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Chapter 17: A Mother’s Perspective 315 believe this occurs regularly, and suspect that doctors need to protect themselves from the family’s emotional response and their own feelings of grief. But families desperately need support at this time, and are deeply appreciative when physicians are able to empathize with them during the hardest times. Attitudes and Behaviors Which Do Not Help Family members are well aware of physicians’ behaviors which have not been helpful to them. The doctor who knows little or nothing about Fanconi anemia and has no time to become informed is not helpful. Doctors who appear cold, distant, and unsympathetic do not gain the family’s confidence. Physicians who speak in complicated medical terms, have little time to answer questions, are rushed or impatient, deal with families in a condescending way, or do not consider the family’s input are not appreciated. Many parents tell stories of doctors who informed them that their child would probably die within a specific period of time or before reaching a certain age. These comments have devastated parents and have frequently proven to be untrue. Too much is unknown about how any one individual will progress. The positive impact of future therapies is obviously unknown and cannot be addressed in the medical literature available today. Doctors who are noticeably missing when bad diagnostic news is delivered or who never come to see a dying patient bring additional pain to a grieving family. The physician with endless time to research an orphan disease and provide ideal patient care may be difficult to find in these times of work overload, HMOs, and pressures from other patients equally in need of quality care. But having dealt with this illness for over twenty
316 Fanconi Anemia: Guidelines for Diagnosis and Management years, this writer has experienced enormous variance from one physician to another in terms of ability to work with families burdened with a life-threatening, chronic illness. Families should try to locate physicians who can best meet the patient’s physical and emotional needs. Physicians should become more aware of and responsive to the needs of this unique group of families.
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Chapter 4 Gastrointestinal, Hepatic
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Chapter 7 Endocrine Disorders in Fa
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Chapter 9 Matched Sibling Donor Hem
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Chapter 12 Novel Treatment Options
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Chapter 13 Head and Neck Squamous C
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