The Current State of Patient and Family Information About End-of-Life Care
University of Pennsylvania
When faced with a diagnosis of cancer, many people respond by gathering information about the cause of their ailment, their treatment options, and advances in medical research. They hope to become better educated about their disease, wanting to know what to expect and better ways to fight it. Patients can cull this information from any number of sources, including personal discussions with health professionals, family, friends, and religious leaders; printed materials in libraries or physician offices; telephone hotlines; mail order; and increasingly, the World Wide Web. 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.
The National Cancer Policy Board has placed a high priority on improving the care received by cancer patients as they enter the terminal phase of their disease. One highly relevant factor in ensuring such quality care is the availability, nature, and delivery of information about end-of-life issues. People with cancer confront very different issues in their end-of-life care than they faced during the primarily curative phases of their cancer treatment. In addition to an emphasis on symptom management and quality of death, novel practical and psychosocial matters emerge. For example, eight
clinical symptoms are frequently associated with advanced cancer and the stages approaching death—pain, nausea and vomiting, fatigue, anorexia, confusion or delirium, anxiety, depression, and insomnia (Portenoy et al., 1994) —so their alleviation grows in importance for patients at this stage. Moreover, the approach of persistent disability or death requires decision-making on matters not purely medical, including advanced directives and home care options, sources of psychosocial support, burial arrangements, estate planning, and preparations for loved ones’ grief and bereavement. Handling these issues with appropriate, honest discussions in anticipation of their arrival—not based on unfounded assumptions or after the fact— can help ensure that they are managed as smoothly as possible and in accordance with the patient’s wishes. To accomplish this goal, patients and their family members must be well informed and well educated about the experience of dying and the end-of-life care options open to them.
This chapter surveys the sources of information available to cancer patients and investigates the extent to which these sources adequately address the concerns faced by cancer patients whose survival is limited. It then identifies the barriers to dissemination of information and patient education about end-of-life issues and makes recommendations for future initiatives to resolve the information gap between cancer cure and cancer death.
ACQUIRING END-OF-LIFE INFORMATION FROM HEALTH CARE PROVIDERS
Health Professional Resources
Patients first learn of their cancer diagnosis from their physicians, and then depend on them to monitor the progression of the disease and efficacy of treatment. It is natural, therefore, that the physician stands as the primary outlet for questions relating to symptoms, therapeutic options, and outcomes of cancer. Oncologists are involved in the care of most cancer patients at some point, but primary care physicians and other specialists provide a great deal of their care at various points during the illness, during recovery, and throughout survivorship (IOM, 1999). Nurses, social workers, and spiritual leaders are among the other health professionals who also deal directly and frequently with cancer patients about end-of-life care.
The dynamics of these patient-provider interactions depend on where they take place. In community physicians’ offices, patients are likely to spend more time talking directly to their personal physician or to a limited number of nursing specialists. In larger institutions such as those that the National Cancer Institute (NCI) 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
survey of a dozen cancer centers reveals that most discussion of end-of-life issues occurs in face-to-face conversations between the patient and the patient’s social worker. At Johns Hopkins University, for example, a social worker is assigned to a particular patient at his or her first visit and maintains this contact over the course of the patient’s illness (Nye, 1999). The two most significant end-of-life matters that lie outside the realm of social services at these centers are spiritual concerns, which are handled by the chaplain service or the person’s own religious leader, and specific medical questions, which are addressed either by the patient’s physician or by the appropriate specialist. Most institutions have a “pain team” of physicians and nurses with special expertise in pain control, and some centers go beyond that—in addition to its Pain Management Center, the Jonsson Comprehensive Cancer Center at the University of California, Los Angeles (UCLA) offers a Non-Pain Symptom Management Center focused on fatigue, nausea, depression, and other symptoms (Abe, 1999).
To complement the personal interactions between patients and their health providers at large centers, the NCI has instructed all designated cancer centers to name one of their staff members as the official “patient educator” (Crosson, 1999). The NCI Office for Cancer Information, Communication, and Education (OCICE) has formulated a set of guidelines, Guidelines for Establishing Comprehensive Cancer Patient Education Services (NCI, 1999, 36 pp.), to guide these educators in developing local resources for cancer patient education. In addition, the OCICE distributes a resource list to all these educators listing available learning tools, and it convenes annual meetings to discuss advances in patient education (Crosson, 1999). 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).
