impact of illness
TRANSCRIPT
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Impact of Illness Impact of Illness
on the Familyon the Family
Mek Villafuerte-Solana, MD, DPAFPFCH I
Sept. 15, 2009
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Objectives of the Objectives of the SessionSession
Differentiate between disease and illness Determine reasons why impact of illness
on a family should be studied Learn the stages of the family illness
trajectory and the responsibilities of the physician in each stage
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Why study impact of Why study impact of illness?illness?
Sickness of a patient causes suffering and severe disruption for the patient’s family
Illness sets in motion processes that are disruptive and hazardous to health of family members
Role reversal, income loss Prolonged and complicated illnesses result
in structural change within the family system to a point that leads to different roles and functions
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Problems Contributing to Problems Contributing to the Disease Processthe Disease Process
Poverty Unemployment Other sickness in
the family Chronic family dispute Poor nutritional habit Inadequate housing
condition
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Disease vs IllnessDisease vs Illness
Disease Primary biologic
psychophysiologic disorder
Laboratory values
Illness Includes the
sufferer’s experience of the disease
Deeply embedded in the social, cultural, & family context of the person who is ill
Meaning of illness to the patient and his family
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How is investigation How is investigation done?done?
Explore the patient’s explanatory models
Explore for patient’s understanding of the following issues:› Etiology› Pathophysiology› Trajectory and outcome of his illness› Appropriate treatment
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The Family Illness The Family Illness Trajectory-Passage Thru Trajectory-Passage Thru SufferingsSufferings
Natural course of the psychosocial aspects of disease
Knowledge of the trajectory allows the physician to predict, anticipate, and deal with a family’s response to illness
Indicates normal and pathologic responses thus enabling physicians to formulate special therapeutic plans
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Major Illnesses Involves Major Illnesses Involves Loss of the FollowingLoss of the Following
Body parts Ability to carry out normal and treasured
activities Sense of self-esteem Dreams and plans for the future Sense of invulnerability of one’s self and in
love ones that keep existential fears of impending death and separation at bay
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Stages in Family Illness Stages in Family Illness TrajectoryTrajectory
Stage I Onset of Illness to Diagnosis
Stage II Impact Phase-Reaction to Diagnosis
Stage III Major Therapeutic Efforts
Stage IV
Recovery Phase- Early Adjustment to Outcome
Stage V Adjustment to the Permanency of the Outcome
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Stage IStage IONSET OF ONSET OF ILLNESSILLNESS
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Stage I- ONSET OF Stage I- ONSET OF ILLNESSILLNESS
Warning sign of malaise which initiates preliminary stage of the illness trajectory
Stage experienced prior to contact with medical care providers
Nature of illness may play an important role on impact of illness
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Case # 1Case # 1
Roberto, 32, father of 3 small children, applied as a seaman 1 year ago. After 6 months of being away from his family, he died of fatal arrhythmia while aboard his ship.
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Case # 1Case # 1
Nature of illness Nature of onset Characteristics of
experience
Impact on family
Acute, rapid Rapid, clear onset Provide little time
for physical/psychological adjustments
Caught up in suddenness
Immediate decision
Little support w/in and outside family
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Case # 2Case # 2
Nilo, 26, father of 2, sole provider, worked as a messenger for 2 years. He encountered a motorcycle accident 1 year ago which left half of his body, from the waist down, paralyzed. His wife accepts laundry work from neighbors in order to feed their family and take care of Nilo’s needs and medications.
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Case # 2Case # 2 Nature of illness Nature of onset Characteristics of
experience
Impact on family
Chronic, debilitating
Gradual onset Suffer from state
of uncertainty over meaning and symptom
Vague apprehension and anxiety
Fear, denial of seriousness of symptoms and possible implications
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What will your What will your responsibilities as a responsibilities as a physician be?physician be?
