Families, Systems, & Health 2015, Vol. 33, No. 2, 104 –107
© 2015 American Psychological Association 1091-7527/15/$12.00 http://dx.doi.org/10.1037/fsh0000133
COMMENTARY
Advancing Family Involvement in Collaborative Health Care: Next Steps John S. Rolland, MD, MPH This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
University of Chicago Pritzker School of Medicine and Chicago Center for Family Health, Chicago, Illinois Keywords: collaborative family healthcare, integrated behavioral health, family systems
C. J. Peek has provided us with a masterful integration of Don Bloch’s vision of collaborative family health care and the evolution over the past 20 years of the field; the journal Families, Systems, & Health; and the Collaborative Family Healthcare Association (CFHA). Drawing from two presentations and discussions at the 2004 and 2014 CFHA meetings, he outlines current developmental needs and future directions in clinical practice, research, policy and finance, branding, and acceptance of integrated behavioral health care. I was very fortunate to be part of the initial meeting at Wingspread in 1994. As a family systems– oriented community and public health–trained psychiatrist, my primary focus over 30 years has been on families facing chronic illness and disability and collaborative care efforts in specialty, primary, rehabilitation, and palliative care medicine. Family in Integrated/Collaborative Care Family was a crucial dimension of Don Bloch’s and the Wingspread workgroup’s ecosystemic collaborative care model. Yet, as Peek describes, family systems– oriented models of integrated care and actual inclusion of families in the collaborative process with health care professionals remain far less common. He notes that it has been less emphasized in training and education since 1994.
Correspondence concerning this article should be addressed to John S. Rolland, MD, MPH, 噦 Chicago Center for Family Health, 20 North Wacker Drive, Suite 1442, Chicago, IL 60606. E-mail: [email protected]
There has been vast underutilization of the concept of incorporating the patient-family as a valued resource and partner in all aspects of collaborative health care (not just behavioral) and where “mobilizing families’ resources and expertise throughout treatment” (Bloch, 1993), recovery, and maintaining health are essential to optimal health care. Why is this? In my view, the ability of the health care consumer (patient and his or her family members) and professional worlds to collaborate in a more egalitarian and less hierarchical and wary manner remains a significant constraint to progress. This deficit goes beyond the complexities of training and financial reimbursement. The deficit reveals a lack of appreciation of what it means to be a professional with special knowledge and skills while also recognizing the limits of that expertise in forging optimal collaboration. The inclusion of families’ expertise is the other necessary component of the collaborative health care equation. This investment in families is relevant to the clinical context and to integrated care policy formulation and implementation. I am distinguishing this component from the family systems– based knowledge and skills that should be better promoted in professional education and core competencies. Both are necessary, but the former involves a basic value about the nature of the relationship between providers and consumers of health care. In this context, I prefer the word consumer because it connotes a more balanced hierarchical relationship to health care professionals than patient or patient’s family. Drawing from an article in this journal that summarized a “consumer” plenary at the first CFHA conference
104
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
ADVANCING FAMILY INVOLVEMENT IN COLLABORATIVE HEALTH CARE
in 1995 about the role of families in collaboration, I believe that health and mental health professionals have the ethical responsibility, when possible, to challenge and change the systems we work in, particularly hierarchical power relationships that marginalize and subordinate the family (Ooms, Rolland, Mintz, & Doppelt, 1995). Challenging underlying assumptions and biases would help promote valuable strategic alliances that are so essential to the next developmental phase of family-oriented health care. The main advances in collaboration have been between professionals— health and behavioral health care providers. Models of patient-centered care emphasize provider teamwork with the patient. The nature of the relationship with the patient is highly variable, spanning traditional hierarchy to more egalitarian, mutual relationships. However, despite inclusion of “family” in the language of collaboration, far less attention has been given to collaboration with the patient’s family system. Also, the nature of the behavioral health care component is highly diverse. By example, my own discipline, psychiatry, tends to be DSM–5 diagnosis oriented, where pharmacological interventions predominate (American Psychiatric Association, 2013). Behavioral health psychologists often utilize neuropsychological