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. Reports indicate that patients’ experiences with cancer are often characterized by uncertainty and ambiguity (Yates and Stetz, 1999). Why are patients not receiving this information?
One explanation is that they are not asking for it. Physicians report that it falls on them to initiate discussions about terminal care, indicating that patients are reluctant to bring up the topics of death and dying in face-to-face conversations (Pfeifer et al., 1994). This reluctance is partly attributable to the general cultural attitude that rejects death as an option, leading to strong feelings of denial or, at the very least, making discussions about
death and dying uncomfortable for patients and their families. In addition, patients’ personal views of their health and medical prognosis influence their avoidance of such discussion. A paper from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) indicates that patients’ estimates of their prognoses influence their personal treatment preferences and that patients generally overestimate their chances for survival (Weeks et al., 1998). If patients and their family members do not realize that death is approaching, they cannot be expected to be active participants in such discussions with their health care providers. A thin line exists in the minds of patients and health professionals between genuine hope and pragmatic acceptance of death and disability.
Recent studies indicate that even when patients and their family members are fully educated about their end-of-life options, they can misunderstand the information they are given (Smith and Swisher, 1998; Tattersall et al., 1994). For example, even after much publicity and laws mandating the discussion of advanced directives with hospital patients, studies have indicated that many patients do not know what advanced directives are and why they matter in end-of-life situations (IOM, 1997). Some factors contributing to this misunderstanding have already been identified, including the stress and anxiety surrounding the communication of information about death, patients’ denial of their health status, and health providers’ tendency to use technical jargon without further explanation (Tattersall, 1994). At the other extreme, patients can feel confused or overwhelmed if they receive information from too many sources, for example, lectures and informational materials from the physician, the nurse, the social worker, and the patient educator. It is important for health care professionals not only to communicate end-of-life issues, but also to ensure that the people on the receiving end of the discussion can digest what is being said.
A second major reason for the failure of these health provider resources to inform patients about end-of-life issues is the inadequate general implementation of many of these patient education initiatives. For example, the NCI patient educator program does not provide additional funds to the cancer centers for the program (Crosson, 1999). 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. Many physicians and nurses will admit that these forms are often handed to newly admitted patients among a large stack of paperwork with little explanation. In this milieu, it is no wonder that these patients, even after signing an advanced directive, might still claim no knowledge of what one is.
Finally, even though many NCI-designated cancer centers might adver-
tise themselves as extremely effective sources of patient education and information, the number of people who have access to these institutions is limited. The NCI reports that 80 percent of terminal cancer patients are cared for in community hospital settings (Crosson, 1999). Also, the 58 NCI-designated centers are not uniformly distributed throughout the nation, representing only 29 states and the District of Columbia. Therefore, the great majority of dying cancer patients cannot or do not have access to their resources. Calling or mailing these centers is not an option: an informal telephone survey of the centers indicated that the great majority of them are currently reluctant (or unable) to provide information to outsiders who are not, or have not been, patients at their institution.
The current deficiencies in communication between patients and their physicians about end-of-life issues have many other origins. Poor provider communication skills and knowledge of end-of-life issues, and a health care market that discourages referrals to hospice and rewards medical procedures and treatments over cognitive therapy, are also sad, but true, reasons that keep patients out of terminal care. These issues lie outside the scope of this chapter, however.
One important way to resolve these deficiencies in patient-provider communication is for patients to become better information consumers. 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. They will not only engage in discussions they might not have otherwise, but they will also try to overcome ambiguities or misunderstandings that currently can prevent the execution of superior end-of-life cancer care.
Accomplishing this educational effort will be complex, but some prototypical initiatives are already under way. The Robert Wood Johnson Foundation (RWJF), through its “Last Acts” program, is funding projects aimed at consumer empowerment. Among other programs, Last Acts is currently supporting a consultant to help plan public engagement initiatives in end-of-life care, the development of a public television series on end of life, and a public education effort to promote a long-term care system to “allow aging with dignity” (RWJF, 1999). Another methodology is found in the Conquering Pain Act of 1999, a proposed amendment to the Public Health Service Act, which would ensure that all materials distributed on pain management include language, where relevant, to inform people that they should “expect” to have their pain managed (U.S. Congress, 1999a). Work-
ing through these and other proposed methodologies, we can begin to impart the need for terminal or disabled cancer patients to seek out proper education on end-of-life issues.
