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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?