assessment and modalities such as cognitive-behavioral treatment directed toward the patient. Medical social workers tend toward integration with community resources (e.g., community-based social services and resources, entitlement programs, skilled health care services). Chaplaincy emphasizes the spiritual domain. Medical family therapists and other family systems– based mental health professionals emphasize the patient in the context of the family system and community. The need for this diverse and complementary system of biopsychosocial-spiritual approaches is crucial. Basic familiarity and knowledge (as distinct from advanced skills) with each approach is essential to effective interdisciplinary collaboration. In addition, a family-oriented systems lens provides an effective hub of the biopsychosocial-spiritual wheel, facilitating patient adherence and overall patient-family well-being. Doherty
105
and Baird (1986) provided a very useful model of levels of family-oriented care, spanning the spectrum from mindfulness about the patient’s family to intensive family therapy. In my training of psychiatry residents, family physicians, health psychologists, medical family therapists, and medical social workers, I emphasize the ability to provide a culturally and socioeconomically sensitive family consultation as the basic and most often needed skill. The noted drift away from family also reflects a behavioral paradigm focused on individual deficits or psychopathology, DSM–5, and evidence-based individual and psychopharmacological interventions. Ideological and political struggles continue over the need for relationally based, reimbursable diagnoses. Existing evidence for the effectiveness of individual patient interventions does not mean that these interventions are most advantageous for the entire family system, including the patient. We need a broader view of evidence and cost-effectiveness that also includes health care status and costs to other family members, particularly caregivers. A family system view contains health care, workplace-related costs to both families and employers, and caregiving costs. For instance, the value of the services that family caregivers provide for “free” is estimated to be a staggering $450 billion a year (Feinberg, Reinhard, Houser, & Choula, 2011). Nearly two thirds of family caregivers are employed full- or part-time, coming disproportionately from lower income families. Our challenge is to better demonstrate both the economic and quality of care advantages of a family systems– oriented paradigm that includes both family and individual clinical approaches. I have been fortunate to see the family dimension more successfully operationalized and integrated into other nations’ health care systems, where the underlying financing is based on some version of national health care. One example is the government subsidization of family caregivers for extended and intensive caregiving in the Netherlands. Seeing this in action has only strengthened my convictions of what is needed in our own health care system.
106
ROLLAND
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Family-Oriented Collaboration With Specialty Care, Rehabilitation Medicine, and Palliative Care Chronic conditions by their very nature draw the patient’s family, extended networks, and community into the caregiving team. Similarly, there is extensive evidence showing physical and mental health morbidity for family members involved in intense and protracted caregiving. Whether chronic conditions are treated in primary or specialty care settings, the need for a family-oriented model of care could not be clearer (Rolland, in press). The rapid expansion of rehabilitation medicine, palliative and hospice care, and geriatric health care offers huge opportunities for family-oriented care. The burgeoning field of genomic medicine is by definition family based. Also, palliative and end-of-life care and genomic testing involve enormously complex ethical challenges and decision making that require family-based collaborative care. A number of cities have developed professional-consumer coalitions to address endof-life clinical care, public education, advocacy, and policy issues. For instance, the Chicago End-of-Life Care Coalition was spawned 15 years ago. Here, we see collaboration between consumer families and palliative care professionals, but the involvement of primary care providers is missing but sorely needed. Current collaborative care models within specialty-care medicine vary enormously from infrequent requests for individual psychiatric consultations toward family-based consultation and integrated behavioral health care for any patient entering the specialty care setting. In each version, who is engaged (patient, family, extended network), at what phase in the illness, and in what manner can be profoundly different— each conveying different information, meanings, and definitions of the collaborative relationship. A paradigm of early involvement of patients and their families in a prevention and psychoeducationoriented consultation (vs. therapy or crisis) model of care creates the best foundation for effective collaboration with the consumer. Ironically, with greater attention to the psychosocial component of chronic illness, par-
