There is a tendency for all living things to join up, establish linkages, live inside each other,
return to earlier arrangements, get along whenever possible.
This is the way of the world.
—Lewis Thomas, The Lives of a Cell, 1974 (1)
Each day, clinicians1 manage and treat the illnesses of patients who are joined to, linked with, and live within a larger context–the family. In fact, despite the popular attention given to singles living alone or with a non- family roommate, more than 70% of the American population still make their home with other family members (2). The family remains the most basic relational unit in society.
When we speak of the family, each of us develops a picture in our minds of what that means. For some, it is Mom, Dad, brother, and sister, as well as the family dog. For others, it may be Mom and stepdad, Grandma, Grandpa, and an aunt or uncle. For still others, the arrangements are less “traditional”: single-parent families, gay relationships, adoptive families, remarried families. Beyond that, there are those who feel their truest family is found in a religious community or among a set of friends. All of us have a personal sense of what the family is, but the task becomes difficult when it comes to defining the “typical family.”
The television stereotype of the American family in the 1950s, in which the husband is employed and the wife is a homemaker with dependent chil- dren, accounted for 28% of all married couples and only 10% of all house- holds in the 1990s (3). More common family forms that have emerged are single-parent families and “nonfamily households,” composed of single persons or persons living with nonrelatives. The American family of the late
1 We want to recognize that a variety of family-oriented health professionals provide care, including family physicians, internists, pediatricians, obstetrician- gynecologists, nurse practitioners, and physician assistants. As such, we will vary the term used to denote the clinician in our attempt to recognize and respect this pro- fessional diversity.
2 1. Basic Premises of Family-Oriented Primary Care
twentieth and early twenty-first century is a mix of couples (29%), two parents with children (25%), single-parent households (16%), and non- family households (30%) (2, 3) (see Fig. 1.1).
Even with these social changes, it is the family, however constituted, that most often addresses the individual’s need for physical and emotional safety, health, and well-being. Research supports the view that the family plays a vital role in the health and illness of its members (see Chap. 2). Because the nature of the family is evolving, our understanding of it also needs to evolve in order to capture its rich diversity.
We define family as any group of people related either biologically, emo- tionally, or legally. That is, the group of people that the patient defines as significant for his or her well-being. The family-oriented practitioner gathers information about these family relationships, patterns of health and illness across generations, emotional connections with deceased and geographi- cally removed members, and life-cycle transitions, in order to understand the patient within his or her larger context. In other words, the family- oriented clinician mobilizes the patient’s natural support system to enhance health and well-being.
In daily practice, the family-oriented clinician is most often interested in family members who live within the same house or apartment. Even though involvement of nonhousehold family members can be important to a patient’s medical care, the household is generally the primary focus in deter- mining a diagnosis and carrying out a treatment plan (4). It is important for the primary care physician to offer and encourage the whole household to register with him or her. In this way the clinician has access to the people who may most influence each other’s illness and health.
Without considering the patient in his or her family context, the physi- cian may inadvertently eliminate both a wider understanding of illness and a broader range of solutions as well. “Family-oriented primary care” does not mean the physician or nurse practitioner always sees entire households together. Rather, by family-oriented we mean an approach or way of think- ing that a clinician can bring to any patient encounter, with or without accompanying family members. A family-oriented approach involves think- ing about a symptom or problem in the context of the whole person and the person’s significant others. This way of thinking may at times mean the inclusion of other important persons in the assessment and treatment process; at other times, it may not.
We do not advocate family-oriented primary care because we believe that the family alone can cure disease; instead, we believe—and research is beginning to support—that planned and purposeful family participation in healthcare can be useful to the patient, the family, and the clinician. Not including family members, or family information, can at times run the risk of incurring roadblocks or, at least, detours on the road to effective and effi- cient primary care. Including family members means the clinician has enlisted his or her most potent allies in the treatment of his or her patients.
