527506
research-article2014
CPJXXX10.1177/0009922814527506Clinical PediatricsMilstein
Commentary
Our Moral Imperative: Finding a Path to Wholeness
Clinical Pediatrics 2015, Vol. 54(3) 205–207 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0009922814527506 cpj.sagepub.com
Jay M. Milstein, MD1
Introduction When individuals and their families experience lifealtering events that are disease based or when people encounter life-altering events that either occur naturally or artifactually, they often enter a state of despair and hopelessness. In individuals and their families, such events can occur throughout the entire lifespan—from the neonatal period, often manifesting during the fetal state before birth, to the end of life in the geriatric period, often manifesting earlier because of significant disease processes. Similarly, in people such events can occur at any time in their lifetimes. It is our moral imperative to help these individuals and their families or people, collectively, find a path to wholeness in order to cope.1 The purpose of this article is to present a modification of a paradigm of integrative care that embraces previously ignored elements—hope and wholeness. It continues to have applicability to individuals with disease and their families but also expands its universality. Finally, it may serve to raise our consciousness.
Application to Individuals In an integrative paradigm of care, curing that addresses the organic or biologic bases of disease is introduced simultaneously with healing that addresses the cognitive, emotional, and spiritual elements of the illness, the human experience.2 In this particular model, bereavement is introduced at the outset of the disease/illness because it may be a manifestation well before the occurrence of death, more often at the time of diagnosis. It is depicted as an encircling ribbon throughout the course. Certain guidelines accompany this paradigm including the mindset of “doing to” when implementing curing measures and the mindset of “being with” when implementing healing measures. Kobler and Limbo proposed a modification to the paradigm by introducing hope in the encasing ribbon.3 Since curing often eludes us in many disease states, short of a miracle, viewing the dynamic nature of hope in relation to progressive disease states, a shift toward a sense of healing and meaning may represent an appropriate goal. This shift in goals is consistent with Snyder’s theory of hope. When
identifiable goals become unattainable, using hopeful thinking, individuals may adjust their goal pursuits4; hopeful thinking is composed of 2 components: perceived capability to produce workable routes to desired goals (pathway thinking) and requisite motivation or human qualities including intentionality, forethought, self-reactiveness, and self-reflectiveness to initiate and sustain use of these routes (agency thinking).5 In the current paradigm, the transition from hopelessness to wholeness has been added and may represent such a goal.4-6 The sense of wholeness and addressing the human experience may provide very powerful, suitable alternative goals that are not dependent on an elusive cure (Figure 1). Within the physician–patient–family relationship, there is an expectation that curing measures will be pursued. As part of a more complete relationship, however, there may be an obligation to explore the human condition. Surprisingly, this exploration is often missing. Physicians may raise questions regarding symptoms perceived by the patient in the past or present or signs that may be detected by the examiner but usually do not ask how a patient feels about having a particular disease. Posing such a question may provide a simple entrée into their human condition and experience. While a patient’s thoughts and feelings should be easily shared with one’s physician, they often are not. By shifting to the mindset of being with one’s patient and his/her family, one can develop a compassionate presence, a state built on trust and empathy. Simply asking what someone’s life was like before then after an event helps demonstrate to the patient that there is a sense of caring. Exploration of the patients’ narratives and the interruption imposed by their disease states helps validate their sense of self-worth, a particularly important feat when individuals contemplate their own end-of-life or other life-altering events.6 1
University of California, Davis, CA, USA
Corresponding Author: Jay M. Milstein, Division of Neonatology, Department of Pediatrics, 2516 Stockton Boulevard Ticon II, Room # 354, Sacramento, CA 95817, USA. Email: [email protected]
Downloaded from cpj.sagepub.com at Purdue University on June 8, 2015
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Clinical Pediatrics 54(3)
Figure 1. Integrative paradigm of care.2
Healing and curing are introduced in parallel. Since a loss can be experienced in the absence of death, bereavement is represented as a continual process from the outset. Healing is facilitated with a mindset of “being with” while curing with a mindset of “doing to.”2 Continual hope3 and the transition from hopelessness to wholeness are added.
