Abstract
Edited by Tom A Hutchinson. New York: Springer, 2011, 258 pages, $39.95.
Whole Person Care edited by Tom Hutchinson contains 18 chapters and an appendix that covers a wide spectrum of related topics (healing, empathy, compassion, mindfulness) in various areas of medicine (outpatient clinic, preventative medicine, palliative care, medical education). The authors are well chosen and the extent of coverage allows readers to pick chapters that are pertinent to their interest without consecutively reading chapters.
Chapter 1 defines the whole person practitioner as one who is competent to manage disease and respects the individual in the context of his or her illness experience (and illness narrative).
In Chapter 2, Eric Cassell defines suffering as distress when intactness of personhood is threatened and loss of self-integrity and disintegration are experienced. He introduces an important theme, which I believe can be observed throughout the book. Suffering threatens coherence (meaning) cohesiveness (community), and consistency or continuity (legacy) of the whole person. The healing physician goes from the fundamentals of disease to what is necessary for patients to achieve their life goals and to know themselves as healthy (regardless of disease outcome). This chapter sets the stage for the following chapters. Coherence, cohesiveness, and continuity as domains of healing can been seen intermittently throughout the book.
Chapter 3 by Tom Hutchinson, Balfour Mount, and Michael Kearney covers suffering in those with incurable diseases. Suffering is inevitable in life but can move individuals to integrity and wholeness through finding coherence, cohesiveness, and continuity. The physician enters into suffering as the “wounded healer (one who will face death in the future).”
Chapter 4 by Drs Hutchinson and Brawer deals with the two types of relationships physicians have with patients: Hippocratic (disease oriented) and Asklepian (illness oriented). A table provided is helpful for understanding this medical dichotomy.
Chapter 5 by Dr Fricchione is a complex chapter covering separation and attachment theory and its role in illness adaptation and patient narrative. Separation-attachment dialectical processes involve attachment solutions when there are separation challenges. Mother-child bonding and attachment are replaced as we mature. Transitional objects can be seen in the way we use language (“mother earth,” “mother-church”). “Dis-ease” is anxiety associated with the fear of separation, cohesiveness, and death. Terminal illness produces anxiety over separation, loss of cohesion, and ultimately death. Healing becomes attachment through meaning (cohesiveness) at multiple levels. Integration occurs at four levels: ego to deeper self, self to others (“I – thou”), self to larger other (nature or the world around oneself ), and self to God. Dis-ease, allostatic stress with loss of attachment, is countered by reattachment at four levels. The separation and loss of attachment can be countered in strengthening attachments at four levels, the deeper self, to others, to nature, and to God. This chapter will require several readings and a concerted effort to understand the terminology for those of us who are naïve in the language of attachment theory.
Chapter 6 by Stephen Liben covers empathy, the ability to identify with another's emotions and thoughts. Pitfalls to expressing empathy include oversimplification (“I know how you feel”), transference, and over-identification. Empathy requires self-reflection. Compassion is empathetic attention, being in the moment. It is not altruism (“unselfish regard for or devotion to the welfare of others”). Physicians need self-compassion, which is taking responsibility for past mistakes, being less personally distressed by them, and building toward the future. Self-compassion is not self-pity or narcissistic self-esteem. Mindful self-compassion is important to empathy and is the middle way between disconnectedness and over-identification with patients.
In Chapter 6 Patricia Dobkin covers mindfulness. Mindfulness avoids physician burnout. Mindfulness brings the sufferer's symptoms to consciousness for the purpose of finding meaning. Physicians in turn need to be mindful of symptoms and how they are interpreted by patients (narrative competency). Physicians also need to be mindful of their personal feelings, references, and biases in a patient encounter. “Top-down” decisions that stress economic survival and time efficiency minimize the importance of mindfulness. At times, mindfulness is threatened by the ever present need for communication devices (blackberries and the like) which inhibit physicians from being present in the moment.
Chapter 8 by Abraham Tulis deals with language. Language shapes our perceptions, understanding, and meaning. The capacity to understand personal dialects (the meaning behind personal verbal and non-verbal expressions) is cherished by patients. Physicians give meaning to illness by “labeling” disease in ways the sufferer can understand. However, language can be depersonalizing and demoralizing. Patients are presented with information centered on disease and not personhood. For example, tumors regress or progress in oncology, rather than persons and patients being identified by disease. When transitioning to palliative care or hospice, “treatment is stopped.” So what does palliative medicine do or how does hospice function as if treatment is “stopped”? We can transition into medical language to distance ourselves from suffering or as a means of disempowering others. This chapter is a gem and should be a priority when reading the text.