In addition, the NCI and the 58 cancer centers could expand their educational resources. The NCI and many centers have the institutional resources to become focal points of vigorous patient education efforts. The NCI is already taking some steps in this direction. The OCICE is currently beginning work with the Association of Community Cancer Centers to expand the reach of its educational initiatives (Crosson, 1999). Yet more needs to be done. The NCI and the centers should better integrate and support the patient educator program, so that it can serve as an effective information-gathering tool at more institutions. They also could make their educational and informational resources more widely available, for example, to hospice patients not associated with their systems or to patients or family members who contact them over the phone or by e-mail. One way to do this would be for the NCI to make the development of these high-quality educational programs essential to a cancer center’s NCI sponsorship. This type of “top-down” policy initiative has worked before in this arena. In 1997, the Veterans Health Administration (VHA) 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). Creating model patient education programs at these centers will place institutional pressure on the smaller hospitals to improve their facilities as well.
Finally, the deficiencies in patient-provider interactions about end-of-life care must be further explored. Studies have already indicated that if patients and their family members are provided educational information by their physicians, it helps support the patient, reinforce treatment goals, and assist in managing the side effects of therapy and disease (Ferrell et al., 1995). Yet more must be learned about the preferences and attitudes of terminal cancer patients regarding the discussion of death and dying, such as when in the course of their treatment these issues are best broached, how the information can be imparted most clearly, and whether they really understand what they are being told. It is also important to analyze ethnic and cultural diversity in the way people are most comfortable receiving this information and how these differences influence the effectiveness of educational efforts.
Armed with this information, cancer centers, professional organizations, and patient educators can begin to bridge the communication gap
between health professionals and patients. Physicians and researchers are already making advances in this field. The NCI and RWJF are supporting various studies, including ones to research Americans’ values regarding end-of-life care and to survey the educational needs of patients and their family caregivers regarding pain management (Ferrell et al., 1999). Some enterprising oncologists and hospital staffs are developing new communication tools, such as videotapes or personalized audiotapes, to make patients more aware of end-of-life issues and their health status in general (Ryan, 1999; Tattersall et al., 1994). The NCI, RWJF, and other institutions that fund research initiatives should place more emphasis on investigating patient preferences for learning about terminal and palliative care and novel techniques for improving the flow of information.
ACQUIRING END-OF-LIFE INFORMATION FROM THE NCI AND ACS
Terminal cancer patients or their family members who want more specialized, in-depth, or hands-on information about certain aspects of their illness, their future expectations, and their end-of-life care look to sources outside the immediate interactions with their health care providers. The materials they obtain reinforce their personal discussions, educate family members who might not be able to meet face-to-face with the providers, and provide needed psychological comfort to patients overwhelmed with their terminal prognosis. The NCI and the American Cancer Society (ACS) 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), and from some other more grassroots or specialized cancer groups. The preponderance of these materials deals with cancer prevention, basic background descriptions of various cancers and their treatments, clinical trials, and survivorship concerns. Only recently have the NCI and ACS begun publishing materials related to end-of-life issues.
The NCI’s primary patient-oriented document dealing with terminal cancer is Advanced Cancer: Living Each Day (NCI, 1998, 46 pp.). This booklet is divided into four sections: living each day, the personal reaction of cancer patients to their terminal prognosis, the reactions of their friends and family, and choices for care. The first three sections succinctly describe many of the psychosocial concerns of end-of-life care, while the final section tackles more practical issues such as introducing patients to hospice
care, advanced directives, family planning, and the Patients’ Self-Determination Act. The booklet concludes with a list of supplementary resources and personal checklist and inventory sheets for the patient to use. The NCI publishes other booklets for some of the classic end-of-life concerns: Eating Hints for Cancer Patients (NCI, 1999, 60 pp.), Get Relief From Cancer Pain (NCI, 1994), Understanding Cancer Pain (NCI, 2000), and Pain Control (NCI, 2000, 57 pp.), published in conjunction with the ACS.
NCI also offers patients and their family members collections of photocopied pages—to be received by mail or at a fax machine—from NCI’s Physician Data Query (PDQ) database and its collection of “Cancer Facts” sheets about various types of cancers and aspects of disease. One section of the PDQ database deals with “Supportive Care Topics” and covers all eight of the Memorial Symptom Assessment Scale end-of-life-related symptoms. In addition, Cancer Facts information sheets exist about hospice care and national and local cancer support organizations.