Explore fear that the patients/ family bring up in the clinic
With inappropriate label of illness, acknowledge and explore conflicts the patient and family may be experiencing
Explore aspects of pre-diagnostic phase of patients and families
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Stage IIStage IIREACTION TO REACTION TO DIAGNOSIS: DIAGNOSIS: IMPACT PHASEIMPACT PHASE
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2 PLANES OR AREAS BY 2 PLANES OR AREAS BY WHICH A PATIENT/FAMILY WHICH A PATIENT/FAMILY REACT AND ADJUSTREACT AND ADJUST
EMOTIONAL PLANE Denial, disbelief, anxiety (min to hrs) Emotional upheaval such as anger,
anxiety and depression (wks) Accommodation and acceptance
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2 PLANES OR AREAS BY 2 PLANES OR AREAS BY WHICH A PATIENT/FAMILY WHICH A PATIENT/FAMILY REACT AND ADJUSTREACT AND ADJUST
COGNITIVE PLANE
Phase 1: Tension and confusion, lack of capacity for problem solving
Phase 2: Repeated failure in deriving the diagnosis leading to increased distress
Phase 3: Receptivity of family to new approach for relief of distress
Phase 4: Eventual acceptance of diagnosis
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Case # 3Case # 3Mae, 21, with a 18 month old old child,
was diagnosed with Lymphoma 6 months ago. Due to lack of funds, her mother, who is also the caregiver, has tried several faith healers and other therapeutic modalities to comfort Mae’s symptoms.
When asked about Mae’s family history of cancer, her mother said that her husband, Mae’s father, died of liver CA in the hospital where Mae was diagnosed with Lymphoma. She expressed her fears regarding the management and the appropriateness of care in the hospital.
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Case # 3Case # 3Mae continued to have anorexia
and vomiting, back pain, cough, and difficulty of breathing.
Also, she has been depressed for the last three months because aside from her illness, her husband was rumored to be having another girl, limiting his time in caring for Mae.
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Emotional plane where the patient is now
Phase in the cognitive plane where the patient is now
Anxiety and depression
Phase 2 to 3Failure to derive
the diagnosisTrial of different
approaches to relieve stress
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Responsibilities of the Responsibilities of the PhysicianPhysician
Anticipate problems and help family cope and adapt through family meetings/ discussion
Make clear about the nature of illness by helping the family maintain openness that allows sharing and support
Know that the feeling of guilt is a natural response to stress of grief and loss, anticipate such feelings, and make realistic goals to correct the feeling
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Responsibilities of the Responsibilities of the PhysicianPhysician
Help the family assess the likely effect of the illness on the family
Assess the capability of the family to cope with stress
Offer alternative interpretation of proposed therapeutics
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Describe disease and treatment according to patient’s level of comprehension and understanding
Make a clinical judgment about the amount of information to give and be absorbed by the patient
Give small doses of information over time If diagnosis is confusing or stressful
› Provide support and continuity of care› Interpret findings› Offer advise and encouragement
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Stage IIIStage IIIMAJOR MAJOR THERAPEUTIC THERAPEUTIC EFFORTSEFFORTS
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Stage III- Major Stage III- Major Therapeutic EffortsTherapeutic Efforts
Represents one of the most challenging and rewarding part of medical practice
Physician should deal with multiple variables› work in harmony with the wishes of the
patient and family› Coordinate all aspect of the therapy
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Therapeutic TriangleTherapeutic Triangle
Family
Physician PatientDoherty & Baird
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WORKING WITH FAMILIESWORKING WITH FAMILIES
METHODS:
Family-oriented approach with individual patientInvolving family members in routine office visitsFamily conference/ meeting
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Involving Family Involving Family Members in Routine Members in Routine Office Visits Office Visits
One or more family members are present Common medical Situation: Well-child and
prenatal care, diagnosis of a chronic illness
Length of visit: 15-20 min How scheduled: Request family member
attendance Family Interviewing
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Involving Family Members Involving Family Members in Routine Office Visitsin Routine Office Visits
DO’s Greet each family
member Acknowledge any
emotions expressed Encourage family
members to be specific
Maintain an empathic and non critical stance with each person
DON’Ts Don’t let any one
person monopolize the conversation
Don’t allow family members to speak for each other
Don’t offer interpretations early in the interview
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Involving Family Members Involving Family Members in Routine Office Visitsin Routine Office Visits
DO’s Emphasize
individual and family strengths
Block persistent interruptions
DON’Ts Don’t breach
patient confidentiality
Don’t take sides in a family conflict
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Family ConferencesFamily Conferences
A specially arranged meeting requested by the physician, patient or family to discuss the patient’s health problem in more depth than can be addressed during a routine office visit
Medical Situation: Terminal Illness