allel development of silos of integrated care is occurring. Recently, I participated in a Mental Health Issues of Diabetes (MHID) national initiative bringing together prominent biomedical and behavioral diabetes care providers, consumer leadership/consumer-based organizations (Juvenile Diabetes Research Foundation), and health care insurance representation to discuss innovative models of integrated diabetes health care. Comparing the CFHA and MHID meetings, I was keenly aware of the similarities in development of integrated care, yet there is a lack of contact between these “health care worlds,” one based in primary the other in specialty health care. This lack of connection mirrors the challenges experienced by patients and their families trying to get effective collaborative care among their primary and specialty care providers. With complex medical conditions and individuals with multiple chronic disorders, the cast of specialists operating in their own “silos” can become bewildering to the patient and result in disconnected care applied to different body parts and systems. This is most common in later life. I often act as a “bridge builder” by contacting the patient’s different providers, suggesting the need for improved networking, or coaching patients to advocate for better communication and collaboration among their different health care providers. I wish to echo and complement C. J. Peek’s summary comments: in the next phase of evolution of integrated health care, I believe we need to (a) recommit ourselves to patientfamily as an essential resource and equal partner in collaborative-integrated health care, (b) forge relationships between integrated primary and specialty health care (e.g., disease specific, palliative, rehabilitation), and (c) sharpen our attention to involvement of the consumer patient-family community in both health care services and strategic planning at the advocacy and policy levels. References American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author. Bloch, D. (Ed.) (1993). Collaborative family health care conference project background (Briefing
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
ADVANCING FAMILY INVOLVEMENT IN COLLABORATIVE HEALTH CARE
book prepared by Don Bloch and planning committee: Macaran Baird, Thomas Campbell, Kathleen Cole-Kelly, Lee Combrinck-Graham, William J. Doherty, Jeri Hepworth, Susan McDaniel, Theodora Ooms, David Seaburn, Peter Steinglass, and Lyman Wynne, for conference participants by the Johnson Foundation). 1994 Wingspread Conference, Racine WI, January 1994. Doherty, W. J., & Baird, M. A. (1986). Developmental levels in family-centered medical care. Family Medicine, 18, 153–156. Feinberg, L., Reinhard, S., Houser, A., & Choula, R. (2011). Valuing the invaluable: 2011 update the grow-
107
ing contributions and costs of family caregiving. Washington, DC: AARP Public Policy Institute. Ooms, T., Rolland, J., Mintz, S., & Doppelt, L. (1995). Families and the collaborative process. Family Systems Medicine, 13, 299 –313. Rolland, J. (in press). Mastering the family challenges with illness and disability: An integrative practice model. New York, NY: Guilford.
Received April 7, 2015 Accepted April 7, 2015 䡲
© 2015 American Psychological Association 1091-7527/15/$12.00 http://dx.doi.org/10.1037/fsh0000133
COMMENTARY
Advancing Family Involvement in Collaborative Health Care: Next Steps John S. Rolland, MD, MPH This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
University of Chicago Pritzker School of Medicine and Chicago Center for Family Health, Chicago, Illinois Keywords: collaborative family healthcare, integrated behavioral health, family systems
C. J. Peek has provided us with a masterful integration of Don Bloch’s vision of collaborative family health care and the evolution over the past 20 years of the field; the journal Families, Systems, & Health; and the Collaborative Family Healthcare Association (CFHA). Drawing from two presentations and discussions at the 2004 and 2014 CFHA meetings, he outlines current developmental needs and future directions in clinical practice, research, policy and finance, branding, and acceptance of integrated behavioral health care. I was very fortunate to be part of the initial meeting at Wingspread in 1994. As a family systems– oriented community and public health–trained psychiatrist, my primary focus over 30 years has been on families facing chronic illness and disability and collaborative care efforts in specialty, primary, rehabilitation, and palliative care medicine. Family in Integrated/Collaborative Care Family was a crucial dimension of Don Bloch’s and the Wingspread workgroup’s ecosystemic collaborative care model. Yet, as Peek describes, family systems– oriented models of integrated care and actual inclusion of families in the collaborative process with health care professionals remain far less common. He notes that it has been less emphasized in training and education since 1994.