Finally, the NCI oversees the Cancer Information Service (CIS), a group of 19 resource centers across the country that patients and/or their family members can reach either locally or by calling 1–800–4-CANCER. 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). CIS telephone representatives mail patients NCI-produced booklets, PDQ printouts, or Cancer Facts sheets, as well as any other information deemed appropriate to the individual patient’s situation (e.g., chapters from textbooks, ACS resources).
In addition to distributing NCI material, the ACS offers its own booklets, including one directed at end-of-life care, called Caring for the Patient with Cancer at Home (ACS, 1998; 121 pp.). This booklet focuses on helping loved ones and patients themselves manage the symptoms associated with end-stage cancer. Other chapters explain the function and significance of health insurance, hospice care, and certain signs of approaching death. The book is written in simple language with one explanatory section for each topic, followed by points of what to do and what not to do. The ACS also offers source packs of information tailored for individual educational needs by counselors assigned to those who contact the ACS (either by calling 1–800-ACS-2345 or e-mailing ACS from its Web site). These packets can include chapters from its booklets, as well as more extensive notes on “Hospice Concept” and “Coping with Grief and Loss.”
Despite the NCI’s and ACS’ recent efforts, these organizations still inadequately address the range of terminal cancer patients’ end-of-life concerns. One significant issue is the sheer lack of resources devoted to a topic
that, even with modern advances in medical sciences, half of all cancer patients will face. Advanced Cancer, the one NCI-sponsored booklet on end-of-life concerns, can be contrasted with the 24 booklets the NCI produces on different types of cancer. The notion that one treatise can satisfy educational needs for the varied types of death and issues related to death is as incongruous as producing a booklet called Solid Tumors to provide background information on cancers of the breast, gastrointestinal (GI) tract, lung, and so forth. In addition, although the NCI reprints some of its booklets in Spanish, nearly all of these end-of-life materials are currently available only in English. This puts an increased burden on patients of Hispanic, Asian, or Russian descent, et cetera, who must face these issues and either do not speak English or use it as a second language.
Of greater concern is the lack of end-of-life content found in books not designed specifically for terminal disease. For example, the NCI booklet, What You Need to Know About Ovarian Cancer (NCI, 1993; 30 pp.) mentions nothing about the possibility that a patient might die of an ovarian tumor. The issue of death is introduced only with suggestions to “talk with the doctor about [your] chance of recovery” and a warning that “the disease can return.” For a type of cancer often diagnosed at its late, terminal stages, this disregard for terminal or palliative care is disconcerting. ACS materials tend to be somewhat more realistic. The ACS document on lung cancer relays the generally low overall survival rates from lung cancer and, in its discussion of the treatment options for lung cancer, breaks down the five-year survival percentages at each stage. Significantly, the ACS suggests “supportive care” as a viable choice for patients diagnosed as Stage IV non-small cell lung cancer and mentions the importance of treating pain and weight loss. Still, for another cancer that is most often diagnosed at its later stages, these paragraphs are given less space than highly investigational treatments such as “immunotherapy” and “gene therapy” and thus underemphasize the importance of end-of-life care. The supplementary materials that the NCI and ACS offer to deal with other end-of-life symptoms (e.g., pain and loss of appetite) 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.
The NCI and ACS materials are also filled with troubling “symbolic language.” The title of the NCI book on terminal care, Advanced Cancer: Living Each Day, is just one illustration of how the NCI and ACS use oft-misunderstood euphemisms when discussing death and palliative care. Although this inclination in part reflects the feelings of patients and society in general, by evading straightforward discussions of these topics, the NCI inadvertently helps propagate an ignorance of the real issues. Another aspect of this symbolic treatment of death can be seen in the NCI’s and ACS’
separation of their cancer information books into books about the disease and its treatment and those about death and palliative care. By separating cancer care in the eyes of patients into treating the disease, on one hand, and dying from it, on the other, these documents can subvert the notion of continuity of care—quality treatment by trained professionals from diagnosis to conclusion, no matter what that outcome may be. Any model of care should include all potential outcomes of their disease, so that patients understand they will not be abandoned if their curative treatment is unsuccessful, and this should be emphasized in the literature they read.