In Chapter 9 Sheldon Salomon and Krista Lawlor cover death anxiety. Kierkegaard has divided awareness into awe and dread. Awe is to be alive, dread is experienced in facing our death. Continuous awareness of death can produce debilitating dread. We can consciously or unconsciously avoid dread and the sense of mortality (mortality salience) through various constructs such as national identity, self-esteem, and a false sense of immortality. Compulsive behavior on the part of the physician or caregiver may be one way of stemming the tide of anxiety over death. Terror management theory provides clues to behavior and choices people make when conscious of death. Unexamined death anxieties increase the likelihood that physicians will adhere unquestionably to the prevailing culture of “cure and fix” and avoid advance directives and palliative medicine or hospice referrals. Distancing and tribal responses are second reactions physicians may demonstrate when faced with death anxiety. Physicians need to counter potentially destructive behaviors associated with death anxiety with mindfulness. A genuine confrontation with mortality may yield a greater appreciation of life (awe). This chapter brings terror management theory into palliative medicine which I believe is a fruitful venture.
In Chapter 10 Michael Kearney and Radhule Weinenger explore whole person self-care. We need to stay connected at work for we are the medicine we give to the suffering. Unfortunately compassion fatigue, a secondary traumatic stress disorder, frequently occurs, as clinicians are vicariously damaged by patient suffering. The end result is disempowerment and disconnection with others. This is mitigated paradoxically by exquisite empathy which involves a highly attuned presence and authentic engagement with those for whom we care. Exquisite empathy requires self-awareness (of our family, culture, racial, and religious history, as well as our strengths and weaknesses). We also need to recognize our potential for transference and countertransference. A second practice, self-inventory, can also help mitigate compassion fatigue. Where and when am I most happy, most alive, and most connected with myself (and my vocation)? This self-reflection will prevent us from wandering into unhappy careers which for the first moments were appealing based upon externals. Vocational goals should be aligned to self-inventory assessment.
In Chapter 11 Tom Hutchinson covers prevention and whole person care. Most prevention programs are secondary measures aimed at detecting early-stage disease (such as screening mammograms, colonoscopies, blood pressure checks), while whole person prevention programs are wellness programs. While trying to prevent or avoid disease through screening programs, ultimately screening will become futile as terminal illness will set in for us all will happen. Whole person care is also centered on preventing the loss of meaning. Whole person wellness programs will supply a silver lining (meaning and cohesiveness) to bad events. The intensity of living is often magnified (the “awe” of life) with the diagnosis of chronic or life-limiting illness. Whole person care gives meaning to whole-body care.
Mary Grossman reviews complementary and alternative therapies in Chapter 10. Since the 1950s healing has been less associated with a patient's innate healing capacity and more with medical interventions. The rise of the randomized controlled trial made whole person care a secondary issue and the particulars of disease the primary outcome and patient centeredness succumbed to a disease-centered model. The use of complementary and alternative therapies is a way of recapturing and facilitating innate healing capacities. Besides biologically based therapies, meditation and mindfulness are included to facilitate growth toward wholeness and fulfillment. The development of integrative oncology is an attempt to incorporate evidence based complementary therapies into oncologic practice. Ironically, if complementary and alternative therapies are proven effective, they are no longer complementary or alternative but are considered mainstream.
In Chapter 11 Abdul-Missagh Ghadinian discusses the spiritual dimensions of whole person care. Spiritual mindfulness that arose from the Middle and Far East was characteristic and fundamental to science and medicine. However the biomedical model of the West divides spirituality from medicine. Scientific reduction either excludes or ignores the existence of transcendence. The goals of medicine are tangible: reduction of tumor, increase in disease-free intervals, absence of disease, economical efficacy. The health care system, insensitive to the whole person, deconstructs the person which demoralizes, and constructs maximum efficacy, financial viability and information narrative (smart phrases within electronic medical records). However no scientific or economic transformation can change the fundamental meaning and value of health care. Spirituality, defined as nonmaterial being that connects material and moral being to universal transcendental power has a goal healing as restoration to wholeness (and not necessarily absence of disease). Prayer is commonly practiced among the suffering. Spirituality mitigates against despair and dread, and provides a sense of meaning and belongingness (cohesiveness and connection).