Once a compassionate presence is established, guiding the patient and his/her family or patients and their families through their thoughts and feelings regarding their loss becomes possible on a tangible plane, thus addressing the cognitive and emotional elements of the illness. In pursuit of sense-making or a sense of meaning, it may be necessary to address the spiritual elements of the illness. This may require transcendence to a more existential, intangible plane outside their usual areas of contemplation and worldly existence.6 While for most patients these new areas of contemplation may be outward and beyond oneself, for some, that shift may be more inward. An introspective shift may help bring clarity in terms of reconciling and fitting into their new reality. The latter exploration may be a step toward redirecting one’s goals as others become
unattainable. Wholeness and a sense of meaning even in the face of dismal outcomes may truly represent a higher goal, especially after a loved one’s death. Attaining a sense of meaning, even if survival is no longer a possibility, may provide tremendous solace to all concerned. It seems appropriate for individual physicians and caregivers to attend to their patients’ holistic/healing needs. Ideally this process is performed contemporaneously. However, because of various exigencies, it may be addressed historically, remaining invaluable to survivors.1 In relation to this perspective, on a small scale this represents a one-with-one intersection between medicine and society. This one-with-one approach may actually level the physician–patient relationship in the spirit of “being with.”
Downloaded from cpj.sagepub.com at Purdue University on June 8, 2015
207
Milstein
Universality
Closing Thoughts
For people as a collective, life-altering events may arise either naturally or artifactually. The former may be in response to natural disasters such as earthquakes, floods, and hurricanes, among other events. Whereas the latter may be in response to infamous despots or even unbalanced individuals impacting on smaller groups of people on a more local basis as in Boston, Newtown, and “any town” (the United States) or “any village” (the world). Such assailants are purposefully unnamed to deny their 15 minutes of fame yet their actions are indelibly etched into our memories. If one were to approach a community that experienced any of these life-altering events, one would encounter people in a state of bereavement. When people are affected, it calls for a more expansive intersection or juncture between medicine and society. As stewards of world health and wellness, such a role for the institution of medicine and particularly those in pediatrics, palliative care, and family and community medicine along with other sectors of the population may be appropriate. In Newtown, for example, the community effort spearheaded by pediatricians embodied critical tangible and holistic elements of systems-based practice, a core competency in medical school and residency.7,8 After critical triage the pediatricians assumed leadership roles in violence prevention, media engagement, and mental health care that went beyond an office visit and engaged a system.8 From the perspective of the paradigm in that context, rebuilding cities, towns, and infrastructure represent curative measures, while dealing with the cognitive, emotional, experiential, and spiritual needs of people en mass represent critical healing measures. Unfortunately, because of social diversity (including differences in age, culture, ethnicity, gender, language, race, and religion), it is difficult to approach large, diverse populations as a single collective, yet, from community to community, there may be enough commonality to interact as a collective as in Newtown. With a cognizance of existent social diversity, both locally and globally, though, pursuit of a path to wholeness may warrant markedly disparate approaches.
In relation to curing measures, one can read or hear about scientific and medical breakthroughs on a monthly, weekly, or even daily basis. In sharp contrast, such breakthroughs in healing measures do not abound. It is our moral imperative to pursue such measures to help find a path to wholeness. In that pursuit it is important that caregivers help patients and families maintain their sense of self-worth even in the face of change. In addition, the relationship between the caregivers and patients and their families is preserved. Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author received no financial support for the research, authorship, and/or publication of this article.
References 1. Milstein JM, Kovar LB, Kovar LJ, Paterniti DA. Piece of my mind. A path to wholeness. JAMA. 2012;308:985-986. 2. Milstein J. A paradigm of integrative care: Healing with curing throughout life, “being with” and “doing to.” J Perinatol. 2005;25:563-568. 3. Kobler K, Limbo R. Making a case: creating a perinatal palliative care service using a perinatal bereavement program model. J Perinat Neonatal Nurs. 2011;25:32-41. 4. Gum A, Snyder CR. Coping with terminal illness: the role of hopeful thinking. J Palliat Med. 2002;5:883-894. 5. Bandura A. Social cognitive theory: an agentic perspective. Annu Rev Psychol. 2001;52:1-26. 6. Milstein JM. Introducing spirituality in medical care: transition from hopelessness to wholeness. JAMA. 2008;299:2440-2441. 7. Wyckoff AS. Sandy Hook pediatricians share grief, advice, hope 6 months after tragedy. AAP News. 2013;34:1. 8. Nichols DG. The patient, the pediatrician, and the system. Official blog of the American Board of Pediatrics. Abpeds.wordpress.com/2013/09/12. Accessed March 1, 2014.