Finally, materials produced by NCI, ACS, and other organizations about end-of-life care are useful only if they find their way into the hands of patients and their families. Of the 235,000 calls that NCI’s CIS received in 1998 from patients and their family or friends, only 6,065 (2.5 percent) of these concerned metastatic cancer and only 798 callers (0.34 percent) callers specifically inquired about hospice (Thomsen, 1999). Moreover, it appears that patients facing death or disability may not receive palliative care and end-of-life materials unless they explicitly ask for them. A caller contacted both the NCI and the ACS hotlines to acquire information on treatment options and expectations on behalf of an 85-year-old family member just diagnosed with inoperable non-small cell lung cancer. 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. A similar information request was made. Although the organizations now sent their resources on pain management, neither organization sent its specific end-of-life materials. Both of these situations present strong indications that death may be approaching and certainly suggest the possibility of treatment with palliative intent. Yet, in these instances, NCI and ACS cancer specialists are put in a difficult and delicate situation because they cannot determine how callers who do not explicitly ask for end-of-life care materials will respond to being sent such information unsolicited. Still, the end result is that necessary information is not communicated.
The NCI and ACS are currently working to improve their end-of-life materials; the NCI is revising Advanced Cancer (Ades, 1999; Crosson, 1999). However, these organizations could spearhead a more comprehensive evaluation of their extant materials, analyzing the amount and quality of information relayed to patients, as well as the more sweeping notions of symbolic language and continuity of care. The results should be incorporated into a list of specific concerns and recommendations regarding the
adequacy of the end-of-life and palliative care content and the symbolic language of the NCI and ACS materials. Through this effort, NCI and ACS should be inspired to develop more realistic and culturally relevant information booklets—translated, if there is sufficient demand, into Spanish and other languages—that are more responsive to the needs of cancer patients.
The NCI and ACS must subsequently intensify their efforts to distribute these supplementary materials so more patients get them. By targeting community oncology offices, hospitals, and support groups, in addition to the larger NCI-sponsored cancer centers, these organizations can use their considerable resources and influence to support the dissemination to patients of materials that address end-of-life and palliative care. As indicated in the previous section, this information may represent the first time some patients or their family members hear about hospice, advanced directives, and other topics and might therefore help stimulate discussion between cancer patients and their health care providers.
Improving the quality of communication about end-of-life issues from the NCI and ACS hotlines is one important way to support this information distribution effort, because records show that hundreds of thousands of people and patients call these hotlines each month (Ades, 1999; Thomsen, 1999). Members of the NCI and ACS support staff need to recognize better when palliative care or end-of-life information is appropriate and should perhaps be given methodologies by which to start discussions with callers on these issues. The NCI and ACS should develop more specific guidelines for these specialists and counselors that address the need for education about death and dying, in addition to diagnosis and treatment concerns.
ACQUIRING END-OF-LIFE INFORMATION FROM OTHER ORGANIZATIONAL RESOURCES
Numerous other organizations supplement and complement the NCI and ACS in their efforts to educate cancer patients and their family members. All of these groups issue their own educational materials (and may distribute NCI and ACS booklets as well), and some are also designed to set up patients with “peer counselors,” other non-health professionals who have survived the patients’ particular cancer diagnosis. Among their many topics, they handle end-of-life care issues.
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
topics as coping strategies, pain, and cancer fatigue. Cancer Care distributes four “Cancer Care Briefs” —three- to five-page pamphlets on issues in cancer treatment, prevention, and resources—to address different concerns of people with advanced cancer and a number of others specifically directed at symptom management. Cancer Care can also disburse information from a rich library of practical, psychosocial, and medical information produced by its specialists, or acquired from other institutions, about palliative care and end-of-life issues.
Many groups also exist to inform and advocate on behalf of patients with a particular type of cancer (e.g., the National Association of Breast Cancer Organizations [NABCO], the Alliance for Lung Cancer Advocacy, Support, and Education [ALCASE], and the National Kidney Cancer Association [NKCA]). Some also offer resources to terminal patients with a particular cancer. NABCO, for one, compiles a list of manuscripts that deal with “recurrence and metastatic breast cancer” and will give inquiring callers directions on how to obtain these materials. ALCASE has published a 12-chapter Lung Cancer Manual (200 pp.) that integrates palliative care and end-of-life issues into all aspects of its discussions. NKCA’s We Have Kidney Cancer (1991, 52 pp.) provides background information on kidney cancer cause and treatment and includes a chapter on dealing with death. In addition, NKCA publishes Reflections (1997, 62 pp.), a physician-written guide to end-of-life issues for patients and their families, which it will also freely include in mailings to interested parties.
