A Charter of Rights for Children, Parents and Families Seen and Cared for By Pediatric Gastroenterologists

Surveys of patients and family members indicate that provision of top quality medical care is but one factor in determining overall satisfaction with health services, both in the in-patient hospital environment and in the out-patient clinic setting. A host of non-medical issues can impact on patient and family views of the experience. Availability and cost of nearby parking, the friendliness of the initial contact person, and the physical environment of the health care facility likely each influence overall judgments about the nature of the subspecialty care provided by the individual pediatric gastroenterologist. Some of the determinants that influence patient and parent satisfaction may well be beyond the control of the individual practitioner, except to the extent that the physician has an influence on the operational activities of the health care facility in which one practices. On the other hand, there are a number of issues that might be considered by pediatric gastroenterologists in making the lives of their patients and families less difficult and thereby promote satisfaction with the delivery of subspecialty consultative care. One example of an initiative that might be welcomed by parents and at least some children and adolescents is the operation of clinics and endoscopic procedural units on evenings and weekends. With both parents working outside of the home in many family units and the increasing frequency of single parent families, such a change in practice is likely to be welcomed by a substantive proportion of our patients and their parents. Such an initiative has met with success and positive feedback when undertaken by our colleagues in family practice. Another initiative that might be welcomed by children, teenagers, and their families is the availability of open access follow-up care by the pediatric gastroenterologist. A recent randomized, controlled study in Britain of adult patients with chronic inflammatory bowel diseases showed that patients favored an open access approach to follow-up care by the consultant compared to the more traditional approach of arranging a routine booked appointment (Br Med J 2000; 320:544-548). The study showed that the quality of care provided was comparable using the two approaches. Moreover, the open access system was not more costly to the health care system and it was the approach preferred by the referring practitioner. Accordingly, it now would be of considerable interest to determine if a comparable approach can be extended to the pediatric gastroenterology setting in a cost effective and user friendly manner while ensuring that standards in the provision of subspecialty consultative health care are not compromised. A patient and family charter could also direct minimum standards of care. Disease-related agencies and other patient advocate groups might use such an approach to ensure the adequate delivery of health care services. For example, access to dieticians, nurse specialists, medical social workers, stomal therapists, clinical pharmacists, and educational pamphlets might be judged as a minimum standard of care for patients followed in a clinic focused on inflammatory bowel diseases (J Roy Soc Med 1993;86:271–2). Formal linkages with a disease-related agency also would be likely to enhance physician and allied health care professional responsiveness to the needs and concerns of patients and their families. Of course, the establishment of a patient and family charter would not be without costs. Non-medical input into the delivery of health care is not always welcomed. The economic costs of increased access to medical care may be too great. The ability to offer evening and weekend endoscopy sessions and out-patient clinics is dependent on the availability of support services including anesthesia, cleaning and maintenance staff, security personnel, and admitting and financial services support to name but a few. The impact on the nature and style of the daily practice of medicine by pediatric gastroenterologists also might be adversely affected. Physicians, nurses, endoscopy assistants and ancillary personnel each are unlikely to be eager to consider adding evening and weekend clinics and procedure blocks to already hectic professional and personal schedules. Nevertheless, a formal evaluation of the merits of instituting a patient and family charter should be considered because it is timely (N Engl J Med 2000;342:1663–4) and likely to be promoted by the parents and families of the patients who are cared for in our practices.

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