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Currently Skimming:

4 The Current State of Patient and Family Information About End-Of-Life Care
Pages 132-152

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From page 132...
... The question is, How well does this information address patients' full range of options during the continuum of their cancer care, from diagnosis and treatment to survivorship or end-of-life concerns? Unfortunately, these materials emphasize curative treatment and living as a cancer survivor to the relative exclusion of palliative care and end-of-life issues, two significant aspects of cancer care.
From page 133...
... officially designates as cancer centers, patient care is usually managed by health care teams of physicians in different specialties, as well as nurses, social workers, and students. An informal
From page 134...
... At institutions such as Fox Chase Cancer Center, these educators are active in keeping patients informed about such matters as hospice and burial arrangements (Herman, 1999~. Shortcomings Despite the presence of multiple outlets for discussions with trained health professionals about end-of-life concerns, patients and their families remain undereducated about hospice care, symptom management, and psychosocial realities.
From page 135...
... As such, the proficiency and level of involvement of these educators can vary widely; personal interviews with people at these institutions suggest that the directors of some cancer centers do not even know patient educators exist. Another illustration of this deficiency can be found in the execution of advanced directives, mandated by law in some states and by hospital policy in some institutions.
From page 136...
... We must work to raise expectations about the education patients should receive when their cancer is no longer curable. If the public is aware of palliative care and end-of-life benefits and, as a result, expects to learn about issues such as pain control or advanced directives, then patients and their family members will solicit this information from their health care provider.
From page 137...
... commenced a quality performance measure mandating comprehensive palliative care planning for patients diagnosed as terminally ill, which encompassed six different factors, from advanced directives to pain and symptom management. As a result, the hospitals in the network individually took measures to improve their performance, and an external chart review analysis of VHA patients showed an increase in compliance with the national end-of-life care plan from 52 percent in late 1996 to 94 percent by mid-1999 (Ryan, 1999~.
From page 138...
... write the majority of the supplementary educational materials for cancer patients in the form of booklets, pamphlets, and fact sheets. These products can be obtained at no cost by direct solicitation, in waiting rooms, in the patient resource rooms that exist at some large cancer centers (such as the Dana Farber Cancer Institute and Fox Chase Cancer Center)
From page 139...
... These centers are independent but can be associated with major cancer centers (e.g., the center in Buffalo is attached to the Roswell Park Cancer Institute)
From page 140...
... also mention little about death and dying. The 1997 booklet When Cancer Recurs: Meeting the Challenge Again discusses pain control during treatment, but mentions nothing about palliative care more generally.
From page 141...
... Neither organization sent its designated palliative care or end-of-life materials. A subsequent call was made regarding a 78-year-old family member with inoperable non-small cell lung cancer, whose disease was "progressing" after three months of chemotherapy and radiation and who was experiencing a lot of pain.
From page 142...
... General cancer organizations have grown out of grassroots advocacy efforts by citizens and private institutions, and these organizations devote some resources to end-of-life care issues. Cancer Care, Inc., in New York, for example, offers written materials, personal support from trained social workers, and telephone educational programs and conferences on such
From page 143...
... , produces informational pamphlets on hospice care for patients or their loved ones who contact the NHO with questions. The American Pain Society, Wisconsin Cancer Pain Initiative, and City of Hope Pain/Palliative Care Resource Center are among the groups that advocate for the relief of pain and thus serve as important informational resources for terminal cancer patients.
From page 144...
... As indicated above, Cancer Care, Inc., NABCO, ALCASE, and NKCA proficiently integrate palliative care information into all their materials. On the other hand, the National Brain Tumor Association (NBTA)
From page 145...
... For example, the NCI's CIS and Cancer Care, Inc., have developed a referral partnership, where NCI cancer information specialists refer patients who need support for psychosocial issues to a Cancer Care social worker, while the Cancer Care staff refers calls requiring technical information to the NCI (Thomsen, 1999~. Steps must also be taken to teach health providers, community hospitals, and cancer centers of the existence and availability of these
From page 146...
... Sharing knowledge and information among the organizations for example, such as about new methods of increasing exposure, educational tools, and untapped funding resources will help each group individually pursue its goals of patient education and advocacy. This is especially true with respect to terminal care and the promotion of patient and family education about end-of-life issues.
From page 147...
... Cancer Care, Inc., also provides on-line support groups. Many organizations, in addition to listing their own information on their sites, supply detailed lists of other on-line resources and hyperlinks to those Web pages, to help patients and health professionals navigate more intelligently around cyberspace and find the information they need.
From page 148...
... , do not offer interactive services, but instead provide the latest information and hyperlinks for cancer patients. A search for "end-of-life issues" on the Oncolink page, for example, led to on-line book reviews of palliative care handbooks, hospice information sites, video downloads with such titles as "Focus on the Final Months," and numerous related articles and hyperlinks.
From page 149...
... We should not be satisfied simply with encouraging the development of Web resources to reprint current written materials and need to support similar groundbreaking ways to disseminate information on palliative and terminal cancer care. CONCLUSION The current state of patient and family informational resources about end-of-life cancer care offers many opportunities for terminal cancer patients to obtain the education they need about the medical, practical, and psychosocial concerns that accompany disability and death.
From page 150...
... To promote the overall quality of palliative and terminal cancer care, the extant information about encl-of-life care and its clelivery from health care providers, supplementary organizations, and Internet resources must be improved. Some initial suggestions to accomplish this are summarized below.
From page 151...
... Director of Social Work, Fox Chase Cancer Center. Personal communication, June 15, 1999.
From page 152...
... Chief, Cancer Information Service, National Cancer Institute. Personal communication, August 3, 1999.


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