Relatively few organizations dedicate themselves specifically to end-of-life concerns in cancer care. One major institution, the National Hospice Organization (NHO), 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. They offer support, advice, and a few supplementary publications on pain control (though most of their written materials are directed at health care professionals). Some initiatives are under way to create more such resource centers that specifically focus on end-of-life care. For example, the proposed Advance Planning and Compassionate Care Act of 1999 would establish an information clearinghouse and telephone hotline for end-of-life decisionmaking under the auspices of the Department of Health and Human Services (U.S. Congress, 1999b).
Pharmaceutical companies who manufacture drugs used in terminal care have also developed educational materials. Ortho Biotech, which distributes the cancer fatigue agent Procrit (erythropoietin), has developed a document for patients on psychological and practical tips to help overcome cancer fatigue (one of the eight primary end-of-life symptoms). Roxane
Laboratories—makers of morphine, oxycodone, and clonidine anti-pain medications—runs an on-line Pain Institute to answer patient questions about pain control. Janssen Pharmaceutica (which makes Duragesic, another alternative for pain management) also offers articles on recent advances in pain control and tips for people with chronic pain on its Web site.
The major drawback to the effectiveness of these organizations is that not enough cancer patients use them. A 1992 study of cancer survivors revealed that only 11 percent contacted cancer organizations (including the higher-profile NCI and ACS) after their diagnosis for information or support (Hewitt et al., 1999). Potentially fewer patients use them for questions specifically relating to end-of-life care. The NABCO information services reveal that although they get anywhere from 20 to 100 calls a day, at most one or two callers a month request hospice or end-of-life care information (McClure, 1999). The NKCA reports that the majority of its contacts are with newly diagnosed renal cell carcinoma patients and that most requests for its Reflections booklet come from the medical community (Dison, 1999). There are numerous explanations for these findings. Many of these organizations are small, not-for-profit entities, and so cannot take the steps needed to increase their national exposure. Moreover, patients and their family members might not think to contact these organizations because they believe—justifiably or not—that their personal physician or social worker has provided them with all the relevant information about their disease, treatment options, and what to expect in the future. Furthermore, patients may be in denial or feel self-conscious about their health status and not want to share information they consider private outside the provider-patient relationship. It is hard to reach out for new information when overwhelmed with recent bad news.
Another significant problem is that these organizations vary widely in how well they address end-of-life issues. 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) publishes A Primer of Brain Tumors: A Patient’s Reference Manual (1998, 140 pp.)? which never mentions palliative care or the potential for disability and death—not even in the final five page section on “Comfort and Coping.” The National Ovarian Cancer Coalition (NOCC), an organization dedicated to “providing complete and accurate information regarding ovarian cancer,” sends inquiring patients a large packet of materials on ovarian cancer. However, end-of-life issues are addressed either obliquely, such as by including an Ortho Biotech pamphlet on cancer fatigue, or not at all, as in the NOCC publication Myths and
Facts About Ovarian Cancer: What You Need to Know (1997, 64 pp.)? which does not discuss palliative care.
In addition, these organizations have limited abilities to adapt the information they distribute to the individual needs of patients. An informal survey indicated that most patients who call, no matter how advanced their condition is, receive the same introductory packet and pamphlets (or a small variation thereof). As a result, while brochures offering hope and goals for living with cancer are appropriate to patients with early-stage disease, these same “educational” materials are being sent to patients with advanced, recurrent, or terminal cancer. This is indicative of a more general inability of some of these organizations to deal with the informational needs of dying or disabled patients.
Perhaps partly as a result of the inadequate information emerging from these sources, pharmaceutical companies that dispense palliative care drugs have started developing their own educational materials. However, letting companies that have a financial stake in end-of-life care be a primary source of education and background information about these concerns can be problematic. For example, the nature of the information produced will inherently be biased and focused, because a pharmaceutical firm that produces an antiemetic has little economic reason to alert people to cancer fatigue, and vice versa. As a result, patients get exposed only to a very piecemeal approach to palliative care education.
Many of these groups should consider increasing their exposure if they are going to be helpful in informing patients and their families about end-of-life care. If more terminal cancer patients contacted Cancer Care, Inc., for example, they could use its many useful resources—both written and verbal—to learn about the parameters of their palliative and end-of-life care. This goal can be pursued on many different fronts. Research on cancer patient preferences and information-gathering behavior should be undertaken, with an emphasis on surveying patients for their views of these organizations and trying to learn how to increase patients’ use of them. In addition, supporting joint educational initiatives among these various grassroots, or cancer-specific, organizations and the NCI can plug these groups into a wider range of financial and institutional assets. 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
groups, as well as ways in which they can help educate patients about the various aspects of their disease, including end-of-life care.