Basic Premises of Family-Centered Medical Care 3
Figure 1.1. The American family of the late twentieth–early twenty-first centuries.
Basic Premises of Family-Centered Medical Care
A family-oriented approach to healthcare incorporates and expands upon a biomedical approach. Some of the basic premises are:
Premise 1: Family-Oriented Healthcare Is Based on a
Biopsychosocial Systems Approach
An exclusively biomedical model, based on molecular biology, assumes that disease can be reduced to “measurable biological variables” (5). The task of the physician operating strictly from a biomedical approach is to analyze and eliminate all factors in the development of illness until the simplest bio- logical elements are identified. This approach ignores the influence of social and psychological factors. From a biomedical perspective, for example, the cause of tuberculosis is the tubercule bacillus. The dramatic fall in the inci- dence of the disease, however, has resulted more from public health meas- ures and improvements in social environment than from the introduction of antitubercular drugs (6). Few primary care clinicians now believe an exclusively biomedical approach is effective in primary care; instead, a biopsychosocial systems approach places illness within a larger framework involving multiple systems (7, 8). In his seminal article from 1980, George Engel, MD, first articulated the biopsychosocial approach and rendered a visual representation that illustrates this comprehensive view. To under- stand illness, the clinician must attend to the biological contributors as well as the person, the clinician–patient interaction, the family, the social setting, and how these factors may be connected in the creation of symptoms (see Fig. 1.2). Note that the relationship between these various factors involves continuous and reciprocal feedback. Each level responds and adjusts to changes in other levels. In that way, stability is maintained through a process
4 1. Basic Premises of Family-Oriented Primary Care
Figure 1.2. Systems hierarchy. (From: Engel GL. The clinical application of the biopsychosocial model. Am J Psychiatry. Copyright May 1980. The American Psychiatric Association. Reprinted with permission from The American Psychiatric Association.)
Basic Premises of Family-Centered Medical Care 5
of change, much the same as a tightrope walker maintains balance by making frequent shifts and adjustments. Dym (9) illustrates this process with a “simple” case of childhood asthma.
John is a 33-year-old Russian-American man who is a frequent drinker. When he drinks, his younger partner, Mary, criticizes him. (Mary’s Baptist parents never drank.) John and Mary’s son, Harry, 14, unable to deal with the stress of the fighting, flees to a friend’s house for the night. When the fight continues, George, 11, becomes anxious and has an asthma attack. Mary shifts her focus to George and gives him medicine through an inhaler. She then blames John who feels guilty. He leaves home temporarily, and the fight stops. The next day he drinks again and the cycle continues.
Asthma can represent a complex interaction of multiple factors at dif- ferent levels of the problem. George may have a genetic predisposition to the illness, and there may be environmental allergens that activate George’s symptoms. In addition, the illness is affected by a relational pattern that precipitates the symptom of wheezing. For the family-oriented clinician, understanding and addressing all these variables is necessary for compre- hensive treatment (10).
Many clinicians now operate from a “split biopsychosocial” model (11). This means that they work up a problem like asthma at the biomedical level, and then switch to a psychosocial assessment when they have not success- fully treated the problem from a purely biomedical point of view. The “split” approach produces resistance in the patient, who believes the clinician feels it is “all in my head.” This manual operationalizes an integrated biopsy- chosocial systems approach in which the patient and the problem are under- stood at multiple levels in context from the beginning.