Downloaded from cpj.sagepub.com at Purdue University on June 8, 2015
research-article2014
CPJXXX10.1177/0009922814527506Clinical PediatricsMilstein
Commentary
Our Moral Imperative: Finding a Path to Wholeness
Clinical Pediatrics 2015, Vol. 54(3) 205–207 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0009922814527506 cpj.sagepub.com
Jay M. Milstein, MD1
Introduction When individuals and their families experience lifealtering events that are disease based or when people encounter life-altering events that either occur naturally or artifactually, they often enter a state of despair and hopelessness. In individuals and their families, such events can occur throughout the entire lifespan—from the neonatal period, often manifesting during the fetal state before birth, to the end of life in the geriatric period, often manifesting earlier because of significant disease processes. Similarly, in people such events can occur at any time in their lifetimes. It is our moral imperative to help these individuals and their families or people, collectively, find a path to wholeness in order to cope.1 The purpose of this article is to present a modification of a paradigm of integrative care that embraces previously ignored elements—hope and wholeness. It continues to have applicability to individuals with disease and their families but also expands its universality. Finally, it may serve to raise our consciousness.
Application to Individuals In an integrative paradigm of care, curing that addresses the organic or biologic bases of disease is introduced simultaneously with healing that addresses the cognitive, emotional, and spiritual elements of the illness, the human experience.2 In this particular model, bereavement is introduced at the outset of the disease/illness because it may be a manifestation well before the occurrence of death, more often at the time of diagnosis. It is depicted as an encircling ribbon throughout the course. Certain guidelines accompany this paradigm including the mindset of “doing to” when implementing curing measures and the mindset of “being with” when implementing healing measures. Kobler and Limbo proposed a modification to the paradigm by introducing hope in the encasing ribbon.3 Since curing often eludes us in many disease states, short of a miracle, viewing the dynamic nature of hope in relation to progressive disease states, a shift toward a sense of healing and meaning may represent an appropriate goal. This shift in goals is consistent with Snyder’s theory of hope. When
identifiable goals become unattainable, using hopeful thinking, individuals may adjust their goal pursuits4; hopeful thinking is composed of 2 components: perceived capability to produce workable routes to desired goals (pathway thinking) and requisite motivation or human qualities including intentionality, forethought, self-reactiveness, and self-reflectiveness to initiate and sustain use of these routes (agency thinking).5 In the current paradigm, the transition from hopelessness to wholeness has been added and may represent such a goal.4-6 The sense of wholeness and addressing the human experience may provide very powerful, suitable alternative goals that are not dependent on an elusive cure (Figure 1). Within the physician–patient–family relationship, there is an expectation that curing measures will be pursued. As part of a more complete relationship, however, there may be an obligation to explore the human condition. Surprisingly, this exploration is often missing. Physicians may raise questions regarding symptoms perceived by the patient in the past or present or signs that may be detected by the examiner but usually do not ask how a patient feels about having a particular disease. Posing such a question may provide a simple entrée into their human condition and experience. While a patient’s thoughts and feelings should be easily shared with one’s physician, they often are not. By shifting to the mindset of being with one’s patient and his/her family, one can develop a compassionate presence, a state built on trust and empathy. Simply asking what someone’s life was like before then after an event helps demonstrate to the patient that there is a sense of caring. Exploration of the patients’ narratives and the interruption imposed by their disease states helps validate their sense of self-worth, a particularly important feat when individuals contemplate their own end-of-life or other life-altering events.6 1
University of California, Davis, CA, USA
Corresponding Author: Jay M. Milstein, Division of Neonatology, Department of Pediatrics, 2516 Stockton Boulevard Ticon II, Room # 354, Sacramento, CA 95817, USA. Email: [email protected]
Downloaded from cpj.sagepub.com at Purdue University on June 8, 2015
206
Clinical Pediatrics 54(3)
Figure 1. Integrative paradigm of care.2
Healing and curing are introduced in parallel. Since a loss can be experienced in the absence of death, bereavement is represented as a continual process from the outset. Healing is facilitated with a mindset of “being with” while curing with a mindset of “doing to.”2 Continual hope3 and the transition from hopelessness to wholeness are added.