Equally as important as raising popular consciousness about these organizations is helping them create comprehensive materials that address palliative care and end-of-life issues and integrating materials into their current cancer diagnosis and curative treatment resources. This can be accomplished in different ways. The RWJF is currently supporting a project to create a multimedia curriculum on end-of-life issues for grassroots organizations (RWJF, 1999). Also, these organizations can be encouraged to work with specialists in terminal disease when developing resources. Producing these materials will also give these groups a degree of latitude in the informational material they make available to patients or their family members who call. In this way, the young patient newly diagnosed with a potentially incurable brain tumor will not be inappropriately inundated with end-of-life care materials when calling the NBTA, but an older patient who is more likely to face a terminal diagnosis can be properly educated about his or her treatment options and expectations.
One final objective is increased interorganizational communication. 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. For, while not every type of cancer is treated the same or results in similar psychosocial concerns, every organization that deals with cancer patients will have a certain percentage of patrons facing the prospect of disability and death. Encouraging these groups to work together to educate terminal cancer patients about these issues will stimulate further progress in this developing field.
ACQUIRING END-OF-LIFE INFORMATION FROM THE WORLD WIDE WEB
The Internet, and in particular the graphical World Wide Web, is emerging as a major source of information because it is a powerful archival medium with fast search capabilities. Cancer patients and their family members can instantaneously receive voluminous amounts of materials from sources all over the world, while conveniently (and anonymously) exploring on-line from home, work, or their local library. In addition, the interactive nature of the Web allows people to communicate with personal counselors or support groups, watch or listen to audiovisual clips, and sift
quickly through extraneous materials to find the information that fills their particular needs. As a result, many organizations and institutions have started utilizing this medium to distribute information on end-of-life cancer care issues.
Health care providers have thus far made only limited forays into cyberspace. Most independent physician offices do not integrate Web technology into their private practices. However, those physicians who are currently comfortable interacting on-line report that this communication tool allows their patients more time to ask questions and get answers about many topics, including end-of-life concerns (Davis and Miller, 1999). All of the NCI-designated cancer centers support their own Web sites, in which they detail the resources they offer and provide some basic information about end-of-life care. The Johns Hopkins Oncology Center Web site, for example, has a “Guide to Cancer Services” page, which discusses pain control expectations patients should have and the types of support services offered by the center (Johns Hopkins Medicine, 1999).
Nearly all of the cancer organizations that patients and their family members have traditionally contacted by phone or letter have now constructed Web pages to disseminate their informational resources. Some, like Cancer Care, Inc. (http://www.cancercareinc.org) and ALCASE (http://www.alcase.org), offer free on-line reprints of their publications. Others, like the National Coalition for Cancer Survivorship (NCCS) (http://www.cansearch.org), allow visitors convenient ways to order materials. 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. This hyperlink network also promotes less publicized organizations and sites that novice Web users might not find on their own. The NCCS resource database, for example, offers brief descriptions and links to organizations more specifically able to provide psychosocial support to cancer patients and those that can help deal with pain. Through this dense network, patients or their family members who reach one site can begin to broaden their expectations about the various facets of proper end-of-life care (NCCS, 1999).
For additional support, entirely Web-based sources of patient education and information have emerged. On-line clinics have emerged that offer the services of physicians to answer medical questions, as well as diagnose patients or issue prescriptions. One of them, CyberDocs (http://www.cyberdocs.com), records nearly 100,000 visitors per month, indicating its growing popularity (Melton, 1999). Among the articles on its site, to which the on-line support staff can refer inquiring visitors, are those describing hospice care and advanced directives. Other sites, such as the
University of Pennsylvania Cancer Center’s Oncolink (http://www.oncolink.com) or DrKoop.com (http://www.drkoop.com), 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.
The biggest hurdle to effective use of the Web to educate patients and their family members about end-of-life issues is access. Surfing the Internet requires a computer, a modem, and a Web browser, which can be too expensive for some people. Also, the Web has its own distinct technique and language, which is less familiar to older people, who may be uncomfortable in cyberspace (though this will undoubtedly change with the aging of those growing up with access to cyberspace). In 1998, only about 15 percent of Americans using the Internet were older than 50 (Lewis, 1998). Yet this is currently the age group most likely to be diagnosed with cancer and to face difficult end-of-life issues. Still more vexing are the statistics showing most Internet users to be Caucasian and male, indicating that Web-based resources are not reaching entire groups of people—no matter what their wealth or age. Unless these racial, gender, and age-related barriers can be overcome, it may be inappropriate to allocate time and resources to developing Internet end-of-life tools at the expense of the further development of traditional materials. At the least, these Internet-based efforts must be complemented by outreach to populations underserved by the Web.