Institutionalization Length of visit: 30-40min
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Phases of Family Phases of Family ConferencesConferences
Joining Phase- develop rapport with family› create a sense of trust
Goal Setting- why the family has been convened
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Phases of Family Phases of Family ConferencesConferences
Information Exchange- Ask what the family knows about the patient’s illness; Educate family about the illness
Establishing a Plan- develop a mutually agreed upon treatment plan and clarify each person’s role in carrying it out
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CRITICAL ISSUES IN CRITICAL ISSUES IN CHOOSING CHOOSING THE THERAPEUTIC PLANTHE THERAPEUTIC PLAN Psychological state and preparedness of
the patient and family Assume responsibility of care very early in
the treatment plan. Define roles Economic status
› Economic impact of illnessa. Emotional traumab. Social dislocationc. Economic catastrophe
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CRITICAL ISSUES IN CRITICAL ISSUES IN CHOOSING CHOOSING THE THERAPEUTIC PLANTHE THERAPEUTIC PLAN
Lifestyle and cultural characteristics of the family
Effects of hospitalization, surgery, and other therapeutic methods are emotionally stressful to the family
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CRITICAL ISSUES IN CRITICAL ISSUES IN CHOOSING CHOOSING THE THERAPEUTIC PLANTHE THERAPEUTIC PLAN Hospitalization gives rise to stressful logistic
problems› Father- special economic burden› Mother- greatest impact on other family members;
high risk of family dysfunction› Children- syndrome of emotional problems;
hostility, abandonment› Parents- helpless, guilt, frustrated, or hurt› Geriatric- vulnerable to fears of death, rejection,
abandonment; loneliness and helplessness
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RESPONSIBILITIES OF THE RESPONSIBILITIES OF THE PHYSICIANPHYSICIAN
Remain open and work in harmony with the patient and his family
Deal with multiple variables; consider all factors when planning
Coordinate all aspects of therapy Anticipate pathologic responses and
be able to deal with them
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Case # 4Case # 456/M, married with 3 children, came in
due to cough for 1 month.CXR: Cavitary lesion at right apexDiagnosis: Pulmonary TuberculosisTx: 2 months HRZE, 4 months HR
How will you tell this patient that he has PTB and convince him to take his medications?
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Stage IVStage IVEARLY ADJUSTMENT EARLY ADJUSTMENT TO OUTCOMES-TO OUTCOMES-RECOVERYRECOVERY
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Stage IV-Early Adjustment Stage IV-Early Adjustment to Outcomes-Recoveryto Outcomes-Recovery
Return from the hospital or major therapy Gradual movement from the role of being
sick to some form of recovery or adaptation
Adjustment of relation within the family
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Types of OutcomesTypes of Outcomes Return to full health
› Gains from illness experience› Patient allowed to take over abandoned
obligation Partial recovery
› Followed by a period of waiting to see if illness will return
› Fear of death› Constant sense of vulnerability
Permanent disability
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RESPONSIBILITIES OF THE RESPONSIBILITIES OF THE PHYSICIANPHYSICIAN
Deal with immediate effects of trauma
Alleviate anxiety and assure adequate rest
Psychological support Explore level of understanding of
patient and family
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Stage VStage VADJUSTMENT TO ADJUSTMENT TO THE PERMANENCY THE PERMANENCY OF THE OUTCOMEOF THE OUTCOME
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Stage V- Adjustment to Stage V- Adjustment to the Permanency of the the Permanency of the OutcomeOutcome
Family’s adjustment to crisis Second crisis occurs as family realizes
that they must accept and adjust to a permanent disability
FOR ACUTE ILLNESS: Potential for crisis when routines are suspended› Physician can facilitate acceptance of
diagnosis
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Stage V- Adjustment to Stage V- Adjustment to the Permanency of the the Permanency of the OutcomeOutcome FOR CHRONIC ILLNESS: Prolonged
fear and anxiety leads to higher incidence of illness in other members of the family› Feeling of guilt brings about anger and
resentment› Physician should encourage ventilation of
feelings, give reassurance and reinforcement of care
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Stage V- Adjustment to Stage V- Adjustment to the Permanency of the the Permanency of the OutcomeOutcome FOR TERMINAL ILLNESS: Highly
emotional and potentially devastating› Single most difficult time of the entire illness
experience› If family is functional: members are drawn
close together› If family is dysfunctional: seed for future
family discord and breakdown› Physician should provide quality home care
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Questions?Questions?
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Group activityGroup activity
Form groups of 5 members each Discuss a given case and answer
the questions that follows Submit answers at the end of the
session
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Case# 5Case# 549/M, married with 4 children, works as a
seaman. He was supposed to board back to his ship when his agency did not allow him him due to high blood sugar
FBS: 235mg/dlHistory:polyuria, polydipsia, polyphagiaFamily History of DM
How will you present your diagnosis, and educate the patient about the disease?
How will you present your management and convince the patient to adhere to the prescribed medicines?