Once a compassionate presence is established, guiding the patient and his/her family or patients and their families through their thoughts and feelings regarding their loss becomes possible on a tangible plane, thus addressing the cognitive and emotional elements of the illness. In pursuit of sense-making or a sense of meaning, it may be necessary to address the spiritual elements of the illness. This may require transcendence to a more existential, intangible plane outside their usual areas of contemplation and worldly existence.6 While for most patients these new areas of contemplation may be outward and beyond oneself, for some, that shift may be more inward. An introspective shift may help bring clarity in terms of reconciling and fitting into their new reality. The latter exploration may be a step toward redirecting one’s goals as others become
unattainable. Wholeness and a sense of meaning even in the face of dismal outcomes may truly represent a higher goal, especially after a loved one’s death. Attaining a sense of meaning, even if survival is no longer a possibility, may provide tremendous solace to all concerned. It seems appropriate for individual physicians and caregivers to attend to their patients’ holistic/healing needs. Ideally this process is performed contemporaneously. However, because of various exigencies, it may be addressed historically, remaining invaluable to survivors.1 In relation to this perspective, on a small scale this represents a one-with-one intersection between medicine and society. This one-with-one approach may actually level the physician–patient relationship in the spirit of “being with.”
Downloaded from cpj.sagepub.com at Purdue University on June 8, 2015
207
Milstein
Universality
Closing Thoughts
For people as a collective, life-altering events may arise either naturally or artifactually. The former may be in response to natural disasters such as earthquakes, floods, and hurricanes, among other events. Whereas the latter may be in response to infamous despots or even unbalanced individuals impacting on smaller groups of people on a more local basis as in Boston, Newtown, and “any town” (the United States) or “any village” (the world). Such assailants are purposefully unnamed to deny their 15 minutes of fame yet their actions are indelibly etched into our memories. If one were to approach a community that experienced any of these life-altering events, one would encounter people in a state of bereavement. When people are affected, it calls for a more expansive intersection or juncture between medicine and society. As stewards of world health and wellness, such a role for the institution of medicine and particularly those in pediatrics, palliative care, and family and community medicine along with other sectors of the population may be appropriate. In Newtown, for example, the community effort spearheaded by pediatricians embodied critical tangible and holistic elements of systems-based practice, a core competency in medical school and residency.7,8 After critical triage the pediatricians assumed leadership roles in violence prevention, media engagement, and mental health care that went beyond an office visit and engaged a system.8 From the perspective of the paradigm in that context, rebuilding cities, towns, and infrastructure represent curative measures, while dealing with the cognitive, emotional, experiential, and spiritual needs of people en mass represent critical healing measures. Unfortunately, because of social diversity (including differences in age, culture, ethnicity, gender, language, race, and religion), it is difficult to approach large, diverse populations as a single collective, yet, from community to community, there may be enough commonality to interact as a collective as in Newtown. With a cognizance of existent social diversity, both locally and globally, though, pursuit of a path to wholeness may warrant markedly disparate approaches.
In relation to curing measures, one can read or hear about scientific and medical breakthroughs on a monthly, weekly, or even daily basis. In sharp contrast, such breakthroughs in healing measures do not abound. It is our moral imperative to pursue such measures to help find a path to wholeness. In that pursuit it is important that caregivers help patients and families maintain their sense of self-worth even in the face of change. In addition, the relationship between the caregivers and patients and their families is preserved. Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author received no financial support for the research, authorship, and/or publication of this article.
References 1. Milstein JM, Kovar LB, Kovar LJ, Paterniti DA. Piece of my mind. A path to wholeness. JAMA. 2012;308:985-986. 2. Milstein J. A paradigm of integrative care: Healing with curing throughout life, “being with” and “doing to.” J Perinatol. 2005;25:563-568. 3. Kobler K, Limbo R. Making a case: creating a perinatal palliative care service using a perinatal bereavement program model. J Perinat Neonatal Nurs. 2011;25:32-41. 4. Gum A, Snyder CR. Coping with terminal illness: the role of hopeful thinking. J Palliat Med. 2002;5:883-894. 5. Bandura A. Social cognitive theory: an agentic perspective. Annu Rev Psychol. 2001;52:1-26. 6. Milstein JM. Introducing spirituality in medical care: transition from hopelessness to wholeness. JAMA. 2008;299:2440-2441. 7. Wyckoff AS. Sandy Hook pediatricians share grief, advice, hope 6 months after tragedy. AAP News. 2013;34:1. 8. Nichols DG. The patient, the pediatrician, and the system. Official blog of the American Board of Pediatrics. Abpeds.wordpress.com/2013/09/12. Accessed March 1, 2014.
Downloaded from cpj.sagepub.com at Purdue University on June 8, 2015
