The Family Illness Trajectory INTRODUCTION
The natural history of an illness episode or the normal course of the psychosocial aspects of sickness for the patient and family Knowledge of trajectory allows the physician to predict, anticipate , and deal with a family’s response to illness Knowledge of trajectory allows the physician to predict, anticipate , and deal with a family’s response to illness
STAGE I: ONSET OF ILLNESS TO DIAGNOSIS
The stage experienced prior to contact with medical care providers. Medical beliefs and previous experiences provide influence to meaning of illness Nature of onset may play an important role on impact of illness on a family Nature of Nature of Characteristic Impact on
Illness
Onset
Acute/Rapi d illness/acci dent
Rapid, clear onset
Chronic especially debilitating
Gradual onset
of Experience • Provide little time for physical and psychologi cal adjustment • Short period between onset, diagnosis and managemen t thereby leaving little time to remain in state of uncertainty • Suffer from state of uncertainty over meaning and symptom
Family • Caught up in suddenness • Deal with immediate decision • Often with little support from within and outside the family unit • If less threatening, may be dramatic but less crisis oriented problem for the family • Vague apprehensio n and anxiety • Fearful fantasies over denial of seriousnes s of symptoms and possible implication
Responsibility of the physician Explore routinely the explanatory model and fear that patients bring to the clinical set-up Explore several aspects of pre-diagnostic phase of patient and families
STAGE II: REACTION TO DIAGNOSIS: IMPACT PHASE
The physician who presents the diagnosis is responsible for making a clinical judgment about the amount of information the patient can absorb. 2 plane or areas by which family and patient react and adjust: Emotional Plane Cognitive Plane During onset of illness, PHASE I- initially there is tension and initially there is denial, confusion with probable lack of disbelief and anxiety: capacity for problem solving: threat protest diffuse directly sets in motion tension reduction over unfairness mechanism (minutes to hours) This is followed by PHASE II- repeated failure in deriving emotional upheaval the diagnosis may lead to characterized by strong exacerbation of tension and emotions such as increase distress *resort to prayers anxiety, anger and *still earn capacity to problem solve depression: depends on disrupted roles and channels (period of weeks) The last phase is accommodation during which the patient and the family learn to accommodate and accept the diagnosis: this is very important for the implementation of therapeutic plans
PHASE III- increasing assessment and receptivity of family to new approach for relief of distress *some go doctor shopping *some are willing and capable for active participation *time for real opportunity for the physician and other health workers to assist family in realigning roles and expectations, learn new skills and make adjustment *willing to accept responsibility PHASE IV- eventual acceptance of diagnosis will enable them to mobilize resources and recognize the family *quality of family reorganization *if there is no movement towards this phase, family will be inefficient in achieving healthy adaptation to the crisis and reorganize at more dysfunctional level
Responsibilities of the physician: Anticipate number of problems and help families to cope and adapt more through family conference, discussion with parents, etc. Specifically: o Encourage to elucidate clearly to each other the nature of the Illness: Maintains oppenness, Allows sharing and support o Non-sharing and silence: Limit openness and spontaneity, Isolation and Abandonment The physician should know that feeling of guilt is a natural response to stress of grief and loss Assess the likely effect of the illness on the family, predict problems likely to arise; develop plans for realistically coping with them; and assess the family capabilities to deal with such stress The physician should briefly help the family understand some of the problems as well as benefits to be expected from family and friends who offer support Offer alternative interpretation of proposed therapeutic-bolster family’s denial and inability to accept reality
STAGE III: MAJOR THERAPEUTIC EFFORTS
The physician should deal with multiple variables, works in harmony of the wishes of the patient and family and coordinates all aspects of therapy which involve specialist and others Critical issues in choosing therapeutic plan: Psychological state and preparedness of the patient and family: belief system and trust, not emotionally equipped Assumption of responsibility for care very early in the treatment plan Economy of therapeutic plan Lifestyle and cultural characteristics of a family are important in choosing a therapeutic plan Effects of hospitalization, surgery and other major therapeutic method are emotionally stressful for the patient’s family Responsibilities of the physician: Remain open to the family, indicate that they will not be abandoned, provide them information Deal with multiple variables; consider all factors in planning, then work in harmony with patient and family Coordinate all aspects of therapy Anticipate pathologic response
STAGE IV: EATLY ADJUSMENT TO OUTCOMES-RECOVERY
Experience of recovery or adjustment to the illness outcome is an important phase for patients and families. It varies according to the type of outcome anticipated: Simplest outcome: return to full health Partial recovery followed by a period of waiting to learn if disease will return or fear of death because of long period of waiting Recovery is quite different if it requires acceptance of a known permanent disability Responsibilities of the physician: Deal with immediate effects of trauma Alleviate anxiety and assure adequate rest Psychological support can be given through understanding and repeated reassurance Explore level of understanding of patient and family.
STAGE V: ADJUSTMENT TO THE PERMANENCY OF THE OUTCOME
This point to the family’s adjustment to crisis The second crisis occurs as family realizes that they must accept and adjust to a permanent disability. The whole family must begin and give hope for the patient’s full return to health. The family physician should be aware that the continued unwillingness to incorporate that reality of the permanency of the loss may be sign of pathology For acute illness: There is potential for crisis especially when family routines are suspended. Emotions are high and can lead to anger especially if the family perceives that the care given by the doctor is not satisfactory. Because of suddenness of illness, family may find it difficult to face the stress What the family physician can do is to facilitate healthy response or Acceptance of diagnosis and recognize danger signals such as delayed or prolonged reaction For chronic Illness: Because of prolonged fear and anxiety there is higher incidence of illness in other members of the family. If the chronic
burden brings about additional burden and sometimes feeling of guilt especially if the sick member was previously neglected then as a result of this feeling the family becomes over-indulgent toward the sick and this will later result into feeling of overwork. Thus anger and resentment toward sick member sets in leading back to feeling of guilt later What the physician can do is to encourage ventilation of feelings, give reassurance and reinforcement for care For Terminal Illness: This is highly emotional and potentially devastating. The moment of diagnosis of a major debilitating or terminal disease is often remembered by patient in their families as the single most difficult time of the entire illness experience. A reaction to shattering diagnosis, the patient and his family anticipate grief reaction. If the family is functional, members will be drawn close together to provide care and support to the patient and to each other. If the family is dysfunctional, it can be the seed for future family discord and breakdown The physician can: 1. Assist the patient and the family in relating to health care system. 2. Aid the patient and the family in efficient and functional readjustment. 3. Provide quality care. Home care is the best and most accepted and the least demanding, thus it should be facilitated. Family Reaction to Death In after prolonged severe illness and adaptation and reaction are already accomplished. Death comes swiftly and MD to assist family to cope: Stage of denial: few days to few weeks. If prolonged- premorbid pattern of abnormal behavior Anger Depression Bargaining Acceptance
