Impact of Illness on the Family

Mek Villafuerte-Solana, MD, DPAFP FCH I Sept. 15, 2009
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Objectives of the Session
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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 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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Why study impact of illness?

Problems Contributing to the Disease Process
Poverty  Unemployment  Other sickness in the family  Chronic family  dispute  Poor nutritional habit  Inadequate housing condition

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Disease vs Illness
Disease  Primary biologic psychophysiologi c 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 5

How is investigation 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 Trajectory-Passage Thru Sufferings
 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 Loss 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 Trajectory
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 I ONSET OF ILLNESS

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Stage I- ONSET OF ILLNESS
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 # 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 # 1

Nature of illness  Nature of onset  Characteristics of experience

  

Impact on family

  

Acute, rapid Rapid, clear onset Provide little time for physical/psycholog ical adjustments Caught up in suddenness Immediate decision Little support w/in and outside family 13

Case # 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 # 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 15

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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What will your responsibilities as a physician be?

Stage II REACTION TO DIAGNOSIS: IMPACT PHASE
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2 PLANES OR AREAS BY WHICH A PATIENT/FAMILY REACT 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 WHICH A PATIENT/FAMILY REACT 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 # 3
Mae, 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 # 3
Mae 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 in the cognitive plane where the patient is now

 Anxiety

and depression 2 to 3

 Phase

 Phase

Failure to derive the diagnosis Trial of different approaches to relieve stress
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Responsibilities of the Physician

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 Physician  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 III MAJOR THERAPEUTIC EFFORTS
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Stage III- Major Therapeutic 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 Triangle

Family

Physician
Doherty & Baird

Patient
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WORKING WITH FAMILIES
METHODS: Family-oriented approach with individual patient Involving family members in routine office visits Family conference/ meeting
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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 in Routine Office Visits

Involving Family Members in Routine Office Visits
DO’s
  

DON’Ts

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’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 in 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 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 Conferences
 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 Conferences
 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 CHOOSING THE 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 illness a. Emotional trauma b. Social dislocation c. Economic catastrophe
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CRITICAL ISSUES IN CHOOSING THE 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 CHOOSING THE 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 PHYSICIAN
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 # 4
56/M, married with 3 children, came in due to cough for 1 month. CXR: Cavitary lesion at right apex Diagnosis: Pulmonary Tuberculosis Tx: 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 IV EARLY ADJUSTMENT TO OUTCOMESRECOVERY
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Stage IV-Early Adjustment to 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 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 PHYSICIAN
 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 V ADJUSTMENT TO THE PERMANENCY OF THE OUTCOME
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Stage V- Adjustment to the Permanency of the Outcome
 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 the Permanency of the Outcome
 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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 FOR

Stage V- Adjustment to the Permanency of the Outcome

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?

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Group 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# 5
49/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/dl History:polyuria, polydipsia, polyphagia Family 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? 53

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