David Rosenblatt and Jennifer Fitzpatrick present two concepts of disease in an introduction to genetics (Chapter 14). The Oslerian view is a body deranged by disease, and Garrod's view of is an organism in balance (or out of balance) with its environment. The importance of Garrod's viewpoint is that it includes the modern concept of genetic endowment which interacts with the environment to produce disease or health. Garrod's viewpoint is not genetic determinism. The patient's disease is not treated by focusing on the malady in isolation. Medical genetics is as much listening when consulting as providing information. Counseling involves making mutual goals, assessing readiness (for testing), performing assessment, diagnoses, giving results sensitively and with compassion, and care for the emotional reaction. It also involves accompanying the individual along the path of adjustment and helping him or her achieve a new equilibrium and harmony with the environment.
The busy medical wards are a difficult place to practice whole person care. Gordon Crelinston provides some advice in Chapter 15. Patients are usually deconstructed into disease entities and placed on different wards. Various steps are taken (diagnosis and treatment) for the purpose of “cure or fix,” rarely to help patients accommodate to their disability. The shift to whole person care would transition the paradigm from care of a “problem” that resides in an individual to the care of an individual who happens to have a disease. The paradigm would involve a switch from evidence-based (population based, uniform treatment) to evidence-influenced medicine which includes experience, personal values, and individual choices. Physicians need to query patients on their understanding, goals, values, and personalize risk-benefit equations to practice evidence-influenced medicine. They need knowledge of evidence-based guidelines also. Physicians should weigh the science, provide options, and engage in best choices for that particular patient (and not present a menu of options in a passive presentation for patients to choose).
Helen McNamara and J. Donald Boudreau address whole person care in medical schools in Chapter 16. Healing is a shift in quality of life away from anguish (dread) and suffering toward an experience of integrity, wholeness, and inner peace (awe). Traditional groupings of the “arts” may be limited to proper bedside manner, politeness, displaying authentic compassion, and professionalism and may not contain narrative medicine competencies. Narrative medicine involves intellectual and affective skills and activities which an individual uses to explore the experience of illness, leading to a greater appreciation and understanding of the sufferer. Narrative medicine is a catalyst for self-reflection and provides emotional support to overworked physicians. Narrative medicine in the later years of training is often overshadowed by the hidden curriculum of technical competence. Medical students often are taught that getting to know your patients on the wards is a luxury. This chapter outlines the McGill University module on patient-centered care and is an excellent synopsis of the integration of whole person care into education.
Richard Cruess and Sylvia Cruess review whole person care and professionalism in Chapter 17. Western medical roots go back to Aesculpean and Hippocratic traditions which emphasize selfless service. Before the advent of modern medicine, cure of disease was rare but patient satisfaction was high. Scientific reductionism and subspecialties were born in the second half of the twentieth century and led to dramatic changes in the management of biological processes associated with disease and a payment system based on disease (Diagnosis Related Groups) and procedures. Paradoxically, the scientific revolution leads to the capability of curing but a mistrust of the medical profession. Physicians gained autonomy and financial status in society through national professional organizations. Professionalism is viewed by these societies as service, autonomy, ethical behavior (self-regulatory) in exchange for benefits (monopoly, autonomy, and financial rewards). Individuals suffering from disease see professionalism as whole person care. A professional healer is caring and compassionate, has insight, communicates well, respects the patient's healing journey (healing function), respects the sufferer's autonomy and dignity, and accompanies the individual through the course of illness.
Tom Hutchinson provides a concluding chapter (Chapter 18) and Dr Cassell an appendix: The Nature of Persons and Clinical Medicine. Both are important additions to the text as summaries.
This book is an important contribution to the field of palliative medicine and should be required reading for palliative medicine physicians and fellows. Though some chapters are difficult to understand due to technological terms, rereading the book and taking notes increased my appreciation of the authors' points of view. This text is unique and worth the purchase. It has certainly enhanced my practice of palliative medicine.