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The Cancer Survivors' Bill Of RightsBy: Robert W. Griffith, MD
This article is adapted from a publication by Natalie Davis Spingarn in the Patients Network, an online magazine that's part of the International Alliance of Patients' Organizations (see link below). Ms Spingarn drafted the first Cancer Survivors' Bill of Rights in 1988, at the request of the American Cancer Society, and wrote an updated version in 1999. Here is the latest version:
This 5-point Cancer Survivors' Bill of Rights is intended to call public attention to survivor needs, to enhance the quality of cancer care, to empower cancer survivors, and at the same time bring greater satisfaction to them and their physicians, employers, families, and friends:
1. Survivors have the right to continuous lifelong medical care, as needed. The physicians and other professionals involved should make every effort to be: sensitive to cancer survivors' lifestyle choices and their need for self-esteem, dignity and privacy of the information trusted to them;
careful, no matter how long these patients have survived, to take symptoms seriously and not to dismiss aches and pains, for fear of recurrence is a normal part of survivorship;
vigilant to watch for any long-term and late effects of cancer and its treatment in follow-up clinics and offices;
informative and open, providing survivors with as much or as little candid medical information as they wish, and encouraging informed participation but not expecting survivors to manage that care on their own;
knowledgeable about counseling and rehabilitation resources, and willing to refer survivors and their families as appropriate for emotional support and therapy aiming to improve the texture as well as the quantity of time that is theirs to live.
2. No matter in which setting their care is offered -- be it the fee for service or some sort of managed care system -- survivors have the right to quality care emphasizing:
informed choice - choice of the setting in which care is delivered, choice of primary physicians and specialists delivering that care, as well as choice of appropriate, effective and safe treatments (including ongoing clinical trials);
efficient yet humane management of such unfortunate by-products of disease as fatigue and pain - pain control management, for example, which approaches survivors more as partners in identifying the proper amount of medication needed at any given time than as potential drug addicts;
appropriate use of hospital and other facilities, wherein cost effectiveness and patient-centered care are balanced so that no survivor is dismissed -- after a mastectomy, for example -- unable to care for her or himself or secure the care needed to avoid dangerous and painful situations;
constant respect for survivors' wishes as to when and how to discontinue treatment should that time arise, including the scrupulous honoring of "living wills" and similar documents.
3. In their personal lives, survivors, like other Americans, have the right to the pursuit of happiness. This means they have the right:
to talk with their families and friends about their cancer experience if they wish, but to refuse to discuss it if that is their choice, and not to be expected to be more upbeat or less blue than anyone else;
to be free of the stigma of cancer as a "dread disease" in all social relations, wherever they may take place -- from home to work or market-place;
to be free of blame for having the disease and of guilt for having survived it;
to participate in support groups and other survivor support and/or advocacy activities as they wish, for in such settings they usually feel less isolated, more informed, and more able to express their feelings, be they feelings of hope or of despair, without fear of being regarded as "bad" or "ungrateful" or simply "uncooperative" patients.
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