Chronic Illness and the Family

Susie Gerik, MD

Mary Short, PhDChildren’s Center for Restorative Care

UTMB Children’s Hospital

March 27, 1995 To Whom It May Concern: My son, Brandon, is my only son. I am reaching out for any help. I have heard a lot about your hospital. I feel if you read all of his reports, you will admit my son, and you will help. I would like also to get Dr. Cook, a Neurologist, to assist in this situation. My son went to Galveston at the age of 4. He was found to be moderately mentally retarded. He did not talk. He did not crawl. But, everything else was done on time. At the age of six, he could talk. And, as time went on, he hardly ever shut up. And we were happy. My son was not smart in books. He had and still has a fantastic memory. He is very smart in his own way. He used to could do things on the Apple Computers, drove a truck on the back roads, roller skated, played Nintendo and Atari… He could do just about anything. At 12, he started stumbling. By the age of 15, his voice or rather his speech and his walk went. Now that really hurt. I love talking with my son. He could always tell me he loves me. And, he goes everywhere with us. Even our anniversaries and vacations are planned for him. But, it is getting so hard now. They have no diagnosis. Only that Brandon has a neurodegenerative disorder. Now at 18, he is having uncontrollable seizures. And instead of seizures in one spot, he is having them all over. He has a tube in his belly. He sweats and runs fever a lot. He can’t even shake his head to tell me he loves me. He can’t kiss me or hold me tight. And also, he looks at me for help. I can’t help him. … Please help me to help my son. He is all I have. He is our little precious. Thanks,Linda Mayeaux

Present Condition Unable to walk Severe spasticity with frequent painful

dystonic posturing Gastrostomy feedings Attends undergarments Periodically requires bladder catheterization Requires fleets enemas every 3 days Only utterances are moans during posturing

Family Situation Parents married for 24 years Very loving and attentive Sleep in Brandon’s room every night Parents never date Large extended family participates Home health visits daily Conflict in the family regarding seeking

treatments

Medical Evaluations 14 medical evaluations In Texas, Louisiana, and Michigan Multiple diagnostic procedures

Medication Regimen 0730 Artane, Depakene, Tetrabenzene 0900 Zantac 1230 Artane, Depakene, Tetrabenzene 1730 Zantac, Depakene, Tetrabenzine 2100 Klonipin, Artane, Melatonin, Chloral

hydrate 2200 Depakene, Bactrim

Medical Costs Clinic visit $567 Hospital admission $45,323 Blood tests $30-321 Large Attends brief $16.71 Kinair bed $128/day Ensure 8 oz $4 MRI $1080

Questions to Ponder How do you think Brandon feels about

his situation? What do you think his wishes are?

Questions to Ponder How much do his mother’s feeling

about him “count” in the process of medical decision making?

What if Brandon’s parents were not available to care for him?

Questions to Ponder What can we do as health care

providers to make the situation “easier” for Brandon? for his parents?

What is our job as healers?

Increasing Prevalence and Incidence

Increase in total population Decrease in mortality Shortened hospitalizations and more

home care

How Many Children? 31% of children have one or more

chronic physical condition at some time during their youth

20% of children have developmental delays, behavioral and emotional problems, and/or learning disabilities

6% of children have a severe chronic illness

Episodes are complex and complicated, but majority of families cope with the situation at least in a satisfactory manner.

During protracted illness, most families have periods of instability

In long, protracted illnesses, even best-adjusted families can become overwhelmed and need help.

Family system is a sensitive structure. A change in one member affects all of the other members as well as the family as a unit.

There are many “right” ways of doing things.

The caregiving responsibility within the family is often delegated mainly to one person. That person must receive adequate emotional and practical support or he/she will likely become a “hidden patient.”

The Chronic Illness Model

Patient

Illness

Environment

Environment

Family Caregiving System

Medical Care System Environment

Environment

Resultant Adjustment

The Chronic Illness CycleSymptomatic: Pre-diagnosis

Diagnosis

Initial Treatment

Post-treatment Adjustment

Chronic Maintenance

Acute Exacerbations

Repeat Crisis or Emergency

Slow Deterioration

Pre-terminal Recognition

Terminal/Death

Mourning – Adjustment to Loss

Family Tasks Understanding disease Help with medical, nursing, nutritional needs

of the patient Help work with the patient’s physical needs Support the patient and family emotionally Utilize community resources appropriately Keeping communication open with medical

team

Crisis Phase Tasks Support the patient emotionally Adapt to hospital environment Develop good communication Maintain home and family Work through feelings of guilt and

blame

Chronic Phase Tasks Develop a routine for the patient Support the main caregiver emotionally Maintain as much independence as possible Learn to prevent complications Cope with “mood swings” Maintain good communication with medical

team Adjust to having “outsiders” come into the

house Maintain family rituals, traditions

Pre-terminal Phase Tasks Discuss final arrangements Prepare emotionally for the death Discuss details around death Maintain relationship with medical

team

Medical Team Tasks Keep family updated Refer to appropriate specialist and

community resources Ensure timely availability

Medical Team Tasks Include patient in discussions if

possible Encourage independence Encourage participation Ensure safety and suitability of home

Medical Team Tasks Ensure the main caregiver is included

as integral member of the team Encourage main caregiver;

acknowledge his/her efforts Discuss main caregiver’s relationship

with the patient Watch for signs of excessive stress Encourage respite intervals

Medical Team Tasks Hold periodic family conferences Encourage family support Encourage voicing of opinions Encourage continuation of family life Encourage use of respite care and

community services

Members of the Interdisciplinary Team

Physicians Nurse Practitioners Nurses Dietitians Physical therapists Occupational

therapists

Speech therapists Psychologists Social Workers School teachers Chaplains Secretaries

Individuals with Disabilities Education Act (IDEA)

Infants and Toddlers with Disabilities - birth to 3 years

Assistance for Education of All Children with Disabilities - 3 years to school age

Eligibility defined by the state

What do Children and Families Receive through IDEA?

Multidisciplinary evaluation Individualized programs Education for child, services for family Plans written into individualized plans

Parents’ Experience Evolving experience Central theme: Facing adversity

Defining Adversity Characteristics of child’s condition Family view of child’s condition Living with loss Gaining strength Magnitude of impact

Managing Adversity Seeking information Planning/preparing Negotiating Utilizing resources

Facing Adversity Normalization Loss (chronic sorrow)

Psychological Stages Death and Dying - Kubler-Ross Grief Theory - Duncan

Shock and Denial Denial IS productive

Bargaining “If I work hard, my child will get well.”

Anger Variety of forms Variety of targets Does not always go away Quality listening is in order

Depression Feelings of guilt and inadequacy Feelings of hopelessness and

helplessness

Acceptance Maybe really “COPING” Probabilities v. Possibilities

The most essential part of a student's instruction is obtained...not in the lecture-room, but at the bedside. Nothing seen there is lost; the rhythms of disease are learned by frequent repetition; its unforeseen occurrences stamp themselves indelibly in the memory. – Oliver Wendell Holmes, M.D.