence in the chaplain reflected a team atmosphere of goodwill and trust. After gaining an understanding of the hospice philosophy and team approach and having the role of their own pastor respected, the family agreed to this plan.
After the family agreed to work with the chaplain, she privately assessed the spiritual dimension with David. David said his mother had given up on life and wanted to die in order to be with her husband in the afterlife. He thought his mother’s acceptance of her terminality was a sign of a lack of faith. He believed that if she just had enough faith, God would perform a miracle and cure her. He had urged his aunt to call 911 if his mother had respiratory arrest. The chaplain then spoke privately with Mary and found that she felt guilty about her lack of faith and that her son was so upset with her. It was clear to the chaplain that for both Mary and David, the spiritual and psychological dimensions were affecting each other.
The home health aide, an African American woman, visited the next day. She was able to assess more of the social dimension because Mary confided in her that she had a general mistrust of the health care system. She had heard stories of mistreatment of African Americans by doctors. Despite this fear, however, she was very anxious about going into respiratory arrest and was afraid she might panic and ask her sister to call 911. She said she had not signed a DNR order because she was frightened about the idea of White doctors wanting to let her die. It was apparent to the home health aide that Mary’s physical condition along with cultural diversity issues were leading to anxiety. Thus, the physical and social dimensions were affecting the psychological. She addressed the psycho- logical dimension by providing emotional support and offering to ask the nurse to speak with Mary about what symptoms to expect and what the hospice could do to provide comfort and relief. This willingness to refer to the nurse reflected an understanding of the nurse’s area of expertise. The home health aide also reflected the principle of unique patient experience by reassuring Mary that the team would support whatever decisions she made. She explained that she could always revoke hospice if she decided she wanted curative treatment. She did not have to go to the hospital if she did not want to, but it sounded like David was going to have a hard time understanding this.
On the day of Mary’s death, she was tossing and turning on her bed, seem- ingly very agitated. The social worker provided intervention in the spiritual dimension. First, she conducted some guided imagery with the patient, consis- tent with the patient’s belief system, in an effort to reduce stress. Then, she pro- vided values clarification with David and Dorothy. She asked, “If a patient is dying, is it his or her fault?” David did not respond, but Dorothy said, “No, and no one here would think that.” David confided in the social worker later that after she left, he went into his mother’s room and saw her looking at the foot of her bed and shaking her head no. He thought she was seeing an angel, waiting to take her
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to heaven. David said, “It’s okay, Mom, you can go.” The patient died 20 minutes later. The social worker responded respectfully to David’s description of this transpersonal experience. At Mary’s funeral, the phrase was repeated, “We loved you, but God loved you more.” David led the service, and at one point sang the old Christian hymn, “In the sweet bye and bye, when we meet on that beauti- ful shore.” The team, in partnership with Dorothy and the family’s minister, had worked with David on resolution of spiritual and psychological issues, enabling him to experience growth in the face of suffering. David had lost two parents by the age of 30 but was able to cope with this through his strong spiritual beliefs and the support of his church community. The hospice team would continue to support him through bereavement services, coordinating their efforts with the church community.
DISCUSSION
We have learned that interdisciplinary team functioning is critical to effective care for those near the end of life. In the current health care system, with the exception of most hospice teams, it is often the case that psychosocial and spiri- tual caregivers are not fully utilized. When teams in health care are used, they are more typically providing multidisciplinary care that is physician directed and with each team member operating in his or her own professional silo. Patients and families are not encouraged to be involved or to lead the caregiving team. Care is focused on problem solving, with little attention to opportunities for growth that might occur near the end of life.
Hospice care is the best example of interdisciplinary care at the current time, although separate palliative care programs are emerging, and these also have the potential to provide effective interdisciplinary care. Yet not all hospices operate in a truly interdisciplinary fashion. Many newer programs have not developed the sophistication to function at this level or face resource limitations that inter- fere with the time needed to achieve this level of collaboration.
In higher functioning interdisciplinary teams, the patient and family are encouraged to direct the team to create an end-of-life experience that is consis- tent with their values and goals for life closure. Each patient and family facing the end of life does so in a unique way. Effective interdisciplinary teams do not try to impose a right way to die on a patient and family. Some coaching can be used to identify the dimensions that the patient and family feel are important, and care is designed to address these areas, which can include the physical, inter- personal, internal, and transcendent.
The characteristics of high-functioning interdisciplinary teams include the ability to grow and learn from mistakes. These teams have clear goals and roles, and individuals work together in a climate of goodwill where there is mutual support and conflicts are open and resolved. There is no secrecy, and leadership is shared. For each case, the patient and family can determine who they are most
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comfortable relating to, whether it is the home health aide or the physician. Team members do not compete for the affections of the patient or need to be the most important person to the family. Competencies are shared, and roles can be blurred or blended for the benefit of the patient and family.
Although we have learned much about effective teamwork, there is much that is not known. Further research is needed to help identify the special characteris- tics of teams that lead to more effective collaboration. Interdisciplinary care is especially valuable for people who are chronically ill and dying; however, this care is not necessary for all patients. We need clearer knowledge concerning how to apply what kinds of interdisciplinary care to which populations.
Teaching interdisciplinary care remains a challenge. Although social work and nursing professions have developed curricula, medical schools typically do not include it. Experience suggests it cannot simply be taught in a classroom. Internships are necessary, and mentoring can be an effective training tool.
What is more important to achieving a more interdisciplinary health care sys- tem is significant change in the culture of health care. We do not reward interdis- ciplinary collaboration in health care, and neither do the payment structures enable such care. Hospice is the only care provider explicitly reimbursed for interdisciplinary care to include psychosocial components and promotion of opportunities for growth near the end of life.
The education of all health care professionals needs to value true interdisci- plinary collaboration. Physicians need to be taught not to see themselves as the center of the health care system but instead as an important component in the total care of an individual. Nurses and other health care professionals need to learn to empower themselves as advocates for whole-person interdimensional care. No individual team member alone can meet the needs of these highly com- plex patients and families facing the most difficult passage of a lifetime.
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