Premise 2: The Primary Focus of Healthcare Is the
Patient in the Context of the Family
The clinician who operates from a biopsychosocial systems perspective highlights the patient’s family context as the primary arena in which health issues typically are addressed. Leaders in the field of family medicine have disagreed on the efficacy of considering the family as the “unit of care” (12–17). There are those who feel the individual is the primary “unit of care,” whereas others argue for the family. This argument is specious because it pits two levels of the biopsychosocial model against each other (i.e., the “individual” and the “family”) and forces a choice of what will be the “unit of care.” Although a clinician might choose to intervene primarily at only one of these levels in any given case, to argue for only one of them to be the sacred “unit of care” results in conceptual confusion (e.g., What does it mean for the family to be the “unit of care”?), and is antithetical to
6 1. Basic Premises of Family-Oriented Primary Care
the interrelationships between levels that are fundamental to the original meaning of the biopsychosocial systems model. For that reason, we have chosen to think of the patient in the context of the family as the “focus” rather than the “unit” of medical care. From this perspective, the physician is reminded of the importance of the person as a biological and emotional entity as well as the significance of the family’s influence on illness and health.
A balance must be achieved between the goals of agency for the indi- vidual, and communion for the group (8, 18). Agency is a sense that one can make personal choices in dealing with illness and the healthcare system. For patients with an illness, agency means not remaining passive. It means coming to grips with what they must accept while discovering what action they can take. Agency is a sense of activism about one’s own life in the face of all that is uncertain.
The other goal, communion, refers to strengthening emotional and spir- itual bonds that can be frayed by illness, disability, and contact with the healthcare system. It is the sense of being cared for, loved, and supported by a community of family members, friends, and professionals. Serious illness or disability is an existential crisis that can isolate people from those who care for them, with significant health consequences. Family-oriented primary care is an approach that takes into account the need for commu- nication, connection, and choice, in addition to high-quality biotechnical medicine in the delivery of healthcare today.
Both agency (of the individual) and communion (of the group) are important; not one at the expense of the other. Adolescent healthcare can drive this point home.
Billy Smith’s2 diabetes was first diagnosed at the age of 13 when he was admitted to the hospital with diabetic ketoacidosis (DKA). He adjusted well while in the hospital and began to manage his own insulin and diet shortly thereafter. An only child in an African-American family, Billy received support from his parents, especially his mother, who did not work outside the home. Billy’s diabetes was stable until his senior year in high school; his blood sugars were often in the 300s. Billy claimed to be taking his insulin and sticking to his diet. His diabetes eventually became so out of control that he was admitted to the hospital.
In this, and other situations like it, the family-oriented clinician will explore family issues to see how they may influence or be a resource in a crisis. As part of this process, four major considerations influence family-oriented primary care:
2 All cases in this book are actual primary care cases. Identities have been changed to protect confidentiality. Because of the importance of race and ethnicity to health beliefs, process, and uniqueness, we have included such attributions while acknowledging considerable individual and family variations within subgroups.
Basic Premises of Family-Centered Medical Care 7
The Family Is the Primary Source of Health Beliefs and Behaviors
The initial appraisal of physical symptoms is usually made within the family and is based upon family beliefs about health. Many families have a health expert, often the oldest female. The family health expert, in the preceding case Billy’s mother Mrs. Smith, often makes an initial health assessment and treatment plan and decides whether a physician should be consulted. Mrs. Smith made the first contact with Dr. B. She suggested that her son may be “under too much pressure” and wondered if that could affect his illness.
Many health behaviors and risk factors are shared by members of a family. For example, children are more likely to smoke if their parents smoke (19). Most families share the same diet, which along with genetic influences result in elevated cholesterol levels occurring within certain families (20). A family approach to health promotion and risk reduction is therefore likely to be more efficient and cost effective (21, 22).
The Stress of Family Developmental Transitions May Become Manifest in
Physical Symptoms
The family-oriented clinician is sensitive to the impact of life cycle changes on the health of family members (see Chap. 3). Marriage, birth of the first child, adolescence, leaving home, midlife, divorce, remarriage, loss of a job, death of a parent, and retirement are all developmental transitions that may occur in the life of a family (23). The health of family members may be more vulnerable due to the stress that can occur during these periods.
