Avoiding Hospital Horrors

The author's PWA son, Gio when he was hospitalized back in 2006. Above, a couple of individuals have to hold him back as the nurse checks him. Right, he had to be restrained with fabric strips to his bed

MANILA, Philippines -- A 27-year old male with autism underwent a simple appendectomy. The mother alleged that hospital doctors and personnel ignored her repeated request for assistance to address the behavioral and medical needs of the patient. The family is now contemplating on suing the hospital and its personnel for alleged negligence that resulted in the death of the patient.

Pinky Cuaycong, blogger and mom to PWA (person with autism) Alfonse, laments: “There is simply no help for people with severe disabilities and the existing laws carry no real weight.” After Alfonse was hospitalized for dengue late last year, he was in and out of hospital for psychiatric issues involving self-injurious behavior, violence, and aggressions.

Pinky journals her frustrations on the government’s lack of implementation of the RA 9442, specifically pointing out the non-compliance of drug stores in giving the 20 percent discount on medicines, diagnostic and laboratory fees, and professional fees of attending doctors in all private hospitals and medical facilities.

Anticipating and managing crisis are not new to families of children with autism (CWA). But a well-informed team of medical practitioners and caregivers can help families facilitate health care for their CWA.

Developmental pediatrician Tippy Tanchanco reminds parents must differentiate emergency confinements from non-emergent ones. “For emergency consults, immediate attention and medical care is necessary. For non-urgent consults, the family and therapist will have enough time to prepare the CWA for the hospital admission. Examples of this would be the performance of a diagnostic test like an MRI or EEG,” said Dr Tanchanco.

Autism Society Philippines board secretary Tiffany Tan is our Angel Talker this week. Tiffany is also the “wind beneath the wings” of ASP’s award-winning blogspot and mother of JR, proudly with autism.

Managing the CWA during emergencies:

1. Have important telephone numbers or emergency numbers handy.

Five-year old JR was propped in front of the TV to watch cartoons with his two-year-old sister, while their mom was on the phone in the same room. Mom discovered later that JR had been sucking on a balloon for the last five minutes. This behavior was never manifested by the CWA before, as the balloons were recently given by a family friend.

Prepare a contact list of professionals who cater to your child’s needs. Get the numbers of the nearest hospitals.

2. Inform primary health care provider about emergency.

JR’s mom immediately called her toxicologist friend to inform him of the incident. Doctor advised mom to bring patient to the emergency room.

A short telephone conversation with the health care provider prior to the arrival in hospital can make a significant difference.

3. Call to alert them that a patient with autism is entering the facility and request for additional assistance.

JR’s mom called hospital staff and requested ER personnel for JR to be restrained in order to administer needed intervention. This was also coordinated with the resident toxicologist friend.

The ER personnel (about five staff of doctors and nurses) had a short discussion on how to handle JR. After briefly explaining the scenario on what to expect, a long blanket was covered around the child to prevent his arms from pulling out medical instruments. The doctor was able to administer topical anesthetic to his throat, and the toxicologist inserted an instrument to remove the lead and later administer medication, while other personnel and family members help to restrain the fidgeting patient. Informing the emergency room or hospital that a patient with autism needs assistance will help them anticipate and provide for the care needed.

4. Provide care and aftercare

JR was visibly traumatized during the incident — as he was kicking and screaming at the ER staff. However, since the hospital staff remained focused doing the medical procedure, the task in calming the child was addressed by the family.

Although JR was left a little shaken after the incident, he was later pacified by the mother, the ER staff and attending physician by distracting him with toys. Later doctor gives clearance for patient to leave facility.

Hospital confinement or surgery and the PWA

1. Be prepared and ask questions

Ask your doctors for information you need about what will take place. Discuss any concerns you have in advance with your surgeon/doctor or anesthesiologist.

2. Prepare your CWA for surgery.

He lp y our CWA ge t through his surgery and recovery period faster. Provide information at your child's level of understanding. Use books or pictures of children in hospital. Show hospital room, bed, pictures of doctor/nurses and other facilities. You can call your doctor to arrange a pre-operative tour and give a short orientation program for your CWA to help remove some of his fears.

3. Surgery day

Make sure you bring your CWA’s favorite toy, book or maybe even his beddings to simulate the room he uses to sleep. Something familiar will help him settle down to a strange place. Some parents book the hospital room one day in advance to help simulate what to expect.

4. Dealing Wwith aggression and other challenging behaviors

Tantrums, aggressions, self-injurious behaviors may be exhibited by children with autism. These may include slapping, pulling of hair, biting self or others, pinching, or punching, or destruction of property.

An open discussion between the child’s therapist/caregiver and parents with the hospital personnel and writing down protocols to follow might help. A special nurse can be provided by the family or a familiar therapist can serve as team support when the need arises. Do not rely solely on the hospital staff for intervention.

5. Special arrangements

Parents are usually not allowed to stay in the operating room during surgery; but are allowed to stay with the child in the recovery room. There are some hospitals that allow parents to stay with their child until the child is sedated and ready to be wheeled into the operating room. Specials arrangements with the anaesthesiologist and the attending physician need to be done ahead of time.

Parents may also seek help from the Persons with Disability Office or Department of Social Welfare and Development for assistance. A social worker or government representative may offer assistance to patients whose parents are not yet so knowledgeable in handling PWAs.

6. Claiming PWD discount

To help facilitate in claiming discounts on your child’s medical needs, make sure your child has already applied for his PWD ID Card. Discounts on medicines, auxiliary aids and medical services specified by his attending physician should come with a prescription.

All in patient/out-patient laboratories and diagnostic services shall be granted 20 percent discount provided that such diagnosis and/or treatment by the attending physician shall be in accordance with clinical practice guidelines or hospital treatment protocols.

For more information, visit the website www.doh.gov.ph and read the Department of Health’s Administrative Order 2009-0011 or the Guidelines to Implement the Provisions of Republic Act 9442 for the provision of medical and related discounts and special privileges

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12:22 PM Mar 21st via web