Correspondence concerning this article should be addressed to John S. Rolland, MD, MPH, 噦 Chicago Center for Family Health, 20 North Wacker Drive, Suite 1442, Chicago, IL 60606. E-mail: [email protected]
There has been vast underutilization of the concept of incorporating the patient-family as a valued resource and partner in all aspects of collaborative health care (not just behavioral) and where “mobilizing families’ resources and expertise throughout treatment” (Bloch, 1993), recovery, and maintaining health are essential to optimal health care. Why is this? In my view, the ability of the health care consumer (patient and his or her family members) and professional worlds to collaborate in a more egalitarian and less hierarchical and wary manner remains a significant constraint to progress. This deficit goes beyond the complexities of training and financial reimbursement. The deficit reveals a lack of appreciation of what it means to be a professional with special knowledge and skills while also recognizing the limits of that expertise in forging optimal collaboration. The inclusion of families’ expertise is the other necessary component of the collaborative health care equation. This investment in families is relevant to the clinical context and to integrated care policy formulation and implementation. I am distinguishing this component from the family systems– based knowledge and skills that should be better promoted in professional education and core competencies. Both are necessary, but the former involves a basic value about the nature of the relationship between providers and consumers of health care. In this context, I prefer the word consumer because it connotes a more balanced hierarchical relationship to health care professionals than patient or patient’s family. Drawing from an article in this journal that summarized a “consumer” plenary at the first CFHA conference
104
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
ADVANCING FAMILY INVOLVEMENT IN COLLABORATIVE HEALTH CARE
in 1995 about the role of families in collaboration, I believe that health and mental health professionals have the ethical responsibility, when possible, to challenge and change the systems we work in, particularly hierarchical power relationships that marginalize and subordinate the family (Ooms, Rolland, Mintz, & Doppelt, 1995). Challenging underlying assumptions and biases would help promote valuable strategic alliances that are so essential to the next developmental phase of family-oriented health care. The main advances in collaboration have been between professionals— health and behavioral health care providers. Models of patient-centered care emphasize provider teamwork with the patient. The nature of the relationship with the patient is highly variable, spanning traditional hierarchy to more egalitarian, mutual relationships. However, despite inclusion of “family” in the language of collaboration, far less attention has been given to collaboration with the patient’s family system. Also, the nature of the behavioral health care component is highly diverse. By example, my own discipline, psychiatry, tends to be DSM–5 diagnosis oriented, where pharmacological interventions predominate (American Psychiatric Association, 2013). Behavioral health psychologists often utilize neuropsychological assessment and modalities such as cognitive-behavioral treatment directed toward the patient. Medical social workers tend toward integration with community resources (e.g., community-based social services and resources, entitlement programs, skilled health care services). Chaplaincy emphasizes the spiritual domain. Medical family therapists and other family systems– based mental health professionals emphasize the patient in the context of the family system and community. The need for this diverse and complementary system of biopsychosocial-spiritual approaches is crucial. Basic familiarity and knowledge (as distinct from advanced skills) with each approach is essential to effective interdisciplinary collaboration. In addition, a family-oriented systems lens provides an effective hub of the biopsychosocial-spiritual wheel, facilitating patient adherence and overall patient-family well-being. Doherty
105
and Baird (1986) provided a very useful model of levels of family-oriented care, spanning the spectrum from mindfulness about the patient’s family to intensive family therapy. In my training of psychiatry residents, family physicians, health psychologists, medical family therapists, and medical social workers, I emphasize the ability to provide a culturally and socioeconomically sensitive family consultation as the basic and most often needed skill. The noted drift away from family also reflects a behavioral paradigm focused on individual deficits or psychopathology, DSM–5, and evidence-based individual and psychopharmacological interventions. Ideological and political struggles continue over the need for relationally based, reimbursable diagnoses. Existing evidence for the effectiveness of individual patient interventions does not mean that these interventions are most advantageous for the entire family system, including the patient. We need a broader view of evidence and cost-effectiveness that also includes health care status and costs to other family members, particularly caregivers. A family system view contains health care, workplace-related costs to both families and employers, and caregiving costs. For instance, the value of the services that family caregivers provide for “free” is estimated to be a staggering $450 billion a year (Feinberg, Reinhard, Houser, & Choula, 2011). Nearly two thirds of family caregivers are employed full- or part-time, coming disproportionately from lower income families. Our challenge is to better demonstrate both the economic and quality of care advantages of a family systems– oriented paradigm that includes both family and individual clinical approaches. I have been fortunate to see the family dimension more successfully operationalized and integrated into other nations’ health care systems, where the underlying financing is based on some version of national health care. One example is the government subsidization of family caregivers for extended and intensive caregiving in the Netherlands. Seeing this in action has only strengthened my convictions of what is needed in our own health care system.
