Burn Discharge in a “Perfect” World: A Goal for the Burn Care Community
By Lynn D. Solem, MD
In a “perfect” world, we would not have a need for burn support groups, burn rehabilitation, The Phoenix Society, SOAR, burn psychologists, or burn reconstruction. The burn survivor would leave the hospital with perfect grafts, full range of motion of every joint, an appearance restored to the original, and only pleasant memories of the injury and its treatment.
However, we live in an imperfect world and plastic surgery as depicted in Hollywood does not exist, so we need to continue striving for the most perfect burn recovery imaginable. We, the burn team, need to continuously ask ourselves, “How can we improve societal reintegration for our patients?” In order to improve our patients’ experiences as they move from inpatient to outpatient to rehabilitation and back to work and play, we need to be able to read the signs that tell us our patients need assistance.
In the perfect world, stress disorders would be identified as soon as they occur, or better yet, before they occur. Their fears and nightmares would be identified, treated, and gone in days, not the weeks, months, and years that now go by before we make the diagnosis and suggest treatment. Acute stress disorders would be identified early and treated; posttraumatic stress disorders would no longer exist.
Itch is an incredible problem that we as professionals do not recognize early and do not treat well; nor do we warn burn survivors that it will occur, and, in some cases, may never resolve. We need research into burn itch that identifies time of onset, efficacious treatments, and new alternatives. In our “perfect” world, we would educate patients about the possibilities of itch, begin treatment early, and offer multiple alternatives to the present dismal array of antihistamines and lotions.
Work and school re-entry are difficult events for the burn survivor. In a perfect world, every child and adult would be accompanied by a fellow burn survivor and a burn professional to school or work on the first day they return. Fellow students, teachers, employers, and co-workers would all receive an introduction to burns and their sequelae. They would understand that the survivors’ “new” skin is not as tough as their “old” skin, that they may need to wear compression garments and splints, that they must apply lotion frequently, that they will have a lower tolerance for heat and cold, that they may have reduced strength and endurance that they may never regain and that concessions may need to be made for those changes, and that they may fear returning to the place of injury.
Perhaps, most importantly, those in the work or school community would understand that inside a burn survivor is still the same good person he or she was before injury. In a perfect world, the re-entry process would not be a one-time event; whenever a burn survivor experienced a new challenge, whether days, months, or years later, the burn team re-entry specialist and a burn survivor would be there to help, to re-educate, and to smooth the way.
Discharge planning in a perfect world would be flawless. Burn survivors would be completely knowledgeable about their burns. They would know what to expect from the moment they walked out the doors of the burn center until they were fully reintegrated into work or school. The patient and caregiver would be fully trained in cleaning wounds, changing dressings, and applying lotion. The caregiver would be familiar with all the techniques available to ease pain and itch; they would be as capable as your burn team in providing care.
Burn specialists would screen all patients for re-integration problems at discharge and at every follow-up clinic visit. When a problem was identified, a professional counselor, knowledgeable in burn care, would be available and appropriate interventions would be initiated immediately. The burn survivor would not have to endure waiting for weeks, and sometimes months, for a counselor, only to be seen by someone who has limited knowledge of burns.
Burn support groups would be available to everyone, regardless of how remote their home. Telecommunications of today make this a realizable goal. The Internet is omnipresent, audiovisual telecommunications (T-1 lines) are crisscrossing our country, and most communities now have the capability of face-to-face communications at great distances. In the perfect world, even those burn survivors in the most remote of communities would be able to participate in a support group.
Presently burn camps are aimed primarily at children. And while there are some innovative camping experiences that serve young adults or families, these opportunities are extremely limited. In a perfect world, camp experiences would be available to burn survivors of all ages, in locations worldwide, and would include “elder camps” for our senior citizen burn survivors (an age group that we have all ignored).
Sleep disorders are common for our burn survivors, both while hospitalized and after discharge. More research is needed to identify the causes and possible treatments of these problems.
In a perfect world, all patients in burn centers would be monitored for quality and quantity of sleep, and all sleep impairments, which occur acutely and after discharge, would be treated. In a perfect world, intimacy and sexuality would be fully addressed prior to hospital discharge. Both the patient and his or her partner would be educated on the most appropriate techniques of sexual contact during recovery. Pediatric burn survivors would receive age-appropriate sex education that addressed their specific situation. Most importantly, all survivors would know that they will be loved in the future and will be accepted as a sexual partner and that they have not lost their “sexual attractiveness.”
Staring would not occur in the perfect world. Everyone a burn survivor meets would have been educated about burns and burn scars. They would all be fully aware of what it means to have been treated for a burn. They would recognize burn survivors for what they are—attractive individuals with wants and needs just like theirs.
Someday burn scars will not exist, skin replacements will sweat normally, temperature control will be normalized, itch will be prevented, hair growth will be perfect, pain will be eliminated, and psychological stressors will not exist. However, that perfect world is far away.
The burn team must learn to address the burn survivor’s needs with the tools that are currently available. We need to inform our burn survivors of the challenges they will face and we need to better prepare them for discharge.
But we can’t just inform our patients of the problems they will experience after discharge; we need to help them adjust to their new world. Early identification and treatment of every challenge is essential to societal re-integration. The burn team has a lot of work to do as we strive to become the “perfect world” for burn survivors and we need to start immediately.
Dr. Lynn Solem is Director Emeritus of the Regions Hospital Burn Center in St. Paul, Minnesota, and is past president of the American Burn Association.
This story is an excerpt from The Phoenix Society’s® Burn Support News, Summer Edition 2004, Issue 2. Burn Support News is a quarterly publication that contains articles on the emotional, psychological, and social aspects of burn recovery. All Rights Reserved.