In addition to access, a major problem is the quality of the information—when and whether to trust the information one finds. The Internet does not provide an automatic check for financial or ideological self-interest. Since there are no restrictions or protections about what information is placed on-line, people can call themselves “experts” and post information, with impunity, that may be out-of-date, misleading, or just plain false. In fact, a recent study of medical HTML (hypertext markup language) pages concluded, “The bulk of information…is of low applicability and poor quality for answering clinical questions” (Hersh et al., 1998). This limitation is exacerbated by the currently fragmented state of end-of-life information on the Web. Materials on death and dying are scattered diffusely across many different sites purporting to help inform terminal cancer patients about their options. In this milieu, it is difficult for terminal cancer patients or their family members using Internet technology to decipher
which advice about end-of-life issues is accurate and evidence based, and which is not.
At this point, with the Web and Internet technology still early in their overall development, increased research should be the main objective regarding the use of this medium to help promote quality end-of-life cancer care. More work needs to be done to identify whether terminal cancer patients and their family members utilize Web-based resources to gather information and, if so, how they can best acquire the necessary education on-line. Research-funding agencies should solicit projects that use the Web to manage end-of-life issues, while addressing pitfalls such as access, reliability of information, and security and confidentiality of discussions. Some inroads have already been made in this area—for example, the American Medical Informatics Association promulgated its “Guidelines for the Clinical Use of Electronic Mail with Patients” (Kane and Sands, 1998) —but more study of patient preferences and attitudes is necessary.
In conjunction with this research, new and innovative ways to use the Web to educate patients needing palliative and end-of-life care have to be developed. One of the primary promises of Internet technology is its ability to go beyond the traditional written materials, or telephone support, in the provision of information. For example, an Internet interactive problem-solving package for people with pain is currently under construction. This Internet modality allows patients and their family members to seek information, while concurrently getting feedback on ways to solve their palliative care problems, so that the users can learn to be problem solvers and not have to rely solely on health professionals (Loscalzo, 1999). We should not be satisfied simply with encouraging the development of Web resources to reprint current written materials and need to support similar ground-breaking ways to disseminate information on palliative and terminal cancer care.
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. Numerous avenues for contact with health professionals exist, as well as a growing library of supplementary resources available from a range of organizations and through various media. However, the fact that many dying and disabled cancer patients remain undereducated about such topics as pain man-
agement and palliative care, hospice, and advanced directives indicates that this information is not effectively reaching patients. The reasons for this failure are manifold and relate not only to the poor quality of some of the information and its dissemination, but also to the behaviors of the patients themselves.
To promote the overall quality of palliative and terminal cancer care, the extant information about end-of-life care and its delivery from health care providers, supplementary organizations, and Internet resources must be improved. Some initial suggestions to accomplish this are summarized below.
HEALTH PROFESSIONAL RESOURCES
Make patients better health consumers and raise their expectations for end-of-life care.
Develop the 58 NCI-sponsored cancer centers into models of patient education and information delivery.
Study patients’ preferences regarding the delivery of effective end-of-life care information, with an eye toward ethnic and cultural diversity in attitudes.
NCI AND ACS
Evaluate and subsequently improve extant materials on terminal and palliative care, with emphasis on cultural relevance, symbolic language, and the continuity of care.
Distribute these materials more universally.
Improve communication of end-of-life and palliative care information through the popular information hotlines.
OTHER ORGANIZATIONAL RESOURCES
Increase national exposure of these organizations as sources of patient and family information.
Evaluate and subsequently improve their educational materials to make these resources more sensitive to patients’ end-of-life concerns.
Increase interorganizational communication and association to address more effectively the concerns of all terminal and disabled cancer patients.
Point out to pharmaceutical companies the pitfalls of piecemeal, vested-interest approaches to end-of-life care education and encourage them to refocus their informational materials.
THE WORLD WIDE WEB
Study the ways in which Internet informational resources can most effectively be made available to terminal cancer patients and their families.
Develop innovative uses of Internet technology to impart information about end-of-life concerns.
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