106
ROLLAND
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Family-Oriented Collaboration With Specialty Care, Rehabilitation Medicine, and Palliative Care Chronic conditions by their very nature draw the patient’s family, extended networks, and community into the caregiving team. Similarly, there is extensive evidence showing physical and mental health morbidity for family members involved in intense and protracted caregiving. Whether chronic conditions are treated in primary or specialty care settings, the need for a family-oriented model of care could not be clearer (Rolland, in press). The rapid expansion of rehabilitation medicine, palliative and hospice care, and geriatric health care offers huge opportunities for family-oriented care. The burgeoning field of genomic medicine is by definition family based. Also, palliative and end-of-life care and genomic testing involve enormously complex ethical challenges and decision making that require family-based collaborative care. A number of cities have developed professional-consumer coalitions to address endof-life clinical care, public education, advocacy, and policy issues. For instance, the Chicago End-of-Life Care Coalition was spawned 15 years ago. Here, we see collaboration between consumer families and palliative care professionals, but the involvement of primary care providers is missing but sorely needed. Current collaborative care models within specialty-care medicine vary enormously from infrequent requests for individual psychiatric consultations toward family-based consultation and integrated behavioral health care for any patient entering the specialty care setting. In each version, who is engaged (patient, family, extended network), at what phase in the illness, and in what manner can be profoundly different— each conveying different information, meanings, and definitions of the collaborative relationship. A paradigm of early involvement of patients and their families in a prevention and psychoeducationoriented consultation (vs. therapy or crisis) model of care creates the best foundation for effective collaboration with the consumer. Ironically, with greater attention to the psychosocial component of chronic illness, par-
allel development of silos of integrated care is occurring. Recently, I participated in a Mental Health Issues of Diabetes (MHID) national initiative bringing together prominent biomedical and behavioral diabetes care providers, consumer leadership/consumer-based organizations (Juvenile Diabetes Research Foundation), and health care insurance representation to discuss innovative models of integrated diabetes health care. Comparing the CFHA and MHID meetings, I was keenly aware of the similarities in development of integrated care, yet there is a lack of contact between these “health care worlds,” one based in primary the other in specialty health care. This lack of connection mirrors the challenges experienced by patients and their families trying to get effective collaborative care among their primary and specialty care providers. With complex medical conditions and individuals with multiple chronic disorders, the cast of specialists operating in their own “silos” can become bewildering to the patient and result in disconnected care applied to different body parts and systems. This is most common in later life. I often act as a “bridge builder” by contacting the patient’s different providers, suggesting the need for improved networking, or coaching patients to advocate for better communication and collaboration among their different health care providers. I wish to echo and complement C. J. Peek’s summary comments: in the next phase of evolution of integrated health care, I believe we need to (a) recommit ourselves to patientfamily as an essential resource and equal partner in collaborative-integrated health care, (b) forge relationships between integrated primary and specialty health care (e.g., disease specific, palliative, rehabilitation), and (c) sharpen our attention to involvement of the consumer patient-family community in both health care services and strategic planning at the advocacy and policy levels. References American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author. Bloch, D. (Ed.) (1993). Collaborative family health care conference project background (Briefing
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
ADVANCING FAMILY INVOLVEMENT IN COLLABORATIVE HEALTH CARE
book prepared by Don Bloch and planning committee: Macaran Baird, Thomas Campbell, Kathleen Cole-Kelly, Lee Combrinck-Graham, William J. Doherty, Jeri Hepworth, Susan McDaniel, Theodora Ooms, David Seaburn, Peter Steinglass, and Lyman Wynne, for conference participants by the Johnson Foundation). 1994 Wingspread Conference, Racine WI, January 1994. Doherty, W. J., & Baird, M. A. (1986). Developmental levels in family-centered medical care. Family Medicine, 18, 153–156. Feinberg, L., Reinhard, S., Houser, A., & Choula, R. (2011). Valuing the invaluable: 2011 update the grow-
107
ing contributions and costs of family caregiving. Washington, DC: AARP Public Policy Institute. Ooms, T., Rolland, J., Mintz, S., & Doppelt, L. (1995). Families and the collaborative process. Family Systems Medicine, 13, 299 –313. Rolland, J. (in press). Mastering the family challenges with illness and disability: An integrative practice model. New York, NY: Guilford.
Received April 7, 2015 Accepted April 7, 2015 䡲