The Smiths were going through three significant transitions simultane- ously. Mr. Smith had made a career shift at midlife, Mrs. Smith’s mother died, and Billy, who was soon to graduate from high school, was facing the issue of leaving home. Each family member was under tremendous strain. The family as a whole was being transformed by the demands these changes were requiring.
Somatic Symptoms Can Serve an Adaptive Function Within the Family and Be Maintained by Family Patterns (24)
Dr. B. learned that Billy had a very close relationship with his mother. Mrs. Smith was protective of her son and Billy depended on his mother’s support during his illness. Mr. Smith supported the family primarily through his role as breadwinner and provider. Even though Mr. and Mrs. Smith were not very close, Billy and his father were able to maintain a good relationship. In the year prior to the acceleration of his illness, Mrs. Smith’s mother died and Mr. Smith had been traveling more since receiving a promotion. Billy was also making plans to leave home for college. Mrs. Smith’s needs for closeness increased due to her loss of her mother. Her neediness coincided with her husband’s frequent absence. Billy found himself in the position of having to meet his mother’s needs while feeling angry and frustrated over his father’s absence. Billy developed symptoms
8 1. Basic Premises of Family-Oriented Primary Care
during this time. As Billy’s symptoms worsened, Mr. Smith began to curtail his traveling. Mr. and Mrs. Smith also began to pull together to try to help their son.
Billy’s symptoms can be understood, in part, as a barometer of the pres- sure felt within the family. In a sense, the symptoms were both a problem and a solution. They were obviously a problem in that they presented a chal- lenge to his health and well-being, and created great concern for his parents who love him. Billy’s symptoms, however, may also be seen as a solution in that they brought Billy’s parents together to care for him, thus stabilizing their marital difficulties; the symptoms kept Billy from leaving home too quickly at a time when he was clearly concerned about his parents; in turn, they sounded an alarm for the alert physician that the whole family was in need.
Families Are a Valuable Resource and Source of Support for the
Management of Illness
Physicians and nurse practitioners recommend treatment that is usually carried out in the home by the patient and family members. To ignore the family is to invite sabotage and “noncompliance.”
In Billy’s case, he had taken responsibility for his insulin and diet with the support and supervision of his parents. As Dr. B. addressed this recent crisis he once again engaged the parents in planning for the management of their son’s illness. Despite their differences, Mr. and Mrs. Smith’s com- mitment to their son made coordinated planning and treatment possible.
Dr. B.’s approach to Billy’s diabetes takes his symptoms into account as well as the family context. It highlights how the family is a factor in both illness and health, and sets the stage for utilizing the family as a resource in developing and carrying out a treatment plan.
Premise 3: The Patient, Family, and Clinician Are Partners in Healthcare
To provide quality healthcare, family-oriented physicians and nurse practi- tioners use the most basic resources available to them—the patient and his or her family. It is through these people that the physician gains the most significant information for understanding symptoms and planning treat- ment. In this way, the family is a natural partner in healthcare.
This partnership destroys what Doherty and Baird have called “the illu- sion of the dyad in medical care” (25, p. 12). The illusion is that medical care only involves a one-to-one relationship between clinician and individual patient. Doherty and Baird point out that except in the most rare situations the family is involved in what takes place between physician or nurse prac- titioner and patient (see Fig. 1.3). Even when the family is not physically in the room, the patient’s role within the family, the family’s expectations of medical care, and the family’s relational patterns as they pertain to health and illness play a part in what transpires.
Basic Premises of Family-Centered Medical Care 9
Figure 1.3. The patient’s family tree. (Source: Crouch M., Roberts L., 1987. The
Family in Medical Practice. New York: Springer-Verlag.)
In place of a dyadic approach, Doherty and Baird propose a “triangular perspective” (see Fig. 1.4). This triangle involves the clinician, patient, and family working together in a medical-care partnership. Together they define what needs to be done. This includes identifying symptoms, establishing a treatment plan, and clarifying responsibilities. Medical treatment can go awry when this partnership is not in place.
A new patient, Mr. Samuel, a 30-year-old Romanian bricklayer, was prescribed medication and a low-salt diet for his hypertension by Dr. L. Mr. Samuel’s parents, with whom he had immigrated and now lived, had doubts about the efficacy of medical treatment. They questioned the medication and also felt the diet would mean their lifestyle would have to change as well. Mr. Samuel was caught between opposing expectations from his physician and his parents. He resolved the dilemma by complying with the treatment plan only in part. He took his medication irregularly and followed his diet for a few days. Partial compliance ironically convinced both Dr. L. and the family that each was right. Dr. L. saw it as confirmation that the patient must try harder. The family was convinced that the treatment was not working. Both
10 1. Basic Premises of Family-Oriented Primary Care
Figure 1.4. The therapeutic triangle in medicine.
sides escalated their positions and Mr. Samuel continued his com- promise. In the meantime, his blood pressure remained elevated.
Dr. L. soon recognized the situation and invited the patient’s parents to come in with him. He explained their son’s hypertension and the rationale for the treatment plan. He enlisted their help, clearly indicating that they could bring about some change for their son. Mr. Samuel’s mother was utilized as an expert on diet. The parents gave their “permission” for their son to take the medication.
The importance of the family in a patient’s adherence to medical treatment is well-documented (see Chap. 2). The family-oriented physician engages the patient and the family as an ally and a resource in negotiating a treat- ment plan that all can support.
Premise 4: The Family-Oriented Clinician Reflects on
How He or She Is Part of the Treatment System
Physicians who operate from a biopsychosocial systems perspective believe that “the observer constantly alters what he [or she] observes by the obtru- sive act of observation” (26, p. 129). Biopsychosocially oriented clinicians observe the interaction between themselves and their patients and ask themselves, “How am I part of what is happening?” In that sense they understand themselves as part of an interactional process in which their behavior contributes to what transpires. In fact, their interaction with the patient and family system may unwittingly support rather than relieve the problem.
Developing Skills for Family-Oriented Primary Care
Mrs. Jackson brought Mary, an 11, to the doctor’s office for the third
11
time in 3 months with symptoms of sore throat. Dr. K., alert to larger,
systemic issues in this interesting Latina/British-American family, asked
about stress and how the rest of the family was doing. In the course of
the visit, she learned that Mrs. Jackson had returned to work for the first
time in 12 years. Mr. Jackson was not pleased about the change. He felt
it had an adverse effect on Mary, the youngest of three. The Jackson’s
older children were away at college. Mr. Jackson felt he provided well
for his family and believed the income from Mrs. Jackson’s job was not
needed. Mrs. Jackson wanted to work as an opportunity to grow as well
as to help support the family. She felt Mary, who had recently entered
sixth grade in a new middle school, did not need her attention as much
as before. Mary said she just didn’t feel well and that things weren’t the
way they used to be.
Dr. K. wondered if her exclusive focus on Mary’s sore throat in the past 3 months had unintentionally supported the ongoing battle between Mr. and Mrs. Jackson over whether or not Mrs. Jackson should be working. Each time Mary became ill, Mr. Jackson insisted Mrs. Jackson take time off work to bring her to the doctor. He also seemed to use it as an opportunity to underscore his contention that Mary needed her mother at home. The monthly visits to Dr. K. for throat cultures became part of a larger pattern in the life of the family.
If Dr. K. continued to focus only on the sore throat, more fuel would have been added to the fire of Mr. and Mrs. Jackson’s disagreement and Mary’s resultant distress. By incorporating a family perspective, Dr. K. saw the larger picture and recognized how she fit into it. The next step was to call Mr. Jackson to understand more about his perspective and begin to sort out his differences with his wife.
When treatment falters, a change in our own behavior may help facilitate change throughout the system. In the case of the Jackson family, Dr. K.’s understanding of her role in the family dynamics helped move the couple toward resolving their differences. Left unadvised, Mary would likely come back with a series of escalating complaints.
Multiple vehicles exist to help clinicians attend to our own issues in patient care. These include regular discussion with trusted colleagues, con- sultation with behavioral health consultants, personal awareness groups, Balint groups that examine problematic clinician–patient encounters (27,
28), and readings about the emotional experience of facing illness, whether as a patient, a family member, or clinician (29).
Developing Skills for Family-Oriented Primary Care
Primary care physicians have a range of skills available to them in practic- ing family-oriented primary care, depending on the kind of family involve- ment the clinician thinks would be most useful. Doherty and Baird (30)
12 1. Basic Premises of Family-Oriented Primary Care
Table 1.1. Levels of family involvement for primary care clinicians
Level 1: Minimal Contact
Families are dealt with for practical or legal reasons. One-way communication prevails.
Level 2: Information and Collaboration
Communicate information clearly to patients and families. Elicit questions and areas of concern, and generate mutually agreed-upon action plans.
Level 3: Feelings and Support
Demonstrate empathic listening and elicit expressions of feelings and concerns from patients and families. Normalize feelings and emotional reactions to illness.
Level 4: Primary Care Family Assessment/Counseling*
Assess the relationship between the illness problem and the family dynamics. If the problem is not complex or long-standing, work with the family to achieve change. If the problem is entrenched or family counseling is not effective, make a referral and educate the family and therapist about what to expect. Continue to collaborate.
Level 5: Medical Family Therapy
Medical family therapy is intensive specialty care delivered by professionals with advanced psychotherapy training. Primary care clinicians should collaborate closely on those patients with whom they have active involvement.
* See Chapter 25 for a discussion of Levels 4 and 5. Source: Doherty WJ, Baird MA. Developmental levels of family-centered medical care. Family Medicine 1986;18:153–156. Adapted with permission.
describe five levels of physician involvement with families (see Table 1.1). At Level 1, the family is included only when necessary for practical and medical/legal reasons. At Level 2, the clinician is primarily biomedically focused and communicates regularly with the family about medical issues. The clinician functioning at Level 3 both gathers information and also addresses family stress and feelings by actively eliciting family feelings in a supportive way. At Level 4, the clinician gathers information and deals with family affect, and intervenes in ways that may alter the family’s interac- tional patterns. The clinician at this level has an understanding of family systems theory and a grasp of the skills to counsel the families to make con- structive changes that increase agency for family members and communion for the family as a whole. Level 5 is family therapy, which addresses more deeply rooted family patterns of dysfunction. Most clinicians will refer fam- ilies who need this level of intervention to trained family therapists. (Some physicians and nurse practitioners themselves obtain postresidency train- ing and supervision in family therapy.)
This book focuses primarily on developing skills at Levels 2–4. We will mention the importance of Level 2 (i.e., basic communication with the family). We will encourage physicians and nurses to use the skills involved at Level 3 when it is important to elicit family feelings and deal with them in a supportive manner. Many clinicians already operate at Levels 2 and 3. The goal of this book is to increase skills and comfort with Level 4 (i.e., to
References 13
assess family interaction, utilize family resources, and, when necessary, engage the family in primary care counseling in order to treat illness in the most effective, efficient way).
Given the basic premises just described, our goal is to help clinicians develop the skills necessary to implement family-oriented primary care. We believe family-oriented primary care provides better, more comprehensive care for routine patients, and more effective care for patients with such chal- lenging problems as somatizing, domestic violence, and chronic illness. Once family-oriented primary care skills are learned, it does not take more time than traditional care. In fact, it may save time because the clinician gains a comprehensive view of the problem early, and the patient and family par- ticipate in negotiating and delivering the treatment. Finally, family-oriented primary care involves partnerships among care providers, and between pro- fessionals and the patient and family. As such, it is a more interesting, less stressful, and more satisfying way for the clinician to deliver primary care.
